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Is Cd Forever?
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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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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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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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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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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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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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    • How effective is HD skin biopsy after being gluten free for a year
      DH is celiac disease that appears on the skin (gluten triggered).  It does not appear when you are consuming dairy, which sounds like a separate issue for you.   A DH biopsy requires active lesions (new/fresh) from consuming gluten.  So, if you want to be tested via a skin biopsy you must go back on gluten.  Finding a dermatologist who knows exactly how to biopsy for DH is often difficult.  Be sure your Derm is knowledable and has biopsied for DH before. Why no endoscopy for now?  I bet your GI  knows that your insurance will deny the endoscopy.  After all, you tested negative to the blood panel.  Your GI should not even ordered the blood panel knowing that you had been gluten free for months.  You have to be consuming gluten daily for 8 to 12 weeks for the blood test to be accurate.   Did you ever test positive?  Why did your primary diagnose you?  Having the gene just means you can develop celiac disease.  Some 30% of the population carries the genes.  The gene test should only be used to help rule out celiac disease.  
    • How effective is HD skin biopsy after being gluten free for a year
      No one can say exactly how long you might be able to get a positive dh biopsy after having been gluten free as long as you have been. The Chicago Celiac Disease Center says this: http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/ http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ You said you had a flare of the plaque psoriasis -- that is NOT dh so why do you think the dh biopsy will show positive? Testing positive for the celiac genes does not mean you have celiac disease. 30+% of the population have the celiac genes but only very, very small fraction of those people do or will present with celiac disease. The gene tests are only used to rule OUT celiac NOT to diagnose it. Frankly, I can understand why your GI does not put any stock in your Primary doc's thinking you have celiac disease. A positive celiac gene and the boils in your armpits which the GI never saw and were never biopsied for dh but they resolved on a gluten free diet and so did your plaque psoriasis. That's all the GI has to go on. I don't know why you are pushing an endoscopy. If you've been eating strictly gluten free then an endoscopic biopsy for celiac will be negative.  Your PCP should have done a celiac blood panel on you back when you were still eating gluten rather than dx you based on the celiac gene you tested positive for.
    • How effective is HD skin biopsy after being gluten free for a year
      I've been gluten free for a year now and my gastro wants to wait for the endocopy until I'm eligible for the colonoscopy when I turn 50 later this year. I don't think she believes I have celiac, even though I tested positive for one of the genes associated with celiac and my primary has diagnosed me as having celiac. The gluten sensitivity blood tests came back negative, of course, since I was gluten free for 9 months at that time. Why is she waiting? At any rate, My digestive system has improved greatly, but when I reintroduced non fat Greek yogurt in my diet, the plaques psoriasis returned on my elbows. My primary believes it is dermatitis herpetiformis (as well as I, since before going gluten free, I used to get boils in my armpits) and I'm scheduled for a skin biopsy in 3 weeks. However, I eliminated dairy from my diet 4 weeks ago and the plaques psoriasis is healing like it did when I eliminated gluten from my diet a year ago. If the scar is reduced to eczema, does that mean there still are IGA deposits in my skin? I don't want to resume dairy since I experienced a cross reaction to the casein in cheese and found lactose was on that same list. So my question is, how long do the granular IGA deposits remain in the skin in order to have a valid skin biopsy test performed for dermatitis herpetiformis? Since it takes 1-2 years for dermatitis herpetiformis to heal on a gluten free diet and I just had a recent flare up, can I continue on my dairy free diet or should I resume eating non fat Greek yogurt for the next 3 weeks just for this skin biopsy?
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      Thanks Cristiana. It was Mistyx7 and night driving. Migraine type is very personal but does not appear to be closely connected to celiac or my peculiar scotomas. If you think going gluten-free has improved it that deserves a separate topic!
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      The last post was from 2011.   if you can eat a regular pizza crust with no issue, then gluten isn't your problem.  You might want to look for something else.  The amount of gluten in a beer or fryer cc is very very small compared to eating a pizza crust.   I am assuming you do not have Celiac disease.
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