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 Our Content
    eNewsletter
    Donate

What Do You Think - Gluten Challenge

beebs

Recommended Posts

beebs Enthusiast
beebs
Posted

My eldest and middle child both need to do challenges at some point, our specialist said to give my eldest a good year at school, because he missed about half of preschool when he was sick. So keep him gluten-free and we'll try next year.

With my younger one (who is 2 and a half) he says we should wait a few years. But I don't want him having a terrible time at school like my eldest one did, he missed so much preschool that he didn't make any friends really because he was in and out in and out.

Me n DH think we should do the younger one earlier - before preschool etc, what would you do in the situation? The specialist said "as a doctor you can do it now, as a dad, I would wait"

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

Celiac.com Sponsor (A8-M):


Mizzo Enthusiast
Mizzo
Posted

Why are you doing a challenge ? is it for an endoscopy ? How long have they been gluten free ?

beebs Enthusiast
beebs
Posted
  • Author

He had an endo in Jan, there was inflammation and increased lymphocytes, but not enough for a diagnosis of anything, he went on nexium and started a gluten-free diet and has improved but there are still problems with his stool, so we are not sure if its celiac, if the gluten-free diet has stopped the constant vomiting or was it the nexium, or if he has something else as well as celiac. If he were completely better gluten-free I'm not sure I would bother with the challenge for an official diag, but because it seems like it could be celiac or something else or both I feel I should be thorough.

Mizzo Enthusiast
Mizzo
Posted

For your oldest

IMO prolonging the inevitable is just that. You have decided to do a challenge , so do it as soon as possible. There will be missed school days , works days etc.. no matter when you do it unless you wait till summer break.

Also, when a person is gluten free for a period and then goes back on gluten it is a far worse experience as your body was healing. So be prepared for the worse. My DD is gluten-free 1 1/2 yrs and simple cross contamination gives her reactions as bad as pre diagnosis when she was eating gluten regularly.

Your youngest is different as he/she usually cannot fully express their pains and emotions verbally to you. You may want to wait until they are older for that reason. However if you do them both at the same time you can get it done with all at once. You know your kids best I think it's more your call on that.

good luck with your decisions

beebs Enthusiast
beebs
Posted
  • Author

I forgot about that, if I eat gluten now its enough to put me in ER. The youngest had pretty bad symptoms anyway, but I'm just not sure if its Gluten. To be honest - if he gets suddenly bad and I know its gluten - then I will stop the challenge, I'll be happy to just know if its gluten or not - I am not hell bent on an official diag if it will make him too sick!

They have both been gluten-free for almost a year now.

salexander421 Enthusiast
salexander421
Posted

Personally I would not do the challenge. There is a lot of research going on right now and you don't know what testing will be like in a few years. If they do have celiac and you give them gluten for a prolonged period of time (at least 3 months is needed for testing) then it puts them at an increased risk of developing other autoimmune disorders. And, it can make them more sensitive.

I know it's hard not having answers but I have found out the hard way that, with gluten intolerance, sometimes you just don't get all the answers. Gluten intolerance and celiac are so complex that they just don't know enough about it. They're working on a vaccine right now for celiac, just wait...once that is out doctors will start being more informed and hopefully testing will improve.

Have you investigated other food intolerances like dairy, soy, eggs, etc? It's not uncommon for these to accompany celiac.

beebs Enthusiast
beebs
Posted
  • Author

He has a problem with lactose and has done since birth, I thought it was because of the inflammation in the gut but it hasn't gone away even though he has been gluten-free for a year. We took him off dairy for 2 months, but he didn't seem any different that when he was just lactose free iykwim. Haven't tried all the other things yet, I was just trying to do one thing at a time, although I think he needs to go on a restricted diet for intolerances because there is obviously something else going on.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,977
    • Most Online (within 30 mins)
      7,748
    P Jackman
    Newest Member
    P Jackman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Conflicting results

      By Scott Adams · Posted

      It's possible he's in the early stages of celiac disease, and it has been caught before villi damage. The blood test results so far do indicate possible celiac disease, as well as his strong family history of celiac disease. If his symptoms get better on a gluten-free diet this would be another strong indication. Personally I think it's definitely better to proceed on the safe side and go gluten-free, rather than to risk severe villi damage and all that comes with it.
    • Dora77
      Permanent Floating & Undigested Stools for a Year

      By Dora77 · Posted

      For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh? For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not. My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky) These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting? Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption? I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate? For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable? Has anyone else dealt with similar symptoms? What ended up being the cause for you? And sorry for the long text!
    • TerryinCO
      Status Update...

      By TerryinCO · Posted

      The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because...  And I have with improved physical results - feeling better; overall functions better, and more energy.  Still 10 pounds down in weight but I still have BMI of ~23.  It's been just over a month now gluten-free diet.  I'm fortunate I get along with diary/milk well and most other foods. I wanted ask about this site's sponsor, gliadin X.  If this is legit, seems like a good product to keep on hand. Though it says it's only a safety for incidental gluten contact - not a substitue for gluten-free diet. What's your input on this? This may be sensitive subject since they're a sponsor. I've used resources here and other sites for information, gluten-free food/product lists. So thank you for all that support. That's it for now - Stay warm...  -2F this morning in Colorado!
    • cristiana
      Increasing symptoms after going gluten free

      By cristiana · Posted

      I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain. I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary. Cristiana
    • Jy11
      Conflicting results

      By Jy11 · Posted

      Well the conflicting results continue as the biopsy has come back negative. 😵‍💫 Waiting to discuss further but I really don’t know what to think now? Eight biopsy’s were taken from duodenum which surely should be sufficient if it was coeliac? 
×
×
  • Create New...