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JessieFree

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JessieFree Apprentice

I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?


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Lisa Mentor
I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?

A gluten reaction can be delayed, and some here can react up to three days later. That might be something to think about. There are also some celiacs that are non-symptomatic. They have no symptoms, but the damage does occure.

Celiac is not always about what you consume in your meals. Lipstick, lotions, shampoos, meds and scratched pots and pans, wooded spoons used prior to being gluten free can also cause problems.

I do not know how long you have been gluten free, but for many here, it has taken months to feel relief from a gluten free diet. There are way too many traps to fall into when you are first diagnosed.

It is really unrealistic for a very newly diagnoses celiac to go 100% - there is just way too much to learn. But it can be done with study and diligence.

Hope that can answer some of your questions. And welcome!!

Ed-G Newbie

For me, it depends. Sometimes I get a gluten reaction right away, and sometimes I don't seem to get any at all.

Ed in MD

Mickide Apprentice

I have been walking through life with no idea I was Celiac or real symptoms from gluten. I just thought it was me, how my body was, never really thought anything was wrong (except losing 30lbs). It is actually my biggest fear about my recovery, that I won't know if I accidentally ingest gluten.

jacqui Apprentice

After I was diagnosed my sis ter kept denying she had celiac b/c she did not have symptoms or so she thought. 10 mos. later she was + for celiac disease, anemia, osteopenia, vit. deficiences... Since gluten-free she is feeling much better and relized she did have symptoms after all but she just thought it was normal ie bloating to looking pregnant after eating-she just thought she ate too much...

She also became sick going gluten-free at first. Every "typical" symptom of celiac disease she had on a gluten-free diet!! :blink:

I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?

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    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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      Welcome to the celiac.com community, @JamieAnn!  Glad you had a good experience at your local Jersey Mike's.  In the town I live in all we have is Subway and they stopped offering gluten free buns. So, I can't eat there anymore. Oh, more recently there has come to our town a Firehouse sub shop and, according to the Internet, they offer gluten free buns but I haven't tried them yet. For super sensitive celiacs, cross-contamination in handling at these sub shops may also be a problem.
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      Today, in Uniontown, PA,  I ordered Jersey Mike’s Italian sub on gluten-free bread (paid extra for gluten-free) for my brother who hasn’t had a sub in yrs (neorological prob if consumes). He’s so happy! Their gluten-free bread is from a company that specializes in gluten-free products, some of which I’ve enjoyed before, so figured a sub would be good! Jersey Mike’s fast-food restaurant chain
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      Thank you @knitty kitty x
    • trents
      Most recent gluten challenge guidelines call for the consumption of at least 10g of gluten (about the amount in about 4-6 slices of wheat-based bread) for at least 2 weeks.  When celiacs have been on gluten free diets for long periods of time, they often find that when they consume a good amount of gluten, they react much more strongly than they did before going gluten free. They have lost all tolerance to the poison they had when consuming wheat products regularly. That is certainly the case with me. A couple of years ago I accidentally consumed a wheat biscuit my wife had made thinking it was a gluten free one and it made me violently ill. So, I mention that as I don't know if your son has started the gluten challenge yet.
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