Should We Be Here?

[Justus7]

This is my firstpost, so apologies in advance for the long-windedness...

I am suspecting that my 7yo may have celiac. All bloodwork has been negative, we have seen a GI who wants to rule out eosinophilic esophagitis with a scope on 5/6.

Here are my sons symptoms:

6.5yo 42# (gained 6# last month courtesy of Ensure plus twice a day-800 cal total)

Diagnosed at 2.5 with Austism spectrum disorder (speech delay, pt delays)

Still on IEP for speech issues, poor retention, and attention issues

Diarrhea followed by constipation-has been on Miralax numerous times to help him

Cradele cap/Eczema on knees, elbows, head-not responding to treatment

Looks tired all the time, still naps 3 hours a day on the weekends-still has bags under his eyes

Picky eater (like 3 bites for dinner)

Stomach Aches

Joint Pain

Anemic

Also-his younger (5.5yo) brother has the same autism diagnosis as well as skin issues. He's been allergy tested(+for corn allergy) Although we never changed diet because according to the allergist "he likes popcorn and eats fruit snacks-it should be okay" Im thinking I may want to retest with a new allergist!

Any tips? Is celiac a possibilty? Any help/advice would be great!

Thanks!

Carrie

[betsy7]

Most doctors wouldn't prescribe a gluten-free diet until a child has both positive bloodwork and a positive endoscopy. They explain that the diet is strict, expensive, lifelong and that it's unfair to put a child on the diet without a full diagnosis. In my opinion, these doctors are also waiting for your child's body to get sick enough to pass their tests. The reality is that the gluten free diet is a healthy diet (and much easier/less expensive to follow than a few years ago). It won't hurt to try the gluten free diet for your sons. Maybe they are gluten intolerant. Maybe they are developing Celiac disease and won't yet test positive. You'll be able to see how their bodies react when you try it. I would recommend also going diary free as dairy is often a problem for people who are newly diagnosed with Celiac disease. My husband's doctors (one of the best Celiac specialists in the country) recommended staying dairy free for at least 6 months. The symptoms that you described are all symptoms of Celiac disease. Everyone's symptoms are different. Some people don't have severe symptoms, but upon diagnosis can look back and realize that they have always had reactions (this was the case with my husband who was diagnosed in his thirties). Other are very, very sick and the diet dramatically improves their quality of life. It's worth a try and this forum is a great place to navigate the diet. It seems really tough a the beginning. But, if you find several meals that your boys will eat, it won't be that difficult.

This is my firstpost, so apologies in advance for the long-windedness...

I am suspecting that my 7yo may have celiac. All bloodwork has been negative, we have seen a GI who wants to rule out eosinophilic esophagitis with a scope on 5/6.

Here are my sons symptoms:

6.5yo 42# (gained 6# last month courtesy of Ensure plus twice a day-800 cal total)

Diagnosed at 2.5 with Austism spectrum disorder (speech delay, pt delays)

Still on IEP for speech issues, poor retention, and attention issues

Diarrhea followed by constipation-has been on Miralax numerous times to help him

Cradele cap/Eczema on knees, elbows, head-not responding to treatment

Looks tired all the time, still naps 3 hours a day on the weekends-still has bags under his eyes

Picky eater (like 3 bites for dinner)

Stomach Aches

Joint Pain

Anemic

Also-his younger (5.5yo) brother has the same autism diagnosis as well as skin issues. He's been allergy tested(+for corn allergy) Although we never changed diet because according to the allergist "he likes popcorn and eats fruit snacks-it should be okay" Im thinking I may want to retest with a new allergist!

Any tips? Is celiac a possibilty? Any help/advice would be great!

Thanks!

Carrie

[Jestgar]

Most doctors wouldn't prescribe a gluten-free diet until a child has both positive bloodwork and a positive endoscopy. They explain that the diet is strict, expensive, lifelong and that it's unfair to put a child on the diet without a full diagnosis. In my opinion, these doctors are also waiting for your child's body to get sick enough to pass their tests. The reality is that the gluten free diet is a healthy diet (and much easier/less expensive to follow than a few years ago). It won't hurt to try the gluten free diet for your sons. Maybe they are gluten intolerant. Maybe they are developing Celiac disease and won't yet test positive. You'll be able to see how their bodies react when you try it. I would recommend also going diary free as dairy is often a problem for people who are newly diagnosed with Celiac disease. My husband's doctors (one of the best Celiac specialists in the country) recommended staying dairy free for at least 6 months. The symptoms that you described are all symptoms of Celiac disease. Everyone's symptoms are different. Some people don't have severe symptoms, but upon diagnosis can look back and realize that they have always had reactions (this was the case with my husband who was diagnosed in his thirties). Other are very, very sick and the diet dramatically improves their quality of life. It's worth a try and this forum is a great place to navigate the diet. It seems really tough a the beginning. But, if you find several meals that your boys will eat, it won't be that difficult.

I agree with everything in this post.

Don't change diets until you are done pursuing testing, but after that, take all grains, milk, soy, anything you think might be a problem, out of their diets and see what happens. If they aren't intolerant to the foods you remove, adding them back in later won't be an issue.

[Justus7]

Thanks!

I am going to switch products over as we run out of them. The way I stock my pantry it will be a good 6 weeks or so before we need anything!

We have our scope on 5/6 and allergy testing 5/10. The feeding team can't get us in until July 14th! Ughhh I think I'll start to switch over in June after school is over. It can only get better, right?!

Thanks again!

Carrie