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?

Steviac

Recommended Posts

Steviac Newbie
Steviac
Posted
  • Author

Thanks again for ever more interesting facts and experiences. It's day 3. Been my first day back at work. It's been pretty unbearable. And all in time for my birthday/holiday! At least the gluten challenge gives me a good excuse to stuff my face with french pastries! (I have to look at the bright side! hahaha)

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Thanks again for ever more interesting facts and experiences. It's day 3. Been my first day back at work. It's been pretty unbearable. And all in time for my birthday/holiday! At least the gluten challenge gives me a good excuse to stuff my face with french pastries! (I have to look at the bright side! hahaha)

Eat a pain au chocolat for me! :P

Steviac Newbie
Steviac
Posted
  • Author

So I managed to have a good time in France despite feeling awful. I had more than one pain au chocolat for you Skylark ;)

I have suffered for it though. Mouth ulcers, bleeding tongue (???????), severe cramps, extremely painful bones??, major fatigue, constant headaches, itchy patches of skin rash and I seem to be drifting off into daydreams like no-one's business... I've also started bruising very easily. I used to bruise a heck of a lot up until my early teens and then I just didn't bruise anymore. But now they're popping up all over...

I've also recently found out that my cousin has been diagnosed with coeliac. Am I right in thinking that coeliac is a genetic thing? Very confusing!?

Skylark Collaborator
Skylark
Posted

Sorry you're feeling so sick. I hope the pain au chocolat was good, although it probably hardly feels worth the trade-off for feeling so sick. I imagine you're going gluten-free for good no matter what the tests say now. I wasn't expecting to come up sensitive to gluten when I did my elimination diet or I would have had a lot more good pastries beforehand. :lol:

Yes, it's genetic. A first-degree relative like a parent or sibling gives you a 1 in 20 chance of having celiac. I don't know about cousins but it's clearly in your family.

Steviac Newbie
Steviac
Posted
  • Author

Well the challenge has beaten me! I've decided I can't do it any longer as the really nasty symptons have kicked in. It's really not worth it... At least I tried I guess :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Well the challenge has beaten me! I've decided I can't do it any longer as the really nasty symptons have kicked in. It's really not worth it... At least I tried I guess :)

Let your doctor know how badly you reacted to the challenge. You do know the answer as to whether your body wants gluten or not now. I hope the reaction stops soon.

AnnaH Newbie
AnnaH
Posted

Well the challenge has beaten me! I've decided I can't do it any longer as the really nasty symptons have kicked in. It's really not worth it... At least I tried I guess :)

I can relate - I am on day 12 of a gluten challenge and I have an EGD scheduled a week from today. My doctor thinks that 2 weeks should be enough as I was only gluten-light, not gluten-free before (or he is just convinced I don't have celiac and is trying to prove that to me.) In any case, I feel awful: migraines, fatigue, lack of concentration, irritability, and some digestive issues as well. I am not sure I will last an other week on this "challenge". I am thinking of eating my 4 slices of bed just before going to sleep, maybe that way I avoid the worst symptoms - has anyone tried that?

Steviac, have you canceled your biopsy, or will you do it nevertheless?

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

Celiac.com Sponsor (A8-M):


Steviac Newbie
Steviac
Posted
  • Author

I can relate - I am on day 12 of a gluten challenge and I have an EGD scheduled a week from today. My doctor thinks that 2 weeks should be enough as I was only gluten-light, not gluten-free before (or he is just convinced I don't have celiac and is trying to prove that to me.) In any case, I feel awful: migraines, fatigue, lack of concentration, irritability, and some digestive issues as well. I am not sure I will last an other week on this "challenge". I am thinking of eating my 4 slices of bed just before going to sleep, maybe that way I avoid the worst symptoms - has anyone tried that?

Steviac, have you canceled your biopsy, or will you do it nevertheless?

Mine was actually for another round of bloodtests, it hadn't yet got to the biopsy stage. I have however been to see my doctor and she's referring me to a gastroenterolgist (sp?) who specialises in coeliac disease and I will probably be having an endoscopy once I've seen him. It could be weeks before I end up seeing him though.

ravenwoodglass Mentor
ravenwoodglass
Posted

Mine was actually for another round of bloodtests, it hadn't yet got to the biopsy stage. I have however been to see my doctor and she's referring me to a gastroenterolgist (sp?) who specialises in coeliac disease and I will probably be having an endoscopy once I've seen him. It could be weeks before I end up seeing him though.

If you are going for a diagnosis you really do need to stay on gluten until after you see the GI doctor. However you don't need a doctors permission to be gluten free and if you can't tolerate staying on the challenge and your symptoms are gone by the time you get to that appointment you do have your answer.

cassP Contributor
cassP
Posted

ya- try to get the blood tests and maybe even a biopsy as soon as you can- or at least before you go off the gluten-

but i TOTALLY understand. my GI had only had me on a 2 week challenge (and the previous 6 years i had been mostly gluten lite).... so my blood tests were still somewhat inconclusive- and my insurance company wouldnt do the endoscopy.

Anyways- i HONESTLY dont know if i could have done more than 2 weeks... i thought i was gonna enjoy all the food... but i had no idea how bad the ANXIETY was gonna be!!!!!! i was DONE by day 14 DONE- no matter what the game plan was gonna be!!!

and wouldnt you know it, i STILL went on and off gluten for a couple of years untill i got my genetics test, and researched what my previous blood tests might mean.

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.