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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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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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