Gluten-related Disorders: Not Black and White

This article is great at explaining all aspects of the connection between celiac disease and gluten sensitivity.

The fact that so many celiacs improve in only some areas of symptoms on a strict gluten free diet also says gluten is probably not the only thing making us sick. I am tired of doctors thinking that all celiacs feel 100% normal if they are gluten free. I still have a myriad of symptoms, some debilitating, and am extremely gluten free. After 15 years on the diet, my antigliadin antibodies, once off the charts, are at normal levels, anti endomysial the same, yet Ttg remains elevated. Something is still amiss.

Forgot to say that I also suffer with Hashimotos Thyroiditis an auto-immune condition that is also helped by a gluten-free diet.

Excellent analysis!

I have celiac disease which is definitely an auto immune disease, and because i live in America eating wheat is usually out of the question. However, there is a restaurant near me that uses wheat farmed and processed in Europe that i eat at about once a month with no issues. My girlfriend can attest to this as well, because she has the same exact problems i do. For years i had wondered if gluten (from wheat) was the problem at all, but suspected that RoundUp or a similar toxin was the culprit. Finding out that i was in fact eating European wheat every month and not getting sick proved it to me. While i will concede that there is an extremely slight chance that some people actually have a wheat gluten allergy i would venture to say that most, if not all, people are simply sensitive to toxins in wheat from the farming and processing of it.

From your mouth to primary care providers' ears. My son all but stopped growing between ages 12 and 13. He had reflux but no other GI symptoms. His antibodies weren't high enough, though, so we were told he didn't have celiac disease. Six years later, his antibodies were off the charts. Diagnosis was confirmed by endoscopic biopsy. Genetic test revealed DQ2.5 genes. What happened to clinical medicine? Please, "experts", stop giving primary care providers simplistic disease presentations and testing protocols. Yes, most celiac disease patients present with classic symptoms, but many do not. If a child stops growing well, suspect celiac disease...even if he doesn't fit the typical presentation. Please.

I completely agree that many people who claim to just have sensitivity (or even other illnesses, like irritable bowel syndrome) are celiac and just need to save themselves a lot misery and money and strictly avoid gluten. Most of my family are celiac, if they admit it or not. My daughter and I have stay strictly gluten free for 25yrs and my grandchildren are gluten free. We are the only healthy people in our family, literally. My sister spends huge sums of money on her family's health, when all they need to do is avoid gluten. My Mother is slowly dying because she and her doctor won't completely keep her off gluten. She has so much diarrhea that she can not maintain nutritional levels sufficient to support her life. Yet she keeps eating gluten and saying it is ok for her to just eat "less" gluten, a little bit, she says is ok...and her doctors, even the nursing home she was in, don't even seem to have enough understanding of cooking without gluten to provide her with food. At the nursing home they just slid off her plate anything they "guessed" might have gluten in it...which translated to her having only reconstituted scrambled eggs for one breakfast I knew about, and traces of other things that had been on her plat still lingered...I am appalled at the ignorance of people in positions like doctors, nutritionists, cooks in nursing homes and hospitals... in my Mother's small town it seems most people don't even know what gluten is or they think it's just another fad diet, or they otherwise don't have a clue to how serious a gluten free diet is.

I'm so happy to read this from a doctor who lays it out as more complicated than black and white between celiac and/or gluten sensitivity. I was once warned by a physician that the longer I stayed gluten free, the more sensitive I would become. I sometimes wonder these days if I'm still dealing with gluten sensitivity or if I've become a celiac based on my reactions to smaller and smaller amounts of gluten setting a host of symptoms off, some of which are painful. And I too am not going to eat gluten to take a test that can be unreliable anyway. My sister nearly died at 6 months until diagnosed with celiac in 1948. I had never been told this was something for me to watch also. It's changed my life since for the first time in my life I no longer suffer from clinical anxiety and panic attacks. You can only guess at what it did to my self esteem. Unfortunately I was in my 60s before the discovery. I so wish there would be more research on this whole issue.

The fact that so many celiacs improve in only some areas of symptoms on a strict gluten free diet also says gluten is probably not the only thing making us sick. I am tired of doctors thinking that all celiacs feel 100% normal if they are gluten free. I still have a myriad of symptoms, some debilitating, and am extremely gluten free. After 15 years on the diet, my antigliadin antibodies, once off the charts, are at normal levels, anti endomysial the same, yet Ttg remains elevated. Something is still amiss.

What are your thoughts on gluten and grain free eating as well as limiting toxins as much as possible (if you don't already)? I have read that other grains can mimic gluten and then our bodies start attacking them too.

If you suspect you have celiac, avoiding gluten is better than getting diagnosed. Diagnosis with this autoimmune disease will mess with your qualification for life insurance.

Dr Ford,

Insightful comments! I wish more doctors were as well read as you.  I live in the Philippines and I've never had any real help from doctors here but my reasoning has been confirmed as reasonable by a GP and a Neurologist (I'm a scientist and able to understand the biology and genetics of the celiac disease world). Here is what I have said about the matter of Gluten Sensitivity and Celiac elsewhere on this site.

Never been formally diagnosed as celiac. But boy do I get sick when glutened. The gut reactions came on as an adult. 50ish but I’ve had neuropathy in my legs since I was 25. Although it has progressed slowly, no doctor has ever worked out the cause. My sister is a diagnosed celiac and many of my family have been undiagnosed celiacs ( bowel cancer, always sick - IBS, Alzheimer’s). I have HLA DQ 2.2 but was never serum tested while eating gluten. I got sick and stopped for 6 months before I realised I needed the gluten challenge. Never been game to make myself sick for 3 months to do it.

Gluten Sensitivity is a genetically modulated inability to digest gluten and similar big proteins.  It is an Auto-immune condition. I don’t like to call it a disease or a disorder. We have the original human genes. Everybody else has mutated genes that allow them to digest a poison.  

There are a range of gluten sensitivities and celiac is only one expression. Gluten can affect the brain with white holes that affect cognitive skills and may bring on Alzheimer’s and MS in some cases. It can specifically affect the cells in the cerebellum and cause gluten ataxia, it can cause schizophrenia and various mental illnesses, it can affect the skin (dermatitis herpetaformis) with symptoms that look like dengue or measles, it can affect the long nerves in the body causing neuropathy in hands and feet, (I have or have had many of the above) it can affect the thyroid (hashimotos disease) and there are another 300 related and unrelated ways that gluten may damage our bodies as well as diarrhoea, constipation etc. Many of these symptoms may occur at the same time. COELIAC IS NOT THE DEFINING SYMPTOM OF GLUTEN SENSITIVITY. It is only the first one recognised and codified. Coeliacs are gluten sensitive as we are and are part of the gluten sensitivity spectrum.

Gluten specialists such as Dr Marius Hajivasilliou are now saying that more gluten sensitive people have neurological problems than any other and they would class gluten sensitivity as a neurological disorder rather than a GI one.

On 5/9/2016 at 7:35 PM, Guest Leslie said:

What are your thoughts on gluten and grain free eating as well as limiting toxins as much as possible (if you don't already)? I have read that other grains can mimic gluten and then our bodies start attacking them too.

Gluten occurs in wheat, rye and barley but all cereals have similar poisonous proteins designed to stop animals from feasting on their seeds.  Oats have avenin, rice has orzenin, corn has zein. I seem ok with corn on the cob but I react to corn flour, probably because of the higher conc of bio-available zein in it (most sweet corn grains pass right through...).  Even pseudo cereals like quinoa are reported to have similar proteins that are dangerous to celiacs in some strains. I eat white rice which seems ok (rice husk/germ is gone) and quinoa marketed as gluten-free which seems ok as well. Gluten and the proteins above are lectins or lectin like (Google Dr Gundry - take his advice with a large grain of salt). Other foods with high conc of lectins are nightshade family and beans.  I stay away from beans as I get bloating and general unwellness. Apparently the worst nightshade is eggplant. I eat tomatoes but generally well cooked and I think that long cooking pretty well destroys lectins. I love my version of cambodian eggplant curry and I think that the long cooking make that safe as well.  These reactions are probably quite personal and require constant testing til you know what is safe.