Blood Tests- Half Positive, Half Negative

[arkoflove]

Hi there,

I'm brand spankin new to all of this...I went to the Dr 3 weeks ago for tummy troubles that I have noticed since January, and then as I thought on it more, have had to some degree for the past 1.5 years.

My Dr decided to run a Celiac panel on me, to my suprise, and when the test results *finally* came back, they were half positive, half negative. The Gliadin IGA and IGG werre both positive. The other tests were negative. I've been suffering extreme consitpation that would turn into diarreah, massive bloating (looked 6 months pregnant by the end of every day) and very embarrasing constant gas. Also fatigue, depression, irritability...The Dr also found I had extremely low blood sugar even though I'd eaten that day...So in addition to the Gluten Intolerence/Celiacs, I seem to have reactive hypoglycemia where I crash after eating a simple carb/simple sugar food.

I went off gluten when I was waiting on the test results after reading so much info on it. One day I forgot and ate a half a piece of cake at church- up until then I had been improving, but that day was bad all over again. After that I stuck to it better, and now am at a full week off gluten. I am feeling 90% better, things are moving appropriately, bloating is gone, depression lifted, fatigue gone, irritability gone...it's amazing! (I am also eating every 2 hours for the blood sugar issue) I've gone down 5 lbs also.

My friend who is a nurse talked to the GI Dr at her work, and she really thinks I should proceede with the "Gold Standard" of testing by getting my biopsy done. My Dr's thoughts are why go through the extra testing if my tests indicate that I do have a gluten issue going on, and if the diet changes things? I'm feeling my Drs suggestion the most. It is hard though to live in a time where we can get a diagnosis confirmed and re-confirmed....I am an info-holic so I am tempted, but I in no way want to eat all that stuff again just to go get testing!

Here is the funny thing. I only started to have the extreme issues after I started dieting in January...I went low carb high protien, and then started the medditerranian diet (with lots of whole wheat). Whenever I broke my diet I always felt worse and immediately went up 5 lbs...One time I went and had pizza (after being 'good' for a week) and ended up in the bathroom all evening.

Anyways, I'm at the one week mark gluten free and see a great difference. Any thoughts to share with me? Thnaks for your time!!

-Megan

[Mother of Jibril]

Hi Megan,

Tissue transglutaminase and endomysial antibodies are more specific for celiac disease than anti-gliaden, but it's not "normal" to be making antibodies against gluten, so... at the very least, you're definitely intolerant to it. That's not uncommon in people with other autoimmune disorders like type I diabetes and Hashimoto's disease. If a positive biopsy would help you stick to a gluten-free diet then you might want to pursue that. However... if you're feeling better that might be incentive enough! It was for me. You could also think about doing a genetic test. When I found out that I have the DQ8 gene I felt like I made a really smart decision to stay on a strict gluten-free diet. The important thing is just to feel confident about your decision... you'll need it when you eat outside of your own home!

ps - Welcome to the group

[ravenwoodglass]

I agree with your doctor. You eliminated gluten and felt better, you get sick when you eat it and you have positive blood work. You would need to go back on gluten for a couple months to get the biopsy done and even then it could be a false negative. Personally I would consider myself diagnosed and get on with healing.

[Gemini]

My Dr decided to run a Celiac panel on me, to my suprise, and when the test results *finally* came back, they were half positive, half negative. The Gliadin IGA and IGG werre both positive. The other tests were negative.

Megan...what your testing shows is you are reacting to gluten. These are the two tests that are used to monitor adherence to the gluten-free diet and these need to be as low as possible. The fact that the others were negative most likely means you have not accumulated enough damage to your intestines YET to show on the other tests. This would be the natural progression if you continued to eat gluten. If you decide to have the endo done to satisfy your mind, there is a very good chance that it will come back negative, which in no way means you do not have Celiac. You may have caught it very early, which is a good thing but be prepared that the endo may be negative. You never know but don't base your decision on whether to go gluten-free or not, for the rest of your life, on a negative biopsy. If you are symptomatic, then a dietary trial is as good as any endo in backing up your blood work.

[tarnalberry]

If banging your head into a wall hurts, would you choose to continue banging your head, just because your doctor said you hadn't suffered any brain damage yet?

(I'm not a fan of the "well, you do better on the diet, obviously, but maybe you can still eat gluten" line. Why the heck would I, if it makes me feel bad?)

If it makes you feel any better, my tests were far more inconclusive than yours. The lab would not give me specific numbers (I called them, and said "they didn't know the actual numbers if the tests were negative"! WTF?!), and only my anti-reticulin antibodies were positive. (Not exactly classic diagnostic use here.) But gluten-free made me feel better, gluten made me feel worse. I've been gluten free for nearing six years now.

[arkoflove]

Wow, thank you for all the responses!!!

Now for another little question- If I am feeding my kids, and have touched their food, and then eat something, would that cross contamination be enough to have a reaction? I gave my one year old some french bread, which she gave back to me half chewed, and then I ate some grapes (church potluck). That evening I had the bloat and gas again (although not as extreme as before) and the next day it lingered, feeling fine today. Is that really enough to cause a reaction? (Its those mind games, you know? As a woman (sorry guys) and being on my cycle IYKWIM...)

I was thinking in regards to my tests that we did perhaps catch it very early on, becasue my vitamins were great. Although I take a ton of vitamins that could make up for it. Oh, and I also suffered 2 miscarriages between my 2 children, and then infertility when trying to concieve again. I am currently wading through more infertility challenges, along with wierd cycles and messed up hormones. All perhaps tied to Celiacs possibly?? I had a thyroid problem after I had my son, but it went away after about 8 months. Ever since my tests have been normal but on the "high" end...

Thank you again for all your help and welcoming me!!!

-Megan

[ravenwoodglass]

Wow, thank you for all the responses!!!

Now for another little question- If I am feeding my kids, and have touched their food, and then eat something, would that cross contamination be enough to have a reaction? -Megan

Short and sweet, yes. Make sure you wash your hands immediately if you have to handle gluten .

[dream77]

My Dr decided to run a Celiac panel on me, to my suprise, and when the test results *finally* came back, they were half positive, half negative. The Gliadin IGA and IGG werre both positive. The other tests were negative.

Gemini,

Your lab results look exaclty like mine.

What are your symptoms ?

Mine are

neuropathy, parasthesias.. fatigue.

I have hashimotos as well.

My lab work only shows deficiency for Vit D and Ferritin but everything else looks great.

I decided to no do a biopsy but just start on a gluten free diet.

[tarnalberry]

Yes, contamination is going to cause intestinal damage. Think of it as poison - you don't really want to get any in you.

And yes, celiac disease is connected in higher rates of infertility as well as other auto-immune conditions (some of which can affect the thyroid).