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Are Celiacs Really Slowly Dying?


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#1 Scouts

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Posted 28 December 2012 - 02:34 PM

Has anyone read this article?

http://scdlifestyle....e-slowly-dying/

Disturbing. I am following the gluten-free diet but am still having stomach problems all the time. I am wondering if I am sensitive to other things as well. Has anyone else dealt with issues even after going gluten-free? My stomach is always upset and I am worried about my overall health. Why isn't gluten-free working?
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#2 Opa3

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Posted 01 January 2013 - 01:30 PM

Has anyone read this article?

http://scdlifestyle....e-slowly-dying/

Disturbing. I am following the gluten-free diet but am still having stomach problems all the time. I am wondering if I am sensitive to other things as well. Has anyone else dealt with issues even after going gluten-free? My stomach is always upset and I am worried about my overall health. Why isn't gluten-free working?

Dear Scouts,
Yes, it's true but don't let it disturb you. I've been a Celiac for 30 years (since 1983). I'm still alive! Still strugle with GI issues( IBS, Gerd, Divertilosis?). I struggle with spelling too. :rolleyes: I relapsed in 2007(cheated). Again, in 2012(cross contamination suspected) If you could tell the forum more about your situation, that would be helpful. Afterall, that's what this forum is all about. Lots of members willing to help you.
My best wishes for a long and happy life. A healthy one is up to you.

Edited by Opa3, 01 January 2013 - 02:26 PM.

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#3 GottaSki

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Posted 01 January 2013 - 02:41 PM

Sure feels that way when I'm at my worst -- thannkfully I've experience miraculous improvement as well. I try to focus on the latter :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 Celiac Mindwarp

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Posted 01 January 2013 - 04:17 PM

Anyone can make any disease sound horrific if they string together enough negative research. I am not saying it is not very very tough sometimes, and many people on the board have had massive health problems. But, many people go on and lead good long and happy lives too.

We sure do need more research, but I am unsure of the motivation of this particular author.

There is a broad spectrum across celiac disease. I would hate newbies to think they are not going to make it to tomorrow.
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#5 kareng

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Posted 01 January 2013 - 04:25 PM

I would question where they are getting these healing " statistics"? Many Celiacs have had repeat biopsies after 2 years and been found to be healed. Some don't bother to do that because they feel good and their blood work is good.

This link is to a site that wants to sell things, not a medical research site, so I take that into account. Not sure of the credentials of those two guys pictured, either.
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"You have problems.  There are not enough paper clips, and then you've got world hunger.  Your problems are somewhere in between." -DPR,III

 

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#6 Marilyn R

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Posted 01 January 2013 - 07:53 PM

My dear mother lived until 87 years old with diagnosed celiac disease.


My suggestion is to be compliant and enjoy life to it's fullest.


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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#7 mushroom

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Posted 01 January 2013 - 08:01 PM

Besides, we all start slowly dying from the day we are born :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#8 dilettantesteph

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Posted 02 January 2013 - 04:58 AM

This blog talks about a study of people who experience symptoms while on a gluten free diet. http://celiacdisease...n-free-diet.htm
You aren't alone there. I had that problem as well, and I have gotten rid of the symptoms by switching to a diet of mainly unprocessed foods, and by checking everything I eat with elimination/challenge diets. I put myself in the super sensitive celiac category.
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#9 Marilyn R

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Posted 02 January 2013 - 01:57 PM

Besides, we all start slowly dying from the day we are born :)


Snort! Luv ya 'shroom! Happy New Year!

(Sorry, off topic.)
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.


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