Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

PreOptMegs

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,885
    • Most Online (within 30 mins)
      7,748
    susieq312
    Newest Member
    susieq312
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      Testing for celiac

      By Bebee · Posted

      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...