About To Get The Results Of My Celiac Panel

[micaela27]

i have gastroparesis (delayed stomach emptying that is usually associated with diabetes, which i DON'T have) and an autoimmune condition called Hashimoto's Thyroiditis that have both been recently diagnosed. given the autoimmune nature of my thyroid problems, i got tested for celiac disease last week and am awaiting the results tonight at my GI appt. based on my research, i learned that both gastroparesis and my thyroid condition are associated with celiac disease so i'm almost expecting a diagnosis tonight.... but what if my GI doctor says everything looks clear? i don't have any classic symptoms of gluten intolerance, though i have lots of problems related to my delayed stomach emptying from the gastroparesis... but i don't have excess gas, bloating, diarrhea, etc. still, i have heard from multiple sources that the blood test isn't always completely accurate in pinpointing gluten intolerance. so... should i go gluten-free anyway if i get a negative test result? i read about so many people who had the problems, tested negative, and went gluten-free anyway with fabulous and immediate results. i just want my gastroparesis to go away and the fact that it came out of NOWHERE in a perfectly healthy individual with a spotless medical record and impeccable eating habits (i'm a nutritionist) leads me to believe something else is causing my problems. i'm almost hoping for a celiac diagnosis... because that would give me a glimmer of hope that maybe i could do something definitive to correct my stomach issues. does anyone else have gastroparesis or Hashi's?? whaddya think? thanks!

[Nantzie]

I always think that people who suspect gluten issues should try the gluten-free diet despite test results. There are just too many of us who tested negative but had life-changing results. It's worth it just to give it a try.

There seem to be patterns among those of us with negative tests, based on related "gluten intolerance" genes, that have certain symptom profiles.

With the gene that I have, you're looking at GI and neuro symptoms, but negative medical tests. I also seem to see a pattern of hypersensitivity to gluten.

If you respond well to the gluten-free diet, it will be a great experience. Because if you're reacting to gluten, it's probably effecting other areas of your life that you may not be aware of. Personally, things like anxiety, headaches, balance problems, fibromyalgia-type pain, insomnia all went away.

If you don't respond to the gluten-free diet, you'll at least know this isn't the answer for you. There are a lot of people here with other food intolerances that can help you try eliminating other foods that cause problems, like soy, dairy, corn, eggs, etc.

Welcome to the board. Let us know how your tests turn out.

Nancy

[kbtoyssni]

I am a firm believer in the fact that if you have something going on in your digestive tract, you should look at what you're putting in it first. Blood tests give false negatives fairly often so why not try gluten-free just in case? It's easy to do and can save you a lifetime of suffering if you do have celiac. It's not like you'll harm your body by trying gluten-free. The catch is that you have to do it 100% to really know for sure. You have to be diligent about cross contamination and ingesting small amounts of gluten because that can be enough to make you not feel better if you do have celiac. Good luck and welcome!

[micaela27]

well my celiac panel came up negative for antibodies and as it turns out, during my endoscopy last month my GI doctor did a biopsy and it was also negative. should i still be concerned? i have no symptoms, just the gastroparesis and the autoimmune thyroid problem. my doctor said he was 99% sure i did not have celiac disease based on the double negative test results. so where does that leave me?

test results on paper state:

(tTG) AB, IGA <3 (ref range <5 is negative, 5-8 is equivocal, >8 is positive)

endomysial AB IGA (test not performed. reflex testing not required.)

endomysial AB titer (test not performed. reflex testing not required.)

Gliadin AB IGA <3 (ref range <11 is negative, 11-17 is equivocal, >17 is positive)

IGA Serum 613 (ref range 81-463 mg/dL) OUT OF RANGE

(tTG) AB, IGG (not performed.)

what does it mean that my IGA Serum is high?

[Nantzie]

I'm not sure very well versed on the IgA. Maybe one of our more science-y members will see this and can help.

Since you are under the care of a doctor, and you've already been tested for all sorts of things I'm sure, I'd say you should try the diet (100%) for a few months and see what happens.

It's only classic celiac that will show up in blood tests and biopsies. You may have non-celiac gluten intolerance, like so many of us here do.

Another question I had, because you mentioned you are a nutritionist, is do you eat a lot of soy? Even though it's considered healthy, soy can really mess people up, so that would be something I would suggest looking into as well.

I hope you start feeling better soon.

Nancy

[micaela27]

  Nantzie said:

Another question I had, because you mentioned you are a nutritionist, is do you eat a lot of soy? Even though it's considered healthy, soy can really mess people up, so that would be something I would suggest looking into as well.

good question! i used to drink soy milk and upon reading that it can have negative effects on the thyroid, i stopped and went to skim milk about 2 or 3 weeks ago. so... no, i really don't do soy products anymore. all my dairy foods are actual dairy and not soy versions. i don't eat tofu, i haven't had my soy protein shake in months at this point. i do eat edamame on occasion, but again... not in awhile. it's been at least a month. i am going to follow up with my GI tomorrow regarding this IGA serum business... i was speaking with a friend who is currently in med school and she was explaining that the IGA serum levels being elevated indicates i am acutely sick with something. the fact that i have a diagnosed autoimmune disease could be the cause of it, but it also could be an indicator of something else. anyway... i plan on getting to the bottom of this tomorrow. thanks for the advice so far! i'll post an update tomorrow if i find anything of value to include.

[nora-n]

If you go to Dr. Ford's webpages, he explains about the antigliadin IgG test. You might want to ask for that one.

The other tests probably will not get positive until the villi have disappeared....the antigliadin IgG probably rises much faster and may show celiac or gluten-intolerance a long time before the villi are gone.

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And, have you read at the blog at thefooddoc.com ?

nora