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Specialist Says 'while I'm Reactive, I Don't Need To Be Extremely Careful To Avoid Gluten'


Bananas

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Bananas Newbie

Hello! I'm a newbie to this forum and I'm really impressed by all the information and knowledge members are sharing. Thank you!

I am very confident I've got gluten intolerance but I have a few questions. I'm 26, female and have 'belly issues'. However, I've been told that I don't need to be very careful to avoid gluten.

I had the endo & colonoscopy last week to rule out ulcerative colitis, crones, celiac disease, ulcers and all the other things.

Apparently my bowels are beautiful and although I almost certainly had an ulcer at some stage, it has healed itself (apparently this is from all the neurophen and aspirin I took). I've got 'IBS' - which means that I've destroyed my savings and Christmas for absolutely no reason!

We're still waiting on the biopsy results for celiac disease, but I am certain they'll come back negative. I didn't eat enough gluten for the test as I was scheduled two weeks later and I struggled to consume the 2 sandwiches a day. Also, (and please correct me if I'm wrong) as I'm still not at the extremely sick end of the disease yet, it's unlikely that they'll be able to find the diseased tissue in the random selection of the biopsy. My blood tests (taken about 3 months before I saw the specialist) came back as borderline, which is interesting as I eat hardly any gluten and was having a day when I didn't feel so bad.

My gastroenterologist told me that if the biopsy comes back as negative, then I'm likely to not have an extreme reaction to gluten and therefore I don't need to go out of my way to avoid it. However, I do have a reaction to gluten and since the procedure, I've become extremely sensitive. Is there such a thing as being only 'a little bit sensitive?' to gluten as his opinion is very different to what I've heard?

My sister is celiac and is the runt of the family. My mother and another sister also have reactions when they eat certain foods.

Excuse the long post, but I would like to know if it is ok to eat gluten sometimes when one isn't at 'deaths door'.

If you need symptoms or any other information, please let me know.

Thank you!


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ravenwoodglass Mentor

Excuse the long post, but I would like to know if it is ok to eat gluten sometimes when one isn't at 'deaths door'.

No it's not safe to only eat it sometimes. But I think your body is going to let you know that anyway once you have been strict with the diet for a bit and have healed. If you are forming antibodies to gluten even a small amount will flare those antibodies into action.

Now that you have had your testing done do give the diet a good strict try. I hope your feeling better soon.

Bananas Newbie

Thank you very much. When I was strictly gluten free and enjoyed lots of exercise I was very healthy.

frieze Community Regular

A "little bit" celiac, is like being a little bit pregnant....

quakenbake Rookie

If you were very healthy while on a strict gluten-free diet and exercising, then you should go back to that. Since there is so much food sensitivity (including actual Celiac) in your family and you're done with your tests, it just seems like a good choice all around to avoid gluten.

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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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