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What Is The Worst That Can Happen?


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#1 katiekay

 
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Posted 25 March 2011 - 04:16 PM

Hi... this is an idiotic sounding post.
What is the worst that can happen if you have celiacs and don't go gluten-free.
I am new to the whole celiacs thing. I suspect that my husband, myself, and my 18 mo. old have celiacs. I know for her it means failure to thrive etc. Horrible stuff for her. For myself I will have no problem going gluten-free even if it's just to support my daughter and husband. My husband, on the other hand, not sure about...
He has decided to get a blood test but even if he gets a positive not sure he will be that strict. We don't have severe reactions like some people I've read about. Stomach troubles, rash, joint pain, trouble concentrating... stuff like that... So if he doesn't go strict at the age of 44 is it a big deal? I mean could he die from it or is it that he just wont ever feel that comfortable health wise??
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#2 mushroom

 
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Posted 25 March 2011 - 04:56 PM

Those who don't notice any symptoms from celiac disease have it harder than those who do, because they don't see any benefit in doing the diet. Their problem is they have no idea what damage they are doing to their body, while the people with the symptoms KNOW that gluten is harming them. But the lack of symptoms does not mean that damage is not being done. There are people who have bad completely flattened villi with no or very few symptoms. For some the first they know that gluten is a problem is they develop diabetes, or rheumatoid arthritis or lymphoma, or colon cancer :unsure: So yes, if you test positive you can do yourself tremendous harm by continuing to eat gluten. But it is always the individual's decision whether he or she wishes to take that risk.
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Neroli


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

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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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#3 rosetapper23

 
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Posted 25 March 2011 - 05:59 PM

There are definitely many bad things that could happen, and once the damage is done, sometimes it can't be reversed...even with a gluten-free diet. I wasn't diagnosed until I was 47, and I still am unable to absorb Vitamin K and poorly absorb Vitamins D and B6 even though I take megadoses of both. Also, if I accidentally ingest gluten, I end up deficient in one or more nutrients, which causes my life to become a living Hell. For example, I had to receive iron intravenously for years (very inconvenient and time consuming), and last year both of my feet fractured from having "floppy tendon syndrome" from deficiencies in zinc, manganese, and silicon. Both of these conditions were caused by eating only a slight amount of gluten accidentally. From my reading, if neurological problems result from eating gluten, those conditions usually don't reverse themselves even on a gluten-free diet. Your husband would be taking a huge chance if he has celiac and chooses not to eaten gluten free.
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#4 etta694

 
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Posted 25 March 2011 - 07:04 PM

I have been doing as much reading as I can (because I'm trying to start a support group) and I found this article and remembered your post.

It underlines what has already been said and is very good reading...

http://www.celiac.co...ents/Page1.html
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Anemia and IBS through my life
2005 Joint pain, exhaustion, general feeling of not being well 2006 Beginning of testing for everything but Celiac 2008 Bloating, more muscle stiffness, feeling sicker, more exhausted-testing 'normal' 2010 March insides begin to shut down, cough that won't go away 2010 June Colonoscopy, Endoscopy, biopsy - all show no problems
Self diagnosed gluten intolerant - went gluten free. Within 3 days feeling better.
After 5 days - insides began to move
Now - feel better than I have felt for 15 years (except when I gluten myself.. which I'm good at)

#5 cassP

 
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Posted 25 March 2011 - 07:34 PM

Hi... this is an idiotic sounding post.
What is the worst that can happen if you have celiacs and don't go gluten-free.
I am new to the whole celiacs thing. I suspect that my husband, myself, and my 18 mo. old have celiacs. I know for her it means failure to thrive etc. Horrible stuff for her. For myself I will have no problem going gluten-free even if it's just to support my daughter and husband. My husband, on the other hand, not sure about...
He has decided to get a blood test but even if he gets a positive not sure he will be that strict. We don't have severe reactions like some people I've read about. Stomach troubles, rash, joint pain, trouble concentrating... stuff like that... So if he doesn't go strict at the age of 44 is it a big deal? I mean could he die from it or is it that he just wont ever feel that comfortable health wise??

there are so many things that can go wrong in your body if you continue to eat gluten, and they dont even ever have to manifest in your gut... speaking from my family's relationship to gluten-> you could lose your mind, or your thyroid, or develop heart disease, have miscarriages, or develop fertility issues.
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#6 ravenwoodglass

 
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Posted 26 March 2011 - 03:26 AM

From my reading, if neurological problems result from eating gluten, those conditions usually don't reverse themselves even on a gluten-free diet.


Stomach troubles, rash, joint pain, trouble concentrating are hardly asymptomatic. And the trouble concentrating is a sign of brain impact. Actually neuro issues can reverse, at least to some extent. It does take a very long time though. I went from not even being able to read or walk without falling, and having extreme memory issues and issues with mood and difficulty with speech to being almost totally normal. Walk without canes, can read and remember well enough to finally finish college with high honors and no problems with speech but it took literally years.
Your husband would be playing with fire not doing the diet or only doing it sporatically. Read some of the signatures of those who went a long time not diagnosed, including my own. The most dire result of course is an early death for a celiac associated cancer.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 a1956chill

 
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Posted 26 March 2011 - 04:05 AM

Hi... this is an idiotic sounding post.
What is the worst that can happen if you have celiacs and don't go gluten-free.
I am new to the whole celiacs thing. I suspect that my husband, myself, and my 18 mo. old have celiacs. I know for her it means failure to thrive etc. Horrible stuff for her. For myself I will have no problem going gluten-free even if it's just to support my daughter and husband. My husband, on the other hand, not sure about...
He has decided to get a blood test but even if he gets a positive not sure he will be that strict. We don't have severe reactions like some people I've read about. Stomach troubles, rash, joint pain, trouble concentrating... stuff like that... So if he doesn't go strict at the age of 44 is it a big deal? I mean could he die from it or is it that he just wont ever feel that comfortable health wise??


I am among those that the digestive symptoms are "manageable ? :blink: " the D and or C , upset stomach,abdominal pain, cramping,rashes (DH) were/are all so normal for me that I can "manage" them,,,,,( that in its self is a sad statement )
It is the neurological symptoms that have made my life a living H**L. The ringing in my ears,dizziness,mental confusion , brain fog,vertigo ,walking into walls, unable to walk with out falling down ,hand tremors ,and on and on... :(
Yes , he could die from it.
Malnutrition,Vitamin and mineral deficiencies, cancer ,gluten ataxia just to mention a few compilations.

I wish for you and your family much health and clear answers ( HUGS)
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#8 katiekay

 
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Posted 27 March 2011 - 05:25 AM

THANK YOU guys so much for your responses. WOW!!! I didn't realize all of that. I can't believe some of the additional symptoms that you guys mentioned that sound like me. I have been diagnosed with ADD a couple times and I think now it's celiacs... in addition struggle with depression and can't figure out why and depression medications never worked. It's always like a little fog of saddness.
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#9 katiekay

 
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Posted 27 March 2011 - 04:37 PM

I have been doing as much reading as I can (because I'm trying to start a support group) and I found this article and remembered your post.

It underlines what has already been said and is very good reading...

http://www.celiac.co...ents/Page1.html


Hi... I just wanted to say thank you so much for the article. It has made me realize that even if I get a negative blood test I am going gluten free. I was gluten-free for one week and didn't realize what a difference it was making for me. Now I feel awful... I really think I have celiacs. Stomach troubles, headache, itchy skin, and didn't think about this until just now but I am back to feeling soooo tired again. I think without your article I might even have decided to cheat every once in awhile. Thank you very much. I'm going to try and buy the book and video that is referenced also.
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#10 love2travel

 
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Posted 27 March 2011 - 05:20 PM

As a silent celiac the odd time I am tempted to just eat that such and such I am so badly craving BUT would never give in to that anyway because I know what goes on inside me. My husband and I leave in 5 weeks for Italy and Croatia and part of me thinks, "To heck with it. I'll probably have CC issues in Croatia anyway..." But my logical side says a big fat resounding "NO"! My dad died of bone cancer and my step dad has just been dealing with colon cancer so that is enough to scare me. I don't want to take any chances and could not bear the thought of leaving my precious husband and family behind.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#11 killernj13

 
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Posted 28 March 2011 - 06:47 AM

One word - CANCER
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#12 katiekay

 
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Posted 28 March 2011 - 07:17 AM

cancer... that did not sink in until you wrote it as one word... oiks... i wish there weren't so many false blood tests.
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