Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Think It's Time To Abandon The Gluten Challenge


Poppi

Recommended Posts

Poppi Enthusiast

So I've been gluten free for 2 1/2 years. My doctor has been wanting me to do a gluten challenge and I've refused.

 

However, my middle son was diagnosed with Autism recently and as part of the full physical workup his pediatrician wants him tested for Celiac as well as all the other possible metabolic/genetic issues that can show up in kids with autism. Sounds rational to me and I figured that if I have to feed him gluten for the whole summer it would be almost impossible for me to avoid cross contamination so I might as well do the challenge as well.

 

Week 1 was fantastic! I ate all the things I have missed. Croissants, good bread, cinnamon buns, homemade goodies, burgers at restaurants.... I have to admit I really, really enjoyed the first several days. However, today is day 12 and the back pain and nausea hit me hard last night. I was up at 5 this morning because my back hurt too much to continue lying down and I'm cranky and nauseous.

 

I can't decide what to do.

 

Continue gluten challenge?

 

Pros: I am enjoying the food, I could proceed with testing, it's easier to do my son's challenge if I am not gluten-free myself, there are still foods on my bucket list I haven't eaten yet

 

This is my 3rd attempt at a gluten challenge, the other 2 attempts didn't even last a full day, if I bail on this one I will never try again so as far as testing goes, it's now or never.

 

Cons: I feel really sick and sore and that's not going to go away until I ditch the gluten again.

 

Mostly I'm just really disappointed. I had hoped when my first week went so well that I had somehow magically healed my gluten issues and I could go back to all the foods I love and miss.

 

What to do, what to do.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



w8in4dave Community Regular

You may be over indulging , I read somewhere in this site, That a slice of bread a day will bring your levels up. 

Link to comment
Share on other sites
Celiac Mindwarp Community Regular

Tough call.

I Iasted 3 weeks before I became too ill to continue ans my doctor told me to stop.

How long have you been told to do? Do you have a blood test and endoscopy scheduled?

My take in the end was to last as long as I could, then get tested immediately.

The positive for me of having tried was that I 100% knew I bad a problem with gluten and needed to be gluten-free for life.

Let us know how you go

Mw

Link to comment
Share on other sites
Renegade Contributor

I don't see why indulge yourself pain when clearly you can't tolerate it.

Link to comment
Share on other sites
Poppi Enthusiast

You may be over indulging , I read somewhere in this site, That a slice of bread a day will bring your levels up. 

 

I probably am. I'm just afraid of not having enough. I want to know going in to the testing (if I last that long) that I have definitely done enough to get a positive test if indeed I have Celiac.

Link to comment
Share on other sites
Poppi Enthusiast

Tough call.

I Iasted 3 weeks before I became too ill to continue ans my doctor told me to stop.

How long have you been told to do? Do you have a blood test and endoscopy scheduled?

My take in the end was to last as long as I could, then get tested immediately.

The positive for me of having tried was that I 100% knew I bad a problem with gluten and needed to be gluten-free for life.

Let us know how you go

Mw

 

I was told 2-3 servings of gluten for 6 weeks. Blood test doesn't need to be scheduled, I can get a lab requisition from my GP and can get an appt with her with 2 or 3 days notice. As far as I know, endoscopy would only be scheduled if blood work was positive.

Link to comment
Share on other sites
charlie76 Newbie

Hi, I'm in a very similar position to you. Today is day 11 of gluten for me. I too think I might be overindulging and also want to make sure I get a positive result if  I do have Celiac.

 

From what you've described, your symptoms sound worse than mine. I've got lots of symptoms but they're not too severe yet although I'm seeing my doctor tomorrow to discuss.

 

The specialist I saw suggested eating 4-6 slices of bread per day for 4-6 weeks before the biopsy.

 

I would suggest reducing the amount of gluten your eating for a couple of days and see if it makes your symptoms more tolerable. 

 

Good luck and hope you feel better soon!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Scarletgrrrl Rookie

I recently did the gluten challenge and I know how tough it can be. I was sick for the whole 7 weeks. I persevered however to get a proper diagnosis (still waiting for my results). For me it is important to know whether this is celiac or gluten sensitivity. I suspect my 3 year old son has issues with gluten and my dad is in a nursing home with dementia and I suspect he has issues with gluten too. It is important for me to get tested as much for them as it is for me.
I wrote down a gluten bucket list of all the foods I would potentially miss and went through the list. I also learnt a lot about how gluten affects my body.
It is a personal choice and I understand not going through with it. I wish you all the best for you and your family.

Link to comment
Share on other sites
Poppi Enthusiast

Update:

 

I had 2 days where I felt awful and then I woke up Sunday morning feeling more or less okay. My back is a bit tight and I've had moments of stomach upset but all in all, totally manageable with some Tylenol. I popped some Immodium in my purse this morning before heading off to my son's IEP meeting but my stomach settled quickly and I didn't need it.

 

So I am going to continue and see how this all plays out.

Link to comment
Share on other sites
Celiac Mindwarp Community Regular

Hope it stays manageable and you get through.

You know where we are :)

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...