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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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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
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