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seattlecdfriend

Going Back To Gluten?

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Has anyone out there gone gluten-free long enough to be fully recovered from it and then gone back in a limited fashion and been ok? :huh: I know this goes against nearly everything- well actually everything I have read, but there is a Dr. here in Seattle who has made the statement that no one actually knows whether you could have gluten in minimal amounts. The way to do that would be with regular testing and monitoring...He also has talked about the how differently celiac disease can present in different people and possibly not everyone needs to go totally gluten-free lifetime.

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I suppose it's plausible. But I'm biopsy diagnosed and my gastro said they have a "zero" tolerance policy for gluten (she's even wary of the gluten-free oats???) so until I hear from her I can't have any gluten ever again...


Amanda

Positive TTG 9/05

Positive endoscopy 9/05

Doing well with "Sprue"

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For a person with celiac, no gluten should be consumed because even tiny amounts cause problems.

However, for a person with gluten intolerance and NOT celiac, I have heard of people that are able to get their digestive systems healed up enough to eventually have small amounts of the foods that they used to be intolerant to. This may include gluten. I think it has to do with the idea of having a "leaky gut" caused by an imbalance of good vs. bad bacteria in the digestive system, the use of NSAIDS (like Advil, etc.), and other things. The leaky gut leaves holes where undigested food can "leak" out and the body starts attacking it causing inflammation, pain, and other problems.

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I'm sure if one searches or inquires long enough they will find just about any situation possible concerning the reaction different people have with gluten. If what you are ultimately asking is whether "anyone" has outgrown or been "cured" of Celiac Disease or gluten intolerance then I have yet to see or hear of this happening. Everyday I am sure all over the world people are constantly going on and off the gluten-free diet just to see what happens. If a person had severe enough symptoms and went on the diet and "fully" recovered then in my opinion they would be an "glutton" for punishment to start testing themselves again just to see what would happen. However we are all different and thus nothing should surprise me. Good luck in your quest. In case you were wondering no I have not intentionally tried gluten after I recovered. I am content to leave well enough alone.

Tom

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Many people have different tolerances when it comes to ingesting gluten. I think it is better to avoid it completely than to chance things. It is just not worth getting sick!!

Also, even if some people can eat small amounts with no immediate physical reactions....they may be causing some long term damage.

Best of luck!!


Dx and Gluten Free since 1996

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Everyone's different. You can severe symptoms initially and then heal, go back on gluten and feel nothing. Everyone is so different. This happened to my friends daughter. She was biopsy proven. Now, the symptoms are back a few years later.

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I suppose it's plausible. But I'm biopsy diagnosed and my gastro said they have a "zero" tolerance policy for gluten (she's even wary of the gluten-free oats???) so until I hear from her I can't have any gluten ever again...

AmnadaD. I ahve heard the same thing about oats as they can be contaminated at the "factory".

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I suppose anything is possible, but I got so sick eating gluten and it took me such a long time to get better I would NEVER do it again.


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

36_35_6[1].gif

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I suppose anything is possible, but I got so sick eating gluten and it took me such a long time to get better I would NEVER do it again.

After reading some other posts, I am now wondering if POSSIBLY my friend could have been misdiagnosed back in 99 as having celiac disease and possibly she is only gluten intolerant...she was gluten-free for a year and stopped after that. The year had to help and her symptoms really did drastically drop off after that and were nearly silent for the next 6 years.. mystery, mystery..

thanks to all!

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A friend of mine was diagnosed celiac as a child... had all the classic symptoms... but she had been terrible with the diet for most of her young adult life and it wasnt really affecting her - however now in her late twenties she has just had to have

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As far as I can figure, celiac disease is what happens when you have gluten intolerance and continue to eat gluten.

It's looking more and more likely that the same can be said of MS, fibromyalgia, lupus, rheumatoid arthritis, autoimmune thyroid disease, and probably others as well.

I know people with those conditions. There is no way any of those are worth consuming a small amount of gluten, at least, not to me.

I'm perfectly happy being gluten-free. I can make any of the formerly gluten-laden foods I want by substituting other flours. They taste good (wich I could say the same for the premade versions at the store), and I'm probably eating much healthier than I did before.

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I have never been a person who reacted violently. So after my diagnosis in Jan. of 06, I went pretty seriously gluten free from then until October, with only a slip-up here and there. We went to Hawaii in October, so the cheating really started there. First, I split pancakes with my husband. That became a daily thing. Then some bread at dinner. Then other stuff. And I wasn't getting any major reactions, so I thought, GREAT...

I never went hog wild, but bit by bit, stuff started happening and I was getting noticeably ill again, and by last month I realized I had to get back into the 100% gluten free mode.

I've read that to an extent, your body (some people, not all) can sort of "adapt" to the stress of eating gluten until you reach a kind of "overload" state. I almost think people who get immediate and undeniable reactions might be luckier than people like me, who can get to feeling better gluten free, develop gluten illness amnesia, and be tempted to be less strict as a result.

I'm at a point right now where I'm accepting that I have to be strict and stay that way...I hope I can stay with this mind set. <_<


CAROLE

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

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Guest cassidy

I was never diagnosed so I don't know if I have gluten intolerance or celiac, but I know I can't have gluten. I have never voluntarily gone back on it, however, being accidently glutened has been enough proof for me that I can't have it.

I don't know what type of problem your friend has but gluten intolerance doesn't just go away. I know that I am much more sensitive than many biopsy-diagnosed celiacs who can eat in restaurants and don't worry about if things are produced in the same facility as gluten.

I have been sick since birth but there were times when I felt better and when I felt worse. I would wonder if someone tried eating it again and seemed fine, it that was just a stage they were going through where they didn't have many symptoms. I feel totally crappy when I'm glutened now and I know I didn't feel that bad every single day before I went gluten-free.

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I have never been a person who reacted violently. So after my diagnosis in Jan. of 06, I went pretty seriously gluten free from then until October, with only a slip-up here and there. We went to Hawaii in October, so the cheating really started there. First, I split pancakes with my husband. That became a daily thing. Then some bread at dinner. Then other stuff. And I wasn't getting any major reactions, so I thought, GREAT...

I never went hog wild, but bit by bit, stuff started happening and I was getting noticeably ill again, and by last month I realized I had to get back into the 100% gluten free mode.

I've read that to an extent, your body (some people, not all) can sort of "adapt" to the stress of eating gluten until you reach a kind of "overload" state. I almost think people who get immediate and undeniable reactions might be luckier than people like me, who can get to feeling better gluten free, develop gluten illness amnesia, and be tempted to be less strict as a result.

I'm at a point right now where I'm accepting that I have to be strict and stay that way...I hope I can stay with this mind set. <_<

I know all about this, once I felt real good I started doing things, like an occasional Olive Garden meal or Cheesburger. At first nothing happened so I thought everything was ok, and it became more frequent that I did these little slips, soon I was starting to feel worse again.

So now I am no longer doing those slip-ups, it is not worth it.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

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I will never go back to eating gluten.I got accidently glutened recently and I had 2 days of D. and terrible stomach pain. Horrible.


Diagnosed 11-11-05 after 3 months of major symptoms, including 2 hospitalizations and 7 ER visits for dehydration and syncope. Otherwise, I had all "normal" blood tests and major scans. During those 3 months, lost 20 pounds, all my muscle tone, and ultimately could not walk for 2 days. Spent 6 days during the second hospitalization hooked up to IV and STILL passing out IN BED due to malnutrition with doctors staring at me AS IF it was all IN MY HEAD

Other related symptoms:

Osteopenia

Hypothyroidism

Gluten Ataxia - three "nodes" recently found in my brain (thought I had MS)

Muscle weakness

Fatigue

Chronic Constipation

45 pound weight gain since going gluten-free!

gluten-free since 11-11-05. Cannot eat bananas, potatoes, or spinach. Recently reintroduced yogurt into my diet and able to tolerate plain yogurt with sugar.

HATE the diet but psychologically tolerating it for my health.

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Love your name, sillyyak! Sorry to get off topic, just had to comment! :lol:


Dx'd with lymphocytic colitis 1/07

Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8

Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy

gluten-free 3/7/07

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Thank you everyone for all your replies. As a celiac disease friend, I am not in the "decision maker" in my friends journey, yet suffer with her. She (we) attended a support group mtg last night- she stopped in 2001- facilitated by a Dr. and it appeared to begin to push her toward going gluten-free again. One thing we learned is that wheat free does not mean gluten free but gluten-free does mean wheat free. Knowledge is good!

Thanks again and blessings to all!

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I am "only" gluten intolerant and have been gluten-free for a little over a year. Recently as part of the supplements my Lyme doc has me taking, I started taking one that had barley in it. Barley was about the 20th ingredient on the list and since I'm NOT celiac (don't have the genes), I thought I'd go ahead and try it as I had never tested to see if all gluten bothers me or just wheat (I was positive with Enterolab for gluten intolerance).

It took about a week and half, but I definately started to feel the effects of glutening. I stopped taking that particular supplement. This was a lot less gluten than an occassional cheeseburger would provide!!

I think that if a celiac goes back on gluten, it's only a matter of time before they start getting sick again. As for the gluten intolerant, well, right now I can't eat it .... we'll see what happens when my Lyme is better -- the only time I've ever had digestive symptoms is when I'm having a Lyme flare-up, so the two might be related for me. I have two daughters though who also don't eat gluten by their own choice because they feel so bad when they do.

Considering how little research is done on celiac, there is even less done on gluten intolerance, so right now we just don't know and they're being treated as the same thing in general.

If your friend had a positive biopsy or even blood test, she wasn't misdiagnosed. Both of mine were negative.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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