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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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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
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