Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Challenge

annie76

By annie76
in Coping with Celiac Disease

Recommended Posts

annie76 Apprentice
annie76
Posted

I'm coming up on my two year anniversary dx, I haven't been here in quite some time. Anyway, I'm doing a gluten challenge, just curious if any of you have tried this, and what were your results. I've had a ton, and I'm fine, which we all know doesn't mean squat. I think its only a matter of time...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


YoloGx Rookie
YoloGx
Posted

My eldest sister got inadvertently glutened staying at my mother's after being completely off gluten for over two years. She became ill with a virus as well as D. It took her one and a half months to get over it. Not saying this will happen to you, but be forewarned. I suggest you have plenty of digestive enzymes around plus pro-biotics and either marshmallow root or slippery elm to help counteract the effects.

Bea

darlindeb25 Collaborator
darlindeb25
Posted

I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

gfp Enthusiast
gfp
Posted
I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

I think you hit it on the head .... Why ????

There are numerous reasonbs not to .... including provoking a rection to something or developing a condistion that is not reversible. Although these are rare it seems like rolling the dice purely for the sake of it?

NorthernElf Enthusiast
NorthernElf
Posted

I think I understand the desire to do a gluten challenge. Wouldn't it be nice to have a piece of paper that simply states that you are celiac or cannot tolerate gluten ? To have it in black & white ?

I've been dealing with this for four years. There are many stages to acceptance. At first I was ill, had reflux, ached, was so tired & crabby, had big sinus issues, nausea, and a life long history of stomach issues. An illness triggered it all - magnified it. My doc decided I couldn't have celiacs and bungled my testing. I had a negative blood test after about a month of no gluten...my biopsy was over 3 months after that...so no positive celiac test.

HOWEVER - the proof is in the pudding, so to speak. I eat gluten, I get sick. It's that simple.

Unfortuanately, it's even worst than that. My reaction to gluten is very sensitive these days. Just one example - last month I had poached eggs in England & noted that second egg tasted vinegary. My SIL tells me they will use vinegar to keep the eggs together if they just make them in boiling water. Within half an hour I'm cramped, nauseated, and just want to go lie down. It doesn't occur to me until the next day that in England they use malt vinegar on pretty much everything. All I'm saying is - that was a totally blind test, so to speak. Whatever little bit of gluten is in whatever little bit of vinegar they used on my eggs was enough to wreck my morning. I went on holiday and lost a couple of pounds, this in England where they have quite a few gluten-free products. I'm convinced - I don't need a challenge to prove it.

I do agree it would be nice if they came up with a test like a pregnancy test that showed for sure that a person is celiac or intolerant. But as to a challenge, I couldn't handle it - and it would be murder on my intestinal tract (damage!).

annie76 Apprentice
annie76
Posted
  • Author
I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

Thats just it. I do have celiac disease. I was dx with an upper endoscopy, biopsy. I have been "trace" glutened about 4 or 5 times in my two years being gluten free, and now, I've done this and I'm feeling fine. Its just strange to me. I've been asked why several times so far, I just want to see what happens, I don't even miss the food that much, being gluten free is so much healthier I have no intention of going back to it. I guess I'm just oddly curious.

samcarter Contributor
samcarter
Posted

If I had a definitive diagnosis, I would never want to eat gluten again. Not even out of curiousity. You don't need to do a gluten challenge for a test, so I'm not understanding this desire to make yourself sick. Or to cause damage to your body, even if you don't feel it.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


YoloGx Rookie
YoloGx
Posted

I suggest perhaps then you just save it for that rainy day for when somehow or other you get glutened by accident. It happens. Maybe you won't react because you have healed so much. Even the Merck Manual says celiac is insidious after all. It takes a while to develop on either end no doubt.

Bea

ShayFL Enthusiast
ShayFL
Posted

I just dont understand some things, because I am not that way. On a similar note, my Sis was just dx with BC in Feb. and she quit smoking cold turkey because she doenst want the cancer to come back. I was so very proud of her because she has been smoking for 30 years. And she has been feeling incredible. Losing weight. Exercising. Eating right. Getting healthy. Then 3 days ago, she tells me she had 1 cigarette at a bar with a beer just to see what it would be like again......***sigh***

Dont forget.....just like cigarettes...gluten is a drug. :(

annie76 Apprentice
annie76
Posted
  • Author
I suggest perhaps then you just save it for that rainy day for when somehow or other you get glutened by accident. It happens. Maybe you won't react because you have healed so much. Even the Merck Manual says celiac is insidious after all. It takes a while to develop on either end no doubt.

Bea

Exactly, thats what I'm thinking. I remember it all started with reflux, and went downhill from there for about 2 years. I'm not going to do that again thats for sure! FYI, to you all...It wasn't all you think it would be, the cravings and missing the food that is. I think it just gets built up after years of not eating gluten. I'm done with it, after all its only food. Thank you for the friendly advice, and keeping the torches and pitchforks at bay!

ShayFL Enthusiast
ShayFL
Posted

We arent all angels....but we have good hearts. I just went grocery shopping......and saw the Bobboli pizza crust. I didnt eat that. But I used to make the most amazing homemade pizza. And I had a memory......***sigh***......My sourdough crust was to die for........but no more. :P

YoloGx Rookie
YoloGx
Posted

Yeah, similarly I was at whole food tonight and saw all the goodies they sell and felt a moment of sweet nostalgia. But I reminded myself how its a good thing I don't eat that stuff anymore. I am in much better shape than most people my age after all largely due to avoiding gluten, sugar and a variety of allergens -- as well as continuing to go for walks, do yoga etc.. Thankfully when I really get a sweet tooth I can bake myself a gluten free stevia sweetened goodie.

Bea

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    3. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    4. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
    5. Scott Adams
      0

      Häagen-Dazs Chocolate Dark Chocolate Mini Bars Recall Due to Undeclared Wheat and Gluten

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,077
    • Most Online (within 30 mins)
      7,748
    Deb baker
    Newest Member
    Deb baker
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.