Feel So Horrible

[sue1234]

I am in the same boat regarding celiac antibodies. My IgA anti-gliadin was 45, much like your level. My gi doctor,however, said I did NOT have celiac because my biopsy showed no damage to the villi. I really question his wisdom on this. I mean, why would my body be making 4x the upper limit antibodies against a wheat-specific protein?? That sounds pretty celiac to me!

I go to a new gi next week. This is a doctor found through careful research. I first emailed a research MD/Phd that was looking into gut bacteria. I explained all my gi issues and POTS issues. He referred me to an MD, but one that only works with vets. I called that office to see if they could ask him for a referral to a gi doctor that I could see that still works under the gut bacteria issue, and the doctor actually answered his phone himself! He said he will send me to someone that he knows can figure this all out. I was shocked and very thankful.

But, as you know, we've all had our hopes dashed at first appts. when we find out that some doctors just want to get paid for seeing a patient in that time slot.

But, this is the head of the dept. at a MAJOR medical program in a MAJOR medical city, so we will see. His office has already called to have me fax over any medical info/test reports that I had, because the doctor wanted to begin looking over my information.

Please keep us posted about your gluten-free journey and what you find out about the possible chiari.

[sue1234]

Dana, thanks for posting that article on antibody levels.

According to it, my high anti-gliadin IgA is 97% specific for celiac disease. Wow. And my doctor said I didn't have it. I guess it is time to get serious about gluten-free.

This makes me think of all the nutrients we may not be absorbing due to celiac/gluten-intolerant.

[lieze]

The symptoms you are describing are what I experience when I have food reactions.

It feels very scary at the time.

It could be you are just reacting at night when your body has a chance to relax or it is the accumulation of what has built up over the day.

Benadryl might help-I would suggest trying just a little but if you can you want to find out what is causing it and remove it from your diet if it is food related.

I'm not sure if a celiac issue would cause the same type reactions?

Maybe join a celiac forum and ask?

This is just an idea-not sure it's what is going on.

[Nikki]

So sorry to hear that you're feeling down. I can definitely relate. Sometimes the bad times just seem like they'll never get any better. Hang in there though. I hope you feel better soon.