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How Can You Manage A Gluten Challenge When Cc Affect You So Badly?


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21 replies to this topic

#1 Renegade

 
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Posted 01 August 2013 - 04:15 AM

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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#2 dilettantesteph

 
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Posted 01 August 2013 - 05:02 AM

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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#3 MGR

 
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Posted 18 November 2013 - 01:11 PM

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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#4 MGR

 
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Posted 18 November 2013 - 01:22 PM

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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#5 bartfull

 
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Posted 18 November 2013 - 04:22 PM

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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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#6 dilettantesteph

 
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Posted 19 November 2013 - 05:28 AM

Amen!


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#7 Greebo115

 
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Posted 19 November 2013 - 09:10 AM

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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Obvious symptoms started as a baby with gastroenteritis....
Self - diagnosed celiac at age 41 - Gluten-free since December 2012, shortly after realised in needed to avoid:
Dairy, soy, all grains, all pseudo-grains, nightshades, legumes, MSG, xantham gum, all sugar alcohols.
Low sugar/refined carbs since Aug '08 due to reactive hypoglycemia.

22/03/13 Mung beans and blackeyebeans reintroduced successfully!

26/06/13 Some symptoms mysteriously returned - found loads of CC in my nuts and dried beans!! (verified by food/symptom journal and emails to companies)

26/11/13 After 2 weeks on crutches (again) realised that legumes cause my joints to inflame - it's undeniable....legumes gone!


#8 Pegleg84

 
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Posted 19 November 2013 - 10:54 AM

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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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#9 ItchyAbby

 
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Posted 19 November 2013 - 03:26 PM

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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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#10 MGR

 
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Posted 26 November 2013 - 03:29 PM

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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#11 GF Lover

 
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Posted 26 November 2013 - 04:02 PM

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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#12 MGR

 
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Posted 27 November 2013 - 02:16 PM

Thanks Colleen for your support!
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#13 kellysensei

 
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Posted 28 November 2013 - 06:33 AM

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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#14 MGR

 
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Posted 29 November 2013 - 02:55 PM

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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#15 bartfull

 
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Posted 29 November 2013 - 03:10 PM

Doughnuts. Lots and lots of doughnuts.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 





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