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Old 03-10-2014, 08:33 PM #1
korkyo korkyo is offline
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Default Test result help for celiac disease

HI,
So glad I found this site.
I'll keep the story short. My daughter is 18, I am 47. We are both ceilac.
I was non-symptomatic (sp) but my numbers were off the charts when I was tested. The nurse could not understand why I was not pratically comatose.

My daughter was tested because it's heriditary and because of stomach issues, and she is celiac too and feels much better.

My son is 15 and was tested 5 years ago also and was negative. Lately he's been super tired, falling asleep in class and such. No other symptions. His test came back positive but his Dr. is a little on the fence as to weather or not he NEEDS to go GF and that is what has me confused.

Test resutls are:

transglutaminase ab iga.... 10 u/ml <4 is the goal.
Immunoglobulin 217mg/dl.................normal is 57-300.
endomysial antibody SCR ...positive.
Endomysial antibody tither 1:40 ....................<1.5 is normal.


Thanks for the help. I really appreciate it/
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Old 03-11-2014, 06:33 AM #2
glenntaj glenntaj is offline
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Default Even just from that transglutaminase titer result--

--I would go gluten-free.

Transglutaminase IgA titers are most closely associated with the existence of gluten-mediated intestinal damage (some of the other tests, like anti-gliadin, are less well correlated with that and may be more correlated with manifestations of gluten sensitivity outside the gastrointestinal tract).

In the end, of course, no one needs ANY doctor's permission to remove gluten from diet. We can all get along quite nicely without gluten, even if we do not have issues with it. Going gluten-free can certainly be inconvenient, but one does not need to miss out on anything essential in going gluten free, as all essential nutrients can be obtained through non-gluten sources. The process just requires vigilance and planning.
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"Thanks for this!" says:
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Old 03-11-2014, 04:30 PM #3
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Default

Thanks,
I guess my real question is are those numbers enough to be called celiac?
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Old 03-12-2014, 06:05 AM #4
glenntaj glenntaj is offline
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Default The gold standard--

--for frank celiac would be a gastrointestinal biopsy with evidence of compromised villi in the small intestine. Even this is not always certain, as, depending on where the samples are taken, evidence of this may be missed, especially if the damage in early and patchy.

But, failing that, the blood test results to seem to show at least some reactivity to gluten, so it couldn't hurt to gluten free, and certainly might help.

As I said in the previous post, there are manifestations of gluten sensitivity that occur outside the small intestine that some would not refer to as celiac (dermatitis hepatiformis, gluten ataxia, etc.) that would still indicate a need for a gluten-free diet.
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Old 03-13-2014, 12:19 PM #5
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Default Just a thought...

I am so sorry you and your family are facing these issues...but so many are these days.

In my family, we have several members who are Celiac. I recently had one of my nieces diagnosed with Hoshimotos Thyroiditis, which is considered a pre-cursor many times. Because of this situation, I have suggested that my whole family get the genetic test, because as my Hematologist at Mayo Clinic has said, some may have the genes without the actual "trigger" but still have issues. Here is a bit of information I shared with my family:

The genes can be classified into two groups:
1. immune regulatory genes (CTLA-4, HLA and PTPN22)
2. thyroid specific genes (thyroglobulin receptor gene)
Some of the genes vary in different ethnic groups. Hashimoto’s thyroiditis is associated with HLA-DR3, HLA-DR4 and HLA-DR5 genes in Caucasians. The HLA-DR3 is also responsible for the susceptibility for type 1 diabetes and Grave’s disease in families with a genetic predisposition. Furthermore, an association between Hashimoto’s and HLA-DQw7 has also been reported in Caucasians, while HLA-DRw53 was found in Japanese and HLA-DR9 in Chinese population.
Other autoimmune diseases are also associated with the same genes as a Hashimoto’s thyroiditis. Prevalence of celiac disease was noted to be in up to 19% of patients with type 1 diabetes mellitus, up to 4.5% in Grave’s and 13% in Hashimoto’s disease. The coexistence of celiac and autoimmune thyroid disease is partly due to a common genetic predisposition. Both celiac disease and Hashimoto’s thyroiditis are reported to be associated with the genes CTLA-4, HLA-DQ2 and HLA-DQ8 and share common trigger of the disease gluten.
If you have Hashimoto’s and/or celiac disease and worry that your children can also get these conditions you can order a HLA-DQ2 and HLA-DQ8 Gene Test that can evaluate their genetic predisposition.

I have the HLA genetics, and am currently being tested for more autoimmune diseases due to a neurologic problem. I was diagnosed very latent and therefore my immune system has been aggravated. I have told all of my children to go gluten free, if I had only known about this years ago....my mother died when I was 9 years old....I did not know that my uncle her brother had Celiac until things really started happening about 4 years ago...I am 61 years old....now I pray to help our family...
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Old 07-05-2014, 08:31 PM #6
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Default

I went gluten-free on my own because of a wide range of inexplicable health problems that worsened in middle age. I was gluten-free for 2 years. Then I did a gluten challenge of 1/2 teaspoon of flour. 2 days later, I had a body-wide flare up of neuropathy (one of my worst symptoms). I told this to my doctor. She had little faith in the Celiac tests. She thought they were unreliable and told me not to bother being tested, just never eat gluten again. So, I would go by symptoms, not tests.
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Old 08-18-2014, 05:48 PM #7
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Default Please Help!!

My 3 year old son had the following Celiac Panel:

Serum IgA: 30 (44-189)
Gliadin IgA: 6
Gliadin IgG: 21 (High)
Transglutaminase IgA: <2 (0-3)
Transglutaminase IgG: 6 (0-5)
Endomysial IgA: Negative
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Old 08-19-2014, 06:03 AM #8
glenntaj glenntaj is offline
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Default The problem here--

--is that the other IgA tests would probably not give accurate results for antibodies if total igA is low.

Still the IgG anti-glidain result implies there is antibody activity to gluten. the anti-gliadin test is the most sensitive but least specific test for celiac/gluten-sensitivity. Since a gluten-free diet does not have a downside--one can't HURT oneself by eliminating gluten from the diet and eating other things--it might be a good idea to go gluten-free anyway, and see if symptoms (whatever of those there are--you didn't mention any) improve.
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