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Got My Bloodwork Results


ElenaDragon

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ElenaDragon Explorer

My bloodwork came back negative, and I called my doctor's office to get the actual numbers. I am also being mailed the results.

IgG 0.7 (normal < 10)

IgA 2.9 (normal < 5)

tTG IgG 1.1 (normal < 9) - not positive this was IgG, the nurse was talking very fast

The problem I see is that before the test I really hadn't been eating much that has gluten in it. I was primarily eating oats and some rice for grains. I had even switched to rice crackers instead of wheat crackers. Occasionally I would have a sandwich when out. I'm sure there are small amounts of gluten in other things I ate, but it has not been a major daily component of my diet. I wasn't consciously trying to avoid gluten, instead I was just trying to stick to soluble fiber to help my IBS. But I'm concerned that this may have affected the test results.

Also, do doctors normally test for the celiac genes? It doesn't look like mine did. :angry:

I went gluten free starting yesterday because I think it's possible I could benefit from it. I really don't have much to lose, and if it doesn't help then at least I'll know that. The more I read about celiac, the more it seems to fit, but I don't know if that's just because I want it to or if I may actually have it. I have abdominal pain, gas, bloating, constipation, and diarrhea. I had my gallbladder removed due to gallstones when I was 19 (I'm 28 now). I get migraines and have Interstitial Cystitis (a bladder condition). I've already eliminated red meat, dairy, and soy from my diet, have been eating low fat and plenty of fiber (mainly soluble), but still having issues.


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Eriella Explorer

Hello--

First of all, unless you were eating 4-6 slices of bread a day (or the equivalent) for 4 months or more, it is highly unlikely to test positive. So you could have celiac disease still. I would go 100% gluten free for 2 months, if your symptoms go away you have a gluten intolerance. You can do the genetic test at a later point to figure out if it is celiac or non-celiac gluten intolerance, or you could decide not to spend the money.

If you have any questions or support, just ask!

ElenaDragon Explorer

Thank you, that sounds like very sound advice. I was definitely not eating that much bread (or the equivalent). Incidentally, I have a followup appointment with my GI in two months, so if I go gluten free, then perhaps I will have something to talk to her about by then. A diagnosis would be nice, but really what I want is to feel better. If the gluten-free diet does it for me, then wonderful!

Thanks!

ElenaDragon Explorer

Okay, so I got the results in the mail and have them on paper now. The actual results are:

Gliadin IgG 0.7 (normal < 10)

Gliadin IgA 2.9 (normal < 2.9)

TTG IgG 1.1 (normal < 6)

TTG IgA 0.6 (normal < 4)

They seem pretty negative to me, but without eating a lot of bread beforehand, who knows. I wish my doctor had said something. She did ask if I had a problem with wheat or oats, and I said I ate oatmeal for breakfast every morning (plain rolled oats)... but from what I understand, oatmeal would only have traces of gluten due to cross contamination?

Also, at the bottom of the results, there is a note that says "An exclamation mark (!) indicates a result that was not dispersed into the flowsheet." They all have an exclamation mark next to them. Anyone know what that means?

confused Community Regular
Okay, so I got the results in the mail and have them on paper now. The actual results are:

Gliadin IgG 0.7 (normal < 10)

Gliadin IgA 2.9 (normal < 2.9)

TTG IgG 1.1 (normal < 6)

TTG IgA 0.6 (normal < 4)

They seem pretty negative to me, but without eating a lot of bread beforehand, who knows. I wish my doctor had said something. She did ask if I had a problem with wheat or oats, and I said I ate oatmeal for breakfast every morning (plain rolled oats)... but from what I understand, oatmeal would only have traces of gluten due to cross contamination?

Also, at the bottom of the results, there is a note that says "An exclamation mark (!) indicates a result that was not dispersed into the flowsheet." They all have an exclamation mark next to them. Anyone know what that means?

I would think with your IGa being right at the normal,. that you were just not eating enough gluten at the time of the test. I would stay completely away from gluten and see if you feel better and if so then you know you have at least an gluten intolerance, if not celiac.

paula

ElenaDragon Explorer

Oops, that was a typo. :unsure: The IgA should be: normal < 5.

confused Community Regular

what you could also do, is do the gene testing threw enterolab for 149 bucks and see if you have the gene for celiac.

paula


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ElenaDragon Explorer

Yeah I have thought about that. It's a lot of money though. I think I'm going to wait and see how the gluten-free trial goes first.

chrissy Collaborator

according to your blood tests, and the fact that you said you had occasional gluten, i would think that your negative test results are probably right. it only takes a little bit of gluten to perpetuate the autoimmune response in a celiac. this does NOT mean that you are not having a problem with gluten, it just means you probably don't have celiac disease.

Guest Doll
according to your blood tests, and the fact that you said you had occasional gluten, i would think that your negative test results are probably right. it only takes a little bit of gluten to perpetuate the autoimmune response in a celiac. this does NOT mean that you are not having a problem with gluten, it just means you probably don't have celiac disease.

I agree with Chrissy. That said, a percentage of Celiacs have negative bloodwork and a positive biopsy. If you are still eating oats, and you have not been off all other forms of gluten for very long, you likely would show some damage on the biopsy. If you want further "official" testing, it may be worth the biopsy. It's rare, but some people have Celiac without the typical Celiac genes.

If that checks out negative (assuming it was done correctly), then you likely do have non-Celiac gluten intolerance. I personally would just stick with the diet at that point. Or, if you don't want a biopsy, just stick with the diet now.

There really isn't enough published data to say that Enterolab is accurate, or worth the price. Of course, it is your choice.

P.S. Your doctor should have checked you EMA levels as part of a complete Celiac panel...

"IgA class anti-endomysial antibodies (AEA) are very specific, occurring only in celiac disease and DH. These antibodies are found in approximately 80% of patients with DH and in essentially 100% of patients with active celiac disease. IgA endomysial antibodies are more sensitive and specific than gliadin antibodies for diagnosis of celiac disease. Antibody titers (dilutions) are found to parallel morphological changes in the jejunum and can also be used to reflect compliance with gluten-free diets. Titers decrease or become negative in patients on gluten free diets and reappear upon gluten challenge."

ElenaDragon Explorer

Thanks for the info. I think I'm going to go with the diet for now and see if I feel any better on it. I have another doctor appointment in two months, so I will talk with my doctor about the results of the diet then.

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      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
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      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
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      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
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