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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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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
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      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
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      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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