Ttg Increasing Despite 2 Yrs Gfd

[keshav]

Hi All, I have been on gluten free diet (GFD) for last 2 yrs; but my ttg Antibody IgA count shows a continuous rise.. my TTG-IgA level has increased from 180 (2 years back) to around 300 now, when the lab normal is less than 20..though i gained around 5-6 kilograms (kgs) during in first 1.5 yrs, wt has decreased somewhat in last six months..(however ttg level never decreased)..I have been on a strict home-made gluden free diet (rice, sorghum, spices, veg and fruits only) since Aug-08, increasing ttg level is a concern for me. I still go to motion around 3 times a day and feel pain in legs and fatigue every evening.

My anti-thyroid antibodies are normal (with ANTI-THYROID PEROXIDASE ANTIBODIES of 39.2 when less than 60 is negative). However, TSH level is high at 5.10 when normal range is 0.27 - 4.10. T3 and T4 are normal. When anti-thyroid antibodies are normal, can high TSH level be the reason of high ttg-iga level? As of now, i m negative on ANA, ASMA, RA factor, diabetic...

In addition to high TTG-IGA, positive endomysial, positive anti gliadin and high TSH; I also have high EOSINOPHILS at the level of 10% when normal range is 1-6%. I also have low Vitamin D3 (25-Hydroxy) at level of 10 on a normal scale of 27.7 to 107. Besides, I suffer from Asthma since the age of 4 years.

It would be nice if one could guide me for the cause of stool frequency of 3-4 times and fatigue along with rising ttg levels despite 'VERY' strict gluten free diet for last 2 years (celiac detected at age of 27 in Sep-08). I have been only on home made food (gluten is not brought at all in my home) and medicines have been suggested by Gastroenterologists. Can it be Refractory Coeliac diseases wherein healing does not occure even after gluten free diet? Also, if some one can share what happens in Refractory Celiac Disease... After taking gluten free diet in Refractory Coeliac disease patients, does ttg level remain high OR "only villous atrophy remains present but ttg levels reduce"?

Sorry for the long post...but really frustrated and clueless on what next? could someone tell which diseases other than Celiac, Hashimoto or Type I diabetics can cause INCREASING ttg level? Gastroenterlogists on my side are saying that some people continue to have high ttg despite GFD but they are unable to explain why it is increasing further?

Could you please share any view/solution for the above symptoms??

[Skylark]

TTG can come up in other autoimmune diseases. I think they find it sometimes in rheumatoid arthritis. Thing is, your anti-EMA are very specific for celiac. Also, you shouldn't have anti-gliadin if you're not getting exposed to gluten.

If I were you, I would check meds, vitamins, toothpaste, shampoo, dog food, any possible source of gluten. Drop distilled vinegars and anything derived from grains if you haven't already. Also, if you buy any of the gluten-free flours you should probably stop as they have been shown to occasionally be contaminated with gluten.

[kayo]

Hi keshav, sorry to hear you're having some difficulties. Something in your post jumped out at me that may be of some help you. The elevate Eos indicates that you are having an ongoing allergic response. My doc picked up on this and theorized that my body was making too much histamine in my gut and therefor reacting to everything I ate as if I were allergic/intolerant of it. I had constant abdominal pain and big D following a treatment for SIBO. I should have felt better but I felt awful. I was on a diet of rice and chicken and still having reactions. He started me on a med that is helping. It's a histamine-blocker called gastrocrom. It's been about 3 weeks and I'm doing really well. I still have some D now and then but the pain is gone. I also have issues with fructose and fructans so I follow the FODMAP diet. That has helped tremendously too. Good Luck!

[keshav]

TTG can come up in other autoimmune diseases. I think they find it sometimes in rheumatoid arthritis. Thing is, your anti-EMA are very specific for celiac. Also, you shouldn't have anti-gliadin if you're not getting exposed to gluten.

If I were you, I would check meds, vitamins, toothpaste, shampoo, dog food, any possible source of gluten. Drop distilled vinegars and anything derived from grains if you haven't already. Also, if you buy any of the gluten-free flours you should probably stop as they have been shown to occasionally be contaminated with gluten.

Thanks for your reply. I am also wondering that i may be suffering from other autoimmune disease along with celiac. Rheumatoid Arthritis is negative, but TSH is high at 5.1 (but Thyroid antibodie is negative, T3 and T4 are normal)..Have checked for gluten content in toothpaste, shampoo and lip guard. I dont buy any thing other than rice, pulses and spices , veg n fruits...Gluten contamination is not a possibility most likely but other diseaes are. should i consult immunologist in stead of gastro?

[kayo]

should i consult immunologist in stead of gastro?

If you have insurance and can afford to so I would suggest seeing both. I have one of each and also an allergy doc. It can sometimes take a bit to find docs worth seeing but once you get a good team assembled it's so worth it.

[keshav]

If you have insurance and can afford to so I would suggest seeing both. I have one of each and also an allergy doc. It can sometimes take a bit to find docs worth seeing but once you get a good team assembled it's so worth it.

Thanks Kayo for your both replies. I am in touch with a pulmonologist for my Asthma besides gatro for celiac. However, none of them working as a team. As per your advice and my complications of increasing ttg level despite strict control on diet, I will give it a try by consulting immunologist. He may try things which other docs may have missed. However, its difficult to get a team here in India. I will have to consult various docs separately and communicate to each of them what others are saying :-O Nevertheless, i am desperate to diagnose what is causing the rise of ttg and whether this in turn is affecting my intestine so will try to repeat biopsy soon. Thanks again !!

[sb2178]

TTGs can also be high in Crohn's disease, rarely, but unless you have joint pain, Crohn's is probably more likely than RA. Maybe also in colitis, but I don't remember reading anything about it.

Leg pain could definitely be from vitamin D deficiency-- hope you are taking high dose rx D. If not, get it.

[poopedout]

I found a couple of papers that dicussed failure to respond to a gluten free diet. One said this: "The case patient is among a small proportion of individuals with celiac disease whose illness does not respond to a gluten-free diet. The 3 main causes of treatment failure are (i) inadvertent or unintentional failure to adhere to a strict gluten-free diet; (ii) other complicating or coexisting conditions such as small-bowel bacterial overgrowth, lactose intolerance, or microscopic colitis; and (iii) disease refractoriness to a gluten-free diet."

There are two types of refractory celiac disease, polyclonal and clonal. The clonal type is more serious and usually people with it have more weight loss which is persistent. I don't think there is a test to distinguish the two types yet. It is only done in research.

[poopedout]

I found another paper that says that the anti-tTG levels usually drop in people with refractory celiac disease who are adhering to a gluten free diet. There is another substance that is characteristic of RCD. "Taken together, the antibodies persisting in the sera of RCD patients adhering strictly to GFD were IgA antibodies to CRT, while IgA antibodies against gliadin and tTG were below cut-off values." I will see if I can send a link.

Open Original Shared Link

That's the best I can do. The old copy/paste technique.

There may be some other reason for your increasing anti-tTG levels.

The villous atrophy does persist in RCD.

[keshav]

I found another paper that says that the anti-tTG levels usually drop in people with refractory celiac disease who are adhering to a gluten free diet. There is another substance that is characteristic of RCD. "Taken together, the antibodies persisting in the sera of RCD patients adhering strictly to GFD were IgA antibodies to CRT, while IgA antibodies against gliadin and tTG were below cut-off values." I will see if I can send a link.

Open Original Shared Link

That's the best I can do. The old copy/paste technique.

There may be some other reason for your increasing anti-tTG levels.

The villous atrophy does persist in RCD.

Thanks for your replies. Will try to get the "IgA anti-calreticulin (CRT) antibodies" test done. That could be helpful in diagnosing RCD. thanks again.