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Recovering From Celiac
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8 posts in this topic

Recovering from Celiac:

Makes one feel like a bird coming out of a cage! Set free!

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Now I'm even more confuzzled. I'll just move on.

Glad your feeling better Diana.

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....like your butterfly wings have dried :)

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....like your butterfly wings have dried :)

Oh, I like that, so fresh and new!

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Recovering from celiac is like having the DA say that new DNA evidence proves you were innocent all along and will now be released after spending years imprisoned for a crime you did not committ.

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Recovering from celiac is like having the DA say that new DNA evidence proves you were innocent all along and will now be released after spending years imprisoned for a crime you did not committ.

Yeah, I think so. It wasn't all in your head after all!

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Recovering from celiac is like having the DA say that new DNA evidence proves you were innocent all along and will now be released after spending years imprisoned for a crime you did not committ.

I think this is such a good one. Living forever with the stigma of having been sick for so long. Forever having people who will never believe you. Consequences will linger from the time lost and nothing can ever fix that. But, life can only get better, you are set free and everyone who isn't a moron or hold a grudge for something that isn't your fault will let go of your past and look to your future with you.

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Oh my goodness, I know! I was diagnosed at the first of the year and I'm still amazed at how fantastic I feel!

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    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
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