Test Results Question

[Caeryn23]

I have been gluten free for about 2 years. My PCP ordered the Celiac panel. The EMA was ordered, but for some reason it was not ran. I ate gluten for 1 week before the tests. I did not make a follow up appointment yet. Here are the results:

Anti-Gliadin Antibodies

IgG 3 and IgA 1

ranges: 0-19 negative, 20-30 weak positive, >30 moderate to strong positive

Tissue Transglutaminase Antibody IgA <2

ranges: 1-3 negative, 4-10 weak positive, >10 positive

Tissue Transglutaminase Antibody IgG <2

ranges: 0-5 negative, 6-9 weak positive, >9 positive

Total IgA 129 range: 70-400

My old GI ordered the gene tests. I have HLA DQ2, DQ8, DR4, and DR7.

Does the gliadin results mean I'm producing antibodies? What would that indicate?

[adab8ca]

I have been gluten free for about 2 years. My PCP ordered the Celiac panel. The EMA was ordered, but for some reason it was not ran. I ate gluten for 1 week before the tests. I did not make a follow up appointment yet. Here are the results:

Anti-Gliadin Antibodies

IgG 3 and IgA 1

ranges: 0-19 negative, 20-30 weak positive, >30 moderate to strong positive

Tissue Transglutaminase Antibody IgA <2

ranges: 1-3 negative, 4-10 weak positive, >10 positive

Tissue Transglutaminase Antibody IgG <2

ranges: 0-5 negative, 6-9 weak positive, >9 positive

Total IgA 129 range: 70-400

My old GI ordered the gene tests. I have HLA DQ2, DQ8, DR4, and DR7.

Does the gliadin results mean I'm producing antibodies? What would that indicate?

Hi

The gliadin result still falls in the negative range. However, being gluten-free for 2 years and eating gluten for one week, I am not surprised that everything is negative. This is totally inconclusive. I was off gluten for a month and my GI said that I needed to be eating LOTS for atleast 6 weeks before my endoscopy.

How do you feel off gluten and on gluten? That may be your best indicator.

May I ask why you decided to get tested after two years gluten-free?

[Caeryn23]

I was having symptoms and went to the GI clinic. I stopped eating most gluten foods because they made me sick. They kept saying I had IBS and never mentioned gluten/celiac or anything else. I asked them to test me; they only did the Total IgA and Tissue Transglutaminase IgG. The tests were after I went "gluten light." They never said how much gluten I had to eat before any testing.

I feel better being off gluten. I decided to get tested again because I have a new PCP. I wanted to know what the results would be.

[Skylark]

You need to eat a full gluten diet for 2-3 months to get a positive result on the tests. It's not surprising at all that this panel was negative. Your Dr. should have known this and told you.

[Caeryn23]

The GI said I was eating enough, even I was "gluten light." I can post the biopsy results that he ordered. My PCP said it may not make a difference how much gluten I was eating. However, my PCP said to avoid gluten if it was making me sick.

Would antihistamines, antacids, other medicines, or a blood transfusion have an effect on the Celiac Panel?

[psawyer]

Would antihistamines, antacids, other medicines, or a blood transfusion have an effect on the Celiac Panel?

No, no, no and maybe. I suppose that if the blood donor had active celiac disease some antibodies might transfer. Not sure on that.

[Caeryn23]

Thank you for responding.

I had surgery in Summer 2009, where I had a transfusion. I wasn't sure if that would have an effect on the blood tests.

Here are my biopsy results from 2008. I was "gluten light." About 5 samples were taken.

* Preserved villous architecture.

* No significant intraepithelial lymphocytosis, active inflammation, granulomas, adenomatous change (dysplasia), or maligancy.

* The histologic changes do not suggest celiac sprue.

They said there were some changes and little inflammation (normal range).

[Skylark]

Well, it's pretty clear that with "gluten light" you are not having antibodies or damage. It doesn't really matter if that diet made the tests negative because gluten makes you feel ill anyway. You're not looking to eat a lot of it, right? If I had your results I'd stick to a diet that made me feel well and not worry about celiac either way.

[campfiregirl]

I'm feeling frustrated and would just like a name for this. : ( My new GI Specialist thinks I have celiac, and finally my dr. is starting to believe me - I've tested negative a few times.. All those times I have not been eating gluten. Recently my gi specialist told me to go back to eating gluten with only a week before my endoscopy and colonscopy (aren't I lucky 2 4 1 deal!!)after being gluten free for 4 mths. My blood test will probably be negative as it was just over a week that I was back on. I had my endo/col yesterday and he said everything looked healthy & good & he took a few biopsies. I'm relieved it's not cancer and still would just like them to say yes it is celac!! I don't want to eat gluten another 4 months & then go back & get an endoscopy (he hasn't said that but did say I should be on longer before being tested). In the 10 days + being back on it my depression, exhaustion, constipation, stomach pains, irritability, extreme bloating (8-9 mths prego looking), clothes didn't fit, major gas, canker sores and a small blister like rash on my forearm & fingers. My mom tested negative for it but has severe reactions when eating it as well, she has osteo, and colitis. Her dr. doesn't believe her... I also have stomach pains and really bad headaches which thankfully, I'm being referred to a sinus specialist. I feel so much better, happier, energized, and lighter when being gluten free. I know I'm allergic to wheat but didn't have these kind of reactions until the last 3 years where my stomach has been distended, and the above symptoms. The GI surgeon I saw a year ago (1st endo) said I could have developed a gluten allergy? I'm so grateful nothing bad was detected and I'm also frustrated. If I had celiac wouldn't the specialist have seen that immediately on my endo or do they need to wait for biopsy results? I am still having really bad stomach pains. I was able to start having solids today and gratefully I'm going gluten free again and staying that way. Do I really need to stay on gluten longer to try and have yet, another blood test? Also, my ferritin is very low (been that way for last 3 yrs), my phosphorous? was low, too. My bones are really sore, and I found out I have arthritis in my neck and my bones in my back are really hurting. Oh yes, I had restless leg syndrome too!! All this just before my 45th!! lol Well, the next 45 yrs are going to be gluten free. Does anyone else have a similar experience? It was so frustrating to have my dr./surgeon keep telling me I needed anti-depressants. I took years ago and decided I would pull myself out but it has been a real struggle. It's not a struggle when I'm gluten free. Even the surgeon I saw 1 yr before my 1st endo - kind of looked at me and said IBS in a brief appt. stating he see's alot of middle aged women have this - asked if I had stress (which I do). The new specialist I saw seems to listen and is taking me serious - I know this isn't all in my head. Why heck to my bones hurt? My sisters and mom are all going gluten free because they have similiar experiences & notice a big difference in their kids, too when not on gluten. Thanks for listening!

[Caeryn23]

Well, it's pretty clear that with "gluten light" you are not having antibodies or damage. It doesn't really matter if that diet made the tests negative because gluten makes you feel ill anyway. You're not looking to eat a lot of it, right? If I had your results I'd stick to a diet that made me feel well and not worry about celiac either way.

I meant I was "gluten light" for the biopsy. I was gluten free for 2 years (since November 2008) before the recent blood tests. However, I did eat gluten for 1 week before the blood tests. The Gliadin Antibody tests showed some antibodies, but were in normal range. I think my PCP just considers me Gluten Sensitive/Intolerant.

[mushroom]

Well, your tests really do not mean anything at all except that he didn't find anything else. So far as celiac is concerned they might as well not have been done. It takes 2-3 months on a full gluten diet to get meaningful test results - not to say they would be positive, but to determine whether or not you are celiac. Gluten free for two years for blood tests and 'gluten lite' for one week before biopsy... well, as far as celiac is concerned you might as well not have bothered and any GI who told you you were eating enough gluten ought to be ashamed of himself. I am sorry if you were led to believe that that would be adequate These doctors are so frustrating - it's almost like they just want to do the procedure, not find out what is wrong with you.

[Skylark]

I meant I was "gluten light" for the biopsy. I was gluten free for 2 years (since November 2008) before the recent blood tests. However, I did eat gluten for 1 week before the blood tests. The Gliadin Antibody tests showed some antibodies, but were in normal range. I think my PCP just considers me Gluten Sensitive/Intolerant.

OK. You had me a little confused. That means you have never had an accurate celiac test to know. You would have to eat full gluten (4 slices of bread a day) for 2-3 months to be sure of an accurate test. Folks around here used to say one month, but the studies I found were glutening people up for three months to get biopsies.

If you can't tolerate enough gluten to get accurate tests (I sure couldn't) it's best to stick to gluten-free and eat as if you're celiac.

[Skylark]

I'm feeling frustrated and would just like a name for this. : (

I'm so sorry, but you can't have it both ways. People like you and me are in a frustrating position right now. Either you eat a LOT of gluten for a couple months to get tested, or you go without a "diagnosis". Like you, gluten poisons my mind as well as my GI. There is no way I could eat gluten for months to get an accurate test. I had the lab slip for anti-EMA in my bag, went to Jack in the Box and got a grilled ham & swiss sandwich on day 1 of eating gluten. I got a stomach-ache and tons of D, and woke up exhausted the next morning. That was the end of any interest I had testing.

Also like you I am quite sure I'm celiac. I've chosen to go strictly gluten-free and act as if I'm celiac. I catch a little grief from my mother who thinks I have a wheat allergy and don't have to be so careful, but whatever. I'm a grown adult and it's my choice what I put in my mouth. I feel great if I'm very strict on the diet, and get sick if I slip up.