Gluten Free Since 7 Months, Ttg Levels No Improvement

[Nannu]

Hi All,

I am new to this forum. I am from India. My daughter 5 1/2 yrs old now diagnosed with Celiac 7 months ago. Her anti TTG IGA levels were at 297, reference range (0.5 - 20), now after 7 months of strict gluten free diet, levels remained at 291. I am shocked and can't trust the report at all. Has anyone else had similar experience. Please share. I feel lost.

Thanks

Nannu

[GlutenFreeManna]

Hi All,

I am new to this forum. I am from India. My daughter 5 1/2 yrs old now diagnosed with Celiac 7 months ago. Her anti TTG IGA levels were at 297, reference range (0.5 - 20), now after 7 months of strict gluten free diet, levels remained at 291. I am shocked and can't trust the report at all. Has anyone else had similar experience. Please share. I feel lost.

Thanks

Nannu

Hi Nannu,

You've come to the right place. Many parents here have had similar problems and found they needed to get more strict. In order to help you better, a few questions: What are you feeding your daughter on a regular basis? Did you make your home gluten-free or is there still gluten around? Does your daughter understand that she can't eat gluten and why? At age 5 it's very easy for her to sneak foods she is not supposed to have. What about at school--are her teachers on board and working with you to make sure she is gluten-free in school? Also is she playing with things that have gluten like playdough? These are just a few things to think about.

[Skylark]

Hi and welcome. Another thing that's been an issue for some forum members was gluten in pet food. The dust from pet foods gets around the house and can be too much gluten for a celiac to tolerate.

[Nannu]

Thanks a ton for your responses. Regarding all the questions that have been mentioned, i have been going through internet time and again and tried to follow everything in school and at home. However there could be minimal CC that might have happened which is very difficult to control as she does interact with other children, hold hands etc. Would that have stopped her gut to heal to this extent that situation seems to be same as it was seven months ago.

Seven months back, she was very poor on health - vitamin D low, iron low, hb low, hieght at 10th percentile and weight at 25th percentile. She had bowel symptoms and i used to feel that she is allergic to almost all foods, we didn't know the root cause till then.

After going Gluten free all her levels above improved drastically including hieght and weight (she is at 50th percentile in hieght and 75th percentile on weight now...all other levels are also much better and well within normal range. Just hb has been a concern...is increasing slowly as she is a thal minor also. stomach issues completely settled. Just these TTG levels are totally contradictory and alarming. Could all this be possible without gut being healed? How is her absorption happening with damage not repaired. Our Dr did tell us sheepishly that in 5% cases it does take 6 months to 1 year for levels to get back to normal, but she was not very confident about that. I am totally confused and scared.

Has anyone amongst you all smart people here had such kind of history? what were the steps taken?

Thanks

Nannu

[Nannu]

Hi All,

I am posting it again, hoping to get some answers.

Thanks a ton for your responses. Regarding all the questions that have been mentioned, i have been going through internet time and again and tried to follow everything in school and at home. However there could be minimal CC that might have happened which is very difficult to control as she does interact with other children, hold hands etc. Would that have stopped her gut to heal to this extent that situation seems to be same as it was seven months ago.

Seven months back, she was very poor on health - vitamin D low, iron low, hb low, hieght at 10th percentile and weight at 25th percentile. She had bowel symptoms and i used to feel that she is allergic to almost all foods, we didn't know the root cause till then.

After going Gluten free all her levels above improved drastically including hieght and weight (she is at 50th percentile in hieght and 75th percentile on weight now...all other levels are also much better and well within normal range. Just hb has been a concern...is increasing slowly as she is a thal minor also. stomach issues completely settled. Just these TTG levels are totally contradictory and alarming. Could all this be possible without gut being healed? How is her absorption happening with damage not repaired. Our Dr did tell us sheepishly that in 5% cases it does take 6 months to 1 year for levels to get back to normal, but she was not very confident about that. I am totally confused and scared.

Has anyone amongst you all smart people here had such kind of history? what were the steps taken?

Thanks

Nannu

[noglutenforme]

Hey im sorry to hear that but listen, i hear indians eat allot of dairy no? just like the rest of the world i suppose, but the thing that many people do not realise is that in all dairy foods contain a substance called galactose and a compound in the galactose is changed into gluten once in the body, so really my friend that could make all the difference i hope for sure that your daughter can heal herself. Good luck.

[sa1937]

Hey im sorry to hear that but listen, i hear indians eat allot of dairy no? just like the rest of the world i suppose, but the thing that many people do not realise is that in all dairy foods contain a substance called galactose and a compound in the galactose is changed into gluten once in the body, so really my friend that could make all the difference i hope for sure that your daughter can heal herself. Good luck.

Whoa! Galactose is a simple sugar having nothing to do with gluten or changing into gluten. That doesn't mean that someone could not be affected by it just as they are by being lactose-intolerant. Open Original Shared Link

[GlutenFreeManna]

Hey im sorry to hear that but listen, i hear indians eat allot of dairy no? just like the rest of the world i suppose, but the thing that many people do not realise is that in all dairy foods contain a substance called galactose and a compound in the galactose is changed into gluten once in the body, so really my friend that could make all the difference i hope for sure that your daughter can heal herself. Good luck.

Can you please give a reference for this? I have never heard such a crazy thing in my life. Dairy cannot "turn into gluten"! Dairy is naturally gluten-free. Now that said, many of us DO have trouble with dairy and if your daughter is still having stomach issues dairy may be to blame. That would not explain the high Ttg though.

I've heard varying numbers ont he amount of time it takes to heal. Some people say it can take up to two years to completely heal. If you are sure you have kept your daughter as gluten-free as possible then just keep being strict and get retested in another 6 months. There is such a thing as refractory celiac--celiac which does not heal on a gluten-free diet but with all the other thing you said that she improved on (vitamin levels, height and weight etc) it sounds like she IS doing better.

[Skylark]

Hey im sorry to hear that but listen, i hear indians eat allot of dairy no? just like the rest of the world i suppose, but the thing that many people do not realise is that in all dairy foods contain a substance called galactose and a compound in the galactose is changed into gluten once in the body, so really my friend that could make all the difference i hope for sure that your daughter can heal herself. Good luck.

That's wildly incorrect. You were sleeping in biology class?

Galactose is a sugar, gluten is a protein. The two do not interchange magically in the gut. Among other things, it would require an alchemist stone to transmute oxygen to nitrogen. If you can do that kind of alchemy, you may as well start pooping gold!

[Nannu]

Hi,

My case still doesn't look sorted and my confusion is still troubling me. A few questions that arise in this confusion.

Does High TTG levels mean that Villi healing has not happened? or it is the concentration of antibodies in the blood stream and is not directly related to Villi healing? When one gets accidentally glutened, does the TTG levels increase suddenly, to what extent? Is there a pattern that these TTG levels follow? What are the highest levels has anyone ever heard of?

Why so many questions is because my daughter looks very fine to me since we started on gluten-free diet. I have been reading in this forum about people having symptoms and issues with accidental glutening. I have never felt anything similar with my daughter. Initially doctor took her off dairy for 2 months but after that she has been consuming dairy and is doing absolutely fine with it. All her deficiences have been corrected including Vitamin D. Hieght and weight gain issues resolved completely. HB issue is also imrpoving slowly as she is a thal minor also. I understand that the tip of Villi is responsible for enzyme that digests lactose. If healing has not happened, how is she responding to dairy positively? Also, she goes normal stools 1-2 times a day. I see no reason why her TTG levels should remain at 291 after 7 months on GFD as compared to 297 (seven months back).

Please help me sort out this. I need to wait for another 3 months before i go for a retest, but any information would be comforting for me and will give me more calrity about what to expect. Has anyone got a retest after 1-2 months and seen drastic difference in TTG levels? Please share.

Thanks

Versha

[GlutenFreeManna]

Hi,

My case still doesn't look sorted and my confusion is still troubling me. A few questions that arise in this confusion.

Does High TTG levels mean that Villi healing has not happened? or it is the concentration of antibodies in the blood stream and is not directly related to Villi healing? When one gets accidentally glutened, does the TTG levels increase suddenly, to what extent? Is there a pattern that these TTG levels follow? What are the highest levels has anyone ever heard of?

Why so many questions is because my daughter looks very fine to me since we started on gluten-free diet. I have been reading in this forum about people having symptoms and issues with accidental glutening. I have never felt anything similar with my daughter. Initially doctor took her off dairy for 2 months but after that she has been consuming dairy and is doing absolutely fine with it. All her deficiences have been corrected including Vitamin D. Hieght and weight gain issues resolved completely. HB issue is also imrpoving slowly as she is a thal minor also. I understand that the tip of Villi is responsible for enzyme that digests lactose. If healing has not happened, how is she responding to dairy positively? Also, she goes normal stools 1-2 times a day. I see no reason why her TTG levels should remain at 291 after 7 months on GFD as compared to 297 (seven months back).

Please help me sort out this. I need to wait for another 3 months before i go for a retest, but any information would be comforting for me and will give me more calrity about what to expect. Has anyone got a retest after 1-2 months and seen drastic difference in TTG levels? Please share.

Thanks

Versha

Unfortunately, reactions and symptoms are not directly tied to the amount of damage or the level of antibodies someone has. Individuals vary on how severe their symptoms are and how high their antibodies are. Some people have bad symptoms from tiny amounts of gluten exposure but very low antibodies no matter how sick they get. Some people have high antibodies and no symptoms at all.

I did have another idea after re-reading your reply. You said you are from India. Are you living there now? My husband has traveled through parts of India and asked about gluten-free options and was told many of the spices had flour added and would not be safe. He went to another area (different side of the country) and was told the same spices were safe there. When he asked for more detail why these things were gluten-free in one area and not gluten-free in another he was just told some areas are better than others in labeling the spices accurately (these were from merchants in an open market type place). That said, how well can you trust the spices to not have flour added or be contaminated? Also are you using the same spices you used prior to making your daughter gluten-free? These can get contaminated with flour when you bake and may have enough trace amount to keep her antibodies high yet because she is on a mostly gluten-free diet she is improving in other ways.

It is also possible the second test was misread or inaccurate. Have you gotten the test results to read for yourself? Even if it is accurate it ia small improvement and it's great that she has recovered in her vitamins and growth. Try not to let this small progress in the TtG level bother you unless you continue to see no improvement over the course of several years. I have read on this forum some people take 2 years to heal.

[Nannu]

In India, there is a lot of contamination everywhere when it comes to processed foods from market. About spices, when we started of, i did change my spice box and replaced all the spices. Having said that, we use only branded packed spices and read ingredients carefully. These spices are approved by celiac society here and also used by some people who are diagnosed some 7-8 years back here in India and they have been getting their levels right. so, i guess we are safe on that part. You are very right, patience is the key and we need to continue doing what we were doing earlier...though we have become more strict now. We are in India only.

So, with this, can i assume that atleast some healing has happened for my daughter and levels will come down and are not indicative of how her intestine is at a particular moment.

thanks once again, you have been very helpful.

Nannu

Unfortunately, reactions and symptoms are not directly tied to the amount of damage or the level of antibodies someone has. Individuals vary on how severe their symptoms are and how high their antibodies are. Some people have bad symptoms from tiny amounts of gluten exposure but very low antibodies no matter how sick they get. Some people have high antibodies and no symptoms at all.

I did have another idea after re-reading your reply. You said you are from India. Are you living there now? My husband has traveled through parts of India and asked about gluten-free options and was told many of the spices had flour added and would not be safe. He went to another area (different side of the country) and was told the same spices were safe there. When he asked for more detail why these things were gluten-free in one area and not gluten-free in another he was just told some areas are better than others in labeling the spices accurately (these were from merchants in an open market type place). That said, how well can you trust the spices to not have flour added or be contaminated? Also are you using the same spices you used prior to making your daughter gluten-free? These can get contaminated with flour when you bake and may have enough trace amount to keep her antibodies high yet because she is on a mostly gluten-free diet she is improving in other ways.

It is also possible the second test was misread or inaccurate. Have you gotten the test results to read for yourself? Even if it is accurate it ia small improvement and it's great that she has recovered in her vitamins and growth. Try not to let this small progress in the TtG level bother you unless you continue to see no improvement over the course of several years. I have read on this forum some people take 2 years to heal.

[Skylark]

I think if I were you I would ask for a repeat biopsy in another year or two if the TTG doesn't start coming down. A normal biopsy would show her TTG is not connected to villous damage. If she's doing so well, it really sounds like her villi are healing despite the TTG.

Is there any chance the thalassemia is throwing off the TTG tests? TTG is not 100% specific to celiac disease and if the thalassemia has caused a bit of liver trouble for her, that could be causing TTG antibodies independent of the celiac. Also there is TTG in red blood cells so I also wonder about whether there is more TTG in her liver and spleen than normal and if that might affect celiac testing? I can't find anything on thalassemia and celiac testing to know. Did she get anti-gliadin tests or anti-EMA? Those are more specific for celiac alone and might be falling faster than TTG.

I have a question for you. Do you know if the little boxes of MDH and Shan brands of masalas are gluten-free if there is no wheat listed? I can get them at an Indian specialty food store here in the states but I've never been sure how safe they are for celiacs.

[Nannu]

I think if I were you I would ask for a repeat biopsy in another year or two if the TTG doesn't start coming down. A normal biopsy would show her TTG is not connected to villous damage. If she's doing so well, it really sounds like her villi are healing despite the TTG.

Is there any chance the thalassemia is throwing off the TTG tests? TTG is not 100% specific to celiac disease and if the thalassemia has caused a bit of liver trouble for her, that could be causing TTG antibodies independent of the celiac. Also there is TTG in red blood cells so I also wonder about whether there is more TTG in her liver and spleen than normal and if that might affect celiac testing? I can't find anything on thalassemia and celiac testing to know. Did she get anti-gliadin tests or anti-EMA? Those are more specific for celiac alone and might be falling faster than TTG.

I have a question for you. Do you know if the little boxes of MDH and Shan brands of masalas are gluten-free if there is no wheat listed? I can get them at an Indian specialty food store here in the states but I've never been sure how safe they are for celiacs.

Hi Skylark,

The test that we have done is anti TTG IgA. Thanks for your suggestions and they look somewhat relevant in our case. We are going to repeat her tests in 3 months time and we'll also try to do one of the tests that you have mentioned? Do you think there is any emergency to do these findings right now? Now, about your query of MDH masalas : MDH masalas are safe as per celiac society here, but i am myself struggling to grind the solid masalas at home myself so that if there is any contamination, it is ruled out, but still settling on that. I am sure you know that we need to avoid masalas containing asoefetida. Regarding shan brand, i don't have any experience, so i would not be able to comment.

Thanks again

Nannu

[Skylark]

Thanks for the information about the masalas. I'll stick to MDH. I'm glad you confirmed the asoefetida - I had been avoiding it but I wasn't completely sure. It's uncommon in the US so it's not on celiac lists.

I'm not a doctor, but if she were my daughter and doing so well I don't think I would try to get more tests done right away. She really does sound much better and with her growing well and the deficiencies resolved I don't see an emergency.

It's a shame they didn't do any tests other than TTG at the outset. If anti-EMA or anti-deamidated gliadin come back negative it doesn't tell you much. She could have been negative all along. The good thing is the specificity - you know a positive result would be from gluten and not another kind of autoimmunity. Hopefully her next round of antibodies will fall!