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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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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!!

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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

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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.

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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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    • Gluten does WHAT to the brain?
      My first thought was how many people that have been labeled as mentally ill or psychotic actually have Celiac Disease and never get diagnosed?  Their whole lives spent battling these conditions, being flooded with various meds and no one looks at their diet or does other testing!  It really is tragic.  I always wondered whether Patty Duke was an un-diagnosed Celiac.  She was finally diagnosed with bi-polar and ended up dying of a perforated intestine, at the young age of 69.  Ya gotta wonder........
    • Desperately Seeking DISARONNO!
      I think the company knows what the ingredients are better than us.  If you mean Amaretto, I have had it.  
    • Gluten free before biopsy???
      My doctor required me to continue eating gluten before the endoscopy for biopsy. She did say I could let up "a little" to ease some of the terrible pain I was having, but wanted me to eat gluten-containing foods every day until the biopsy. As it turned out, they were able to get me in quickly, so it was really only a few days for me. Both bloodwork and biopsy confirmed the diagnosis and now I am happily gluten-free! It has been a challenge, but having a gluten-free kitchen, checking labels on foods and being super-careful when going out has worked wonders. I am not 100% recovered yet, but getting energy back a bit at a time as my nutrition status improves. We don't eat out much - mostly at vegan places that declare they are gluten-free (although I still eat chicken, eggs, milk, and beef sometimes at home). One day, I'll go somewhere else - but not without checking first! Best of luck to you. I think it important to always double-check with the doctor when there are any questions at all. My doctor welcomes questions and I hope yours will too.
    • Gluten does WHAT to the brain?
      Thanks for posting I was just looking at this a short time ago. Something I found interesting was the last line of the article- " The psychosis that the woman experienced was an extreme condition and very unique, Fasano said. " While not common I am not sure that it is that unique.  There is a fair amount of research that has been done on the effects of gluten on the brains and nervous systems of celiacs.  Doing a search with the words neurological and celiac at places like Lancet, PubMed and the NIH can bring up some really interesting studies. Thankfully this impact is slowly becoming more common knowledge in the medical circles. Many of us have experienced in our families or first hand the way that the antibodies can impact our mood and thinking. It does seem miraculous when the clouds finally lift. I wish more doctors would test for celiac before pulling out the prescription pad, especially with kids.
    • Desperately Seeking DISARONNO!
      If you are referring to Amaretto Disaronno, then I can tell you that I have had it a couple of times since being diagnosed in 2005 and never had a problem with it. I am very sensitive too and react strongly to cc.  I do not drink much variety in the way of alcohol but red wine and this seem to be perfectly fine!
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