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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Much Does The Diet Really Help?
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14 posts in this topic

I am awaiting biopsy in 7 weeks but I have read some discouraging stuff the last few weeks since my blood results researching the condition.  I've seen anything from numerous people claiming the gluten-free diet actually made them diabetic to only 50% of people are healed after 5-10 years since cross contamination simply occurs way too often to get back to 100% capacity unless you literally lock yourself in your house for all your meals.  My only blood test which was positive was the IgA which was 20, the EMA and TtG were raging negative.  I have tried gluten free eating here the last 3-4 days, I plan on doing it for another 3-4 before going back on gluten before the biopsy.  Amazingly my gas and bloating are almost gone completely, still some discomfort but about 90% better overall.  However, I've developed horrible cold hands and feet, not sure if this a withdrawal symptom or my body revolting to getting less or different food than it is used to.  My weight has also dropped off 3 pounds in 4 days, largely because I have not been eating my snacking donuts 3 times a day which are 280 calories a piece, remarkable what a difference losing 840 calories a day can do. 

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Where are you getting those numbers?  And the gluten free diet is only as good as the work you put into it.  Keep eating that gluten utility your biopsy. Even if it is negative you can still give the diet an honest try for three months and judge for yourself the results.

 

Good luck,

 

Colleen 

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In answer to the topic question:

Lifesaving for those with Celiac Disease and some that are labeled Non Celiac Gluten Intolerant.

For all others removing gluten can be beneficial even if not medically required.

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Some have to be more gluten free than others.  I am one of those who has to be very gluten free.  Let me tell you that the problems associated with the diet are nothing compared to the improved health that has resulted from them.  Don't be discouraged.  The diagnosis was one of the best things that ever happened to me.

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As far as i understand it, if you are a celiac, you need to remove all gluten or you will not heal but perfect healing is not guaranteed. A non-celiac gluten intolerant person will also feel very badly if they eat gluten but is is yet unclear what damage (if any) is being done when they eat it... I would guess something is going on because otherwise why would they feel bad?

 

I think of celiac like a fall on the pavement, some people will lose more skin than others, some will heal faster and easier, some will have a scar even if they do eveything right, and some will pick at it (not follow the gluten-free diet 100%) and ensure that they will not heal without a mark.

 

Thankfully celiac is one of the only AI diseases (if there are others, I can't think of them) where you can basically cure yourself with just a diet change; the patient has total control. That is such a good thing!  Yes, it will take time to heal, possibly months or years, but an improvement is a almost a sure thing if you follow the diet.

 

I had my most reactive symptoms clear up quickly. It seems like if it was a sudden symptom, that I got frequently after eating gluten, then it was one of the first to go.  Joint pain and some of my more insidious symptoms took at least half a year to start improving... at first I felt like it took sooooo long but then I tried to look at it as the glass being half full...

 

I was diagnosed with Hashimoto's at the same time as celiac disease and the hashi's is no where near being as under control as the celiac disease. I have to take a pill every day to manage it, and go in for blood tests every 6 weeks. I can't adjust my medicine faster than every two months because it is so slow acting... I'm hoping that by the fall I'll finally feel better. Hopefully.  In the meantime, there is nothing I can do (unlike celiac) to stop my body's attack on my thyroid. It's probably going to continue to die off.

 

I also have ITP, where your white blood cells attack your platelets and kill them when it goes through your spleen. I can't stop that either. I had to have my spleen taken out.

 

Celiac is a pain in the butt but it isn't that bad in the long wrong. Once you embrace that way of eating, it becomes easier over time. The first few weeks are the hardest, especially if you experience a withdrawl. All you can do is go for it (in a few weeks) and then just sit back and wait to see what the gluten-free diet can do for you.  Best wishes.

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I'm wondering where you got that 50% figure or the diabetic thing? Never heard those claims myself.

 

All I know is I can ONLY eat a gluten-free diet. I react so strongly to wheat that any other diet is impossible, so for me and many others, there's no question that the diet is not only effective, it's essential to life. (I am apparently not celiac but NCGI and/or allergic to wheat). For true celiacs, it's even more so...

 

Please don't be discouraged, you're already seeing some of the benefits!!! And you'll get much much better at it, trust me. I can't believe some of the dumb stuff I did that made me sick the first weeks, like scraping chicken salad off the bread in a sandwich, thinking that would be okay! (Slaps forehead!!)

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I did read I study showing that Celiacs on a gluten-free diet often still have signs of damage after a time (but I think it was a pretty short period of time, and there was no way to say how strict these people were, so I think it's kind of bunk). I'll see if I can find the link.

 

You have to follow a 100% gluten free diet in order to heal. You can't not to that. However, some of us have to do more than just be gluten free. We may have other food intolerances or other conditions that cause problems. Even strictly gluten-free, some of us still struggle to feel better. However, a lot of celiacs heal up and are perfectly healthy as long as they remain gluten-free.

 

So, don't be discouraged by studies. Trust your gut. If you feel better already, then there's something to it. You'll have to keep eating gluten until your tests are done, and then (depending on the diagnosis, or your personal decision if its negative) go gluten-free and you'll find out for yourself what works and what doesn't.

 

Good luck!

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I've seen anything from numerous people claiming the gluten-free diet actually made them diabetic to only 50% of people are healed after 5-10 years since cross contamination simply occurs way too often to get back to 100% capacity unless you literally lock yourself in your house for all your meals.

 

 


Where are you getting those numbers?

 

That's a good question !  Because I've seen it elsewhere.

 

The part that I bolded, in the first quote, the (questionable) claim that only 50% of celiacs heal, can be found on this site, the University of Chicago Celiac Disease Center, FAQ page "Why do I need a cure when I can simply eat a gluten free diet."  

http://www.cureceliacdisease.org/archives/faq/why-do-i-need-a-cure-when-i-can-simply-eat-a-gluten-free-diet

 

 
"Fails to heal intestinal damage in more than half of cases"  

 

"The University of Chicago Celiac Disease Center was founded in 2001 by Dr. Stefano Guandalini, a world renowned pediatric gastroenterologist and celiac disease expert. "  http://www.cureceliacdisease.org/who-we-are/history   if you read down to the bottom it claims the Univ. Chicago Celiac Disease Center is completely funded by donations.  It is not the same thing as the Univ of Chicago Hospital itself, which is why they think they can get away with making statements like this.  I would love to see the data and studies ?    This Guandalini is the doctor who wrote the current diagnostic criteria for celiac disease.  

 

According to their "who we are" Fund Allocation page, the Univ. Chi Celiac Disease Center claims to be a 501©(3) organization within the Univ of Chicago. They also claim to be working to establish a $2 million endowment for themselves.  That would make them at least partially non profit, and their donors may be tax- exempt, (see wiki here on the definition of a 501©(3)  http://en.wikipedia.org/wiki/501©_organization ) but they would have to be filing IRS forms for the public records.  I cannot find them listed on this, yet, it doesn't mean that it is not there, but the public sourced charity website searches for IRS filings are not listing a University of Chicago Celiac Disease Center and their IRS filing.  Per wiki, a private foundation receives most of its income from investments and endowments.  This income is used to make grants to other organizations....  defined as 501©(3) organizations, which do NOT qualify as public charities.  

 

 

You may wonder why I just put that information up there -  when one is seeing incredulous statements coming from well known public figures, especially in the celiac medical research field, at the same time there is an ongoing public media campaign by certain agricultural lobbies to maintain funding for grain subsidies and GMO research, and there could be new labeling rules coming this year, which impact food manufacturer's,   it is a good idea to check the source of the funding.  Which is not obvious at all, here. 

 

 

This UCCD Center website has been changed a bit since the last time I looked at it, so they are becoming aware of people scrutinizing it. 

 

________

 

To the Original Poster -  "the diet" really helps, but at times it causes people to say really strange things on the internet.  :blink:  <_<  :ph34r:

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"Acute food poisoning can occur after gluten exposure"? What does that even mean?.....

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I my opinion.  If you are going to have an AI disease Celiac is the one to have because the fix is gluten free diet.  It is a pain to go out to eat, or go to a party, to me this is the most difficult part of Celiac.  For help there is an App called "Is that Gluten Free?"  I bought the grocery store version and they have information on hundreds of products.

 

Trust me this lifesyle is not easy, but I'd rather see the positive rather than the negative.  I do have my pity parties but life could be much worse.

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"Acute food poisoning can occur after gluten exposure"? What does that even mean?.....  

 

I could speculate, but........ I am not a licensed medical professional, medical researcher, nor a public relations spokesperson.    Acute food poisoning can occur after non gluten exposure, too ! 

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Well, the words 'food poisoning' are accepted as referring to food-borne illness. So

are they saying that a glutening makes you more susceptible to food-borne illness?

So confused.....

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That's a good question !  Because I've seen it elsewhere.

 

The part that I bolded, in the first quote, the (questionable) claim that only 50% of celiacs heal, can be found on this site, the University of Chicago Celiac Disease Center, FAQ page "Why do I need a cure when I can simply eat a gluten free diet."  

http://www.cureceliacdisease.org/archives/faq/why-do-i-need-a-cure-when-i-can-simply-eat-a-gluten-free-diet

 

I've tried to find what % of knowing celiacs follow the diet.  The only stat I could find was one site that stated anywhetre from 50-70%, not sure if anyone else here as seen numbers on that.

 

I my opinion.  If you are going to have an AI disease Celiac is the one to have because the fix is gluten free diet.  It is a pain to go out to eat, or go to a party, to me this is the most difficult part of Celiac.  For help there is an App called "Is that Gluten Free?"  I bought the grocery store version and they have information on hundreds of products.

 

Trust me this lifesyle is not easy, but I'd rather see the positive rather than the negative.  I do have my pity parties but life could be much worse.

 

When I first got the diagnosis I certainly said some dumb stuff and said I'd rather have a few other conditions than this.  I know people with Crohn's and UC and its a wide range of impact on life, some are suffering way worse than any celiac and others much less, they may be at a much greater risk of other conditions developing which they have zero control over unlike someone with celiac who controls their own destiny to a big extent but their quality of life with a mild case of Crohn's or UC may be impacted less.  I think the biggest fix can be if they can manage to get a drug out there allowing for a reasonable degree of CC, if we can at least get something where the pizza guy can make your pie on the same surface he just made the regular pie on it would probably be the best day of some people's lives on this forum.  I know I'd take modest side effects if it meant I could order off any gluten-free menu and not worry what utensils may have touched the food.  If I get a biopsy confirmation this is indeed celiac I know there are going to be plenty of days down the road it takes every ounce of will I have left in me not to cheat, particularly when I'm traveling which I unfortunately do alot. 

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That's a good question !  Because I've seen it elsewhere.

 

 

"The University of Chicago Celiac Disease Center was founded in 2001 by Dr. Stefano Guandalini, a world renowned pediatric gastroenterologist and celiac disease expert. "  http://www.cureceliacdisease.org/who-we-are/history   if you read down to the bottom it claims the Univ. Chicago Celiac Disease Center is completely funded by donations.  It is not the same thing as the Univ of Chicago Hospital itself, which is why they think they can get away with making statements like this.  I would love to see the data and studies ?    This Guandalini is the doctor who wrote the current diagnostic criteria for celiac disease.  

 

According to their "who we are" Fund Allocation page, the Univ. Chi Celiac Disease Center claims to be a 501©(3) organization within the Univ of Chicago. They also claim to be working to establish a $2 million endowment for themselves.  That would make them at least partially non profit, and their donors may be tax- exempt, (see wiki here on the definition of a 501©(3)  http://en.wikipedia.org/wiki/501©_organization ) but they would have to be filing IRS forms for the public records.  I cannot find them listed on this, yet, it doesn't mean that it is not there, but the public sourced charity website searches for IRS filings are not listing a University of Chicago Celiac Disease Center and their IRS filing.  Per wiki, a private foundation receives most of its income from investments and endowments.  This income is used to make grants to other organizations....  defined as 501©(3) organizations, which do NOT qualify as public charities.  

 

 

You may wonder why I just put that information up there -  when one is seeing incredulous statements coming from well known public figures, especially in the celiac medical research field, at the same time there is an ongoing public media campaign by certain agricultural lobbies to maintain funding for grain subsidies and GMO research, and there could be new labeling rules coming this year, which impact food manufacturer's,   it is a good idea to check the source of the funding.  Which is not obvious at all, here. 

 

 

This UCCD Center website has been changed a bit since the last time I looked at it, so they are becoming aware of people scrutinizing it. 

 

________

:

This has nothing to do with the original question but I'm going to respond. I don't know a lot about the tax laws, but I believe endowments are allowed. It would be silly for a charity not to have " savings " for a capital improvement or to tide it over when donations are low. Or to fund research or perhaps, scholarships.

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