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Questioning Celiac

Jallen

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Jallen Newbie
Jallen
Posted

Hi everyone!

I have been reading this forum for a while and I am almost positive I should try the gluten-free diet.

I have always had "stomach issues" that ranged from constiaption/diarrhea, excessive gas, burping, stomach pains, bloating (feeling like I'm 9months pregant) ect.

Recently I was in the hospital for a small bowel obstruction I'm 27!) and they did an endoscopy which came back negative for celiac. I still went to a GI specialist and he ask why I thought I had it and after hearing only my stomach-related symptoms told me since my biopsy came back negative that I was negative and I that have IBS. I should have asked for the blood test but for some reason I was intimidated and almost felt like a hypochondriac (sp?).

I still feel strongly that I have it since I have sooo many other possible symptoms/side effects. Here is the list:

Osteoarthritis in my lower back

Cankers almost montly in my mouth (right now I have 4 since I started eating more fiber and wheat ect.

Acne since I was about 10! EVEN after two rounds of Acutane and several topical products.

I always had cavities and yellow teeth, even though I brush/floss/rince regularly.

I have a pretty poor healing ability (cankers/acne ect. last over two weeks sometimes!)

Always feeling hungry

I do have some sort of rash/acne like breakout on my buttocks that has been there since high school despite the acne medicnes and anything else I've tried. It's only there, though. no hands, elbows ect...

I think that might be it. I just feel discouraged because if I am not gluten intolerant than does my body just struggle?

I am going to try the diet, I have heard people feel much better in general. I was just wondering people thought it was celiac? I am not sure I care to get further testing. I should add that when they biopsied me I had not had anything to eat for 2 and a half days and I don't think they took more than one small section to test.

Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Go ahead and try the diet. If your doctor only did one biopsy then your chances of a false negative are high. I recently got a new GI doctor who is the most knowledgeable doctor I have ever seen as far as celiac goes. It took them over 15 years to diagnose me because I don't show up in blood work and no one even told me what the tests were for, just that I was negative for 'sprue' and should be happy because I wouldn't be able to eat anything if it was positive. My new doctor just shook his head and replied that he always reccommends that folks who have the symtpoms but show negative are told to try the diet, even when he has done biopsies and they are negative. He also said he has diagnosed a lot of celiacs in the last few years. He also stated that he knows there are a lot of false negatives with blood and biopsy. I almost fell off the table. So anyway I am giving you the advice he would have given me if he had been my GI doctor before I was diagnosed, try the diet. You have nothing to lose.

One last thing, about that rash- does it itch? If it does it may be DH. DH is the skin form of celiac. If you can see a derm and have them do a biopsy specifically looking for DH that may give you a doctor derived diagnosis. Just make sure that they biopsy the area next to the rash not the rash itself. If the rash leaves purple colored scars that last for a long time that is another indication that it is DH. A diagnosis of DH is a diagnosis of celiac.

ang1e0251 Contributor
ang1e0251
Posted

I second all that advice. Try the diet, I'm betting you'll feel better and that rash will eventually go away. Really, there are dr's out there who make you believe what they tell you, but this disease is so tricky. I think many of them just don't learn the spectrum of ways it can present.

Jallen Newbie
Jallen
Posted
  • Author

thanks for the advice! I am going to start the diet

The rash is tricky, it can be itchy, but not constantly. It varies from painful to itchy, so I will see when I start the diet if the rash goes away!

Thanks again!

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