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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 Can You Manage A Gluten Challenge When Cc Affect You So Badly?
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22 posts in this topic

I read about how some people feel nauseous for days from the tinniest cross-contamination so I wonder how some people who been off gluten for a while can manage a gluten challenge for a few days, wouldn't eating actual pure gluten make you feel very ill instantly and thus preventing you eating any other bite of gluten for days?

 

Or maybe it's because I read stories of too many sensitive people which seem to be the norm on this forum?

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I think that is a serious problem, and I think that is why some are working to find a way to diagnose without the necessity of a gluten challenge.

 

It is also why people here are always encouraging people to get diagnosed before trying a gluten free diet.

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I am currently on a 8 week gluten challenge after having been gluten-free for two months before and I can tell you the journey has not been fun at all. For the first five weeks the ingestion of gluten would result in the gradual but most horrendous digestive symptoms, followed by constant nausea and tummy ache- joint pain no ordinary pain killer could make go away- dizziness, etc. Now I still have the same symptoms but they are constant and don't just hit me and overwhelm me!! I am in the process of being diagnosed and have only one and a half week left of this hell, util my doctor performs a biopsy.

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I read about how some people feel nauseous for days from the tinniest cross-contamination so I wonder how some people who been off gluten for a while can manage a gluten challenge for a few days, wouldn't eating actual pure gluten make you feel very ill instantly and thus preventing you eating any other bite of gluten for days?

 

Or maybe it's because I read stories of too many sensitive people which seem to be the norm on this forum?

No one in their right mind would want to feel as Ill as one does when glutened! Therefore it is extremely important to be diagnosed properly to be really disciplined with their gluten-free diet.

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One does not have to be "properly diagnosed" in order to be really disciplined with their diet. All one has to do is have the desire not to be horribly ill. I don't think any of us here would knowingly eat gluten any more than we would knowingly eat strychnine, "proper diagnosis" or not.

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I read about how some people feel nauseous for days from the tinniest cross-contamination so I wonder how some people who been off gluten for a while can manage a gluten challenge for a few days, wouldn't eating actual pure gluten make you feel very ill instantly and thus preventing you eating any other bite of gluten for days?

 

Or maybe it's because I read stories of too many sensitive people which seem to be the norm on this forum?

  Renegade, this is the exact reason I will never be diagnosed by a doctor until the day they invent another way to test. I seem to be super sensitive and can become incapacitated for 3 weeks just from something supposedly naturally gluten free (e.g. plain raw cashews, beans, rice...) that was packed in the same factory as gluten.......my own diagnosis is plenty enough!!
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I wasn't patient enough to wait to get a biopsy done (blood tests were negative, probably false), but after feeling a million times better gluten-free, there was NO WAY I would ever touch the stuff again. I am quite confident in my self-diagnosis, and that's enough for me (Celiac runs on both sides of my family).

The only benefit of having an official diagnosis (at least in Canada) is that you can then claim the extra cost of gluten free foods on your taxes, which seems like a lot of pain to go through just to do some extra paperwork.

My mom did a challenge about a year after going gluten-free, and has had problems with dermatitis ever since.

If you feel you absolutely need that stamp of approval, then be ready for a month of pain, then several months of recover, basically starting from scratch.

If feeling better is enough to tell you that you should never touch gluten again, then there's really no need for more testing.

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One does not have to be "properly diagnosed" in order to be really disciplined with their diet. All one has to do is have the desire not to be horribly ill. I don't think any of us here would knowingly eat gluten any more than we would knowingly eat strychnine, "proper diagnosis" or not.

This! This! This! :D

 

My biopsies and blood tests were all negative, but there is no way, no how I will EVER want to eat gluten anything, ever again. (Just check out my pictures in the DH photo bank, page 7 and you'll know why). I suspect all my tests were negative because I was gluten "light" for several years beforehand, on account of living with someone who is gluten intolerant, so I ate it only occasionally and never at home. (The biopsies were probably negative due to topical steroid use, but that's another topic). And there is no way I will ever do a gluten challenge - 2 pieces of bread a day for 6 weeks?! I'd likely lose my mind or kill myself before I got to the end.

 

Is there any other disease/disorder where this kind of thing is necessary (consuming the very thing that makes you ill in the first place to try and get a diagnosis)? It seems so...archaic.

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There are a number of reasons why one would do such an insane thing as a complete a gluten challenge and feel absolutely rotten for days on end. In my particular case I live in a country where the National Health Service is desperate to save money... My children display many celiac type symptoms I have already been to the doctors several times - diagnosis Ah, let's wait, take paracetamol!! In sum, we are not getting very far. However, if one family member is positive- everybody gets tested automatically! I am doing a gluten challenge to help my children- also I have numerous related health issues which I have been told will not be treated without a proper diagnosis, celiac disease is dangerous, gluten sensitivity not life threatening, I want to know whether I can humour my mother in law by eating the delicious cake she made and she is offering or point blank say no.

In any case I admire all of you who are so strong and are able to just say NO! Also I am having my biopsy tomorrow and whatever the result after that I will be going gluten free for ever! Probably in 20 years time when they discover a better way to test this they will realise what barbaric practise this was!!

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I think it is great that you are doing this for your children and to be treated properly for your other health issues.  It is an important piece of your health puzzle. 

 

Colleen

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Thanks Colleen for your support!

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I'm worried about this, too. I started gluten-free a month ago and now want to be tested. I have an endoscopy/biopsy scheduled for Dec. 31 and have to be eating gluten for 2-4 weeks by that time. So I'm going back to gluten on December 10 for three weeks. Excited to try out some recipes but nervous how I will feel, especially over the holidays.

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I'm worried about this, too. I started gluten-free a month ago and now want to be tested. I have an endoscopy/biopsy scheduled for Dec. 31 and have to be eating gluten for 2-4 weeks by that time. So I'm going back to gluten on December 10 for three weeks. Excited to try out some recipes but nervous how I will feel, especially over the holidays.

The way I coped with it is, I just ate everything gluten full I really like which is dangerous and I will probably never be able to eat again! Examples, lasagna, cupcakes, yucky sweet birthday cake with synthetic icing, Oreos, etc.. Good luck, just go for it, you will need it you will feel crap!!

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Doughnuts. Lots and lots of doughnuts.

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I accidentally had gluten on Thanksgiving and I got no symptoms...hmmm.

 

I'm going to do the Entero Lab stool test - you don't need to do a gluten challenge for it, though I do plan to eat gluten for at least a few days in December to see how I feel. I'd rather avoid a prolonged gluten challenge and the endoscopy/biopsy I've got scheduled, if I can.

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Ah yes, I had forgotten those fabulous doughnuts.... And through some bagels in tooooo- they made me so sooo illll- I think they have extra gluten.

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Doughnuts. Lots and lots of doughnuts.

Lol bartfull. 

 

Pastries. Lots and lots of pastries. 

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As I commented to a smoker friend of mine: well, if you're going to poison yourself, you'd might as well enjoy it.

 

I can't imagine making myself eat gluten for a month for a test, but if I did I'd soon be stuck on my couch eating all the good stuff... though I might have to get someone to bring it to me due to the excruciating pains, and probably loosing 20lb in the process (which would not be a good thing).

 

Baklava. And really nice flaky pastry. I'd basically eat all the things in the greek bakery down the street. I've never ever encoutered a replacement for philo-dough.

 

But seriously, that would take several months to recover from. NOT DOING IT EVER EVER EVER EVER

 

If you've only been gluten free for a short period (a few weeks to maybe a couple months), the you wouldn't have healed completely anyway so the effects might not be as nasty, but even then...

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I read about how some people feel nauseous for days from the tinniest cross-contamination so I wonder how some people who been off gluten for a while can manage a gluten challenge for a few days, wouldn't eating actual pure gluten make you feel very ill instantly and thus preventing you eating any other bite of gluten for days?

Or maybe it's because I read stories of too many sensitive people which seem to be the norm on this forum?

 

My dr suggested I "test" it out now that it has been a year since my dx. I did this weekend and immediately regretted it. One bite was all that did it and is all I need to know that I am most def Celiac. I was dx'd Celiac even though all my tests and biopsy came back negative. I should have just smiled and nodded and not eaten what I did. My symptoms, thankfully, usually just last a few hours and then leave me a little drained. Some people are sick for days :(

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As someone else here said, this is the reason I'm not getting tested. As for my children, they will know that I am gluten intolerant and they don't need to know that I'm officially DXd to realize they need to watch for this as well. (And I am gradually reducing my household down to gluten-free in the meantime.)

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I'm not sure if it's available to you but Why not try asking for a Rectal Challenge (I can not say that without giggling like little kid)? That way you don't have to ingest any, they just place a little where you're sensitive and see if anything happens. Obviously, it's still a bit damaging but not as much so.

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