Going Through Testing, Want To Scream

[Marcat]

Hi, I am new to the group, and have been searching for answers for almost 20 years. It looks like we are close to the answer, but the whole process of celiac testing is driving me nuts. Here are some of my symptoms and dx over the years: Hashimotos hypothyroidism, ideopathic dizzy spells, ideopathic urticaria, urticarial vasculitis, degenerative joint disease (in my feet), tachycardia, high blood pressure, fatigue, preeclampsia, IBS, migraines, fibromyalgia, abdominal pain, carpal tunnel (tingling hands), peripheral neuropathy (tingling feet), restless leg syndrome, vitamin D deficiency, colon polyps, reflux, asthma, and sleep apnea.... sure I missed something but Good grief, if I'm not celiac then I just might cry. So frustrated and tired of being tired.

I'm not even 40, but I feel 60. I've had way too many doctors who just wanted to give me a pill or send me to a shrink. I know I'm not alone.

So far I've tested positive for DQ8, gliadin IgG, and gliadin IgA, but my biopsy and TTG were negative. My gastro dr ordered a more complete celiac panel, but the collecting lab messed up and the test was cancelled by Prometheus. UGH! I am currently waiting to be schedule for the capsule endoscopy because my doctor thinks it's very likely that my damage is lower. This would make sense because when I had the barium small bowel study done for the capsule prep, they said I was moving very quickly. I was finished with the entire thing in 1 hour. I was told it usually takes 1 1/2-3 hours.

So, here I am waiting again. Waiting, waiting, waiting and looking at every bite I eat as potentially toxic. I have played with gluten-free just to see if I notice a difference, which I do, but I can't be gluten-free until this is all done.

Can somebody out there give me a little encouragement? I'm driving myself and my family crazy.

[ravenwoodglass]

Your blood work was positive and you have one of the 2 main genes that cause celiac and your symptoms and other diagnoses sound like many could be gluten related. False negatives on both blood and biopsies are common but positive tests are positive.

The choice to do more testing is up to you. With positive blood work you need the diet no matter what the endo exam results are. Some doctors will diagnose based on positive blood work and recovery on the diet. If you have to have a firm diagnosis then you may want to talk to your doctor about that possibility. Being gluten free will not effect testing for other problems if there might be something else going on.

[Marcat]

Your blood work was positive and you have one of the 2 main genes that cause celiac and your symptoms and other diagnoses sound like many could be gluten related. False negatives on both blood and biopsies are common but positive tests are positive.

The choice to do more testing is up to you. With positive blood work you need the diet no matter what the endo exam results are. Some doctors will diagnose based on positive blood work and recovery on the diet. If you have to have a firm diagnosis then you may want to talk to your doctor about that possibility. Being gluten free will not effect testing for other problems if there might be something else going on.

Thanks! I am going to try a gluten free diet no matter what. I just hate this whole medical mystery.