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Ibs Or Celiac

JoPaRe

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JoPaRe Newbie
JoPaRe
Posted

Hi Everyone,

I was wondering if any of you out there can help me. First, I will list my symptoms and I would love some feedback if it souds like Celiac or if it does NOT sound like Celiac.

-gall bladder removed 3 years ago

-about a year ago, stools started to lighten in color, about 4 months later turned to diarrhea

-small itchy blisters on the palms of my hands for about 10 years

-headaches

-canker sores

-back pain (middle left side) for about 10 months

-severe stomach pains shortly after drinking any malt beverage

I've been to a GI and have had the following tests which have all come back negative: x-ray, MRI, CT scan, colonoscopy, upper GI, lactose test, and a blood test for Celiac disease.

My doctor has diagnosed me with IBS but I just can't get past everything I've read on Celiac Disease and wondering if it would be worth sending away for a test for Celiac Disease. I am not following a gluten-free diet but am considering giving it a try. Any feed back would be greatly appreciated.

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blueeyedmanda Community Regular
blueeyedmanda
Posted

Maybe you should give the diet a try you really have nothing to lose. There are some members here who have had negative bloodwork for celiac but have tried the diet and have feel all around better and that is all the proof they need to continue on.

Hope this helps.

Nancym Enthusiast
Nancym
Posted

You might want to get those itchy blisters biopsied, or rather the skin near them. Sometimes celiacs have villious flattening (endoscopy with biopsies) without having positive blood work. And more often, many of us with IBS find it magically goes away when we avoid the magic foods that make us sick.

I assume you're thinking of Enterolab when you talk about testing? I think its worth a shot if you're done with your own doctors.

JoPaRe Newbie
JoPaRe
Posted
  • Author
You might want to get those itchy blisters biopsied, or rather the skin near them. Sometimes celiacs have villious flattening (endoscopy with biopsies) without having positive blood work. And more often, many of us with IBS find it magically goes away when we avoid the magic foods that make us sick.

I assume you're thinking of Enterolab when you talk about testing? I think its worth a shot if you're done with your own doctors.

Thanks for the support.

Is Enterolab the one to use? What test should I ask for? Are they reputable?

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

disclaimer: I am NOT a doctor. Having said that, as far as I can tell, IBS is a bull-**** diagnosis; it's not a disease, it's a collection of symptoms. As far as I can tell, it's the same symptom list as celiac disease, minus the positive test results.

There are many of us on this board who either did not test positive for celiac, or who had doctors who read the tests inaccurately, yet our symptoms completely disappeared when we went on a gluten-free diet. More and more often, dietary response is becoming an accepted diagnostic tool.

As a previous poster said, you have nothing to lose but stomach pain!

Welcome aboard, and let us know how things go with you!

JoPaRe Newbie
JoPaRe
Posted
  • Author

Am I correct that even if you are on a gluten free diet that the you can still be DNA tested?

JoPaRe Newbie
JoPaRe
Posted
  • Author

disclaimer: I am NOT a doctor. Having said that, as far as I can tell, IBS is a bull-**** diagnosis; it's not a disease, it's a collection of symptoms. As far as I can tell, it's the same symptom list as celiac disease, minus the positive test results.

I agree with you about the IBS being bull. If they can't tell me what causes IBS, how can I just sit back and deal with the symptoms and not rule out Celiac.

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Ursa Major Collaborator
Ursa Major
Posted
Am I correct that even if you are on a gluten free diet that the you can still be DNA tested?

If you go with Open Original Shared Link you can do the gene test, and the gluten intolerance test, as well as malabsorption, dairy and soy. And with them, you can do all that while being on the gluten-free diet.

They do stool testing, which is far more reliable and sensitive than the blood tests and the biopsy. Also, they test for the celiac disease genes as well as the gluten sensitive genes. Because you can be gluten sensitive and have all the symptoms of celiac disease, without the damage to the villi. The treatment is the same, which is a gluten-free diet.

All your symptoms could be celiac disease symptoms. Go ahead and try the diet, and if you feel better, you have your answer.

Felidae Enthusiast
Felidae
Posted

It sure won't hurt you to try the diet. I've got the IBS "diagnosis" too. But the only thing that allowed me to not starve to death because everything I ate made me sick was going gluten-free. I had mouth ulcers (canker sores) too until I removed gluten from my diet.

GlutenWrangler Contributor
GlutenWrangler
Posted

I agree, IBS is complete bull. IBS is a lazy doctor's diagnosis. Definitely get yourself tested. Those blisters on your hands could be dermatitis herpetiformis. If you get a biopsy on it, and it comes out positive, you don't have to do any further testing for celiac disease. DH is a confirmed celiac diagnosis. Good luck.

-Brian

emcmaster Collaborator
emcmaster
Posted

I tried out a gluten-free diet after being assured I didn't have celiac (because I didn't have the "classic" symptoms). I now go to a different doctor and have no doubt in my mind that I have celiac after my complete 180 while on the diet.

You have NOTHING to lose by trying it.

PeggyV Apprentice
PeggyV
Posted

I had all of you symptoms and same diagnosis. I had no luck with blood test or biopsy of my itchy blisters (however I think my dr. biopsied the only bug bite on my leg instead of the smaller blisters in groups). I went on a gluten free diet just before blood test and biopsy and in about 2 weeks started feeling much better. In about 3 weeks the blisters went away.

4 months into the gluten free diet I tried Enterolab. I was disappointed. It showed I had some intestine damage, but I did not test positive to Gluten intolerance. It was high but in normal range. In the gene test it did show I had 2 gluten intolerance genes.

But what really matters is for the first time in years I feel much better and have far less problems. I think it is worth doing the test with enterolab and going on the diet.

happygirl Collaborator
happygirl
Posted

If you have yet to start the diet, my advice is this:

Contact the local Celiac group in your area (you can find them on celiac.com) and ask for a reputable doctor that deals with Celiac. Ask to have the full Celiac bloodwork done (including the tTG test) and ask to have the area around your blisters biopsied.

ArtGirl Enthusiast
ArtGirl
Posted

I went the for the Enterolab test, also. Since I had been gluten-light for several years, I didn't think any test would be valid, even though I still had major IBS symptoms.

As it turns out (from Enterolab) I have two intolerant genes - no celiac genes - and no malabsorbtion problems. What this means to me is that I have non-celiac gluten intolerance, with no intestinal damage. Blood tests and a biopsy would have been negative in this case. But I still need to be gluten-free.

As you browse the posts in this forum you'll find that there are many who weren't diagnosed by the traditional tests but, because of positive dietary response, are now gluten-free and staying that way.

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