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Mountain Mama

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Mountain Mama Rookie

I just ordered this book. Celiac Disease, a hidden epidemic. Does anyone have good or bad experience with it? I was diagnosed with celiac disease in october of this year via blood test and biopsy. My poor little villi were all flat as a pancake. I have been sick for years. Diagnosed with graves disease in 1997. One dr tried to tell me it was all in my head twice. My new dr said, "Hmm, let's test you for celiac disease." And low and behold there was a reason I was feeling crappy all this time!! lol I have been gluten-free since october 10th. My dh said our house should be gluten-free so we recently did that as well. I have 4 children all of whom tested negative this month. I am startng to feel a bit better but I still have lots of bad days. My dr said by the time I have been gluten-free for 6 mos I should notice a difference. I have been lurking here since I was diagnosed and decided to come out of lurkdom. The nurtitionist didn't have a whole lot of info for me that I had not already learned on here. She did tell me about flour in the air and gave me a link to a website for gluten free drugs. Anyways, here I am, and I am glad to be here, lol. This website has been a lifesaver to me!


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CarlaB Enthusiast

Welcome! I'm glad your on your way to feeling better!

dlp252 Apprentice

Hi and welcome from me too!

skipper30 Enthusiast

Welcome aboard!!

:D:D:D

GFBetsy Rookie

Welcome again! :D

Nantzie Collaborator

Welcome!!!

:)

Nancy

SchnauzerMom Rookie

Welcome. I'm glad that you are getting answers here. This place has helped me a lot too.


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bluejeangirl Contributor

I'm glad you peeked over the fence to say hi. I think its cool your husband is so supportive. Some aren't.

gail

mamaw Community Regular

Hello & welcome

I alway love it when a doctor says its all in your head & then by golly you find out it wasn't. I just want to slap these doctors silly. Glad you are doing better. Nice to have a supportive mate too...........

mamaw

Looking for answers Contributor

Hi!

Would you mind sharing the link to the site with gluten-free drugs. I'm relatively new to all of this too and have been looking for a site. Thanks, and welcome!

tiredofdoctors Enthusiast

Hi and Welcome! It's not in your head, it's in your autoimmune system! Here's to starting to feel better!

(((hugs)))

Lynne

happygirl Collaborator

welcome to the board :)

I love his book in relation to Celiac. It doesn't cover non-Celiac gluten intolerance, but in terms of Celiac, it is an up-to-date reference, that is esp good to share with your doctor.

Open Original Shared Link (this is the Columbia University Celiac Center's page)

there are links to the left once you are on that page, including ones to read his bio.

it takes everyone different amounts of time to feel better....some immediately see an improvement, but it takes them awhile to get back to normal. Others don't see ANY immediate signs....and gradually....slowly....they get better. It depends on many factors, including how strict you are on your diet, how much damage has been done, etc. It really depends: some people rebound quickly and it doesn't make sense why...others who have it supposedly for a short amount of time or less damage can take a long time. There is no set way to feel/respond, just as there is no set symptom list (it is extensive, as you know!)

I hope this helps. Let us know what we can do .... I recommend reading, reading, reading, and doing searches on this board...there is such a wealth of info. Just keep reading :)

We are happy to have you here!

rinne Apprentice

Hi and welcome. I'm so glad you found a doctor who was able to help you. Finally!

This is a great site, lots of information and a great place to play with others who "get it".

Mountain Mama Rookie

Thanks everyone! :D

Hi!

Would you mind sharing the link to the site with gluten-free drugs. I'm relatively new to all of this too and have been looking for a site. Thanks, and welcome!

The site my nutritionist gave me was www.glutenfreedrugs.com

welcome to the board :)

I love his book in relation to Celiac. It doesn't cover non-Celiac gluten intolerance, but in terms of Celiac, it is an up-to-date reference, that is esp good to share with your doctor.

Open Original Shared Link (this is the Columbia University Celiac Center's page)

there are links to the left once you are on that page, including ones to read his bio.

it takes everyone different amounts of time to feel better....some immediately see an improvement, but it takes them awhile to get back to normal. Others don't see ANY immediate signs....and gradually....slowly....they get better. It depends on many factors, including how strict you are on your diet, how much damage has been done, etc. It really depends: some people rebound quickly and it doesn't make sense why...others who have it supposedly for a short amount of time or less damage can take a long time. There is no set way to feel/respond, just as there is no set symptom list (it is extensive, as you know!)

I hope this helps. Let us know what we can do .... I recommend reading, reading, reading, and doing searches on this board...there is such a wealth of info. Just keep reading :)

We are happy to have you here!

Thanks a bunch for that information! I didn't have that link yet. I am about halfway thru the book and find it very informative. Before I was diagnosed I knew of celiac disease but didn't know anything about it. Now, it seems like information is everywhere! I am finding the tiny little words gluten free on many regular products where I had never noticed it before, like on my tea! How wonderful!

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    • trents
      This kind of question is always difficult to give a definitive answer to because of so many variables. One such variable is the sensitivity of the individual celiac to small amounts of gluten cross contamination. An amount that causes a reaction in one celiac many not in another, or at least not be discernable which, of course, does not exactly equate to being "safe".
    • Russ H
      I don't live in the US, but based on this thread, I wouldn't risk it:   https://www.reddit.com/r/glutenfree/comments/1n2ehw8/cracker_barrel/   This app is helpful: https://www.findmeglutenfree.com/
    • Elena1234
      I see that Cracker Barrel restaurants have a gluten free menu (not all locations, but one confirmed that they do). I was wondering if it is safe for my 5 year old son with celiac disease? 
    • Russ H
    • trents
      Welcome to the forum, @Mmoc! Please include the reference ranges for the IGA and the TTG tests in your next post if you have access to them. We cannot comment much otherwise as different labs use different reference ranges for these tests and also different units of measurement. There are no universal standards as of yet so the raw test numbers are not always helpful. Having said that, if your IGA (what we usually call "total IGA") is low, the TTG-IGA score will be skewed and cannot be trusted. Other kinds of tests for celiac disease would need to be run, particularly those in the IGG family of tests. Perhaps this will be helpful:  
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