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trishatrue

High Transglutaminase

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Help! My daughter was diagnosed with Celiac 6 months ago and had followed a strict diet since. Recent blood results indicate that transglutaminase has increased instead of decreasing. Her doctor insists she has not been honest about her diet. I vehemently disagree, as she and I read everything that goes in her lips and on her body and we are extremely careful concerning cross-contamination. I need help! Has anyone had a similar experience? Is there another disease that could cause hight translutaminase to be present?

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There are other conditions that can cause an elevated tTg reading, including Type 1 Diabetes, Hashimoto


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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I don't know enough about refractory celiac to comment about that. I did find this, however:

http://tinyurl.com/2k8cyk

Refractory celiac disease. For the purpose of this review, patients with refractory celiac disease are patients with true celiac disease and villous atrophy (i.e., not a misdiagnosis) who do not, or no longer, respond to a GFD. Although the most common reason for failure to respond to a GFD is dietary indiscretion or unknown exposure to gluten, refractory celiac disease also occurs in patients on a GFD who have developed a complication such as ulcerative-jejunoileitis, or enteropathy-associated lymphoma. Patients with refractory celiac disease do not necessarily have positive serology for celiac disease. Refractory celiac disease was reviewed in the context of the requested objectives.

I know you said you have already done this, but I would go back again and triple check everything that goes on or in her body. This includes food, supplements, OTC and prescription medications, shampoo, hand lotion, etc. Gluten can hide in the darndest places. Do you have any gluten in the home at all? Would you be willing to make your home totally gluten-free for a few months to see if it made any difference? CC is so hard to track down sometimes, and some people are extremely sensitive to it.

I would also ask the doctor to run the Anti Gliadin antibodies. This is another tool in determining dietary compliance. Maybe it would tell a different story than the TtG.

http://celiacdisease.net/assets/pdf/CDCFac...lowUpTests7.pdf

How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on the gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis.

.....

Follow Up Test #1:

tTG-IgA: This test result should be negative

The numerical value of the test doesnt matter as long as the result is negative.

Follow Up Test #2

Anti-gliadin IgA: This result should have a very low negative value

In this case, the numerical value does matter, because a high negative test result still indicates that a patient is eating gluten. A low negative indicates that the diet is working well.

.

I truly hope you get to the bottom of things soon.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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I don't know enough about refractory celiac to comment about that. I did find this, however:

http://tinyurl.com/2k8cyk

I know you said you have already done this, but I would go back again and triple check everything that goes on or in her body. This includes food, supplements, OTC and prescription medications, shampoo, hand lotion, etc. Gluten can hide in the darndest places. Do you have any gluten in the home at all? Would you be willing to make your home totally gluten-free for a few months to see if it made any difference? CC is so hard to track down sometimes, and some people are extremely sensitive to it.

I would also ask the doctor to run the Anti Gliadin antibodies. This is another tool in determining dietary compliance. Maybe it would tell a different story than the TtG.

http://celiacdisease.net/assets/pdf/CDCFac...lowUpTests7.pdf

I truly hope you get to the bottom of things soon.

Thank you for the advice. I spent my weekend going over everything in my cupboard's (kitchen & bath) that she consumes and I found a hair product she uses with her hair straightener, mascara, and hand lotion she had in her locker at school. My question is: since these products are not digested, can they elevate her TtG? She does not suffer from any rashes or apparent complications from them (actually, she is completely asymptomatic except for extreme osteopenia that has caused bone deformity in her legs; it took 3 years to figure out it was celiac causing this). Regardless, they have gone in the garbage, as will the rest of the products in my home if it compromises my daughters health.

We did have her blood re-drawn yesterday to confirm the previous results. I wish they had suggested the Anti Gliadin test as well! However, if the results are the same we will ask for it.

I am grateful for your help. Thank you.

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