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: Tips?!


healinginprogress

Recommended Posts

healinginprogress Enthusiast

So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!

I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.

If anyone found great ways to cope with the challenge...please...SHARE!!! :)


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



Celiac.com Sponsor (A8-M):



domesticactivist Collaborator

I haven't done it, but I have a couple thoughts for you.

1. How long are they having you do the challenge before the biopsy? A few days is not enough for an accurate result.

2. Please record all your symptoms and what you ate in detail. That way if you can't stick with the challenge at least you'll have something to show your doctor.

Good luck!

ravenwoodglass Mentor

Keep a record of symptoms as the other poster stated. In addition if things get bad call the doctor's office and ask to speak with either the doctor or a nurse. They may need to call you back but most will. Then give them all the gory details if you are being woken up at night by the pain and D make sure they know that. Some doctors will advise you to stop the challenge if symptoms are severe.

Googles Community Regular

When I get glutened I get nausea for multiple days afterwards (once for 3 months). My doctor prescribed an anti-nausea med to help me be able to eat, as without it I couldn't keep food down. It helped a lot. You might want to look into that for the nausea. I was going to say make sure it is gluten free, but if you are on a challenge, that might not matter.

Monklady123 Collaborator

So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!

I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.

If anyone found great ways to cope with the challenge...please...SHARE!!! :)

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

Googles Community Regular

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

I don't know if this is why the OP is doing it, but, sometimes people need it for accommodations, like for school or work. Without an official diagnosis from a doctor they don't have to provide those. Also sometimes it is easier for people to stick to the diet when they have an official diagnosis as it is so challenging. It is easier for some people than trying to wonder if it could be something else possibly. Also sometimes family is more accepting with an official diagnosis, and don't question that it is "in the person's head".

love2travel Mentor

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

I put myself through the challenge because gluten did not make me sick at all. Nil. So, I truly did not believe I had celiac until the biopsies came back positive. So, I needed it to prove that I have the disease otherwise I likely would not have done anything about it. I frankly LOVED the challenge, getting to eat all the yummy gluten I wanted to for three whole months. I made a gigantic list of my favourites and crossed them off as I had them one last time. If I felt terrible on gluten it would likely be a very different story.


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



Celiac.com Sponsor (A8-M):



healinginprogress Enthusiast

Thank you for the responses! Now, I am not a quitter, so I feel a little like I "wimped out", but the intensity of my migraine the 3rd morning definitely changed my mind about the "challenge". I will call the doctor on Monday and see what he says. He did, after all, give me the option. And if I was asymptomatic then I could see staying on the challenge for sure. But I puked so many times yesterday that my throat is sore and that's just not healthy. The pain and the fatigue are not worth it, either. After they do the colonoscopy/endoscopy they are scheduling me for surgery, so I'm going to need to be as healthy as possible going into that. I think this is all the proof I need that I am indeed Celiac!

Why did I want the definitive diagnosis? I'm the type of person who needs to KNOW things. I thrive on information, numbers, facts...not so much theories and probabilities. I like certainty. I know life isn't about certainty, it's just what makes me comfortable. I feel weird saying I have Celiac Disease when I don't have the data to back it up, aside from a very positive blood test and very telling symptoms. I just graduated from university, so I guess I'm used to having to prove things.

Archived

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

  • 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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,219
    • Most Online (within 30 mins)
      7,748

    Cmat
    Newest Member
    Cmat
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.