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Doctor Says Ibs, But I Know It Is Celiac...

PreOptMegs

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PreOptMegs Explorer
PreOptMegs
Posted

I am 100% sure I have celiac, but I just went to a specialist that told me it is most likely IBS. The thing is I GAIN weight when I eat gluten, so I guarantee my biopsy is going to be negative, but the point is, I am still intolerant to gluten, which is the definition of celiac. Being on the gluten-free diet, I have lost weight and feel great, so I reassured even more that I am going in the right direction. Anyone else gain weight with gluten and told it was IBS?

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KaitiUSA Enthusiast
KaitiUSA
Posted

Doctors commonly misdiagnose celiac for IBS. I would check out some other doctors who know alot about celiac disease. Have you had blood tests done? If so how did those turn out? If you feel better on the gluten free diet stay gluten free. Your body knows more then any doctor or test can tell you.

ianm Apprentice
ianm
Posted

I gain weight and get lots of bloating when I eat gluten foods. Never had a doctor say it was IBS but none of them ever said it was celiac disease or at the very least gluten intolerance.

Eliza13 Contributor
Eliza13
Posted

I get very bloated when I eat gluten too. I also gained 25 lbs in 1 year b/c my appetite was out of control. Doc said is not necessary to be skinny with celiac....If you are eating like I was, you are bound to gain weight....even if much of it is going right through you via excessive bowel movements. Not sure if any of this is true, but it has been my experience and is what my doc told me. Hope it helps.

Eliza13 Contributor
Eliza13
Posted

I should have also added that excessive hunger sometimes results due to malabsorption. How much are you eating?

PreOptMegs Explorer
PreOptMegs
Posted
  • Author

Thanks all very much for the response. I have had blood tests done and these emphatically showed that I had celiac disease. My levels were 3x what they should have been. The doctor kept asking me if I have any diarrhea, which I haven't... he immediately said, I don't think you have celiac disease, but instead IBS. I was extremely frustrated. I have been manipulating my diet to test and have always found the same symptoms after eating gluten, so for this doctor to basically ask me one question and tell me I don't have celiac. As for my appetite.... I actually get really full really fast, and I am not sure what that means.

KaitiUSA Enthusiast
KaitiUSA
Posted

Go with the blood tests...you do have celiac. I recommend another doctor. He sounds like he does not know anything about celiac. You do not have to have any certain symptoms to have celiac. You don't even to have any at all.

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skbird Contributor
skbird
Posted

It's funny, I just remembered all the times I went to doctors and told them about my stomach woes. They would always ask if I had diahrrea or constipation and I'd say constipation and that would be the end of it. I never knew until just now they were all deciding that gluten wasn't my problem. Weird!

Stephanie

marycubs Rookie
marycubs
Posted

I was first diagnosed with IBS - and now a confirmed celiac disease. My first doctor didn't even know about celiac disease. Last year I lost 20 lbs in a few months, then gained back weight in a month, now am losing again. I also felt very "full" after eating a small portion of food..and I bloated. I did have the frequent bowels movements - but from what I've read on this site - that doesn't necessary mean you are or aren't celiac disease. Good luck - sounds like you need to look into a new doctor...

julie5914 Contributor
julie5914
Posted

Hey, You sound like me! I was told IBS a long time ago. My plumbing just seems to get clogged, and it does seem to worsen with any type of stress. Sometimes I would be ok with the IBS diagnosis, other times I wouldn't. I gained a little weight (but mostly inches) and had spastic bowel movements - sometimes a lot a day, sometimes none for days, and tons of bloating.

Recently, I went to UNC for a study they were doing on the causes of IBS. They found bacteria in my small intestine that causes ulcers. I then realized that the symptoms I had been having in my upper GI were very much like an ulcer, I had recently been on anti-inflammatories, and that would probably also explain my anemia. I went on a strong course of anti-biotics, and I feel like a new person. I still have the lower GI problems though.

Well, I got my other results from the study back today - they did a sigmoidoscopy, which was normal, thank goodness, a C-reactive protein test, a serotonin level test, a CBC, and a celiac blood test. All were normal except the celiac test - here were my numbers: Gliadin AB, IGA 61.2 (more than twice the max), Gliadin AB, IGG 106.3(more than 4 times the max), endomysl AB IGA positive.

I was surprised. After having the ulcer heal I was ready to fully accept IBS and move on. I don't particularly want an edoscopy, but I am not sure I will have the will power to stay off gluten without knowing that I am really hurting myself. I am about to make my own post - maybe the replies to it can help you too.

Guest nini
Guest nini
Posted

Julie, with those numbers you ARE hurting yourself by consuming gluten. If you want to wait for an endoscope that is your call, but I would take those blood test results as a big ol positive and know that you def. have celiac and whether or not an endoscope shows it YET, you are still damaging your body.

I was mistakenly dx with IBS for years before the celiac dx. I also would gain weight eating gluten foods with the big "D" and occasional constipation. Since I have been gluten free (2 years) I have lost over 65 pounds and am still losing.

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    • knitty kitty
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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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