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

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

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

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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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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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