Helllllllo!

Over the past couple of years, I've had freq stomach aches, diarrhea, 3-5 BM/day, excessive gas, bloating, mouth sores, etc. I usually have a BM right after I eat or sometimes even before I have finished my meal. I finally decided to seek help from a doctor this summer (before my health insurance runs out when I graduate from college this spring!). The doctor at my school referred me to a GI specialist due to my symptoms coupled with unexplained anemia. The blood panel showed "elevated anti sprue AB." As a result of that test, I was scheduled for an endoscopy. The endoscopy and biopsy both came back normal. I won't be able to talk with my GI doctor until my appointment in mid November (I received my endoscopy results in the mail), but I'm pretty sure I'll be stuck with the typical IBS diagnosis.

I am a little torn between what I should do since I have read on here that it is possible that the endoscopy/biopsy may have missed damage. Considering the possible ramifications that can come in the future for someone with celiac disease who doesn't follow a gluten-free, in addition to my current anemia, I am wondering if I should give the gluten-free diet a whirl. Although, I am hesitent to do so before I see my GI doctor again in case she wants to do further tests. I also kind of feel as though I would be giving myself a self-diagnosis/disrepecting her by doing so. AHHHHHHHHHH! I'm just sick of feeling yucky and getting a diagnosis/help is proving to be an incredibly long process! Do any of you have any advice for me?!

Thanks!
A

I would definitely try the diet. Which blood tests were done? Some are very specific. Also, a biopsy can rule celiac in but it can't rule celiac out. If there is sporadic damage they can easily miss it and if it is in beginning stages you may not have damage yet.

I would agree with Kaiti and make sure you had the TTG test done...do you know if celiac sprue runs in your family? Another option would be to have the HLA gene test actually done - you could ask your g.i. about this - for instance, we may do this for all three of our kids because then we'll really know whether or not they will develop sprue and whether or not we should be testing them every three years with the ttg test (i'm a biopsy-confirmed celiac myself).
(testing relatives every three years if they're related to a first-degree biopsy confirmed celiac is the newest medical recommendation)

my g.i also mentioned that since my bloodwork was positive, if the endoscopy was normal then we were going to repeat it again in 3 months and that would be the final yay or nay.

just some things to discuss with your doc...amanda

Hello A,

Since you have anemia, I would recommend getting a bone density test done to check for osteoporsis. Both are related to gluten sensitivity.

George

"if the endoscopy was normal then we were going to repeat it again in 3 months and that would be the final yay or nay"

3 months - that surely is too soon to be final

Odviously talk to your doctor before you take any adivce... not that docs are perfect, but they have your tests, and hisitory, and other data we do not.


BUT, if your celiac disease blood test is POSTIVE, then go gluten-free for life and forget futher testing. You have celiac disease. Its fiarly simple.

I created a thread a whiel go expliaing how the bisopy is NEVER NEGATIVE. Its only non-postive. Thats a big big difference. Non-postive tells you nothing for sure, while negative would be conclusive. Only a POSTIVE biosopy tells you anything in the case of the celiac disease test.