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Are My Symptoms Celiac Or Ibs?


Thomasmcfall

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Thomasmcfall Newbie

Hi all, firstly this site could be very helpful for me so its great!!

I have the following symptoms and my GP has said I am suffering from IBS,

I have been tested (blood) and have seen a Specialist (Gastro.....ologist) and they have both said that I have IBS, I have had no Endoscopy, or Ultra-sound scan or biopsy???...

My symptoms then... Very sore tummy pain, bloated/cramps...severe wind (no Vomiting)But often feel sick/nauseous...

Have some dry skin on my head, chest (although I do suffer from exzema).. I would real appreciate some help...friends and colleagues have suggested gluten in my diet, or perhaps dairy produce???

I just get so depressed and It really does severely affect my life.

Hey thanks everyone!!

Thomas


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pewpewlasers Rookie

I would ask your doctor about an endoscopy. Have they told you why they haven't done one yet to rule out celiac?

Fiddle-Faddle Community Regular

While an endoscopy can confirm celiac, it really can't rule it out. There have been plenty of people on this board whose initial biopsies were negative, but later biopsies showed celiac.

There are several possible reasons for this.

The first biopsy might have been taken before there was significant damage to the villi.

The first biopsy might have been taken when the patient was already gluten-free (an automatic negative biopsy, but most doctors don't seem to understand this).

Some patients with celiac never develop villi damage, or only develop it much later (such as those with Dermatitis Herpetiformis, which is an automatic diagnosis of celiac even without villi damage).

Even when there IS villi damage, it is often patchy, and not easily visible. A couple of tiny (1/4 inch or smaller) samples taken from 22 FEET of intestines can be a hit-or-miss affair in this situation.

The current idea that the "gold standard" diagnosis of celiac is based on the technology of 50 years ago, when this "gold standard" first came into use. This was before the sensitive and high-tech blood tests of today were available.

Many people question why the biopsy is still considered the gold standard of diagnosis. Indeed, many doctors do diagnose celiac based on blood work alone, though most still rely on the biopsy.

nu-to-no-glu Apprentice

If this is any help...my dr believes that "ibs" is merely a symptom. I was diagnosed with ibs probably about 6 times, by 6 different drs and having taken about every ibs medication available (with no relief) I have to say I believe it! I've been gluten free only a month, and the results are astounding! I recommend just trying it, as a search for an educated dr can be frustrating.also,search for a thread called "recommend a dr in your state" and you might find a knowledgable dr near you. I think its a good place to start, especially if you think you notice a connection. Good luck!

  • 2 weeks later...
missybean Apprentice
Hi all, firstly this site could be very helpful for me so its great!!

I have the following symptoms and my GP has said I am suffering from IBS,

I have been tested (blood) and have seen a Specialist (Gastro.....ologist) and they have both said that I have IBS, I have had no Endoscopy, or Ultra-sound scan or biopsy???...

My symptoms then... Very sore tummy pain, bloated/cramps...severe wind (no Vomiting)But often feel sick/nauseous...

Have some dry skin on my head, chest (although I do suffer from exzema).. I would real appreciate some help...friends and colleagues have suggested gluten in my diet, or perhaps dairy produce???

I just get so depressed and It really does severely affect my life.

Hey thanks everyone!!

Thomas

I have been diagnosed as having IBS as well and I have seen so many doctors from allgergist,dermatologist,rheumatologists,gastro's, to GP's. I never had any positive blood work for celiac but I basically figured out on my own I had a problem with grains. Didn't suspect gluten until I started getting these awful hive like rashes on my knees and my primary said that it looked like DH and said the only way to get better is gluten free diet....I did it and with-in a week all my IBS symptoms and joint pain went away and the itch rash started to improve. Hummm. I agree with a lot of other people.... diagnoses really shouldn't just be based off of positive blood work or boipsies because many of us get tested for years and still no positive tests results. Go gluten free for a couple of months. Some people notice a difference right away and others it takes months if not a year or two for all the symptoms to go away. Don't give up and trust your gut no matter what some stupid test says. I have been on this journey for only 2 years of trying to figure out whats wrong and I'm just finding stuff out. Do a food journal thats what really helps and you could also have other food sensitivies as well as gluten issues..... most of us do. I agree with the theory that IBS is really a symptom of gluten sensitivity or other food allergies. I makes sence to me. To me IBS is just a name for a bunch of symptoms that they can't figure out or get any positive blood work on.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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