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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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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
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      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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