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Celiac And Not Ibs! 65 Pounds Lost!


unhappycramper2

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unhappycramper2 Newbie

Hello, :)

I would like to know any IBS'ers out there that had a weight loss problem. If I knew that this is not the case, and IBS patients had not lost any significant weight lost like me,then I could rule out IBS. More than 50% of patients have a years-long delay in the correct diagnosis.

All along I'm thinking it may be IBS,but with the weight loss, I'm not so sure.

Maybe I am one of those people who thought I had IBS, but all along really have Celiac Disease,(along with Crohn's,) IBS mimics these two conditions almost identically.

Symptoms include abdominal pain,cramping,constipation, gas, bloating,back pain,and weight loss...I have lost 65 pounds since last October!

A Gastroenterologist can perform a blood test and biopsy for a diagnose. treatment involves avoiding all gluten-containing foods. (wheat,barley,rye,and oats)

This condition of cramping hasn't improved with my diet of Metamucil crackers (wheat), oatmeal (oats) Pringles (wheat) anything with wheat,which is a lot of foods I like. Dahhhh. HELLO!!! I guess I am a gluten for GLUTEN!

I would like anyone who can give me a safe gluten free diet, (or resources) they've been on,that might make me feel better.

I have been suffering since last October when I had a series of three blood tests- no parasites, a doc said maybe IBS with Constipation // an Upper/lower GI- found Gerd, // Colonoscopy - found no Polyps, but Mild Diverticulosis. And my weight loss,which I'd like to know if IBS'ers suffer with that as well. Thanks for any info on Celiac Diets / resources, other Forums,so I can get armed with additional info. I need another Blood test to rule this out,and maybe other tests like a Endoscopy,or Sigmoidoscopy.

I also would like to know if celiac patients get the Rectal Spasms called "Proctalgia Fugax" extreme sharp pains in the rectal area. :rolleyes:

Thanks for any help!


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jenvan Collaborator

Hello! First off, IBS, I think is a catch-all term docs often use to label those who have not been identified with a disease or illness. That is what happened to me (and many others here). I was told I had IBS for a decade and a half...till I was finally diagnosed with Celiac last year. If your doc is still telling you IBS after all that weight loss--find a new one. IBS should not cause extreme weight loss--that is a sign of another problem. I was also put on some meds and "fiber therapy" to improve my "IBS"--but of course, to no avail. I would definitely pursue testing--start with a Celiac blood panel. You may not have it, but your symptoms definitely make it a possibility. Either way, you should not be suffering as you are. If you choose not to pursue testing but want to try the diet, know that going on a gluten-free diet will alter any tests you might have done and possibly make them negative. So if you are interested in having specific tests for Celiac, you may want to get that done before trying the diet. If you want to go gluten-free, a good place to start is with these safe and forbidden ingredient lists--they are a great help with shopping for foods. Know that some companies, such a Kraft, make it a policy to list any gluten ingredient or source on their labels...but unfortunately not all companies do that. Get the lists here: https://www.celiac.com/st_main.html?p_catid=12 Good luck and let us know what you find out!

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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