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

Sad...this Gluten Challenge Is Going To Be Rough :(

carecare

Recommended Posts

carecare Enthusiast
carecare
Posted

Doing the gluten challenge until their endoscopies on December 16th even though the dr said to start gluten 4-6 wks before. I just felt it should be longer (from what I've read so many people saying on the forums). Day one was yesterday (we've been gluten free since the beginning of August). Both boys ages almost 10 and 12 woke up feeling "yucky" and slept longer than they normally would. Almost 12 yr old came downstairs moaning as his muscles are already hurting. 10 yr old said last night after his crackers he felt awful...and after his gluten toast and eggs this morning he said his stomach was hurting. I'm so sad that I feel the need to put them through this...but I just think they should know for sure if it's celiac because they won't feel the need to cheat as they get older...they'll know for their own families as well. I'm sitting here holding back tears that I am making them feel so awful. My almost 12 yr old said "oh this is horrible, now I know for sure what it's going to feel like to eat gluten, I hurt in every muscle of my body."...off to go cry now...then pick myself up and get him some motrin. :(

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

I'm so sorry. I know your pain is 3x - yours and each one of theirs.

HGL Newbie
HGL
Posted

Carecare,

I am so sorry for your families pain right now. As a brand new mom to this I am wondering if you've done the genetic testing for it? Our ND recommended it but said its more of a comfort thing for us.

HGL

carecare Enthusiast
carecare
Posted
  • Author

Thank you both. I know I hurt for them more than they probably hurt themselves. Tough being a Mamma.

I asked the dr about genetic testing. Wasn't too keen on his response. He said "Well, in your case with your family history I am certain you would come up with the gene for celiac." So he didn't see a point in testing for the gene because it's not going to tell us if they have celiac or not. Really is hard to see the rationalization behind a biopsy being the "gold standard" for saying "yes, you have celiac." ...when diet and blood shows there is a problem with gluten in your body.

Now I'm second guessing my starting them on a diet so early? I did more reading and I'm coming up with lots of different time frames. from 4-6 wks...to 4-8 wks...but one did say no longer than 12 wks especially in children. Come the time for their endoscopy will be 11 1/2 wks. Maybe I don't have to challenge them so long after all. Maybe starting in a month would still be ok? hmmm....

kareng Grand Master
kareng
Posted

Univ of chicago Celiac Ct does free blood testin every Oct. On the postcard they sent me, it said you must be eating a regular gluten diet for 3 months.

Skylark Collaborator
Skylark
Posted

Sorry the kiddos are feeling so punk. :( Research shows you won't reliably get a relapse unless you eat gluten for 3 months so you're doing the right thing. You don't want to challenge too short, then wonder if the biopsy was right if it's negative.

Genetic testing is not diagnostic at all. About 30% of the US population carries a "celiac" gene, but only 1% are celiac. If the blood tests weren't convincing, the only option to be certain about celiac vs. gluten intolerance is the biopsy.

M0Mto3 Rookie
M0Mto3
Posted

Sorry that you and your kids are going through this. I have my 15 month old on a gluten challenge and she has been miserable. She had 6 loose bms the day after she started and then was just crabby. Now, 6 weeks into it she just started having 3 loose, pale, bms a day. I am counting the days until her GI appt.

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

Celiac.com Sponsor (A8-M):


carecare Enthusiast
carecare
Posted
  • Author

Thanks skylark and momto3. Yes...this is definitely going to be a long 2 1/2 mnths if we make it that far. :( My son who has the most problems with gluten as far as we can tell...the muscle pain said his muscle pain yesterday was even worse than the day before. Then last night he was hunched over in pain. I wasn't sure what was going on...as we were in the car and his brother said "something is wrong with E." He couldn't even speak...in the end it ended up as gas pain...which I don't ever recall happening to him before. Poor kid. Interesting is my other son who initially got stomach pain and nausea from this gluten trial seems ok. He's not complaining of any more pain. So hopefully it's not so bad for him. Older son though...this muscle pain stuff is torture for him! :(

Yeah, the only reason I questioned the dr about genetic tests was really so that certain family members might get a clue that maybe they too have a problem...and was hoping if we showed them there was a genetic link then they'd make the changes to save their own health. It's sad to see people you love suffer such ill health when they could possibly figure out the reason with just eliminating one thing...yet they never give it a try. I guess it's also why I want confirmation with these endoscopies. Even if it comes down to a negative result I know absolutely for sure gluten harms my boys...especially the older one. He knows it himself.

T.H. Community Regular
T.H.
Posted

You might want to call the doctor up and talk to them about these reactions, or at least find out a way they can help you monitor them closely, if a couple days is causing this much pain.

Most doctors seem to assume any problems on a gluten challenge are going to be gut related, and not too severe. For many of us, after going gluten free, our reactions increase, and sometimes it can be to the point where it can become a more serious issue.

There's also been some recent discussion of gluten challenges that might be worth investigating, if your little ones are having this much trouble. This one article mentions a couple of studies re: the issue:

Open Original Shared Link

Best wishes, and good luck! One of our children is celiac, but the other tested negative through blood work, but felt better off of gluten. We really struggled with the idea of a gluten challenge for him, too. It would be so much easier if it was a clear cut, easy answer, yeah? :-(

Archived

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

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

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    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

    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • 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.