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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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domesticactivist

Does Anyone Else Stink?

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So I am a couple weeks into a gluten challenge after a year of being gluten free and 9 months of GAPS. By changing my diet, I had eliminated what had become terrible chronic bad breath, BO, and gas. Uncultured dairy causes it and gluten causes it, I know that for sure.

I am trying to do the challenge for at least two months but this is so embarrassing. Does anyone have coping skills for these symptoms? Brushing teeth/mouthwash/gum etc don't touch my bad breath. Deodorant doesn't cut my BO. Charcoal helps gas some.

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Ick.

What about digestive enzymes? Will that help the GI issues at all?

If you can, regular altoids are gluten-free. Won't charcoal bind all the vitamins/minerals and interfere with absorption?

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I used to experience the same problems when I ate gluten, and I used a product called Breath Asure. It's a natural product that "works with the digestive system -- often the source of offensive breath." Yes, I still have some of the product around, but I no longer need to use it. You need to swallow 2-3 capsules with liquid and wait 30 minutes for it to work.

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I have the same problem with any gluten or dairy, but I can't smell it on myself, and my husband isn't very sensitive to it, but others are.

I think Pepto-Bismol helps.

Can I ask, why bother with a gluten challenge? For me, if a food makes me smell bad, that's reason enough to stay away from it, all other health concerns aside.

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Good point about the charcoal... I guess it's just going to have to be for those days when I really want to make a good impression :blink: My partner also pointed out that digestive enzymes might reduce the amount of damage being done, which might defeat the purpose of a gluten challenge.

I think I'll give the breath assure a try, I've never used things like that but this is ridiculously nasty.

As for why I'm doing it, yes, gluten is definitely bad for me, the past couple weeks have made that clear if it wasn't before. I've got some emotional crap to work out about always having been considered a hypochondriac. There is a chance this is something I can actually prove that's wrong with me (and if I do, family members might even consider getting tested). I know a lot of people don't get that validation, but I want it. Rationally I know I shouldn't need it, but emotionally I do. I have so many mild, unverifiable health issues. If it turns out it is "just" an intolerance I guess I'll be forced to confront my emotional "hypochondriac" stuff a bit more, but I'd love to have some external validation that it's not all in my head if I can get it.

The other thing is that we are vigilant about gluten. My partner was saying things like it's just for our kid and cross-contamination doesn't matter at a party when he's not around... once in a while is ok, etc. I'd like to know whether that's actually the case for me or not.

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Good point about the charcoal... I guess it's just going to have to be for those days when I really want to make a good impression :blink: My partner also pointed out that digestive enzymes might reduce the amount of damage being done, which might defeat the purpose of a gluten challenge.

I think I'll give the breath assure a try, I've never used things like that but this is ridiculously nasty.

As for why I'm doing it, yes, gluten is definitely bad for me, the past couple weeks have made that clear if it wasn't before. I've got some emotional crap to work out about always having been considered a hypochondriac. There is a chance this is something I can actually prove that's wrong with me (and if I do, family members might even consider getting tested). I know a lot of people don't get that validation, but I want it. Rationally I know I shouldn't need it, but emotionally I do. I have so many mild, unverifiable health issues. If it turns out it is "just" an intolerance I guess I'll be forced to confront my emotional "hypochondriac" stuff a bit more, but I'd love to have some external validation that it's not all in my head if I can get it.

The other thing is that we are vigilant about gluten. My partner was saying things like it's just for our kid and cross-contamination doesn't matter at a party when he's not around... once in a while is ok, etc. I'd like to know whether that's actually the case for me or not.

Hang in there!

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If it turns out it is "just" an intolerance I guess I'll be forced to confront my emotional "hypochondriac" stuff a bit more, but I'd love to have some external validation that it's not all in my head if I can get it.

"Just" an intolerance can still make you very sick. My doctors also tell me they feel like it's hard to get positive celiac testing even in people with pretty clear celiac symptoms.

It sounds kinda like you need to throw away the idea of being a hypochondriac and work though your emotional issues either way. It can be very painful feeling sick and being told it's in your head (or in my case psychiatric).

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Yeah, the issues need work and rationally I know non celiac intolerance can be even more serious than celiac in some cases. It's easy to take it seriously for others, but I have a hard time taking myself seriously.

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Hang in there DA! :) I know exactly what you mean about some of the emotional issues of being called (or considering yourself) a hypochondriac. It was such a relief to me when I got my test results and my Dr. made that notation of 'Celiac Disease' in my file based off my going from dying to not dying in a matter of weeks and the IgA results. But even so I still struggle with it because I didn't have the biopsy. And so sometimes I find myself wondering, 'is it all in my head?', 'Did she just put that down to get me to shut up?', etc, etc. I know I shouldn't need and additional validation for this but I have considered tackling a gluten challenge and getting the biopsy myself but the thought of even approaching gluten keeps me awake at night. Literally. I will not be able to go to sleep it give me the heebie jeebies so bad.

However, on the note of your original question....

How are you ingesting the gluten? As bread? I find that I have bad BO and halitosis when I eat 20-30 grams of grain or sugar (not veggie though) carbs/day over for even a two day period. Could you get some pure vital wheat gluten at the market and then simply sprinkle a little of it into something like a soup or something? That way you are getting the gluten without the carb intake if that's part of the problem. I know you generally eat a very low grain and minimal processed food diet anyway so perhaps your body is rebelling.

* Edited because 'though' and 'thought' are not interchangeable.

** Edited again because I shouldn't be trying to communicate rationally at 0220.

Edited by Korwyn

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I'm sorry you have felt that way, too, but am glad it's not just me. That's a good point about the sugar. I've been eating cream of wheat, bread, and pasta. It's been very hard to get the full 20 grams a day. I used to eat way more than that, though! I was worried about trying to basically eat 20 grams of sprinkled gluten but maybe that would be easier than what I'm doing, after all.

Now I'm back to an old sensation I used to have of being hungry but not wanting to eat, but turning into a bottomless pit once I do. I think malabsorbtion + bloating must cause that, It's funny how obviously uncomfortable I used to be without noticing it as a problem.

I said something to my mom about the gluten challenge so I could get tested and she said something about how of course it's not a problem because I ate so much as a kid and was always so healthy. I can't help but feel I'm making it all up, never having been on death's door.

My partner says the only proof she needs is her nose!

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Yeah, the issues need work and rationally I know non celiac intolerance can be even more serious than celiac in some cases. It's easy to take it seriously for others, but I have a hard time taking myself seriously.

You need to give yourself a big hug. You deserve as much of your own compassion as you offer to others! Your own reactions to gluten are not somehow less important than those of the rest of us on the board that you have been supporting so generously. You wouldn't dream of telling someone else who had uncomfortable reactions to gluten that they were hypochondriacs - why do you even consider accepting such a horrible label for yourself?

As far as the 20 grams a day, I thought the usual recommendation for gluten challenge was four slices of bread worth of gluten? Is that 20 grams?

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I haven't been online for a while due to pretty severe health issues. I'm surprised to see you're on a gluten challenge, but I completely understand the desire for answers...one way or the other.

My PCP has me pegged as a hypochondriac, doesn't believe my Celiac DX and assumes anything I complain about is mental.

I asked for a blood panel to be drawn to see if some vitamin/mineral deficiency was causing my symptoms. She asked if I take a multi-vitamin and I said yes. She then said I didn't need a blood test if I was taking a multi. :blink:

My symptoms worsened. I tried to get another appointment and was set up with her colleague. He ran the test and found I was very anemic. He called me and said to start supplimenting.

That's just one small example of how much it matters to know for sure.

It also helps you know how to procede in so many instances.

I thought the idea of adding gluten to other food items was very clever. I've seen the bags of gluten in Bob's Red Mill displays and in the regular wheat flour aisle at the store.

You're always so helpful and compassionate to others. I hope you get the answers you need.

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Thanks for the kind words, everyone.

As for the 20 grams, I extrapolated that number from this article and it seemed like a good place to start: http://www.celiac.com/articles/38/1/How-much-gluten-is-in-a-normal-diet-and-how-much-does-it-take-to-cause-damage-in-a-celiac/Page1.html

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Oh, 4 slices of bread does have about 20g. Fair enough. :)

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I am new to the board and your post really struck a chord with me. Over the years I have also been treated like a hypochondriac and having all my issues be dismissed by the people I care about. I totally get the need to have an official diagnosis so that you can tell everyone exactly what's wrong with you - to have a recognized disease to point to - and have doctors backing you up. I really hope you are able to get that; I won't because I just can't go through a gluten challenge on the hopes of getting it. Good luck!

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Yeah, but watching labels I see that the amount in bread is a lot more variable that the 4.8 cited in the article. You'd think the medical folks would have an actual guideline in grams for people to follow. I'm just making it up as I go along and hoping for the best.

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So how are you doing?

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