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Villi Still Damaged After All These Years?

frec

By frec
in Coping with Celiac Disease

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frec Contributor
frec
Posted

I was diagnosed with celiac disease in 2002. I have never cheated on the diet and only get glutened occasionally--maybe once or twice a year. My new gastro gave me an IgA/tTg test, just to check things, and I came out slightly positive (23). He did an endoscopy last week to check on things and found villous atrophy--not totally flattened, but damaged.

I am still baffled as to how I am being glutened, and several nice people gave me suggestions on another thread. I am sooo careful! I am still going over everything with fine toothed comb. I just thought I should let people know that this can happen. If your gastro hasn't recommended a blood test periodically (my old one never did), ask for one. Apparently you can damage your villi even with a very low positive score.

I also would like to know if it has happened to anyone else?

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Green Eyes Rookie
Green Eyes
Posted

I get results from a blood test today after 3 months of eating gluten free. I'm anxious to see what my results are!! I have a very difficult time because my system doesn't react to small amounts of gluten. I watch it ever so carefully - but I don't even know when I get those trace amounts so I never know to be more careful. Could this be your problem as well?

Jennifer

fedora Enthusiast
fedora
Posted

just wanted to say I am sorry, hope you figure it out

happygirl Collaborator
happygirl
Posted

After reviewing your diet, I would discuss the possibility of refractory sprue with your doctor. If he isn't knowledgable, I'd find one who is.

dilettantesteph Collaborator
dilettantesteph
Posted

A GI celiac specialist gave a talk at our local chapter recently. He said that true sprue was very rare. Almost always people are getting small amounts of gluten accidentally. Since I am not all the way healed yet, I still react fairly quickly and can tell you that all sorts of things that are supposed to be gluten free seem to be cross contaminated with enough gluten to make me sick. It could be that even though you aren't getting obviously sick, you are still getting flattened vili from the same sorts of items. I try to only get things made in dedicated facilities. He recommended checking things like make-up, soap, lotion etc. I would also say that sprue is unlikely since your blood test was positive. It indicates that you are getting gluten somewhere. The same specialist said that now he considers under 20 negative, but that he is beginning to think that he should be lowering that figure to under 10. He also said that a dose as small as 0.5 mg. is enough to cause a reaction. I am sorry for your problems.

neesee Apprentice
neesee
Posted
A GI celiac specialist gave a talk at our local chapter recently. He said that true sprue was very rare.

That's interesting. When I was diagnosed my gastroenterologist told me I was only the fourth real and true case of sprue he had ever seen in all of his career. Then he said one had died. I took that last statement to mean it was very important to follow the diet.

neesee

Lisa Mentor
Lisa
Posted

Happygirl made a comment about Refractory Sprue. Having a conversation with someone who has been diagnosed with Refractory Sprue, due to the many years and severe symtoms of undiagnosed Celiac, her villi will no longer grow back, regardless of a dedicated gluten free diet. They're just gone. :(

Although perhaps rare, it does happen.

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Mike M Rookie
Mike M
Posted
I was diagnosed with celiac disease in 2002. I have never cheated on the diet and only get glutened occasionally--maybe once or twice a year. My new gastro gave me an IgA/tTg test, just to check things, and I came out slightly positive (23). He did an endoscopy last week to check on things and found villous atrophy--not totally flattened, but damaged.

I am still baffled as to how I am being glutened, and several nice people gave me suggestions on another thread. I am sooo careful! I am still going over everything with fine toothed comb. I just thought I should let people know that this can happen. If your gastro hasn't recommended a blood test periodically (my old one never did), ask for one. Apparently you can damage your villi even with a very low positive score.

I also would like to know if it has happened to anyone else?

Hello Frec, I haven't posted for very long, so I don't carry much clout, having said this, if you find the time, keep an eye on the gluten test strip thread. ShayFl will be doing some testing to see if the Elisa test strips are accurate or not. From the tests that I have performed, there are indeed issues with the so called "gluten free" foods that are out there and just food in general. Whole foods are just about the only safe way to go in my opinion and even then there can be problems. I was buying an entire organic non injected Turkey breast that was whole. (It was just the breast but it had been cut by the store) and I cooked it myself. I got gluttened from it. Tested it after the fact with the test strip and it was positive. Maybe it had been injected or something along the way or maybe a CC'd knife from the store. I don't know what the answer to this is, it makes me very upset. So now I have switched to almost only canned meats and buying local farm fresh raised meats from the local Amish. I also have a local fish farm that I buy my fish from. It seems like if the meat has been cut and packaged at the store, it is suspect for CC. So far all of the canned meats that I have been buying and testing from Sams Club are ok. Of course that can change. I might as well bring this up also (man are they going to attack me for this one) I have not found a salad dressing that contains vinegar, that does not test positive for some gluten. Mike

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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