Gluten-Free And Still High Ttg Iga Level

[Hope4health]

My son was diagnosed with type 1 diabettes and celiac over 3 years ago at age 14. He has been very good at eliminating gluten from his diet. His original TTG IGA level was about 150, and he had a confirming endoscopy. His last two TTG IGA tests (6 months apart) have been 60-70.

I am wondering what our next step should be? The doctor has recommended another endoscopy to find out if he still shows villous atrophy. She says that sometimes, although rarely, people's TTG IGA levels will stay elevated even after the intestine has healed. We don't want to subject our son to this again. Another doctor suggests that prednozone is sometimes used to knock back the immune system, but this treatment is not a good idea for diabetics.

I know the standard response to this question is "well, he probably is still ingesting some gluten". We are pretty sure this is not the case. Does anyone have experience with this situation, and if so, what did you do, and what do you recommend?

[psawyer]

I don't have all the answers. Gee, I don't even know all the questions.

There is a significant drop in the levels from the first test. You won't get to zero, ever. There may be some environmental exposure at school or in other places. The age is a challenging one, with hormone levels all over the place. If you are sure that you are doing everything possible to prevent avoidable exposure to gluten, I would be inclined to let it be for now.

[Skylark]

I know the standard response to this question is "well, he probably is still ingesting some gluten". We are pretty sure this is not the case. Does anyone have experience with this situation, and if so, what did you do, and what do you recommend?

I agree that prednisone is a last resort.

How sure are you that he is not getting gluten? Is he eating only naturally gluten-free whole foods that you can look at and verify that they are gluten-free? I mean foods like potatoes, eggs, a bunch of broccoli, meat you cook yourself, bananas, etc. If it's processed you can't really check for gluten contamination.

If he is eating anything made from grains, he may be getting gluten. We have had a few people on the board who cannot tolerate the traces of gluten that are common in commercial gluten-free breads and baked goods. Grain products that are not labeled gluten free are not necessarily safe, even if they are made from safe grains like buckwheat or millet. Tricia Thompson bought a bunch of flours that should be naturally gluten-free and found gluten over 20 ppm in 7 of 22 samples, including one sample of soy flour with a whopping 2925 ppm gluten. Open Original Shared Link Other studies have shown there are sometime detectable traces of gluten in foods processed on shared machinery with wheat.

Also, is he off oats and dairy? Casein and oat avenin can mimic gluten in some individuals. If he is not eating grain-based foods, the next thing to try is removing oats and dairy.

[Gemini]

My son was diagnosed with type 1 diabettes and celiac over 3 years ago at age 14. He has been very good at eliminating gluten from his diet. His original TTG IGA level was about 150, and he had a confirming endoscopy. His last two TTG IGA tests (6 months apart) have been 60-70.

I am wondering what our next step should be? The doctor has recommended another endoscopy to find out if he still shows villous atrophy. She says that sometimes, although rarely, people's TTG IGA levels will stay elevated even after the intestine has healed. We don't want to subject our son to this again. Another doctor suggests that prednozone is sometimes used to knock back the immune system, but this treatment is not a good idea for diabetics.

I know the standard response to this question is "well, he probably is still ingesting some gluten". We are pretty sure this is not the case. Does anyone have experience with this situation, and if so, what did you do, and what do you recommend?

Your doctor needs to run the anti-gliadin test for dietary compliance and not use the tTg IgA because the tTg can be elevated due to other autoimmune issues. His diabetes may be keeping the level higher, along with other ones like Hashi's thyroid disease or liver disease. I am not saying your son has either one but from my experience, having multiple autoimmune issues will keep tTg levels higher, at first. Doctors make this mistake all the time and I still can't figure out what they don't get!

I have 4 autoimmune diseases myself and even though my other blood work came down to a great level after healing, my tTg stayed in the high normal range

for awhile after diagnosis. It was driving me crazy because I knew I was not ingesting any gluten. It's too easy to blame it on that. It took a couple of years for all the inflammation to calm down and now my tTg is very low...but it took awhile. I would also look into the possibility that he has another autoimmune issue related to Celiac. I know you don't want to hear that but it's a possibility.

Good luck!

[T.H.]

Okay, personal question. How much do you know about him and girls? He's 16 now, you said, yes? If he's kissing any girls that eat gluten, or skin that has glutened lotion on it, that can actually give him enough gluten to react to, odd as that is. Might be a gluten ingestion issue that's, well, not food related.

I'm afraid my only personal experience has been what you're sure it's not: I wasn't gluten free enough. I was so sick at first that I was only eating a few whole grains, one oil, salt, meat, and a few veggies. New pans, new cutting boards, whole house was gluten free with me. My blood tests were still high. My oil (Spectrum: processed on a line that processes wheat germ oil) and my gluten-free whole grains turned out to be contaminated enough to keep me sick.

My daughter (13) ran into the same situation, actually. Her sensitivity increased until some of the gluten-free processed products contained too much gluten for her, so we had to start calling companies to find the ones that had <5-10ppm gluten, instead of the majority of gluten free products that only had <20ppm.

I was shocked at how many gluten-free companies didn't test for gluten at all. That's rather like me applying to be a doctor and saying I don't need a medical degree - I'm sure I've studied everything I need to study, right?

However, one thing that might help? When I wasn't healing, my GI doc said that some patients of his were very slow to heal, or didn't heal, if they were consuming certain things that affected the gut. Undiagnosed food allergies or intolerances, synthetic dyes and preservatives, genetically modified foods - he told me that a number of his celiac patients have trouble with some or all of these.

Oh, another thing - oats. Some celiacs are oat sensitive, and they can react to gluten-free oats pretty much like they are wheat, rye, or barley. Bob's Red Mill and Lundberg rice are two companies whose grains come into more contact with gluten-free oats (one a cover crop, one during processing), and many oat sensitive celiacs have reported not feeling so great with products from these two places.

Cross contamination of gluten-free oats is rarely looked at by gluten-free companies, unless they are certified by the CSA.

[Mack the Knife]

I'm in a similar situation. I've been on a strict gluten free diet for 18 months and I'm still feeling sick. I am really careful to the point of paranoia so I'm pretty sure I am eating completely gluten free.

My levels were 120 when I was diagnosed and have dropped to 81. But now they're not budging.

I'm going in for a scope soon to check what's going on in my intestines. I think your son should do the same. It's such an easy procedure and getting more info about your son's health is worth the minor inconvenience.

[SeparateToasters]

I am curious about what you decided to do. My daughter (age 12) was diagnosed with type 1 diabetes and celiac over a year and a half ago. Her TTG IGA level was 78 when they originally screened her followed by an endoscope procedure to confirm diagnosis. A year later they repeated the blood test and her TTG IGA was 74. She is very compliant with her diet so we were very discouraged with the test results. We tried 3 months of no eating out, she only ate food that I prepared for her. She had more blood drawn after the 3 months and the TTG IGA was 69. I am very frustrated. I hate to make her do another biopsy.

[dilettantesteph]

I know the standard response to this question is "well, he probably is still ingesting some gluten". We are pretty sure this is not the case.

I can really understand you saying this. What makes this whole situation confusing is that different celiacs react to different levels of gluten. It is very individual. One celiac will say that they are very sensitive and they don't react to such and such, but that still won't mean that your son won't react to it. Some of us do react to things that others of us don't. You could look at the super sensitive section for examples. Some of us there are sensitive to unbelievably low levels. This reference explains this.

Open Original Shared Link

You could start with the most simple measures to reduce cc. Do you have a gluten free household? Have you checked toiletries, cleaning materials etc.? Do you buy things processed on lines that also process wheat.

Then again, if your son isn't having any symptoms, you could just leave it alone as Peter suggested.

[Gemini]

I am curious about what you decided to do. My daughter (age 12) was diagnosed with type 1 diabetes and celiac over a year and a half ago. Her TTG IGA level was 78 when they originally screened her followed by an endoscope procedure to confirm diagnosis. A year later they repeated the blood test and her TTG IGA was 74. She is very compliant with her diet so we were very discouraged with the test results. We tried 3 months of no eating out, she only ate food that I prepared for her. She had more blood drawn after the 3 months and the TTG IGA was 69. I am very frustrated. I hate to make her do another biopsy.

The reason, most probably, that your daughter's tTg levels are still elevated is because she has Type 1 diabetes also. That alone, can keep levels high.

Twelve is very young to trip for both diseases so she must be an extreme case. Read my earlier post about checking the AGA IgA/IgG levels for dietary compliance. Doctors should not be using the tTg alone for dietary compliance because other autoimmune diseases, like Type 1 and Hashi's thyroid, can raise tTg levels. They make this mistake all the time, causing patients to doubt their ability to follow the gluten-free diet successfully. Too many people obsess about cc when she clearly has multiple autoimmune issues going on. Having 2 or more can really muck up blood work. I know this from personal experience. It took me nearly 3 years to get my tTg levels in the extremely low range because it took that long to heal. I follow a very strict gluten free diet and know I am not ingesting gluten. I have 4 autoimmune diseases myself so understand your problem.

Your daughter's numbers are ever so slowly coming down, although obviously not enough. A year and a half is a short period of time for someone with Celiac and Type 1 to heal and have stellar blood work. You are dealing with a group of people who regularly dish out pills so people will be "cured" in a few days..that is their mind set. They don't understand the concept of it taking 3 or more years to heal from this.

Keep up what you are doing and be patient. It must be horribly difficult to deal with the dietary changes that these 2 diseases present with. I would suggest having them run the Anti-gliadin test also, not just the tTg. You need a full panel re-run, preferably, to get a clear picture of what's going on. That way, you won't get caught up with being obsessive about cc when it may not be an issue. Sounds like you are doing a good job with being stringent...it's hard for a 12 year old to not be able to eat out but I give you credit for taking those steps. Good luck to you!

[Gluten Free Girls]

My two daughters have Celiac along with myself. Just today they had a 6 month check up. My 12 year olds TTG went from 160 to 10. My 6 year old went from 160 to 127. I was devastated. They are on the same exact diet, in the same household with the same procedures. I am 100% certain that my 6 year old has not ingested a single item outside of our household for the entire 6 months. We have not visited a restaurant or dined in anyone else's home. Every birthday snack at school has been communicated to me and I provide a gluten free alternative. I'm scared to death after reading your posts....does this mean that my 6 year old has another health issue? Her Gliadin Peptides dropped from 320 to 20. I'm very confused and it was clear that our doctor did not want to present me with possible explanations, especially in front of my girls. She does have food allergies but a recent test just showed that most of the allergies have calmed since going gluten free. The doctor ordered more blood work to be done. We've worked so hard and been so vigilant. Our daughters only symptoms is a poor immune system, thinning hair, and dried cracked lips from a vitamin B12 deficiency. It took her whole life to get the diagnosis but she has grown and developed normally without any gastrointestinal symptoms. Are we that odd?

[dilettantesteph]

Different celiacs react to different levels of gluten. It is possible that one girl needs a more careful diet than the other. You could try more of a whole foods diet.

[IrishHeart]

The reason, most probably, that your daughter's tTg levels are still elevated is because she has Type 1 diabetes also. That alone, can keep levels high.

Twelve is very young to trip for both diseases so she must be an extreme case. Read my earlier post about checking the AGA IgA/IgG levels for dietary compliance. Doctors should not be using the tTg alone for dietary compliance because other autoimmune diseases, like Type 1 and Hashi's thyroid, can raise tTg levels. They make this mistake all the time, causing patients to doubt their ability to follow the gluten-free diet successfully. Too many people obsess about cc when she clearly has multiple autoimmune issues going on. Having 2 or more can really muck up blood work. I know this from personal experience. It took me nearly 3 years to get my tTg levels in the extremely low range because it took that long to heal. I follow a very strict gluten free diet and know I am not ingesting gluten. I have 4 autoimmune diseases myself so understand your problem.

Your daughter's numbers are ever so slowly coming down, although obviously not enough. A year and a half is a short period of time for someone with Celiac and Type 1 to heal and have stellar blood work. You are dealing with a group of people who regularly dish out pills so people will be "cured" in a few days..that is their mind set. They don't understand the concept of it taking 3 or more years to heal from this.

Keep up what you are doing and be patient. It must be horribly difficult to deal with the dietary changes that these 2 diseases present with. I would suggest having them run the Anti-gliadin test also, not just the tTg. You need a full panel re-run, preferably, to get a clear picture of what's going on. That way, you won't get caught up with being obsessive about cc when it may not be an issue. Sounds like you are doing a good job with being stringent...it's hard for a 12 year old to not be able to eat out but I give you credit for taking those steps. Good luck to you!

GEMINI raises an important point about elevated levels, even with dietary compliance. The diabetes may be why the levels are still reading high and in time, they will come down ---as both she and Peter suggest. I find it interesting that the information from the CDC website concludes with--and "in many healthy people, too." We often say "there are no false positives" on here, but it would seem that isn't entirely true. YES, it is 100% specific for celiac disease--yet, OTHER conditions apparently cause this to occur--which means the doctor would have to be pretty AI disease- savvy to figure it out.

from Celiac Disease Center at Columbia University

"Causes of false positive celiac serologic tests

The endomysial antibody test is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38]. The use of human tTG as the antigen in the test kit adds some greater specificity. Antigliadin antibodies may be present in inflammatory bowel disease [39], collagen vascular disease [40], and in many healthy people as well [41]."

[Gemini]

My two daughters have Celiac along with myself. Just today they had a 6 month check up. My 12 year olds TTG went from 160 to 10. My 6 year old went from 160 to 127. I was devastated. They are on the same exact diet, in the same household with the same procedures. I am 100% certain that my 6 year old has not ingested a single item outside of our household for the entire 6 months. We have not visited a restaurant or dined in anyone else's home. Every birthday snack at school has been communicated to me and I provide a gluten free alternative. I'm scared to death after reading your posts....does this mean that my 6 year old has another health issue? Her Gliadin Peptides dropped from 320 to 20. I'm very confused and it was clear that our doctor did not want to present me with possible explanations, especially in front of my girls. She does have food allergies but a recent test just showed that most of the allergies have calmed since going gluten free. The doctor ordered more blood work to be done. We've worked so hard and been so vigilant. Our daughters only symptoms is a poor immune system, thinning hair, and dried cracked lips from a vitamin B12 deficiency. It took her whole life to get the diagnosis but she has grown and developed normally without any gastrointestinal symptoms. Are we that odd?

No, you are not that odd! There are people out there with virtually no symptoms yet have Celiac. Kids heal differently and everyone has their own timetable with it. There is the possibility that there is another underlying condition, common to Celiac, that may be keeping her tTg high. Or it could be that she is healing more slowly...it can take up to 2 years for tTg levels to normalize if there is a lot of damage. This is not uncommon and hard for the medical profession to understand...they are used to healing patients fast with pills and meds. Becoming well through diet takes a lot longer.

If her anti-gliadin tests have come back low (the one used to test for dietary compliance), then your daughter

is not ingesting gluten. If that were high, then her diet would be suspect. I would see what other tests the doc is running and see what those show before panicking too much. She could just be a slow healer. I wouldn't cut out foods from her diet that may not be causing a problem.