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Hello, I'm new to this super-sensitive situation.  I am not celiac (or at least I never had the biopsy because my antibodies were negative), but I went gluten-free about 12 years ago and it made huge differences in my health.  I had been suffering from continual infections for many years, and after going gluten-free the infections resolved as well as many other symptoms that I hadn't even realized were signs of illness (heartburn, constipation, fatigue, weight gain). 

For many years things went really well, but a few years ago I noticed that the symptoms were starting to sneak back up on me.  I tried eliminating all kinds of things, even going grain free for a while, but no luck.  I did find a shampoo that had wheat oil in it and felt somewhat better after getting rid of that, but the symptoms were not completely gone. 

Finally I realized maybe it was in my vitamins so I stopped all of them and finally felt better!  Everything I was taking said "gluten free" on the label but when I contacted the company (Jamieson) they said their facilities were not gluten-free and there could be cross contamination. This was the first I became aware of the possibility that I could maybe be that sensitive. 

And now I seem to be reacting to EVERYTHING!!  In the past 6 to 9 months I have gone through months of what I thought might be fibromyalgia but after reading about Dr. Fasano's Gluten Contamination Elimination Diet I tried that, and have been feeling much better again! 

It's really HARD to do it over the long term, though (and I'm a really good cook, and a dietitian by trade!) so I'm trying to figure out which processed foods are safe to add back.  I am gradually checking with manufacturers about food products again, and adding things back one at a time but only after I've confirmed that they are made in a wheat free facility and are not likely to be grown with wheat. 

Flare ups last for about 3-4 days, so it's hard to trace back everything I ate in that time.  This weekend, I had a big flare up and I can't figure out why.  Today (Tuesday) is the first day I'm feeling better so it likely happened on Friday or Saturday.  I was at a wedding on Saturday but brought all my own food.  The only things I ate at the wedding were some vegetables off a pre-packaged veggie tray from Costco!  The only other place I could imagine was on Thursday when I ate lunch at a picnic table with some colleagues and was sitting "downwind" from my friend who was eating a sandwich.  It's scary how paranoid this condition makes you! 

My hubby has gone gluten-free with me; we've basically eliminated wheat from the kitchen; I'm using tinfoil on our bbq (can't afford a new one) in case there are any stray crumbs there; we had a potluck on the weekend and I asked people to bring raw ingredients so I could cook everything here; we are invited out to dinner tomorrow and I'm bringing my own food, etc. etc. etc.

I'm hopeful because I'm feeling better but also daunted by the prospect of eating this way forever.   I wonder if it's possible that that long term exposure to trace amounts of gluten in my vitamin supplement could have hypersensitized my system and that things might improve again as time goes by...?  Any thoughts? 

I am happy to have found this forum.  I will look forward to reading more of your posts. 

Edited by acappella2
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Well, you might not be hypersensitive (I can not really speak to that issue), but it is safe to say that many celiacs think they are diet adherent, but really are not.  Studies show that some celiacs never heal:

https://www.verywell.com/celiac-disease-when-will-your-small-intestine-recover-562341

 Some refuse (my doctor has two of them) to go gluten free and prefer to suffer.  Some make poor food choices and others could be getting gluten into their diets accidentally through cross contamination or mis-labeling.

Here is a study about trace contamination in a gluten free diet.  It addresses those who have been or suspect refractory celiac disease (which is rare), but after a whole foods diet, they became well.  

http://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-40

I personally do not use any supplements that are not certified gluten free.  Now that I am healed (I think), I avoid taking any supplements.  Gee, Consumer Reports just issued a huge report this month on supplements and herbs.  These are definitely not regulated like other drugs (even over the counter).  Food manufacturers (like Kraft or ConAgra) have to follow stricter regulations than supplements.  

I get my minerals and vitamins through a varied diet of meats, fish, veggies, fruit and some nuts.  You'll notice that I do not consume grains or beans (rarely) and that's because I am also a diabetic and those are high in carbs.  Funny though, I finally felt better when I stuck to a whole foods diet and gave up even certified gluten free junk food after my diabetes diagnosis.  Now, I have certified gluten-free grains just as a treat (birthday cake).  

Bottom line is that more research is needed.   There are so many things we don't know about celiac disease and how it impacts individuals (we are all different!)  

 

 

 

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My strategy for now is to only go with packaged foods that people on this part of the forum like.  The only one that has really worked is King Soba buckwheat noodles.  Most products that are labelled gluten free cause reactions in our household unless they are naturally gluten free and also run on dedicated lines with no chance of cross contamination.  If that's what we have to do to gain health, so be it!!  I've learned to cook a mean steak, and we have gotten used to and now prefer the taste of grass fed beef.  I call a lot of manufacturers.  But I know with that kind of vetting I can trust what we're eating.  Who knows about the future?  I don't dwell on it.

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