Oh Boy...i Think I Won The Ab Lottery...

[beachbirdie]

Well, my doc did a celiac test last fall and didn't test all the antibodies so I went and got another test this month after glutening up lightly (2 breads a day) for about 6 months.

Negative on most, but POSITIVE on my TtG IgG.

Are these the TtG antibodies that can be related to ANY autoimmune condition? Or is what the lab paper says (these are an endomysial antigen) true?

Do I actually have celiac?

Oh boy. Here are the results as I got them from the lab:

Tissue Transglutaminase (tTG) has been identified

as the endomysial antigen. Studies have demonstr-

ated that endomysial IgA antibodies have over 99%

specificity for gluten sensitive enteropathy.

t-Transglutaminase (tTG) IgG164989 10 0-5 U/mL POSITIVE

Negative 0 - 5

Weak Positive 6 - 9

Positive >9

Negative results are below:

Immunoglobulin A, Qn, Serum001784 350 70-400 mg/dL

Deamidated Gliadin Abs, IgA161652 3 0-19 units

Deamidated Gliadin Abs, IgG161693 2 0-19 units

t-Transglutaminase (tTG) IgA164643 <2 0-3 U/mL

Thanks for looking at these with me.

[Skylark]

TTG-IgA is one of the antigens in anti-EMA, but the reactions are not identical. TTG-IgA can appear in other autoimmune diseases and inflammatory bowel diseases while anti-EMA is 99% specific for celiac. For example, TTG-IgA can appear in Hashimoto's. Open Original Shared Link

I don't know as much about TTG-IgG in people with normal IgA. I don't think it's as specific for celiac. I think we did have a couple people on the board with TTG-IgG as their only positive test who turned out to be celiac by biopsy. With the negative TTG-IgA and DGP, if I were you I'd be asking to have a endoscopy scheduled. I'd be wondering if it was just a Hashimoto's inflammation flare-up with the wheat.

[Cara in Boston]

My son is one of the people who tested positive ONLY on the IgG tests. His IgA tests were all normal and his total IgA levels were fine. His genetic test indicated a "low" probability of celiac. The first GI said he didn't have celiac. We took him to Children's Hospital for a second opinion and he was found positive on the biopsy. I would go for the endoscopy and then go gluten free after (no matter what the results). Then you can see if you feel better gluten free while you search for more answers.

Good luck to you -

Cara

[beachbirdie]

TTG-IgA is one of the antigens in anti-EMA, but the reactions are not identical. TTG-IgA can appear in other autoimmune diseases and inflammatory bowel diseases while anti-EMA is 99% specific for celiac. For example, TTG-IgA can appear in Hashimoto's. Open Original Shared Link

I don't know as much about TTG-IgG in people with normal IgA. I don't think it's as specific for celiac. I think we did have a couple people on the board with TTG-IgG as their only positive test who turned out to be celiac by biopsy. With the negative TTG-IgA and DGP, if I were you I'd be asking to have a endoscopy scheduled. I'd be wondering if it was just a Hashimoto's inflammation flare-up with the wheat.

Thanks much! As always, I appreciate your thinking. I guess the possibility is there to have damaged villi since I also have the DQ2. From reading around the 'net, it seems the only other specific disease associated with the IgG is Crohn's, and I know I don't have that after colonoscopy. I'd like to assume it's the Hashimoto's, and guess it's a good sign that it's good my family is back to gluten-free living. Now, though, it's going to be easier to keep my husband on board. He responded favorably after seeing how I tested. It would be interesting to have the scope, it's very tempting to ask for it; I noticed the Food Doctor, Dr. Scott Lewey even supports scoping in cases like this.

My son is one of the people who tested positive ONLY on the IgG tests. His IgA tests were all normal and his total IgA levels were fine. His genetic test indicated a "low" probability of celiac. The first GI said he didn't have celiac. We took him to Children's Hospital for a second opinion and he was found positive on the biopsy. I would go for the endoscopy and then go gluten free after (no matter what the results). Then you can see if you feel better gluten free while you search for more answers.

Good luck to you -

Cara

Thanks for sharing your experience, Cara. Glad you were able to find good doctors for your son. I am really tempted to ask for the scope. Not sure how to go about it since my tests weren't done in a GI office. Guess I'll check with the one who did my colonoscopy and see what they say. We're destined to go gluten free anyway. My daughter has so much pain when she eats wheat, she's off of it now. All her blood tests came back negative. We did not get her genes done, all this testing out of pocket is getting expensive {sigh}.

Thanks again to you both.

[Bubba's Mom]

Thanks much! As always, I appreciate your thinking. I guess the possibility is there to have damaged villi since I also have the DQ2. From reading around the 'net, it seems the only other specific disease associated with the IgG is Crohn's, and I know I don't have that after colonoscopy. I'd like to assume it's the Hashimoto's, and guess it's a good sign that it's good my family is back to gluten-free living. Now, though, it's going to be easier to keep my husband on board. He responded favorably after seeing how I tested. It would be interesting to have the scope, it's very tempting to ask for it; I noticed the Food Doctor, Dr. Scott Lewey even supports scoping in cases like this.

Thanks for sharing your experience, Cara. Glad you were able to find good doctors for your son. I am really tempted to ask for the scope. Not sure how to go about it since my tests weren't done in a GI office. Guess I'll check with the one who did my colonoscopy and see what they say. We're destined to go gluten free anyway. My daughter has so much pain when she eats wheat, she's off of it now. All her blood tests came back negative. We did not get her genes done, all this testing out of pocket is getting expensive {sigh}.

Thanks again to you both.

I would ask for the endoscope. The blood tests have a false negative rate of 20-30%. My blood test was negative, but I had severe villi flattening which wouldn't have been found if we stopped looking after doing the blood work.

Something elevated one of your levels? It seems like a good idea to get a scope to get a better picture of what's going on?

I also noticed in your siggy that you are a DQ2.2...same as me.

[beachbirdie]

I would ask for the endoscope. The blood tests have a false negative rate of 20-30%. My blood test was negative, but I had severe villi flattening which wouldn't have been found if we stopped looking after doing the blood work.

Something elevated one of your levels? It seems like a good idea to get a scope to get a better picture of what's going on?

I also noticed in your siggy that you are a DQ2.2...same as me.

I'm willing to go through the scope, just for the research factor for the rest of my family. It will make it easier for my kids and my mom if we have complete information. I sure don't need it to know I need to be gluten free! After 5 days off of it, I am not having abdominal pain for the first time in months. I don't get any of the classic GI symptoms, but I do feel intestinal discomfort.

On the other hand, I have Hashimoto's, and maybe Skylark is right about that being aggravated. I'll check in with the GI doc and see what he says.

Can I ask you a question? Were you IgA deficient? I gather from reading that the TtG IgG means a lot more in an IgA deficient person. Lots of docs say it is very <i>un</i>likely (not impossible) for positive TtG IgG people to be celiac if they are IgA sufficient.

Ugh! The mystery continues!

[Bubba's Mom]

I'm willing to go through the scope, just for the research factor for the rest of my family. It will make it easier for my kids and my mom if we have complete information. I sure don't need it to know I need to be gluten free! After 5 days off of it, I am not having abdominal pain for the first time in months. I don't get any of the classic GI symptoms, but I do feel intestinal discomfort.

On the other hand, I have Hashimoto's, and maybe Skylark is right about that being aggravated. I'll check in with the GI doc and see what he says.

Can I ask you a question? Were you IgA deficient? I gather from reading that the TtG IgG means a lot more in an IgA deficient person. Lots of docs say it is very <i>un</i>likely (not impossible) for positive TtG IgG people to be celiac if they are IgA sufficient.

Ugh! The mystery continues!

I had normal IGA levels, but since your mention of CVID(in a recent post) I looked into whether I have normal IGG levels. I found that when I was tested in 2009 (before starting allergy shots) that I was low in IGG.

When I went in for my allergy shot last week I asked for copies of the blood work done in 2009. The receptionist pulled it up on her computer and printed it off. I guess she told the Dr., because the next day she called and said the Dr. said to be sure to mention it when I go to Mayo Clinic and ask to have it retested.

I had a lot of digestive distress and weight loss when I was DXed. Since then, if I get a minute trace of gluten I get more neuro symptoms.

[beachbirdie]

I had normal IGA levels, but since your mention of CVID(in a recent post) I looked into whether I have normal IGG levels. I found that when I was tested in 2009 (before starting allergy shots) that I was low in IGG.

When I went in for my allergy shot last week I asked for copies of the blood work done in 2009. The receptionist pulled it up on her computer and printed it off. I guess she told the Dr., because the next day she called and said the Dr. said to be sure to mention it when I go to Mayo Clinic and ask to have it retested.

I had a lot of digestive distress and weight loss when I was DXed. Since then, if I get a minute trace of gluten I get more neuro symptoms.

I went back through some older posts to refresh myself on what's going on with you...when is your Mayo visit?

I sure do hope that they are able to get to some real answers for you and help you find a path to healing. You've got a lot going on.

[Bubba's Mom]

I went back through some older posts to refresh myself on what's going on with you...when is your Mayo visit?

I sure do hope that they are able to get to some real answers for you and help you find a path to healing. You've got a lot going on.

I go the week of April 30th. They want me to see a Neurologist too, but they couldn't get me an appointment for while I'm there. (same thing happened in FL) The soonest I can see a neuro is May 22. I hate having to make 2 trips. We've already been to the Florida Mayo and it cost quite a bit.

We figured it would be best to see the Neoro there though, instead of finding one here? The one there is familiar with Celiac symptoms. My luck with Dr.s here hasn't been very good.

They have scheduled blood tests, a capsule endoscope, a carbohydrate breath test, and a CT scan. I don't know if they'll add anything..or what tests a Neuro might want to order?

I think they can measure stomach acid and digestive enzymes from the capsule test? They also have the slides from my previous endoscopes to refer to.

I'm glad they don't plan an endoscope with biopsies. I've had 3 now, and I'm sure it takes a lot to heal from the numerous "bites" they take for biopsy?