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cbdh19

Will Going Temporarily Back On Gluten "ruin" All Progress?

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I've been gluten free for 10 months. I chose to go gluten free because: 

 

a) I read some reputable articles that indicate a correlation between gluten consumption and depression and anxiety, and I was battling depression and GAD last year.

 

B) I've had lifelong IBS, however I do not have Celiac and have never been diagnosed with gluten intolerance.

 

I do feel better overall after having gone gluten free: Especially a lot less hazy and I have more in-the-moment awareness and alertness after having given up gluten; however, I still suffer from IBS. 

 

That's my background. Here are two questions I was hoping someone could help em with

 

I've read that it can take six months, a year, or more for the body to eliminate its anti-body reaction to gluten. 

 

1) Is this true -- that it takes months or even years for the body to clear itself of gluten and gluten's effects?

 

2) If I eat a small amount of gluten across a period of 2-3 weeks -- I am traveling to a foreign country and visiting with people where it would be very awkward/impolite not to eat gluten in certain social situations I will be in -- will I lose all of the progress I've made from being gluten free for the past 10 months and start from square 1, so to speak? Will 10 months of being gluten free go to waste?

 

 

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I've been gluten free for 10 months. I chose to go gluten free because: 

 

a) I read some reputable articles that indicate a correlation between gluten consumption and depression and anxiety, and I was battling depression and GAD last year.

 

B) I've had lifelong IBS, however I do not have Celiac and have never been diagnosed with gluten intolerance.

 

I do feel better overall after having gone gluten free: Especially a lot less hazy and I have more in-the-moment awareness and alertness after having given up gluten; however, I still suffer from IBS. 

 

That's my background. Here are two questions I was hoping someone could help em with

 

I've read that it can take six months, a year, or more for the body to eliminate its anti-body reaction to gluten. 

 

1) Is this true -- that it takes months or even years for the body to clear itself of gluten and gluten's effects?

 

2) If I eat a small amount of gluten across a period of 2-3 weeks -- I am traveling to a foreign country and visiting with people where it would be very awkward/impolite not to eat gluten in certain social situations I will be in -- will I lose all of the progress I've made from being gluten free for the past 10 months and start from square 1, so to speak? Will 10 months of being gluten free go to waste?

 

If you are positive you do not have Celiac, with negative tests for Celiac, then you are not making antibodies to gluten.

 

 

For a person with Celiac, who is makes antibodies when they eat gluten, is is never a good idea and will set that person back.


 

 

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It does not take years for the body to clear itself of gluten. For someone with celiac, after going gluten free it may take many months for the antibody levels to decrease and even longer for severe damage to heal.

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Were you actually tested for celiac disease? Were you diagnosed with IBS?

If you were to have celiac disease or Non-Celiac Gluten Intolerance, then going back on gluten even for a few weeks (to please others) would make you very ill.

Perhaps, you have an intolerance to other foods like dairy or soy?


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

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Were you actually tested for celiac disease? Were you diagnosed with IBS?

If you were to have celiac disease or Non-Celiac Gluten Intolerance, then going back on gluten even for a few weeks (to please others) would make you very ill.

Perhaps, you have an intolerance to other foods like dairy or soy?

1) No, I have not been diagnosed with celiac.

 

2) Yes, I have been diagnosed with IBS, almost 30 years ago, and really haven't found a solution to it, other than loperamide. Being gluten free for 10 months has also seemed to help a bit, but not overly so.

 

3) I don't think I have an intolerance to dairy or soy. When I started gluten free in Aug. 2014, I also went dairy free for 8-weeks. Being dairy free didn't seem to positively impact my IBS. Maybe I should have gone longer dairy free. But gluten free + dairy free + mostly vegetarian (I eat fish, and occasionally turkey/chicken) was too much for me.

 

I really do feel being gluten free has had a positive impact on my clarity of thinking/being, though. But I cannot prove this, and my experience is only anecdotal.

 

I was wondering:

 

1) What if I occasionally consumed gluten, for instance, once a week I had a beer or two -- would this be "dumb"? Does one have to be 100% gluten free constantly, with no moves back to gluten, in order for gluten and its negative effects on the body to be eliminated?

 

And, to rephrase my other question:

 

2) Does the amount of gluten consumed, and the amount of time you consume gluten, affect the length of time it takes for the body to rid itself of gluten's potentially negative consequences? Long time on gluten + more gluten consumed = longer recovery time vs. short time on gluten, less gluten consumed = shorter recover time?

 

--> Examples: I ate a lot of gluten for 47 years, then i went gluten free for 10 months, and I feel better. If I eat a moderate to small amount of gluten for 3 weeks after being gluten free for 10 months, will it still take 10 months for recovery, or will it likely take less time because I was only on gluten for a short amount of time and ate much less of it than I did across the first 47 years of my life? 

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Have you been tested for celiac? 

How gluten free are you? Are you avoiding cross contamination and eating from gluten free menus when you eat out or are you just ordering stuff that seems to be gluten free by description? If you are consuming beer a couple times a week you are not gluten free. If you are not avoiding cross contamination you are likely getting glutened and thus not completely gluten free. There are many precautions that we have to take to be gluten free that don't involve just the food we consume but also the preperation of that food.

If you are celiac or NCGS and not taking the needed precautions that would explain why your 'IBS' has not resolved.

You should, IMHO, go back to eating gluten for a bit and then get a full celiac panel done.  


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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I don't have much to add about your main question beyond what others have already said - if you were actually tested for celiac with the proper tests and it was firmly ruled out, that's very different than being told you don't have celiac by a doctor who never did proper testing. Many doctors are shockingly ignorant about what tests even to order, and there's currently no test for non-celiac gluten intolerance. People's reactions vary so widely that it's impossible to predict what your reaction might be to going back on gluten.

Regardless of diagnosis, I would strongly urge you NOT to try reintroducing gluten on a trip to a foreign country!!! If you react badly, it would be an absolutely miserable trip. If you plan to try it, do so at home beforehand, with plenty of time to recover in case you get really sick. And only try a tiny bit at a time, waiting several days in between to make sure you don't have a delayed reaction.

After being strictly gluten free for a while, I once took the croutons off a salad and ate the salad. I would never have done this if I had a clear celiac diagnosis, but at the time my doctors thought I probably didn't have it, and people all around me were giving me grief about "unnecessarily" following the same strict gluten-free diet as my daughter, who has biopsy-diagnosed celiac. So I ate the salad....and thought I'd gotten away with it for about 16 hours. Then the diarrhea, nausea, foggy brain, and coordination problems came back full force, and my rash started coming back a few days later. It was like I had the flu for about two weeks. And I hadn't even eaten a crouton, just lettuce that had touched gluten. Since then my doctors have concluded (for other reasons) that my celiac tests were very likely false negatives - but the point is that at the time, it seemed reasonable to think I might not have to be so careful about cross-contamination. I shudder to think how awful it would have been to actually eat a bite of gluten, much less on a trip abroad! Hopefully you won't have that reaction...but it's worth trying it out slowly at home just in case.


Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 

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1) No, I have not been diagnosed with celiac.

 

2) Yes, I have been diagnosed with IBS, almost 30 years ago, and really haven't found a solution to it, other than loperamide. Being gluten free for 10 months has also seemed to help a bit, but not overly so.

 

3) I don't think I have an intolerance to dairy or soy. When I started gluten free in Aug. 2014, I also went dairy free for 8-weeks. Being dairy free didn't seem to positively impact my IBS. Maybe I should have gone longer dairy free. But gluten free + dairy free + mostly vegetarian (I eat fish, and occasionally turkey/chicken) was too much for me.

 

I really do feel being gluten free has had a positive impact on my clarity of thinking/being, though. But I cannot prove this, and my experience is only anecdotal.

 

I was wondering:

 

1) What if I occasionally consumed gluten, for instance, once a week I had a beer or two -- would this be "dumb"? Does one have to be 100% gluten free constantly, with no moves back to gluten, in order for gluten and its negative effects on the body to be eliminated?

 

And, to rephrase my other question:

 

2) Does the amount of gluten consumed, and the amount of time you consume gluten, affect the length of time it takes for the body to rid itself of gluten's potentially negative consequences? Long time on gluten + more gluten consumed = longer recovery time vs. short time on gluten, less gluten consumed = shorter recover time?

 

--> Examples: I ate a lot of gluten for 47 years, then i went gluten free for 10 months, and I feel better. If I eat a moderate to small amount of gluten for 3 weeks after being gluten free for 10 months, will it still take 10 months for recovery, or will it likely take less time because I was only on gluten for a short amount of time and ate much less of it than I did across the first 47 years of my life? 

 

There is no real data or scientific info on someone who is not Celiac at  this time.  You will just need to experiment and see if it makes any difference if you eat gluten or not.  Like I said before, a person who does not have Celiac  is not making antibodies that damage them.  

 

Or you could do a gluten challenge and get tested for Celiac.  Then you would know how careful you needed to be. 


 

 

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Changing the subject from celiac disease, maybe you should research A FODMAP diet that has been very helpful in treating IBS. It is not about gluten, but sugars that also happen to be in wheat, veggies, and other foods. Here is a link:

http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

It may help you depression symptoms as well. Sounds like just going gluten free is not really resolving your symptoms. If you really thing gluten is impacting you, then talk to your doctor about a gluten challenge to really rule out celiac disease.

Good luck to you.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Thank you all very much for your helpful and detailed responses. A few more questions/observations on my part:

 

1) I am only reading food labels, etc. in avoiding gluten, and have not been vigilant in terms of "cross-contamination", etc.

 

2) Although I have never officially been tested, my sister recently got tested for celiac/gluten intolerance, and her test results came back negative. 

 

3) I am aware of FODMAPS for IBS but it seems too complicated and overwhelming to follow -- a very long list of can't eat foods and you can't eat this food, that food, this other food, and the foods cross food groups, etc. Not like dairy free, gluten free -- which are simple (at least on the surface), either you eat dairy, or you don't, either you eat gluten or you don't.

 

4) I am not drinking a couple of beers a week. Not drinking any beer. My basic question --> Is being gluten-free an either-or proposition: Either you ARE gluten free, or you are NOT? Or is there some point to doing gluten moderately, or almost not all, but a tiny, weeny bit, maybe one beer a week and no other gluten -- or is this pointless?

 

Thank you :-)

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It is either 100% (including cross contamination) or nothing. Simply a reduction in gluten is not beneficial for someone with celiac disease or NCGI. celiac disease is an autoimmune response triggered of all things, gluten! A tiny spec can set off an autoimmune flare-up that can last for weeks. It is the only Autoimmune disorder that is triggered by a specific food.

1) so, you have not really been gluten free? Just watching labels and not worrying about cross contamination is not enough for a celiac.

2) celiac disease or NCGI does run in families. I have an Aunt and cousin who have celiac disease but so far, no one else has been diagnosed yet!

3) if you think FODMAPS is too complicated, a truly gluten-free diet for a celiac is probably too complicated too. Intestinal damage tends to create problems beyond just a gluten intolerance. Most tend to react to common intolerances like soy, dairy, corn, eggs, nuts, because the enzymes need to digest are no longer there due to damaged villi. Chemicals and additives can be an issue. Many of these intolerances resolve on a gluten-free diet, some never do.

4) it is all or nothing......no beer EVER unless it is gluten-free!

I suggest you do some more research about celiac disease. It is clear that you need further education! I am not trying to be mean, but if you are going to self-diagnose yourself, you had better become knowledgeable.

I did not ask, but have you tried any depression therapies (meds, counseling, etc.)? Even those with celiac disease can often get help for their depression beyond dietary changes.

I wish you well.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I think there are a lot of reasons that someone might have an issue with Celiac but not be Celiac.  FODMAPS is one.  The reason people are gluten free on a FODMAP diet is that wheat is a high FODMAP food.  It doesn't mean that they can't ever have any wheat - its more about the total of the FODMAP foods at a time.  So that person might be fine taking a burger off the bun, even eating a small piece of gluten cake.

 

I am not certain you do not have Celiac.  But because you are certain, you will just have to experiment with your diet and see what works for you.

 

 

Obviously - a person with Celiac disease should NEVER have gluten.


 

 

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Looks like I should go back on gluten for six months -- which I believe is how long one needs to back on it in order to get a proper test, then get officially tested for celiac and gluten intolerance.

 

If the tests come back negative, then I stay on gluten...

 

On the other hand, it does seem possible that for some people (me?) even a major reduction in gluten -- I'm labeling myself in public as "gluten-free" because I don't eat anything that has gluten labeled into it, although clearly, in this forum, I'm not "gluten-free" -- could help with things like mental clarity, less sadness, anxiety, reduced IBS, etc.

 

My general impression is that, overall, medical science knows precious little about how particular foods, etc. affect mood, anxiety, mental clarity, physical and biochemical well-being/lack thereof, etc. Heck, medical science doesn't even really understand how SSRIs might, or might not, work, what really causes depression, anxiety, etc.

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A gluten challenge is typically 12 weeks of consuming a slice or two of bread a day. Go to the University of Chicago's celiac website for more information about a challenge.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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As Cyclinglady said, a gluten challenge should be about 3 months long.  If you are travelling, you could include that time frame in your gluten challenge (for ease of travel)  but I would start early to see how negatively gluten will affect your health.  For some celiacs, when gluten is fully re-introduced into the diet, the resultant illness can be quite dramatic.  Some celiacs find they feel sicker than they ever did before they go gluten-free.  

 

Others, like me, tend to have symptoms that build with repeated exposures over time.  For me, my symptoms are not as extreme when I had small amounts of gluten than if I ate a gluten filled diet - damage was still being done  though since symptoms do not always correlate to damage and inflammation.  

 

Gluten-free is 100% gluten-free with no risks of cc.  Gluten-light is eating reduced gluten compared to the average person; someone who tries to eat gluten-free but does not worry about cc would be gluten-light if they are eating out without taking precautions.  This is just my opinion though.  ;)


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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It sounds like you are looking for "permission" to eat gluten again.

 

Everybody's body is different. You will have to figure it out for yourself. Don't -need- to ask for permission - if you want to do it, go ahead!  If you were 47 before you went off it, I doubt you will drop dead after a week. 

 

How you feel, will be your answer. 

 

I strongly suggest you first try it a few months before you leave, for at least a week or two. Then if you start feeling sick again, you'll have some time to recover before you leave. 

 

I completely relate to how complicated gluten-free makes social situations. I got to the point where I stopped going out to eat. I got tired of explaining my sob story of months of vomiting. I felt like I was making every meal a big deal. I finally realized, for me every meal -was- a big deal. But if I could separate the big deal from the social group, then it didn't become the main topic of conversation for every outing. So I started researching restaurants ahead of time, bringing my phone to check online menus, and quietly going by myself to ask the waiter for a gluten-free menu. That helped reduce the impact on my social group and has made meals more pleasant. Also, the people I go out with, understand how sick eating gluten makes me, and they want me to feel well. After awhile people get used to it. When your friends look at it as a way you can feel better, instead of a way it makes -their- life a pain, the impact is much lower. I found the way -I- handle it, can help shift the group's focus to feeling better instead of feeling inconvenienced. It took a lot of practice though. 

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