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Coeliac Versus Gluten Intolerance


Midget

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Midget Newbie

After 10 years of suffering and believing I had IBS, my doctor is sending me for testing for coeliac disease next week.....however if these come back negative I don't know whether it's worth me trying a gluten free diet as it could be gluten intolerance rather than coeliacs???

Here are my symptoms: (Sorry of its graphic)

Diarrhoea which is usually urgent, once I need to go, I HAVE to go, several times a time except when I occasionally become constipated for about two days- (Probably not true constipation but I feel there is stool in my rectum that I cannot push out)

Bloating accompanied by abdominal pain eased by having a bowel movement

Wind- serious offensive wind

Left upper abdominal pain

Gastric reflux

Excruciating pain upon eating (about once per week), this leaves me doubled over in agony for about 20 minutes before I can stand up- then it eases to a dull ache for a few hours but this is at least manageable.

I am pale, and exhausted all the time.

do you think if the test comes back negative for coeliacs, then It could just be gluten intolerance? I'd appreciate any advice or comments you have as I'm getting desperate really. I do eat a lot of gluten in my diet so worry about how i'll adjust to a life without it.

Thanks

Midget


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MySuicidalTurtle Enthusiast

Well, despite what tests say, if you feel better off gluten then why not stay off. The diet is worth trying and after you get used to it, it is pretty easy!

happygirl Collaborator

Welcome to the board. Wait and see what the results are, have a discussion with your doctor, and consider trying the diet to see if your symptoms improve. If the tests are negative, and you go gluten free for a period with no improvements, then you'll know its not gluten and need to pursue another path.

Midget Newbie

Thanks guys will have to wait and see now I guess, I have been stuffing myself with gluten though as if i'm gonna have to give up big macs and krispy kreme doughnuts, I may as well have one last one! My bowels are not thanking me for it though I must confess!

Went to have the blood test today but the nurse couldn't draw blood so have to go to hospital Tuesday for the test. I just want to know now though. I think I will cut out gluten if it is negative and then reintroduce different aspects of gluten to see if its possiby just wheat intolerance as bread seems to have the biggest impact on me.

We'll see.

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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.
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      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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