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JOURNAL: My gluten testing story



Day 1 of My Journey Backwards Into Gluten: and Why!

As I write this, my brain is in a fog, I have a vague pain in my upper left abdomen, there is a migraine coming on,  and have general fatigue. I feel as if my German Shepherd is sitting on me and I can't get up. Yep, I was glutened. On purpose. Why, for goodness sakes??
Today, February 17th, 2012 marks the day that I reintroduce gluten to my body, and I will do so everyday for the next month, because I want to be tested for Celiac Disease by my doctor. It is pointless to be tested if you are on a gluten free regimen, because your body has healed from the inflammation and damage that gluten causes. I used to think it didn't matter whether I had an "official" diagnosis or not, since the treatment for both Celiac and gluten sensitivity is the same: a gluten free diet. There was no doubt that I react to gluten, especially after being free of it, which was enough for me to know I needed to be gluten free. However, I had an epiphany.  As I look at my anemic 21 year old daughter, Krista, with  vague fatigue, muscle and joint pains, ADHD, and digestive issues, and seeing my teeny, tiny 12 year old granddaughter Sierra, who is in the 1% of her height and weight group for her age, (while her sister and all of my children were usually always in the 90 percentile) - who has many classic Celiac and/or gluten sensitivity symptoms besides poor growth: abdominal pains, bloating, gas, diarrhea, reflux, poor appetite, lactose intolerance, headaches,  and has ADHD -  I need to do this, for them, it is something of a legacy I can leave behind in case I am not around forever, as none of us are, but this is more of a possibility  given my recent Breast Cancer diagnosis.Celiac disease is genetic. If I have it, there is a chance my children and grandchildren have it or will develop it later. If you have celiac disease, but do not get it diagnosed and just assume it is non-celiac gluten sensitivity, your whole family can be impacted by this choice. For all four of my adult children, and my granddaughters, and all of their future prodigy, because if I have a definitive diagnosis then the chance they have it just went up by 50%, and that may get their attention. Sierra's mom is a wonderful mother, and wants only the best for her children, and  she would not have invasive testing done on her daughter just on my recommendation. Who really wants to be poked and prodded anyway, at least not without a darn good reason?  So, my hope is that, with knowing whether I am Celiac or gluten sensitive, and at what % risk that puts my children/grandchildren, they will have that darn good reason to look into it. I hope and pray. I feel like Krista and Sierra are at the very least sensitive to gluten, if not  Celiac, and I want them to feel better, reach their growth potential, and feel normal: something they probably never have felt!  I also want for all of my children and grandchildren to have answers I never had until my 5th decade, and hopefully spare them all of the frustration and misdiagnoses  that all of us who need to be gluten free have experienced.  So, I am taking a journey backwards, into gluten-infested waters, so to speak, for my family's sake. Now it is worth noting that a person can be tested for the celiac gene at any time, whether or not consuming gluten, but possessing the gene may or may not cause symptoms. The symptoms of celiac disease or gluten sensitivity occur due to the inflammation on the gut caused by gluten consumption. Here is a great article by the University of Chicago on genetic celiac testing.
First-degree relatives of people with celiac disease (children, parents, and siblings) have a 1 in 22 chance of developing celiac disease in their lifetimes. Furthermore, the prevalence of celiac disease in children of celiac patients is approximately 15%. If I have Celiac, then my daughter and her children could have the genes for celiac disease, and  they should have blood tests at regular intervals to see whether celiac disease has developed, even if they have no obvious symptoms. (The sooner it’s diagnosed, the lower their risk of serious complications!) Now it is entirely possible that I do not have Celiac Disease, it could be that I am one of those people who happens to be sensitive to the "super gluten" bio-engineered in this country in the last 50 years (see this article by Dr. Mark Hyman). Dr Hyman thinks everyone should avoid wheat and gluten! The funny thing is, that 1 year ago I didn't know what gluten was, or that it was causing me any problems. I didn't feel well, and hadn't for decades. I was chronically ill with numerous heal concerns that worsened each year; read my story here, and a plant based, whole food, gluten free diet reversed all of it. I am so glad I did a gluten free trial a year ago and got my health back; but it does make me a little nervous about going back to gluten. Here is an article outlining six reasons why one should be tested for Celiac Disease before eliminating gluten.

I plan to blog about the journey daily, perhaps my experiences can help someone else out there.  It will be detailed and hopefully boring, LOL!  I hope someone can gain something from the experience. I will continue to share vegan recipes during this time, and those of you who also follow me on Facebook and Twitter will still get all of the shared information daily, this will just be a new aspect. I feel a little like someone standing on the edge of a cliff about to jump, thinking that bungee cord looks old and frayed.....haha. Wish me luck!

*NOTE: If you think you might be gluten sensitive or have Celiac Disease, it is important to continue eating your usual diet  before you are tested so the test will be accurate!!Go to www.celiaccentral.org for info on symptoms.

Today's Celiac and Gluten Sensitivity Fact:  

 Celiac disease is an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food.


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Day 2
It's the morning of day 2, roughly 24 hours since I began ingesting gluten.  That sounds so weird!  I knew I was going to feel bad, but because I am doing it for a higher purpose, for someone other than myself, I will push through it. However, it is not going to be easy. I had hoped getting gluten sick would not be too bad, since I have replaced makeup, vitamin supplements, shampoo, and toothpaste with gluten free versions. Even my  holistic dog and cat food  is gluten free, better for them since gluten is indigestible by dogs and cats, and no chance of cross contamination for me!  My church even provides gluten free crackers and wine for communion as an option that was not offered a couple of years ago. So I wasn't fully prepared for feeling like...well, dog poop!
I could describe my body's current state scientifically as "generalized and wide-spread inflammation". That would be the nurse in me talking. The plain old human being in me would describe what I feel like as feeling zapped by an alien ray! My blood cells have turned to stone, it is as if I can feel every hard, coarse cell tumbling through the rivers of my body. Every joint is screaming. My knuckles, wrists, elbows, shoulders, etc. feel almost as if I was beaten with a baseball bat. Even the base of my skull throbs, causing a radiating pain all the way across the cranium and even into the jaw.I have a chronic bad back, and until now didn't realize how much freedom from pain I have enjoyed since going gluten free and vegan. Today I am reminded. Getting out of the bed was a major chore, let me tell ya! I didn't sleep well, I tossed and turned a lot. Maybe that is part of why I feel so exhausted, but it is also because I have set my entire intestinal system on fire with gluten and my body is fighting that with all it's got. It's like having the flu, without the fever.  
Yes, I am questioning my own sanity at this point. Why am I doing this again? Then I look at that picture of Sierra above, and know why: I want to spare her and the rest of my family all of this. It amazes me that a year ago I did not know about gluten, and had felt 'crappy' with vague symptoms for my whole life. My energy level was moderate to low all the time (compared to my energy without gluten) and I had IBS, gastric reflux,  Systemic Lupus Erythmatosus, migraines, abdominal pain that came and went, arthritis pain and swelling in joints, severe chronic constipation, tingling and numbness in hands and feet, irritability/depression, anemia, and osteopenia - all of which vanished on a gluten-free, vegan diet - except the bone loss, which I still am working to heal. I just sort of lived with it, not knowing what else to do. Gluten effect was the greatest discovery of my life, besides meeting my husband, that is! The past year I steadily got healthier, more energetic, and happier than I had ever been! Oh, how I wish I had just gotten tested for Celiac/gluten sensitivity back then!
I am pretty sure my husband and I are going to starve to death, since I don't have the energy to cook. It took all I had to squeeze my daily lemon into my 32 ounce glass of water this morning, LOL. I guess the hubby is going to have to learn to steam veggies and scramble tofu....he used to cook as an omnivore, so I know he can, he just hasn't since we went vegan/GF.  Oh, maybe we could fall back on Gardein, Boca, and other 'fake meat'  that we have had to avoid due to gluten, although I don't like the idea of processed food re-entering our diet.
OK, enough brain-fog rambling from the Glutened One. I hope something here strikes you as interesting or entertaining. This daily journal should provide some insight at least for those who are considering a gluten free diet, and those who need to be reminded what you are in for if you "cheat" on your gluten free diet. Those gluten-filled cookies at the party are not worth it, step away!
STRATEGY FOR TODAY: To incorporate yoga and meditation to help deal with the pain, adding more anti-inflammaory foods and spices to the menu like green tea, basil, rosemary, mint, turmeric, cinnamon, & adding even more flax seed, and avoiding the nightshade family of veggies, and encourage hubby to cook!
 End of Day 2 update
I felt really, really sluggish all day, and have generalized itching, no rash, just itchiness all over in addition to all the symptoms mentioned above. I decided to increase my water intake to help flush toxins, I already have a personal minimum of 96 ounces a day, so I am aiming for 128 ounces. Little energy for yoga, so it didn't happen. My son treated us to dinner, and I had Gardein beef Sliders (mini hamburgers, vegan of course) and fries at a local restaurant, I had a strange reaction. I became nauseous, bloated, and so incredibly sleepy, I couldn't stop yawning, and it was early! I had to hang on to my hubby to walk out of the place. Sleepiness persisted, and the 'brain fog' was worse than ever. I feel like I am barely functioning cognitively and physically!  In a nutshell, gluten is evil! I hope there is some level of acclimation on my part tomorrow .Maybe I reacted this way in part because I am simply not used to all those carbs. Before going GF and vegan, I was overweight and a T2 Diabetic. I will begin checking my blood glucose especially after meals containing carbs to see if this is part of my problem. My son suggests increasing my antioxidant vitamins C & E, will add that to my regimen, though my absorption is definitely compromised ...

About testing for Celiac Disease per http://www.celiaccentral.org/
Blood tests are the first step in a diagnosis of celiac disease. A doctor will order one or more of a series of blood tests to measure your body's response to gluten.


** It is important to continue eating a normal, gluten-containing diet before being tested for celiac. If the blood tests and symptoms indicate celiac, a physician may suggest a biopsy of the lining of the small intestine to confirm the diagnosis.

The most common blood test requested by doctors is the Celiac Panel. This test measures both your immune system’s response to gluten and whether there is damage to the intestinal tissue. The Celiac Panel consists of tests for the following: Anti-gliadin anti-bodies (AGA) for both IgA and IgG (IgA and IgG have a roll in controlling the immune system); anti-endomysial antibodies (EMA) -- IgA; anti-tissue transglutaminase antibodies (tTG) -- IgA, and total IgA level. 
According to Dr. Thomas O’Bryan (an expert and lecturer about gluten intolerance), this test records a false negative 7 out of 10 times. These false negatives are due in part to the physician’s interpretations as well as the patient’s condition at the time of the test. Physicians may interpret the test as negative if the test for intestinal tissue damage (anti tTG and EMA) is negative -- even if the blood test results indicate a positive immune reaction. The intestinal tissue tests will only come back positive if there is severe damage or atrophy to the tissue -- the kind found in the end-stage Celiac Disease. If there is only partial atrophy, the accuracy of this test goes down to 27-30 percent.
Another issue with the Celiac Panel test is that it does not account for those with IgA deficiency, which occurs 10 to 15 times more commonly among people with Celiac Disease than the general population. Patients with IgA deficiency will lack IgA antibodies, so this blood panel shows up negative. In addition, this panel only screens for one problematic portion of the gluten protein (alpha gliadin), when there are approximately 60 problematic portions. If you have an intolerance to one of the other 50+ proteins in gluten besides alpha gliadin, this test will come back negative. Dr. Vikki Petersen, author of The Gluten Effect, believes physicians are misdiagnosing 50 percent of the population according to these false negatives. As we are learning, there is a spectrum of gluten intolerance from slight to severe, and these tests do not pick up everyone’s sensitivities.

Today's Celiac and Gluten Sensitivity Fact:  

One in 133 Americans have celiac disease. 95% of celiacs are undiagnosed or misdiagnosed with other conditions. (Source: Fasano A, et al. Arch Intern Med. 2003;163:286-292.)

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Day 3
Feeling awful. My very bones seem to hurt, the fatigue is overwhelming, it is only 3 PM and I have already had 2 naps though they didn't do me much good, it seems. I really hate to think of all the ground I gained in healing my body going down the drain here. The joints all hurt,  brain fog just won't lift, abdominal cramps and sharp pains are rampant. I feel bloated and as if I don't fit in my skin. The generalized itching comes and goes, but the headache remains no matter what I do. I feel irritable, and am trying hard not to complain or be 'snippy',  afterall, taking it out on others (especially when this is my own doing) would only make matters worse.  Yes, I really am second guessing the sanity of this plan, particularly in light of the fact that a large percentage of celiac testing yields a false negative anyway, due to flaws in the test itself. However, there is a chance the test will be conclusively positive, and would be reason to test my grandaughter, and for my adult children to keep in mind for the future. On a very positive note, my hubby made lunch today! He steamed a nice big bunch of frozen veggies and heated up some canned beans, and we got very full!  It was wonderful, just like he is!

I do not recommend this course of action to anyone!  Knowing how healthy I feel without gluten, makes eating 'normal' bread or anything containing gluten, seem just wrong. An article by my friend Priscilla (a Gluten Free Vegan om Who Knows) on her blog sums it up quite well for most of us: the best indicator of celiac or gluten sensitivity is getting well on a gluten free diet! It doesn't require invasive tests, is relatively easy once you understand the concept and are willing to commit, and the other positive is that you will not have a medical condition that could cause you to be denied either heath insurance or life insurance in the future. That is certainly something to consider in today's climate where we truly do not know how "ObamaCare" is going to pan out for most of us.  The bottom line: if you are eating a 'normal' diet containing gluten and feel you must have an official diagnosis, then do it now, before going gluten free. If you are already gluten free or transitioning, keep it up, you may find that you feel better than you ever have! As for me, I have come this far, and will stick to it as long as I can, knowing I can stop consuming gluten and do a detox to feel better. My body has not built up any type of tolerance to gluten as it probably has before I went gluten-free in the first place, so the symptoms I am experiencing have a profound effect on me.

Once again, I'd like to say that I hope someone gains something from this daily journal Backwards Into Gluten, that perhaps I can spare you some pain and difficulty, encourage you to be tested before starting a gluten free journey, or be able to avoid the temptations of this gluten-filled world by knowing how hard it is going to be on your body!

STRATEGY FOR TODAY: Yoga and meditation to help deal with the pain, anti-inflammaory foods and spices to the menu like green tea, basil, rosemary, mint, turmeric, cinnamon, & increasing my normal flax seed, avoiding the nightshade family of veggies, drinking 128 ounces of filtered water through the day, and taking in some healing sunshine and Vit. D!

Today's Celiac and Gluten Sensitivity Fact: 

 Genetic testing does not diagnose Celiac Disease - its largest benefit is that the absence of DQ2 and DQ8 essentially excludes CD.
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Day 4
I am realizing more and more that I am in not only a physical battle, but a mental one. I had not really thought about it, but how you choose to eat begins not with the mouth, but the mind. Then, what you feel as a result, you experience on the cognitive level as well. It's no wonder 'brain fog' is so common among those with Celiac and gluten sensitivity! Lately, I find telling myself to eat that which is going to hurt to be very difficult. I thought since it was so hard at times to stay completely away from gluten, that all I would have to do is stop reading labels and obsessing; to just chill. Well it isn't that easy! I brought 'regular" gluten filled wheat bread into the house for the first time in a year. I didn't realize how very much my eating habits have changed,  and I scarcely know what to do with that bread, lol! Since we are vegan and were gluten free, we have never bought or used fake sandwich meats. I had Type 2 Diabetes prior to going vegan and GF, after losing about 30 pounds it went away and the doc took me off the Metformin. I continue to be conscious of the carbs I eat, particularly simple carbs such as bread, and I am just not in the habit of eating carbs, so I am forcing myself, and it doesn't feel right mentally or physically! It doesn't even taste that good! My taste buds have actually changed. Bread was one of my weaknesses in the pre-vegan and GF life, that led to my weight problems and eventually T2 Diabetes, so one realization that comes from this gluten trial is that a person can overcome their bad eating habits and beat the cravings completely! Now I would rather have a big bowlful of kale with sauteed onions and mushrooms, yum!

In the absence of gluten, combined with a healthy, whole foods diet that rarely includes anything processed, sweet, or containing simple carbs, my body restored itself. I lost weight, in fact almost 90 pounds to date, my T2 Diabetes resolved, my GERD resolved,  I have not had a flare from my Lupus, my blood pressure normalized, my chronic back pain lessened, my migraines went away, my moods stabilized; in a nutshell, I am happy and healthy! Having to force what my body views as poison (gluten) into my mouth goes against all of that, the Gluten Police surely should arrest me!

Physically things continue the same, nothing new, and nothing less. I will continue in this quest, albeit detrimental to my well being, because I feel it is for the best for my family to have concrete evidence so they can act accordingly. This time period serves to remind me how very far I have come on my heathful journey, and I really appreciate the lessons I have learned along the way, so I have no doubt this too will be an opportunity to learn. This is why I have chosen to share with my 800+ followers, in the hopes that you too, can learn from this, even if it is NOT TO GO BACK TO GLUTEN, EVER! LOL
STRATEGY FOR TODAY: Move. Get off the couch! This is a more realistic than yoga, which isn't happening. Continue to eat a healthy vegan diet, and drink my 4 quarts of water.

Today's Celiac and Gluten Sensitivity Fact: 

The onset of Celiac Disease can occur at any time in a person’s life. Once a person is diagnosed, family members should be urged to get tested as well. ~ www.celiac.org
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Day 5
I have reached a "Gluten Plateau". By this I mean that  it seems I am getting used to being gluten sick, and finding things I can do besides vegetate on the sofa all day. Today I painted the trim and door in one of the extra bedrooms that we recently repainted the walls of, something I have been meaning to do. It is always good to accomplish something, but this seems like a milestone to me, hopefully marking a new phase of my journey that is less Zombie and more Human. No more is the scary, walking dead creature inhabiting my home and sucking up my air! The human is still here, fighting for her life, and winning! ( UGH!  Why can't I say 'winning' without hearing Charlie Sheen's manic voice?)

I could spend weeks on the PubMed database reading related papers ranging from gluten related immune regulation to neurodegenerative diseases related to gluten reactivity. I enjoy learning, and everything I learn stimulates my desire to learn more. I am picky about where I get my information (Lord knows there is plenty of misinformation out there) and PubMed has reliable scientific information from the brightest minds in the country presumably. Additionally, it keeps my mind distracted from physical symptoms that I do not wish to dwell on. 

I have immersed myself the past few days in the testing for Celiac Disease. The most current approaches in scientifically based assessment and validation of  gluten immune reactions are by Dr. Ari Vojdani, who is the guy who pioneered IgG testing many years ago. Now, he’s involved in applications used for identifying (and validating) immune reactivity to different types or fractions of glutens, so patients can know which specific types of glutens they’re reacting to, and the extent of their reactivity, and any related neuro-immune issues, like opiates related to an allergen, that may be related to their individual profile. Cyrex Labs is the base for his work, and Cyrex  has 4 different types of immune panels, and are working on a 5th, and provide affordable testing across the country. I shared this information with my personal physician today, and he is looking into it as well. When my 4 week gluten nightmare comes to an end, hopefully the most current and accurate testing available will make this all worth while.

STRATEGY FOR TODAY: Do something, anything productive. Continue to eat a healthy vegan diet, and drink my 4 quarts of water.


Today's Celiac and Gluten Sensitivity Fact:
"A decade ago celiac disease was considered extremely rare outside Europe and, therefore, was almost completely ignored by health care professionals. In only 10 years, key milestones have moved celiac disease from obscurity into the popular spotlight worldwide. Now we are observing another interesting phenomenon that is generating great confusion among health care professionals. The number of individuals embracing a gluten free diet appears much higher than the projected number of celiac disease patients, fueling a global market of gluten free products approaching the $2.5 billion in global sales in 2010." Biomed Central
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Day 6

STRATEGY FOR TODAY:
It is said that a picture is worth a thousand words.

'nuff said ...


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Day 7

I find that I still am on a "Gluten Plateau",  my term for more or less getting used to feeling sluggish, foggy, and feeling random pains, and thankfully,  I am able to function, cook, etc. 
I find myself wondering if I should even bother taking my calcium or multivitamin with iron, because they are probably not being absorbed anyway! My intestinal villi are probably so angry with me right now that they can't  allow anything good to pass into my bloodstream, LOL! Of course, I will continue to take the supplements, (my B12 is sublingual, meaning it dissolves under the tongue and goes directly to the bloodstream bypassing the GI tract). I can't afford for my osteopenia to get any worse, and maybe some of the calcium is getting absorbed and utilized.  Most of the damage is continuing inside though I am virtually unaware, much like all of us before we discovered (or suspected) we were Celiac or gluten sensitive. I just hope and pray that the damage will be just enough to get an accurate test, but not enough to do more harm to my body.

STRATEGY FOR TODAY: Sunshine! Glorious, copious, sunshine here in south Texas, and I am going to seek it's rejuvenating, healing rays, if only to sit in the hammock swing awhile. Also  yoga, and continuing to avoid inflammatory foods and spices. Oh, and definitely more candlelit bubble bath time!

Today's Celiac and Gluten Sensitivity Fact: 
 AVOID IN ANY FORM: Wheat (einkorn, durum, faro, graham, kamut, semolina, spelt), rye, barley, triticale, and artificial sweeteners and products containing Maltodextrin (usually extracted from wheat).
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Day 8

Well I am hanging in there! I continue to consume gluten and I am still alive, lol. I feel as though I have gained weight - I am not happy about that because I still have about 20 pounds to lose even though I have lost a great deal since going vegan and gluten free a year ago. However, the scale says I have lost a couple of pounds, so obviously it is non-water bloating, and it is very unpleasant. I have struggled with my weight since my twenties, unlike many people with Celiac or severe gluten issues who have difficulty putting on weight, like my grandaughter Sierra.
Revelation: The gluten effect intensifies if I get less than 3 quarts of water, so I strive for 4.  Yesterday I got in less than 3, and I sure felt it today. Our bodies are 98% water, afterall! It only makes sense that the gluten would thereby be in higher concentration in my system, and for a longer period.

STRATEGY FOR TODAY: Survive a community-wide garage sale! I am looking forward to getting rid of a lot of accumulation, mostly from my kids who have all moved out, and I don't know why I still have their stuff!! Staying well hydrated, staying positive!

 Today's Celiac and Gluten Sensitivity Fact:
Wheat Free Is Not Gluten-Free! Products labeled wheat-free are not necessarily gluten-free. They may still contain spelt, rye or barley-based ingredients that are not GF. Spelt is a form of wheat.

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Day 9  spent recuperating from the ordeal of the garage sale ~

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Day 10

I have come to realize that any pain response in my body is magnified on gluten approximately by a factor of 10. One of the very few physical ailments of mine that was not reversed completely by a vegan, gluten free diet, is the three herniated discs in my back that I have had to live with for many years. However, my pain in general had improved so much that I no longer had to take Celebrex daily, and that was a wonderful thing! I still have to be careful, but I am able to move more and hurt less than ever before, or at least this was the case before journeying Backwards Into Gluten. So I am in considerable discomfort after making preparations for my garage sale, and the hours I was forced to sit in a less than optimal chair for hours, and sitting on the hard brick flower bed for the last hour because I sold my chair, lol. I had to retreat a couple of hours before the scheduled end of the garage sale due to the pain, and still am experiencing significant pain from compression of the discs caused by sitting and inflammation of all my joints, not just vertebral, that is no doubt fueled by gluten.
I also made an  unexpected discovery of gluten effect on my husband. When we made the decision to become vegan and gluten free, it was with the knowledge that wheat has consequences on the human body unlike anything in any generation before due to the development of "super gluten". Wheat, and gluten, trigger weight gain, pre-Diabetes, Diabetes, and inflammatory conditions including arthritis and gout. Part of my research included exploring the "Blood Type Diet" by Dr. D'Adamo (whose science is based on lectins that attach themselves to the antigens in our blood. His science on lectins is sound, however I feel he did miss the boat on animal products in general.) Last spring, my husband and I chose to become vegan and at the same time, subscribe to the Blood Type Diet (without meat that type O is supposedly good at utilizing) avoiding things not good for Type O, and that included wheat. But my further research led me to choose to be free of all gluten, not just wheat. We have both lost a great deal of weight and feel much healthier and more energized. I have told you my story, but haven't gone into Ken's plight. When I began re-introducing gluten, it was easy to just make the same meal for both of us. He has suffered severe gout attacks for years as well as swelling  of his feet and lower legs that was painful at times, and since being gluten free has not had one single flare up. However, since reintroducing gluten to our home, he went along with it never thinking it would affect him; but it did! Unfortunately we also ran out of Bladderwrack which we took daily to counteract bad lectins in our bodies as recommended by Dr. Peter D'Adamo, author of Eat Right For Your Type (the  blood type diet) which we subscribe to 95% - we do not eat meat which is supposedly good for type O's. 
First we noticed a tiny patch of eczema which he only gets in one spot every few years, and he just treats it for a while with creams and it goes away. (Eczema is commonly associated with gluten). Then we noticed his legs and feet swelling some, and I suspected gluten was responsible, but Ken was not convinced. We continued to consume gluten once or twice daily, and yesterday he woke up with moderate pain in his feet and ankles,  no apparent reason other than generalized swelling. This morning he could barely walk, and he considered the pain severe.As of today he is back on his gluten free diet, while I am not, which creates a serious cross-contamination issue! I was planning to do a major wipe-down if all surfaces at the end of my gluten-trial, but now I have to do it several times a day, keep 'his' and 'hers' pasta and bread in separate containers, and I have to be very careful when cooking not to cross contaminate. Now I know many of you have families with only part of the family on gluten-free diets, so this is nothing new to you! I applaud you all, for this is definitely not easy, and you have to be a little OCD to do it properly! It was, and will be in a few weeks, so much easier to have a completely gluten free home! 
Meanwhile, Ken is doing a little better this evening, and hopefully will be able to go to work tomorrow. We now know how seriously gluten affects his system, and it is a good thing to know! One new observation though, Ken has Dermatitis Herpetiformis, clearly brought on by gluten exposure. We haven't seen the dark, dry, scaly patches in quite a while, yet today, there they are!

STRATEGY FOR TODAY: Additional pain relieving measures for both Ken and I that include heat, Tylenol, rest, plenty of water, continuing a healthy, varied vegan diet that includes as many anti-inflammatory foods and green tea as possible adapted from Dr. Weil's Anti-Inflammatory Food Pyramid, and get another bottle of Bladderwrack as soon as possible for Ken!

 Today's Celiac and Gluten Sensitivity Fact:
Of the glutenous grains, wheat contains the highest concentration of gluten. There are 30 species of wheat; however, in countries such as the USA only three are being produced for human consumption: Durum (such as in pasta), common wheat (or bread wheat), and club wheat (similar to bread wheat). Over the past 5 decades the hybridization of these variety of wheat has  increased the gluten content by nearly 50%.
"The old fourteen-chromosome-containing Einkorn wheat codes for the small number of gluten proteins, and those that it does produce are the least likely to trigger celiac disease and inflammation. The new dwarf wheat contains twenty-eight or twice as many chromosomes and produces a large variety of gluten proteins, including the ones most likely to cause celiac disease".~  Dr. Mark Hyman

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Day 11


Ken  is feeling better after omitting gluten from his diet for just 24 hours, along with some prescription NSAID medication, and was able to go to work today. After this experience, he will be much more compliant with the gluten-free lifestyle, and has a new understanding of the inflammation that gluten causes! As for myself, since I continue to ingest the evil substance, there is no feeling better on my horizon for at least 2 and a half more weeks. I can do this, I  am nearly half-way there! I do wish, make that dream, that I was gluten-free again!
Many of us are aware that celiac testing has major flaws, with 70% or greater of all cases showing a false negative. In cases where a definitive diagnosis of Celiac is made, it is only due to the fact that the individual is in 'end-stage' Celiac Disease. It is known that celiac and gluten sensitivity cause invisible damage for years, even decades, before even being suspected,  usually being incorrectly misdiagnosed as  irritable bowel syndrome (IBS), canker sores, rheumatoid arthritis, lupus, osteoporosis, anemia, cancer, autoimmune disease, MS, and neurological problems such as depression, anxiety, dementia, schizophrenia, nerve damage, migraines, epilepsy, and autism. - as cited in this Natural News article
.In looking into the newer, reliable testing for Celiac Disease that is provided only by U.S. laboratory, Cyrex, it seems there will be a personal financial burden for the tests. The tests run from $369-$850, depending on whether or not all of the specific gluten antibody tests are run (currently you can be tested for sensitivity/allergy to 5 different glutens) From the Cyrex website: 
"Cyrex Laboratories is not contracted with any health insurance providers and does not offer direct insurance or Medicare billing. Patients are financially responsible for services provided by Cyrex. Patients may themselves submit their detailed Cyrex receipt to their insurance company for reimbursement, if reimbursement is offered by their insurance company. Full payment must be received for services before samples can be processed by Cyrex Laboratories."
    Q: Can I pay for my testing in installments?
    A: Cyrex does not offer financing services. Cyrex accepts all major credit cards.
    Q: Will Cyrex bill my insurance company?
    A: At this time, Cyrex Laboratories is not contracted with any insurance provider, including Medicare. Patients are given invoices/statements, which can be sent to their insurance provider for possible reimbursement.
    Q: Will my insurance company reimburse me for Cyrex testing?
    A: Cyrex encourages patients to contact their insurance provider before having testing performed. The insurance provider will need the testing CPT codes, which are listed on the Cyrex website. "
    I am currently contacting my insurance company to find out what, if anything, they will reimburse for, but I am not hopeful. If you or someone you know is interested in the newest, most accurate testing available for Celiac Disease and specific gluten testing, visit https://www.cyrexlabs.com/ and talk to your healthcare professional.
Remember, one should NOT be tested for Celiac/gluten sensitivity unless having consumed a glutenous diet for the previous 4 weeks!

STRATEGY FOR TODAY: It hurts to move. It hurts not to move. So, I might as well move! In the end I will feel better. I am going out for a walk, and possibly do some yoga later (after my daily nap!) 

  Today's Celiac and Gluten Sensitivity Fact:

An article published in the Journal of the American Medical Association reported on a study with over 30,000 patients. The data was collected from 1969 until 2008. Divided into three groups, the patients either had celiac, had intestinal inflammation but not full-blown celiac disease or had gluten sensitivity. Those individuals with full blown celiac disease had a 39% higher risk of death. The risk was 72% for those with intestinal inflammation, and 35% for those with gluten sensitivity.
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Day 12

The enemy is has many titles: gluten, meat, dairy, eggs, oil,  GMO's, High Fructose Corn Syrup (HFCS), sugar, and others. These have been purged from my kitchen, and my diet for nearly a year. I cook all of the meals for my husband and I, and I also cook from scratch (mostly) the occasional dessert which gives me complete control over evil ingredients. In the past 12 days however, I fell under the spell of vegan junk food. Namely, Oreos (not 100% vegan, just free of milk and eggs). My excuse was the gluten was no longer off limits, and that Oreos are not that expensive. I ignored the fact that Oreos contain (non-vegan) refined sugar, HFCS and corn starch - neither of which are organic so that means GMO, and the ubiquitous "artificial flavoring".  In other words, I have been completely poisoning myself! I need to get back in control, especially given my pain level lately, which is out of control, I find the following sums it up: "In short, sugar causes pain by irritating nerves. Anyone who has had a bad cavity and eaten a candy bar, knows this quite well. The sugar you eat is spread to all nerves of the body. The sugar may not cause your pain, but it will definitely make your pain worse. This is especially painful for those who have a chronic pain problem. In addition to the sugar itself causing pain, it also leads to elevated insulin levels. Insulin has very similar pain-causing properties as the sugar" `Dr. Michael Cassaro

STRATEGY FOR TODAY: Eliminate the sugar, HFCS, oil, GMO's and processed foods that have crept back into my kitchen like the stinking pirates of health they are!  There is no reason to revert entirely to what I know was killing me, the S.A.D.   I shall  buy some wheat germ and sprinkle it in my smoothies, thereby achieving a dose of gluten without all of the other poisons (the carbs, oils, HFCS, sugar, and those things you can't pronounce anyway) that are wreaking havoc on my body's systems. Avast ye pirates! 

  Today's Celiac and Gluten Sensitivity Fact:

Some people with celiac disease may have no symptoms at all. This is known as asymptomatic celiac disease. The undamaged part of their small intestine is able to absorb enough nutrients to prevent symptoms. However, people without symptoms are still at risk for the complications of celiac disease. - celiaccentral.org


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Day 13

I can definitely tell that my body is raging war against an unseen, internal foe. My energy level is poor, and I am constantly plagued by brain fog, which is really annoying! You know, that "what did I come in here for?" and putting things away in the wrong place syndrome. ( like the pantry item into the 'fridge). It seems to be more frequently that I notice these things, as the gluten builds up in my system. The migraine headache is constant, and un-abated by prescription or herbal remedies.  The desire to accomplish things that need to be done is absent, and I am unable to force myself to do much daily, which makes me sad, and feeling sad every day leads to - you guessed it - depression. I do not want to get to that point!

On the bright side, I am just about half-way to my goal! In 2 weeks and 1 day, I will be tested for Celiac, and then be able to go gluten free once and for all! Yay!  My hubby has not experienced any further difficulty since we identified gluten as his problem, and he has been symptom free.  

 I have managed to get off the "junk food" but can't say I feel a difference, because the gluten effect is quite strong. It is amazing how easy it was to slip back into old habits with just this tiny excuse!  Up until now, I have always felt the knowledge that powers one's choices to be vegan and gluten free were far more powerful than willpower and cravings of the old S.A.D.,  and that as such one would be 'bulletproof' against attacks of junk food. Alas, 'tis not the case, if you let your guard down, the enemy creeps in! We must keep reminding ourself why we do what we do, and of how bad we felt on the S.A.D.  Just yesterday I was watching the new t.v. series, "The Revolution:, and they were talking about that point when people are looking and feeling better, that it is a dangerous time for them, because that is when they are most likely to self-sabotage all of their efforts.  Personal trainers and dieticians see it all the time. We must remain strong in our commitment and desire for our best health, and continually set the bar a little higher, not lower, on our journey. May you remain strong and committed, and I hope my Backwards Into Gluten helps you to do that on some level. That is why I blog about it, so that you may be spared the direct consequences of such a backwards journey! 

STRATEGY FOR TODAY:  Taking care of self.  Bubble baths, yoga, aromatherapy, prayer and meditation, quality time with my husband and family. All of these are healing and restoring, and a much necessary prescription!

   Today's Celiac and Gluten Sensitivity Fact:

Highly regarded celiac disease researcher Dr. Alessio Fasano suggests that probiotics, the friendly bacteria that live in your gut, might someday turn out to be a cure for celiac disease. While this therapy does not yet exist, probiotics still offer many benefits for people with celiac disease.
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Day 14   (14 days to go, hurray!) 

I hate gluten. I hate that my body hates it so much, and I hate that it is hidden in so many foods. I hate that to be healthy, one has to call special attention to themselves in restaurants, skip snacks with the gang at the office (doughnuts cookies, crackers) , I hate that shampoo, lotion, sunscreen,air freshener, or even handling your pet's food could make you sick, and I hate that one has to pay more for gluten free foods at the store (and still might get 'glutened'). Yep, I hate gluten, and it hates me!

 I refuse to complain daily how gluten makes me feel. All I am going to say is that nothing has improved, except maybe m attitude. I am determined to look up, not down, see the glass half full, not half empty, and turn my frown upside down. I am halfway through, and I can see the light at the end of the tunnel! And maybe, it will all be worthwhile  to know for sure whether I suffer from celiac or gluten sensitivity, and what the likelihood of my children/grandchildren getting (or having) either is. To that end, I will get through whatever evil gluten can dish out. Boy, am I going to need a super duper liver detox, juice fast, and colonic cleansing!

STRATEGY FOR TODAY: Enjoy the sunshine of life!

 Today's Celiac and Gluten Sensitivity Fact:
The average celiac visits more than 5 doctors and suffers for over a decade before receiving a diagnosis. And while celiac affects 1% of the population, estimates for those suffering from gluten sensitivity vary from a conservative 10% to well over 40%. Even the conservative viewpoint points to millions of people suffering needlessly because they haven’t been educated on the possible dangers.
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Day 15

I still feel like a zombie. I wonder if I will ever get used to this brain fog? I don't think so. Before I knew I had a problem with gluten and went gluten free, I did not really realize the brain fog, the constant tiredness,  all of the gastrointestinal issues, the Lupus symptoms, the angina, migraines, etc. were caused by one thing, and one thing only: gluten. Once I went gluten free, it was clear. Now being back on gluten is harder than it was before because I know how good I feel without gluten, and it is really hard sometimes to force that evil substance on myself.
You would think it would be "easy" to eat gluten daily in order to be prepared in a couple of weeks to be tested for Celiac Disease, especially given that it is seemingly so easy to get accidentally glutened, but it is actually not. That is due to the fact that I am trying to eat healthily in every aspect except for the gluten, I am maintaining my plant based diet which over the past year has become devoid of processed food - which is also where all the gluten is lurking! So, in those first days, I succumbed to the evil cookie lure. It was wreaking havoc on my formerly diet controlled Type 2 Diabetes, so that had to stop. I realize now that the gluten free lifestyle has not been all about substituting everything with a gluten free version, in large part, it has been avoiding carbohydrate based food in general, which has made my pancreas (producer of insulin) very happy, until I taxed it again with carb-load! So, where does that leave me? I basically use Wheat Germ flakes the same way I do Flax seed, add it to my salads, smoothies, or other food. It is the easiest way to get gluten (yuck) without sugars and carbs, which is a "triple whammy" on the body!

STRATEGY FOR TODAY:Must keep active, fight the tendency to curl up on the sofa and veg ~ yoga & stretching. It helps to meditate on the reason I do this, I feel that thinking about my adult children and m grandchildren being spared this because I do this, makes it less difficult to go through.

 Today's Celiac and Gluten Sensitivity Fact: 

95% of celiacs are undiagnosed or misdiagnosed with other conditions. (Source: Fasano A, et al. Arch Intern Med. 2003;163:286-292.)
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Day 16
 I dreamed I was eating a gluten filled,  meat covered pizza that turned into a monster, came alive, and tried to eat me!  (I have not had pizza in a long time, but even then it was gluten free and vegan!) I woke up absolutely terrified and so ashamed of myself!  I think this dream was brought on by my guilt from eating gluten!  This gluten thing is more than just a physical challenge, it is a mental one as well!
So, to keep the gluten monster from devouring me completely, I am looking into the cleanses and detoxes that I need to be ready to do once my testing has been done. I am definitely open to your suggestions, I know we have all had experience being accidentally glutened, and have tried many things to help purge the gluten and restore health.  Please share what works for you! I look forward to your experience sharing in the comments below or on my Facebook page!

STRATEGY FOR TODAY:
Yoga, a walk, aromatherapy, and a hot bubble bath ~

 Today's Celiac and Gluten Sensitivity Fact: 
Did you know that 3 million Americans have celiac disease, but only about 5 percent of them are accurately diagnosed? 

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Day 17
 There's a phrase in my family exemplary of impatience, usually spoken by my son if we are all going somewhere together, he'll say"Are you still here?" That usually brings a chuckle and immediate action, and it isn't meant in a mean-spirited way. With a less jovial attitude,  today, I really want to ask the gluten in my kitchen, "Are you still here?" maybe it would get up and leave immediately as is the usual reaction to this query ~ because I don't like it in my house, or in my body. It is a bad, bad, thing to eat, for me anyway! But, it is not yet time to send the gluten away, it is only my wishful thinking, and maybe still a little bit of the nightmare I had yesterday of being eaten by a pizza!
I so much want to be planting my garden right now, but where is the energy to do that? Not here, not accessible. I need to do spring cleaning, where is the energy to do that? Not here, it is no where. I need to exercise. Where is the energy to do that? Nope, not here.  Will the end of this ever come? Yes, yes it will, and then I know without a doubt the migraines, the lethargy, the extreme fatigue, the bloating, the abdominal pains, the need for naps, the brain fog, the skin itching, the respiratory allergy symptoms, will all be gone, forever!


 Today's Celiac and Gluten Sensitivity Fact: 

The National Institute of Diabetes and Digestive and Kidney Diseases conducts and supports research on celiac disease. Researchers are studying new options for diagnosing celiac disease, including capsule endoscopy. In this technique, patients swallow a capsule containing a tiny video camera that records images of the small intestine.
Several drug treatments for celiac disease are under evaluation. Researchers are also studying a combination of enzymes—proteins that aid chemical reactions in the body—that detoxify gluten before it enters the small intestine.
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Days 18-22

I haven't abandoned you.  These past five days, I didn't have anything interesting to say,  any small portion of energy I had was being directed to fighting the worst attack of seasonal allergies I can ever remember having. Spring has definitely sprung here in south Texas, the trees, weeds, and grasses are budding and pollinating like crazy. It seems my weakened immune system is no match for all of that life springing forth, and streaming into my eyes and airways. However, I felt I should let you know I am still alive, gluten hasn't killed me yet, but it is trying ~
I hope to be up to  daily entry again soon. I realize the way this page of my blog is set up that you cannot comment here, so please let me know on my Facebook Page  if you have any comments or questions =)

 Today's Celiac and Gluten Sensitivity Fact:

Do you have the genes for celiac disease?
Find out if you have the genes associated with celiac disease. It's easy with  MyCeliacID — the first do-it-yourself saliva-based genetic test dedicated to celiac disease. If you do have the genes, MyCeliacID will tell you your risk of developing celiac in your lifetime. If you don't have the genes, it is highly unlikely that you will develop celiac disease in your lifetime. Only a doctor or other qualified healthcare professional can diagnose celiac disease. Your doctor will likely ask about your family history, your symptoms, and may perform additional testing to confirm the diagnosis. The test is not diet dependent, and can be done at any time.
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Day 23

Our household has increased by one adult carnivorous, gluten eater. It is a good thing that I have gluten in the kitchen, or else I think I would have an all-out panic. Our friend P has come to live with us, and we are delighted! She is such a welcome addition to our family, and I hope all goes smoothly and P stays for a very long time! That means I have to accept carnivorous ways, lol!  I can do that, after all, I was one for a very long time, too!  I think it speaks volumes about her willingness to accept grass-eaters!  This could lend a whole other dimension to my recipes, with actual carnivore testing!
Oh my gosh, so thankful for spellcheck. This gluten brain is full of typos, you would be appalled! (I am!)  Symptoms are definitely worse across the board, the pain, my Adrenal Fatique is back with a vengence, the brainfog, the immune system breakdowns, fatigue, and probably my osteopenia is advancing, as well as my anemia, since gluten interferes with absorption.There are other gruesome symptoms I wont mention but if you use your own experience as a guide you can probably guess what I mean ~

Again, let me say, that unless you have access to Cyrex labs testing (which is accurate, not like the standard celiac panels of old that are 90% of the time falsely negative) - I do  not recommend this approach. taking in gluten when you KNOW it is harmful to your body has both short term and long term effects. Immediate side effects, yes; but worse, is the invisible damage done to the intestinal villi and throughout your body. I am so close~ or I think I would throw in the towel. The brain fog is pronounced. I forget constantly what I was about to say, or do, or what I came into a room for. Aches all over, oh my gosh, so bad. Carpal Tunnel Syndrome has resurfaced too, which had disappeared )without surgery) on GF vegan diet.  I wouldn't wish this awful set of problems on anyone. I hope you cn learn, and gain from my experience, and either get tested before trying a gluten  challenge (going gluten free) or once you are GF and doing well, STAY THERE! 

 STRATEGY FOR TODAY: Survive the tidal wave of immune responses. Running out of strategy, because as long as gluten is incoming, it will not ease up.

 Today's Celiac and Gluten Sensitivity Fact:


The University of Chicago has one of the leading treatment and research centers for Celiac Disease in the U.S., and has announced astonishing facts about Celiac:
“While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal."
60% odds are worse than flipping a coin…see the rest of this cutting edge article here


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Day 24 

I got to visit with my grand daughters today, and as Sierra was telling me about her stomach pain, random diarrhea, and nausea that she frequently feels, I wanted so much to have answers for her. She has  been a very thin girl since about 3 or 4 years old, with digestive problems galore. It strengthened my resolve more than ever to get my own answer, for her, her sister, and her mother's sake. My hope is that she will understand the role gluten plays in wellness, (or lack thereof) and even at the tender age of 12, will be willing to commit to being healthy. I hope that when my tests indicate either Celiac or Gluten sensitivity, that I can share this with my daughter, along with information about the effects of gluten on the body, and how it can lead not only to a myriad of health problems and not feeling well, but also places one at increased risk for cancer and early death.  I don't want that for anyone! It is completely preventable, all it takes is knowledge. I am a piece of that puzzle, and endeavor to get the answers needed to urge testing of my grand daughter. Those of you who are a praying people, please say a prayer for my testing to be conclusive, and that it leads to Sierra getting tested!

Today's Celiac and Gluten Sensitivity Fact:

There are no typical signs and symptoms of celiac disease. Most people with the disease have general complaints, such as:
  • Intermittent diarrhea
  • Abdominal pain
  • Bloating
Sometimes people with celiac disease may have no gastrointestinal symptoms at all. Celiac disease symptoms can also mimic those of other conditions, such as irritable bowel syndrome, gastric ulcers, Crohn's disease, parasite infections and anemia.
Celiac disease may also present itself in less obvious ways, including:
  • Irritability or depression
  • Anemia
  • Stomach upset
  • Joint pain
  • Muscle cramps
  • Skin rash
  • Mouth sores
  • Dental and bone disorders (such as osteoporosis)
  • Tingling in the legs and feet (neuropathy)
Some indications of malabsorption of nutrients that may result from celiac disease include:
  • Weight loss
  • Diarrhea
  • Abdominal cramps, gas and bloating
  • General weakness and fatigue
  • Foul-smelling or grayish stools that may be fatty or oily
  • Stunted growth (in children)
  • Osteoporosis
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Day 25
I can't help but rejoice, I am almost at the end of this gluten nightmare! Of course, once the testing is done, then I begin the road back to healing, and I wouldn't be surprised if it takes me a year to get back to feeling as well as I was when I began this. I try not to be a broken record of complaints, it is all pretty boring stuff anyway. However, some may find the new things interesting or informational, so I trudge along and keep you all up to date. 
I would say the most interesting thing that has happened, is when I go grocery shopping. After a year of careful label reading and presenting a "pure" cart to the checkout stand, I feel very guilty when there is gluten in my basket! Of course, the Gluten Police aren't there, but it sure feels as if I am committing a crime and am about to be arrested, lol!  I will be glad to lose that feeling when shopping, and soon! 

 Today's Celiac and Gluten Sensitivity Fact: 

Chronic diarrhea is one hallmark symptom of celiac disease, and appears to affect half or more of those newly diagnosed. Frequently, the diarrhea is watery, smelly and voluminous, and floats rather than sinking.
However, a significant minority of people with celiac disease tend tot suffer from constipation instead of diarrhea, or alternate between the two. Many experience weight gain instead of weight loss and endure heartburn instead of stomach pain. They might also have absolutely no symptoms at all, or they might appear at their doctor's office with one seemingly unrelated symptom, such as unexplained anemia.
In fact, it's doubtful that there's a truly "typical" case of celiac disease; the condition affects too many body systems in too many different ways.
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Day 26
The weather is absolutely gorgeous, and it lifts my spirits. I love to sit on my enclosed screen porch and sip my green tea, listening to the birds. There are so many birds! We are in deep south Texas, and see so many migratory birds on their way to  points all over the U.S. It is amazing to see, and hear, these lovely creatures. It makes me wonder though, with all of the GMO grains widespread in our country, and the modernized wheat with his higher gluten content, do the birds also suffer from gluten problems? That would be a very interesting reseach to do .... I know I wouldn't be one bit surprised to find out that birds, as well as other life,  have suffered from man's interference with nature. I said a prayer to day for the birds on their way to glutenized and GMO fields everywhere.

 Today's Celiac and Gluten Sensitivity Fact: 
 Neurological Celiac Disease Symptoms
Many people with undiagnosed celiac experience extreme fatigue that prevents them from performing everyday tasks and impacts their quality of life. Generally, fatigue seems to creep up on you, making it easy to blame it on getting older.
At the same time, insomnia and other sleep disorders are very common in people with celiac. In fact, one study compared celiacs at diagnosis and on a gluten-free diet with non-celiac controls, and found both untreated and treated celiacs fared worse on measures of sleep quality.
It's the worst of both worlds: you're exhausted during the day, but can't fall asleep or stay asleep at night.
In addition, many celiacs get "brain fog" due to gluten. When you have brain fog, you have trouble thinking clearly -- it literally feels as if your brain is operating in a fog. You might have trouble coming up with the right words to carry on an intelligent conversation, or you might misplace your car keys or fumble other common household tasks.
Some newly diagnosed celiacs already have diagnoses of migraine headaches; in many cases (but not all), these headaches will lessen in severity and frequency or even clear up completely once you adopt a gluten-free diet.
Psychological symptoms such as depression, anxiety and irritability occur frequently in people with undiagnosed celiac disease. In fact, long-diagnosed celiacs often can tell they've been exposed to gluten through their irritability -- that symptom can appear within hours of exposure and linger for several days.
Peripheral neuropathy, in which you experience numbness, a sensation of pins and needles and potentially weakness in your extremities, is one of the most frequently reported neurological symptoms of celiac disease. In addition, some people are diagnosed with gluten ataxia, a condition characterized by the loss of balance and coordination due to gluten consumption.
Restless leg syndrome even has been reported as a common symptom of celiac disease. In one study, 31% of celiacs had restless leg syndrome, compared with just 4% of control subjects.
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Day 27
I am ashamed to admit it, but I haven't been thinking about my oral health. It is just one more area of health that gluten damages with it's inflammatory abilities. I have not been paying any extra attention, with what I would call 'the bare minimum' of oral care consisting of once daily brushing and flossing every two or three days, (which was fine before gluten) and as a result of subjecting my body to gluten for weeks now, my peridontitis is back. So I have stepped up to brushing and flossing twice daily, and using PerioRx rinse nightly. I wonder, what else am I missing? hmmmm ...

 Today's Celiac and Gluten Sensitivity Fact: 

It's not uncommon for people with celiac disease or gluten sensitivity to report depression as one of their symptoms.
Many studies have documented a link between symptoms of depression and celiac disease — even in people who have been following the gluten-free diet for a long time. Some researchers have speculated that depression in celiacs may simply stem from having a chronic health problem, in the same way people with chronic health issues such as arthritis and diabetes tend to get depressed.
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Day 28 
Cake! Punch! Party hats! Time to celebrate! I made through 4 weeks of gluten hell! Well, maybe not just yet, my testing is not scheduled for a couple of more days!  We are a one car family, and my husband takes the vehicle to work, and with the prices of gas these days, making 2 round trips to take him to work and pick him so I can have the car just isn't feasible, so I have to wait for his day off on Thursday. So just to be sure, I will continue to on gluten, just a little bit longer .... but I can see the light at the end of the tunnel, hurray!

Today's Celiac and Gluten Sensitivity Fact: Complications Of Untreated Celiac Disease
1. Malnutrition
Even when patients are eating lots of healthy foods, they can become malnourished because the nutrients in the food are not being absorbed. Instead, the vitamins and nutrients are excreted in the stool. Malnutrition in untreated celiacs can cause weight loss, anemia, and vitamin deficiencies that may result in fatigue, stunted growth, neurologicial problems, and low bone density.
2. Decreased Calcium Levels and Osteoporosis
Calcium and vitamin D are lost in the stool instead of being absorbed into the body, leading to rickets in children, a type of kidney stone called an oxalate stone, as well as osteomalacia (softening of the bones), osteopenia, and osteoporosis. Interestingly, bone diseases can occur in people with milder forms of celiac disease who do not appear to have malabsorption. Bone density can actually improve once the gluten-free diet is started.
3. Lactose Intolerance
The enzyme lactase, which helps us digest the lactose in dairy products, is produced in the cells that line the surface of the villi in the small intestine. When the villi shrink and flatten in celiac patients who are eating gluten, lactase can no longer be produced and the patient develops lactose intolerance. Many celiac patients on the gluten-free diet find that once their intestines have healed, lactase production resumes, and they are able to tolerate lactose-containing products.
4. Cancer
According to most studies, long-standing untreated celiac disease leads to an increased risk of gastrointestinal cancer, such as lymphoma. Even with this increased risk, however, these cancers are rare in celiac patients. Some evidence suggests that in celiac patients who follow a strict gluten-free diet, the risk is no greater than in any other healthy person.
5. Neurological and Psychiatric Complications
Celiac disease has also been associated with depression, schizophrenia, anxiety, neuropathy, balance disorders, seizures, and severe headaches.
6. Miscarriage and Congenital Malformation of an Unborn Baby
Pregnant women who don't realize they have celiac disease (or who know they have it but don't follow a gluten-free diet) have nutrient absorption problems that can lead to miscarriage or congenital malformations, such as neural tube defects. 
7. Short Stature
In children, undiagnosed celiac disease can lead to short stature. During childhood, it's crucial that children get the right nutrition to help them grow and develop. If they have unrecognized celiac disease and are eating gluten, the damage to their intestines will prevent nutrients in their food from being absorbed. Fortunately, if celiac disease is diagnosed in time, a gluten-free diet can sometimes help a child catch-up to a normal height.
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DAY 29

In just a few days I will be having my blood drawn for celiac testing, and then wait some more, because my insurance requires the results to be returned first, I will have to then wait up to another week or so before having an endoscopy done to look for atrophied villi (the diagnostic proof of Celiac).  I will continue to consume gluten until after the endoscopy. I feel very fortunate to have knowledge of Cyrex Labs unique, accurate testing, and very fortunate to have a doctor who will do the correct testing. Old celiac panel testing as I have discussed, is 75-90% inaccurate at best, and fails to give the much needed diagnosis for hundreds, even thousands, every year.  Someone with gluten sensitivity or Celiac Disease  has a Leaky Gut, which is excessive permeability of the small intestine that leads to the myriad of symptoms linked to celiac, gluten sensitivity, and many autoimmune disorders.  Celiac sufferer and fellow blogger Heidi has done a wonderful job of explaining the Cyrex lab profile, and her journey from glutendom over at her blog Adventures Of A Gluten Free Mom.

In the near future, physicians will be better informed and better diagnosticians regarding celiac and gluten sensitivity, and laboratory testing will have a new gold standard for celiac and gluten sensitivity screening. Until then, we must do the research on our own, and find the path best suited for us individually.. For many, this is a 100% gluten free diet and 100% gluten free home. I for one am so grateful to the small army of gluten-free bloggers and their tireless research and sharing of information that makes gluten a much less scarey monster, because what we fear most, is the unknown!

 Today's Celiac and Gluten Sensitivity Fact:
Dr. Alessio Fasano, one of the country's leading Celiac Researchers, estimates that 6% of the population has gluten sensitivity, compared to 1% with celiac disease. According to The Food Intolerance Consumer, gluten-sensitive people make up 15% of Americans, whereas celiac disease is currently estimated to exist in 1% of the population. Clearly, in view of its prevalence in the U.S., gluten sensitivity needs to be addressed, but as it turns out, research is showing that an early diagnosis of gluten sensitivity is particularly crucial in preventing celiac disease. - from Celiac.com
 Celiac disease used to be considered a rare disease that a doctor might never see in practice.  Now we know that it’s the most common genetic disease in the world, with at least 3 million people having celiac disease (even if most remain undiagnosed) in the U.S. alone.
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 7  weeks since I started taking on gluten ~Apr. 6th

My doctor had a family emergency, so my appointment was set back 2 weeks.  He wanted to see me and talk with me when assessing my 'condition', so I just got the labs drawn yesterday. I don't know yet if it was all worth it. I feel pretty darn awful all the time. The typical Celiac Panel was drawn, because my doc is already convinced I am celiac and that the test will show it. If we need to (and probably will because the traditional celiac panel is so often falsely negative) I will then have to pay out of pocket for the Cyrex Labs testing. I will know the results of the first set of lab work by next Friday, hopefully. In a holding pattern, still consuming gluten in case of biopsy and/or Cyrex Labs testing after these results are in.
 
Again, I wouldn't recommend this course of action, at all! If you feel better on a gluten free diet, then by all means be gluten free! It doesn't matter whether one is celiac or gluten sensitive in that the treatment is the same: gluten free living. I would not have done this if were not for my youngest daughter and my granddaughter (whose mother needs a convincing reason to have her daughter tested).  Incidentally, you could have the genetic test for the celiac marker done at any time, you don't have to be consuming gluten for that test.

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First round of test results  April 16th

Standard celiac panel results are in. The tests are negative, pretty much as expected, given the inaccuracy of the standard tests, however, I have one of the genetic markers for celiac, HLA-DQ2 haplotype. Now I have to come up with $400 to Cyrex labs to get the accurate testing. I wanted this to begin with, but because the standard testing  is paid for by my insurance, and my doctor felt so strongly that I have CD, he thought it best to start with the usual celiac panel even though I showed him articles about its inaccuracy rate being over 70% falsely negative.  So I am going forward with Cyrex Labs, and will keep you all posted!

The most current approaches in scientifically based assessment and validation of  gluten immune reactions are by Dr. Ari Vojdani, who is the guy who pioneered IgG testing many years ago. Now, he’s involved in applications used for identifying (and validating) immune reactivity to different types or fractions of glutens, so patients can know which specific types of glutens they’re reacting to, and the extent of their reactivity, and any related neuro-immune issues, like opiates related to an allergen, that may be related to their individual profile. Cyrex Labs is the base for his work, and Cyrex  has 4 different types of immune panels, and are working on a 5th, and provide testing all across the country.

Meanwhile, I continue to add gluten into my diet, and hate it ... I want this to be over, I want to feel well again! 
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April 25, 2012

My husband and I are unable to come up with $400 for the Cyrex testing, I am pretty unhappy to have gone through all this glutenizing, knowing only the Cyrex lab testing is true and accurate, and we can't afford it. My doc feels the symptoms I have (the IBS, migraines, fatigue, chronic anemia, osteopenia),  presence of the celiac gene (HLA-DQ-2)and clear relief from a gluten free diet, means Celiac to him. I will go ahead with the next step, visualization of the colon villi and biopsies, for the final word, because I really want the concrete diagnosis for my children's and grandchildren's sakes! It became really important to me in light of my cancer diagnosis, what if I am not around to give information, support, and tewach my family what they need to know when or if problems related to gluten arise?  Knowing that I had celiac would make a strong case for celiac testing in the presence of so many possible varied symptoms, and could likely shave years off the diagnosis time. I do this, so that they will not have to suffer long periods of feeling unwell not knowing why.
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May 6, 2010
Wow, it is a good thing I am not acutely ill, although I am sick every day,  because it takes so long sometimes for medical diagnostics. Waiting for insurance approval, scheduling,  and working out which day my husband can be off work to take me in, etc.  This week I finally saw the gastroenterologist and  scheduled the biopsy to diagnose or rule out Celiac Disease for June 14th. I don't look forward to it, but I look forward to it all finally being done! I continue to poison myself with gluten daily,  and am sick and tired of being sick and tired! The light is at the end of the tunnel though ....

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Well, there is an old saying, "No news is good news" 

However, I am not sure I believe that, given that I have basically poisoned my body with gluten and suffered physical pain and illness for the past four months, to no avail.  My gastroenterology studies finally complete today, but as my luck would have it, the doctor was unable to visualize the duodenal villi for a proper biopsy/diagnosis due to an anatomical defect (a strangely narrow and twisted jejunum which proved too dangerous to force a scope and camera through to the duodenum). So I am back to a fork in the road: do I get the only  accurate  reliable celiac testing, only performed by Cyrex Labs, not covered by insurance, and cost of $400.00 (don't have any idea where we would get the money because honestly, we eat a lot of just beans and rice just to make it), or should I do nothing?

Perhaps the "No news is good news" should be the prevailing thought, but after all  have been through, it is so hard to let it just drop. I wanted to do this to spare my daughters and son, and granddaughters from having this test. If I have Celiac, not just possess the gene (as I already learned that I do have) then it is much easier for a gastroenterologist to diagnose them, and most of us know how really hard it is to get diagnosed, many of us have been misdiagnosed for years! So today I stand at the fork in the road, the opportunity to be free of gluten and start feeling better again is at the one hand (and very appealing),  yet it means giving up on my quest for a definitive diagnosis one way or the other. I cannot be tested for Celiac Disease unless consuming gluten, and I do not have $400 to spend on the lab tests I need to rule out or confirm Celiac Disease.  

After much prayer and consideration, and probably a strong desire to feel well again, I have decided I have done all that I can at this point. I need to get back to feeling well, having energy, restoring my bone loss, etc. So from this day forward, I am once again, and forever, GLUTEN FREE! My breast cancer tumor has been showing progressive shrinking, so there is no reason not to believe that I will be here for my family as a resource, for support and information, and to help them down this road .My youngest, college age daughter has come back home to live for now, so  she will be gluten free with us as well, and will hopefully begin to feel better and see an improvement in her anemia, fatigue, concentration issues, and so forth. As for little Sierra, I pray that very soon she will see a brilliant physician who sees the possible signs of celiac in her. The fact that I carry the celiac gene makes it very likely that her mother (my middle daughter) and she do also.

 I hope this journal of my gluten-testing saga has been in some way helpful, informational, or entertaining for you. In summary:

* If you suspect Celiac or Gluten Sensitivity, see a celiac specialist (choose a gastroenterologist who specializes in celiac)
* Proper diagnosis process includes antibody blood tests and endoscopy with biopsy. Only Cyrex Labs provide accurate testing and is expensive,&  not covered by insurance. The antiquated 60 year old celiac panel tests for only 1 of 8 possible gluten antibodies, and is falsely negative 70% of the time.
* Don't start a gluten free diet before testing (if you are not consuming gluten, then there are no markers to be diagnosed)
* You can be tested at anytime to see if you carry the genetic predisposition for Celiac Disease, whether or not you are consuming gluten.
* Remember, 1 in 100 people have undiagnosed Celiac Disease, another 1 in 35 have gluten sensitivity, most are unaware of this invisible, silent monster destroying their brain and gastrointestinal system!
* If you need help with your gluten free diet, seek a qualified nutritionist or Dietician.
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