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Gluten Challenge Misery (Newbie Here)

pain*in*my*gut

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pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hello! I am a newby here....and I need need to vent....

Here is a little history.....I had a bowel resection in 2007 (endometriosis had grown into my bowel, so they removed a small part of it). I then developed complications from the surgery (excessive scar tissue causing bowel obstructions, GI yeast infection, rectal inflamation and bleeding). I was tested for celiac at that time and everything was normal (but on the high end of normal). Then I starting having muscle pain, fatigue, chronic lower back pain and was dx with fibromyalgia. GI symptoms settled down, and for the most part my only complaint was constipation and gas.

About 6 weeks ago I started having this horrible pain in my upper left abdomen, just under my ribcage. Saw my GP, who did a Celiac screen just in case. Low and behold.....POSITIVE! But, only my Deaminated Gliadin antibody was positive (it was 59, normal is 0-19). My TTG IgA was less than 2, which is normal.

I saw my GI doc on 8/1, and he said that my test results for celiac were "inconclusive", and I have to have an endoscopy. I had been gluten-free for 2 weeks, and he said that I had to go back on gluten for a month and then do the biopsy. I was so upset, as eliminating gluten had made my fibro symptoms dramatically better!! Would 2 weeks of being gluten free really effect the biopsy results? I thought it took the gut 6-12 months to heal on a gluten-free diet, I had only been gluten-free for 2 weeks!!

I have since started eating gluten again, and I am getting so sick after eating it! The gas and bloating are horrible, and it feels like my stomach is just so inflamed about 1 hour after I eat gluten that I almost throw up! How am I supposed to do this for another month?? I read where you are supposed to eat like 4 pieces of bread a day, and I can't!!

I would just say screw it...assume that I have Celiac and be done with testing, but I have a 6 year old son, and I need to have an "official" dx so that I can get him checked if I do indeed have it (as well as my other immediate family members, 3 of which have signs of it).

I am going to see my GP next week, and I am wondering if I should see if I can get a second opinion (about waiting to do the biopsy). I am miserable, and I feel like I am being tortured by my GI doc. Surely 2 weeks of not eating gluten can't heal the intestines enough to cause a negative biopsy, can it?

I don't know, what do you all think I should do?

Thanks in advance!

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Jenniferxgfx Contributor
Jenniferxgfx
Posted

I was "gluten lite" for a bit (6wks tops) before my biopsy, and had a big gluten bender the weekend before, and my bx was negative. You really have to be gorging yourself on the stuff for positive results sometimes. As far as I'm concerned, your lab results are good enough and forcing you to do the biopsy is just cruel and inhumane. :(

rosetapper23 Explorer
rosetapper23
Posted

When I discovered that gluten was the culprit, I gave it up...and never looked back. I did take my son in to be tested, and he tested positive for celiac. That was enough for me and my doctor. My gastroenterologist said I had the most classic celiac case he'd ever seen, and he apologized for all the doctors who had missed the obvious signs since I was 11 years old. I agree with Jennifer--your doctor is being inhumane...and abusive. Regardless of whether or not you go through with the endo, have your son tested for celiac.

gluten free overseas Apprentice
gluten free overseas
Posted

I just went with entrolab.com

I liked it a lot because they test your stool, and you can already be off gluten and still get accurate results. Plus, they do genetic testing and will test for casein, soy, etc. etc. I know it's not widely accepted in the States, but I personally think it's a good option.

Takala Enthusiast
Takala
Posted

Call GI doc back and tell him you're getting too sick on gluten to continue.

Then get genetic testing somewhere else. Sheesh. Genes & symptoms & positive blood test & positive diet response = you are at least gluten intolerant.

Watch the kidlet for symptoms, and maybe get him genetic tested also, after you. He won't automatically get the disease, just by being a genetic carrier of the tendency.

the relatives.... will drive you crazy. Always do your own thing and be proactive about your own health.

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