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Should I Let My Non-Celiac Son With Symptoms Have Gluten

shayre

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shayre Enthusiast
shayre
Posted

Hi. I have discovered that I am super-sensitive to gluten, so we have eliminated gluten from our household. I have a husband and 2 small sons who tested negative for celiac disease through blood and biopsies. Both of my children still have some possible symptoms.

I am concerned about my 5 yr old. He has always been very sensitive to food dyes and nitrates, so we feed him mostly organic products. He is highly lactose intolerant. He gets emotional when we run out of vitamins, so I suspect that there might be a deficiency somewhere. He developed acid reflux. So those things make me suspicious about celiac disease, even though his tests were negative. Now he is eating gluten free most of the time, because I cannot have it around me. It is hard on him, because he knows what he is missing. I am wondering, if letting him have gluten when he goes somewhere else is hurting him or not? He and daddy go out for "alone time" and have movie popcorn, pizza or burgers and so on. Or he goes to school and has something with gluten. I am wondering how I will ever know if he has celiac disease, if he only has it on occassion...and is it effecting him? He does not let on that there is anything different after he eats it. Does anyone have advice?

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Mummyto3 Contributor
Mummyto3
Posted

From what I've read, you can be gluten sensitive without having celiac disease. What are his symptoms. How is is when he's gluten free and when he's had gluten? Any differences?

SweetDsMom Newbie
SweetDsMom
Posted

From what I've read, you can be gluten sensitive without having celiac disease. What are his symptoms. How is is when he's gluten free and when he's had gluten? Any differences?

Ditto this.

shayre Enthusiast
shayre
Posted
  • Author

Well, that's where I might be. My problem lies in the fact that I went gluten free before my biopsies and blood tests. I have all of the symptoms of of severe celiac disease, but with no positive results. I have developed other autoimmune diseases that appear to flare up with gluten exposure. I am intolerant of almost all foods. I have severe neuromuscular flare ups, along with many other symptoms. I have a rash that has almost gone away after being gluten free for so long. My genetic test came back "very High". So I'm either a definite celiac patient...or I am on the spectrum. I read the research from Dr. Fasano, and he explained that gluten sensitivtiy on a spectrum with celiac disease at one end. He stated that there are a group of people (like me), with all of the symptoms of celiac disease...but no positive tests. That group of people does improve on gluten-free diet.

I don't know if I have celiac disease or am in that group of people, and this being my concern about my son. He does have one gene for it, but not both like me. He has tested negative, but docs also told me that celiac disease can be very patchy in children. The biopsies might not be taken where there is a celiac disease flare. They also said that his severe lactose intolerance might be an early sign of celiac disease. I am also very lactose intolerant. So that...along with the concerns that I had about him from the 1st post...make me wonder. Is he okay to eat gluten on occasion away from me, and possibly make celiac disease active...but too hard to detect? Or is it better to assume, and make him live his life gluten free? I would almost feel better letting him eat gluten all of the time, so if celiac disease was going to show itself...then it would and we would know. However, I continue to be sick when there is any gluten in the house, so that's just not an option. I certainly don't want him to end up like me!

He has no other symptoms than I listed on the first post, and nothing changes when he has gluten. He is only 5, so his communication about how he feels may or may not be accurate. I have learned to watch for any subtle bodily signs of problems, and he hasn't learned that yet. I also know that there are a lot of children who have celiac disease and no symptoms at all, so that doesn't help me NOT to worry about him. The existing possible symptoms that he does have though make me very suspicious and cautious. If I had celiac disease my whole life, then I had no symptoms until I was in my 20's and got mono. However, I feel that going undiagnosed for so long...might have put me in the situation that I'm in now. I don't want him to repeat that. I guess that there is just no easy answer...sigh:(

sandsurfgirl Collaborator
sandsurfgirl
Posted

From what I've read, you can be gluten sensitive without having celiac disease. What are his symptoms. How is is when he's gluten free and when he's had gluten? Any differences?

In my opinion, if gluten makes you sick you have celiac disease. The testing is faulty and unreliable. There are far too many false negatives. I don't believe one bit in gluten intolerance or gluten sensitivity. The tests are wrong. Until there are more reliable tests so many will suffer needlessly worrying and wondering if they really have celiac or not.

As far as the OP's son goes, I would watch him carefully for reactions. He has an awful lot of health problems for such a little guy. My son is 7 and he is not deprived at all. He gets plenty of gluten free junk foods. There are movie popcorns that are gluten free. I know which theaters to go to.

I keep Betty Crocker cake mixes and cookie mix on hand at all times so I can whip up a batch of cupcakes if we're invited to a party or whatever. I also use Glutino chocolate chip muffins and frost them for a quick cupcake.

I also keep Gluten Free Pantry French bread and pizza crust at all times in my cupboard. I keep mozzarella cheese in the freezer and jars of sauce in the pantry. I can whip up a pizza in 20 minutes flat with those items and it is very good. We were sitting on my neighbor's front porch a few weeks ago with the husband and kids. The wife surprised them with pizza. My gluten eating daughter and husband had pizza with them and my son felt left out. I ran into the kitchen and whipped up a pizza. I had it out to him fresh and hot before they were finished eating.

Glutino and Kinnikinnick make an Oreo type cookie. There are animal crackers. There is just so much out there. I love Schar products. I also keep hot dogs and kinnkinnick buns in the freezer at all times for party emergencies too.

At Cub Scouts they have snacks and I just bring my son his bag of gluten free Oreo type cookies or some other gluten free cookies. He is fine with it. We also have snack every week at our mommy and me Bible study class. I find out what she's serving and bring something similar. Kinnikinnick makes graham crackers too.

My son doesn't like having celiac. He complains occasionally but for the most part he is fine because I make sure he is fine.

One more thing I do is I ask what they are serving at parties or gatherings and I make him the same thing. For our baseball team pizza party I just brought our own gluten free pizza wrapped in foil. It was still hot because I took it out of the oven right before we left and I brought him his own cupcake. At snack for games the parents would often buy the kids hot dogs from the snack stand. The volunteers got to know me because I would go buy him a hot dog with no bun and then sneak it into his snack bag for him.

We had a cub scout dinner where they served teriyaki chicken. I made our own rice and teriyaki chicken with the wheat free soy sauce and it was awesome. I brought it in a container and served us discreetly at the table as everyone else was up getting their food. If you have a big bag like diaper bag size you can bring your food in without making it a big deal.

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