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

[carecare]

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.

[pricklypear1971]

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

[HGL]

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]

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]

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]

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]

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.

[carecare]

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.]

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? :-(