Gluten Challenge Questions

[mom-to-claire]

I have a very long story about my daughter but I'll spare you the details. She has been gluten free since she was 10 months old...she just turned 3 a couple weeks ago. She has never had a diagnosis of celiac which is why we are doing this challenge. She has multiple medical issues that have all pointed to a period fever syndrome (after many, many, many hospital stays and procedures). Her doctors think she might have FMF (Familial Mediterranean Fever) or TRAPS (I forgot the full name right now). Looking back on her symptoms and why we put on gluten free in the first place,everything is pointing to these fever syndromes and not Celiac. It is our feeling that she doesn't have a gluten sensitivity or intolerance at all. So we have now started her challenge.

We are on day 3 after consultation with her pediatric GI specialist. I don't even really know what to look for. She seems to be doing great. She had a pancake on Saturday, 1/2 whole wheat bread and some Kraft dinner (1/8 cup) on Sunday and a 1/2 waffle today. The only thing I've noticed is her stools are a bit softer than normal but she has soft stools most days and it is not diarrhea.

I know everyone is different but if she was going to react with symtpoms do you think she'd be showing them now? I know that only a biopsy can tell for sure and she could still be symptom free. We'll cross that bridge when we get to it.

She is supposed to have the equivalent of 1-2 slices of bread per day but we are starting out slowly this first couple weeks. She'll see her GI in July for blood work.

I know most of you on here do have kids with Celiac or some sort of sensitivity so if you ever did a challenge did you know right away? Thanks for your help.

Karen, mom to Claire

[mom-to-claire]

bump....

Anyone?????

[Cinnamon]

I'm doing a gluten challenge with my 12-year-old, and so far it's going fine. We don't have a diagnosis of anything since I had already taken him off gluten before we went to the doctor, so it was too late for traditional blood testing. All I knew was that whenever he had gluten, he had scary neurological symptoms as well as a rash. He's been gluten free for a little more than a year. But around Christmastime, he started having some accidents. He accidentally ate some candy that had barley malt in it, and strangely had no reaction. Then he ate the glutenous Red Velvet Cake I'd made for Christmas rather than the gluten free version, and again no reaction at all. Then he started purposely cheating, so I figured now's the time to do the gluten challenge and get some proper testing. He's been gorging on everything gluten since Jan. 5 with no reaction at all. I plan to take him for bloodwork after he's been eating gluten for 3 months.

I'd think you'd start to see symptoms by now if she was going to have them, but everyone is different. Some people take several days to react, some react within minutes. You just have to see how it goes. Some are silent celiacs and have no symptoms at all, so we can't really go by symptoms. I know that when puberty hits, the immune systems matures and certain blocking mechanisms kick in, so it can seem like the child has outgrown the problem when that's not really the case, though at age 3 that wouldn't be the case for your daughter. I'd recently taken all dairy out of my son's diet and had been really strict with it in the days prior to all this, so I wonder if the whole thing was some leaky gut situation caused by dairy. I just don't know.

Well, I hope it goes well for you and your daughter!

[Darn210]

When my daughter was first diagnosed, we went for a second opinion. Her blood test was positive and her biopsy was muddy (depended on which doctor you talked to ). We were already 6 weeks gluten free so it was too late for a second blood test which is what the 2nd opinion doc would have liked to have done. So he recommended to challenge her after she had been gluten free for 6 months and had the blood work that showed she had normal levels for her antibodies. He said that the challenge should last for two months and if at any time she developed any GI symptoms than that was it, challenge was over and go back to gluten free. If after 2 months she showed no problems, then we would recheck her blood test. My daughter failed on day one . . . and it wasn't an intentional challenge, she had just consumed something that clearly had wheat and started reacting within an hour.

So long story short . . . you can see something immediately . . . you can see something later . . . you might not see anything at all and it may show up in the blood test at the end.

If you start seeing some sort of reaction (that you are positive is from her diet), I would contact the doctor to see if you should continue.

Good luck, I hope it goes well for you.