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Mountain Mama

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Mountain Mama Rookie
Mountain Mama
Posted

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
CarlaB
Posted

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

dlp252 Apprentice
dlp252
Posted

Hi and welcome from me too!

skipper30 Enthusiast
skipper30
Posted

Welcome aboard!!

:D:D:D

GFBetsy Rookie
GFBetsy
Posted

Welcome again! :D

Nantzie Collaborator
Nantzie
Posted

Welcome!!!

:)

Nancy

SchnauzerMom Rookie
SchnauzerMom
Posted

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

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bluejeangirl Contributor
bluejeangirl
Posted

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
mamaw
Posted

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
Looking for answers
Posted

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
tiredofdoctors
Posted

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
happygirl
Posted

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
rinne
Posted

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
Mountain Mama
Posted
  • Author

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
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

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