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Is Cd Forever?


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5 replies to this topic

#1 nicolespeanut

 
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Posted 26 March 2004 - 07:10 AM

New to all of this and I am wondering if anyone out there feels that our bodies will eventually heal and gluten can once again be tolerated. Please don't laugh if this is an obvious no but I am very curious to know if there are ways to heal the body and stop the response of gluten as an invader. I hear about success with other allergies and wonder what others think. I am currently taking aloe supplements which claim to heal the inside. I guess I am looking for any rays of hope that I won't have to think about food like I have been this last year.
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#2 seeking_wholeness

 
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Posted 26 March 2004 - 09:38 AM

Nicole,

I totally understand your question. It's a reasonable one to ask, too, since you are right that many sensitivities can be "cured." So, the answer to your question is, YES and NO. YES, our bodies will eventually heal the damage gluten has wrought, but NO, we will never be able to eat gluten again without re-inflicting the same damage on ourselves, because we carry a gene that causes our bodies to make antibodies to gluten no matter how little we eat of it.

Many other (non-genetic) food sensitivities are triggered by what is known as a "leaky gut," which allows undigested proteins to pass into the bloodstream. Our bodies then treat them like foreign invaders and produce antibodies against them. celiac disease is NOT a result of this process; rather, it is often a CAUSE of it. celiac disease can cause enough damage to allow the gut to "leak," which is why so many of us have secondary food sensitivities. After our guts heal, those sensitivities should clear up. (Aloe is beneficial in the treatment of leaky gut, at least for some individuals, but neither it nor any other remedy can address the presence of the gene we celiacs carry, unfortunately! :( )

I'm sorry to have to be the bearer of bad tidings, but gluten-free for life is the only way to maximize our chances of remaining in good health! We all have our grieving "phases" where we wish it could just all go away and we could go out to social gatherings without obsessing about the food or bringing our own along. (Like right now, in fact; I just responded to an invitation to my high-school reunion and requested that I be sent a copy of any menu they plan as soon as it is determined, so I can bring along food that is similar--especially for my kids, so they're not tempted to eat gluten. <sigh>) Grief is natural, and it comes in cycles. When I start feeling resentful, though, I deliberately recall how it felt to be constantly depressed, fatigued, and fuzzy-headed. Then I realize that there are worse fates than the gluten-free diet!

Good luck--I hope your grieving period is short!
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Sarah
gluten-free since November 1, 2003

#3 nicolespeanut

 
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Posted 26 March 2004 - 10:20 AM

Thanks Sarah,
I have not gone gluten-free yet. I am really having trouble getting on the wagon as my doctors think no(allergist, gastro, primary care), my husband thinks no(thinks it is too stressful and no reason), enterolab says absolutely (both gene and gluten/casein sensitivity) and I have an autoimmune disease and thyroid disease both of which can be a result of it. I also suffer from brain fuzzy, stomach aches, skin blisters and the big D though this has been better with the addition of enzymes to my diet. All these things scream at me and yet if only I had some support on the home front. I worry about my kids too and am thinking about ordering a gene test for them. Funny I am going through this phase before I go gluten-free which I really think I am gearing up to. I am scared to get any other diseases. I am slowly integrating gluten free substitutes allowing me to feel good about my choices. The couple of times I have tried going gluten-free I have been stressed and low energy as I was overwhelmed with little time and energy to dedicate to figuring it all out. Brain fog. That is the gluten talking I think.

Thanks for you help.
Nicole
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#4 tarnalberry

 
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Posted 26 March 2004 - 11:10 AM

have you had the "skin blisters" biopsied to find out if it's DH? that'd be an easy, definitive diagnosis...
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#5 nicolespeanut

 
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Posted 26 March 2004 - 11:43 AM

The biopsy of the blisters showed Linear IgA bullous dermatosis. I thought it would be DH but nope (Derm thought it pemphigus so I am lucky). I guess before immunoflourescence, they thought both were the same disease. IgA is deposited differently on the basement membrane zone in the diseases, granular in DH and linear in LAD. Supposedly some with LAD respond to a gluten-free diet but it is such a rare disease, drs don't know much about it. They prefer to medicate to suppress the blisters instead of figure the problem. At least with DH, the cause is clear -- not that this helps sufferers in the least. It is just weird to me that the diseases are so strikingly similar yet with LAD they do not think it is diet related (though there are two reports of remission on gluten-free diet). It is also a disease that can be drug induced and once the offending drug is removed, the disease clears up. Children get the disease and it is known as Chronic Bullous Disease of childhood. Go figure.
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#6 wildones

 
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Posted 28 March 2004 - 09:50 PM

Yes celiac disease is a lifetime thing, and eating gluten free is the only way-FOR NOW- to prevent further damage. There are several groups of medical reasearchers working on treating celiac disease. They are working on several different areas. One of the GI drs doing research is from Oxford University and is a friend of a woman I know, who does medical research at Oxford.
Celiac diagnosis is MUCH more common in Europe, because they are much more knowledgable about it. Everyone in Italy is tested for it, because it is very common among Italians.
Strict adherance to the gluten free diet is very important, but may not be the only 'cure' in the future. I personally have NO desire for any gluten containig foods anymore, because of how terrible they make me feel. The problem that I am still struggling with is the hugely increased planning time, and lack of freedom for our family to just 'go get something to eat'.
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