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footballmomx2

Celiac And Other Medical Problems

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My son was diagnosed 4 years ago, at first he refused to eat gluten free; now he knows if he eats it he will hurt. However, he has been gluten free for some time now but he still has pains; sometimes so severe he cant function. The last doctor he went to wants to give him medicine for IBS, this doesn't seem to help much though. His blood work said his liver enzyme level was slightly elevated on top of everything else. I just wanted to know; has anyone had this before?

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I think people will want some additional info.

How old is he?

Does he have any other food intolerances?

Has he eliminated other foods to see if it helps? Things like dairy or soy?

Been tested for anything else? had his gall bladder out?

What ever other info you can think of.

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Is the house gluten free? If it is a mixed house make sure you are taking the precautions needed for him to be safe. If he is in school or goes to a sitters make sure that they are being just as careful.

Also be sure stuff like the clays, paints, glues etc that he may use for arts and crafts are gluten free.

He could also have another intolerance, soy and dairy being the most common. You could eliminate both and then when he feels better add them back in for a week, one at a time, and see if his problems return.

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Some additional information; my son is 14 years old; he was born 3 months early weighing only 2# 4oz; but now he is 5'9" 250# and is in football and wrestling. I do have a mixed food household; but I take so much extra precaution on cross contamination you would think I had two kitchens. I spend 2 hours at the grocery store constantly reading labels and googling food products. However, I have not tried removing soy or dairy yet, I thought just after being diagnoised with IBS on top of Celiac's that I didnt want to upset the apple cart; but I guess I should stop feeling sorry for him and do it. He doesnt eat at school (which I want him to take his lunch) because he is afraid he will hurt. He has had so many tests done, no gallbladder problems, and the only thing wrong with blood work was his liver enzyme level. It's just getting very frustrating for me so I know it is probably many times worse for him.

Is the house gluten free? If it is a mixed house make sure you are taking the precautions needed for him to be safe. If he is in school or goes to a sitters make sure that they are being just as careful.

Also be sure stuff like the clays, paints, glues etc that he may use for arts and crafts are gluten free.

He could also have another intolerance, soy and dairy being the most common. You could eliminate both and then when he feels better add them back in for a week, one at a time, and see if his problems return.

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Some additional information; my son is 14 years old; he was born 3 months early weighing only 2# 4oz; but now he is 5'9" 250# and is in football and wrestling. I do have a mixed food household; but I take so much extra precaution on cross contamination you would think I had two kitchens. I spend 2 hours at the grocery store constantly reading labels and googling food products. However, I have not tried removing soy or dairy yet, I thought just after being diagnoised with IBS on top of Celiac's that I didnt want to upset the apple cart; but I guess I should stop feeling sorry for him and do it. He doesnt eat at school (which I want him to take his lunch) because he is afraid he will hurt. He has had so many tests done, no gallbladder problems, and the only thing wrong with blood work was his liver enzyme level. It's just getting very frustrating for me so I know it is probably many times worse for him.

Do try eliminating the soy and dairy as that may help a great deal. I also thought I should mention that wonky liver enzyme panels are really common for us and usually will normalize after time.

Is there anything he knows he tolerates well? Even if it is just a piece of fruit and a few Snyders pretzels it can help him get over the fear of eating outside the home. I know well how much he fears having a reaction at school as I feared the same thing. When I finally took the rest of my classes last year every lunch was Udi's bread and pnut butter as I knew for sure it was safe. It was boring but at least I had some calories and nutrients to help me get through the day.

I hope he is feeling better soon.

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Can you tell us more about the pains he is having? Where is it - general or specific? What type of pain (achy, pinpointed at a particular area or burning for example)?

After any particular food or meal?

How long has been strictly gluten free? (no judgments on here, it took me a while too get serious about gluten-free. My 9y/o son is horrified at the thought that he too might have to go gluten-free :unsure: )

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The pains are sometimes sharp and usually then the way he explains to me are like cramps; the pains are in the middle of his stomach. Strictly gluten free as far as I know 4-5months. I know he went out to eat with someone and inquired whether about a certain menu item and he was told it was gluten-free; however the pain started later that day so I googled the place and found that the item was not gluten-free. This has happened more than once; so if he goes out now, he gets more specific with the waiter/waitress and even sometime the manager.

Can you tell us more about the pains he is having? Where is it - general or specific? What type of pain (achy, pinpointed at a particular area or burning for example)?

After any particular food or meal?

How long has been strictly gluten free? (no judgments on here, it took me a while too get serious about gluten-free. My 9y/o son is horrified at the thought that he too might have to go gluten-free :unsure: )

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Okay, just throwing out ideas here.

It sounds like the pain is the same as when he's accidentally ingested gluten? Might indicate that gluten is the issue, slipping in somewhere. Not always, but it might be worth looking at along with the soy and dairy.

What is his typical diet? Does he eat a lot of processed gluten-free food, or more 'whole' foods like fruits/veggies/meats? Does he eat gluten-free oats or products containing gluten-free oats? In the shared house, does he have any dedicated equipment? Shared collanders, cutting boards, anything with wood, or some types of pans have a higher gluten cc risk due to the difficulty in cleaning, or their porous nature to gluten where they can release gluten back into food that comes into contact with them.

One of the things we had trouble with was gluten that DIDN'T come from food, but still got into our mouths. For example, does your son have a girlfriend? Kissing someone who eats gluten can get you contaminated. Does he chew his nails? If he uses lotion with gluten and chews his nails or frequently licks his fingers while eating, that could get him glutened. Does he wash his shampoo down the front of his face? If he gets some in his mouth, that can gluten him, too, if it contains gluten. There's some weird and wacky places this stuff can crop up.

...hmmm, he's in sports that use mouth guards, yeah? Do they each only use their own mouth guard, or are there some that are sterilized and used by more than one team member? If they are made of plastic, that can also be porous to gluten and while sterilization may kill germs, it may not destroy the gluten. It would depend on the sterilization technique used. Again, I don't know much about how that all works, just trying to think of things that might be going into his mouth, you know?

For his size, I imagine he has to eat a fair amount of food. If he eats a lot more processed gluten-free foods, there's a possibility that he could be getting too much gluten even though he's eating gluten free. Gluten free foods typically contain below a certain concentration of gluten, but not necessarily zero gluten. But because it's a concentration, the more one eats, the more gluten one has the potential to consume.

It's low levels, obviously, but I'm thinking of the teenage boys I know who are muscled, in sports, and that size, and they eat a LOT of food. I could see him going over his gluten threshold if he consumes a lot of gluten-free processed foods in his diet. For my daughter, this tends to build up, where she can have one gluten-free food, but if she has too much within about 24 hours, she'll have gut pain and then it's like her tummy becomes sensitive for a while and just hurts at the slightest provocation.

Another possibility could be that your son is an oat sensitive celiac, where one reacts to all oats, even gluten-free ones (about 10-15% of celiacs seem to be this). It's called avenin sensitive enteropathy. If this was the case, some gluten-free processed foods may make him sick. Some because they contain gluten-free oats. Some because they do not have the same cc prevention practices in place for gluten-free oats as they do for wheat, rye, and barley. Bob's Red Mill and Lundberg rice are two companies that oat sensitive celiacs have reported having trouble with. Red Mill processes gluten-free oats in their facility, and Lundberg rice has gluten-free oats as a cover crop for their rice.

And that's all I've got, off the top of my head. Hope you find the answers soon so he can start feeling better!

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I thought just after being diagnoised with IBS on top of Celiac's that I didnt want to upset the apple cart; but I guess I should stop feeling sorry for him and do it.

Oops, almost forgot, the IBS! Irritable Bowel Syndrome is really more a set of symptoms than a disease, from everything I've read. If the problem were your son's lungs, this type of diagnoses would be like saying your son has 'lungs that are prone to coughing.' It doesn't really tell you anything at all about what's causing the 'irritability.'

If the GI doc isn't currently recommending tests to find out what IS causing the irritability, shame on him. Although perhaps I'm mistaken and this is currently ongoing?

Crohn's disease, parasites, H. pylori infection in the gut, food intolerances and allergies (that don't cause hives, just intestinal trouble), fructose malabsorption - they can ALL cause IBS symptoms. Even a sensitivity to the food dye annatto can do that ( http://www.ibsnomore.com/annatto-food-list ). So again, if your son's doc didn't test for any of these, or at least SOME of them, before slapping on the IBS label, if I were in your shoes I would seriously consider finding a better doc.

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Taking your son off dairy as a trial effort might be a good idea. There are other food items that can give some issues besides dairy and soy so keep these in mind:

High fructose (in some ketchup, BBQ sauce, candy, some drinks)

Carrageenan (in ice cream, whip cream, lactose-free milk)

Xanthan gum (in candy, ice cream, and many gluten-free foods, some coconut milk)

Guar gum (in lactose-free dairy products, ice cream)

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Thank you, some things I hadnt thought of before. Whew!!!!

Oops, almost forgot, the IBS! Irritable Bowel Syndrome is really more a set of symptoms than a disease, from everything I've read. If the problem were your son's lungs, this type of diagnoses would be like saying your son has 'lungs that are prone to coughing.' It doesn't really tell you anything at all about what's causing the 'irritability.'

If the GI doc isn't currently recommending tests to find out what IS causing the irritability, shame on him. Although perhaps I'm mistaken and this is currently ongoing?

Crohn's disease, parasites, H. pylori infection in the gut, food intolerances and allergies (that don't cause hives, just intestinal trouble), fructose malabsorption - they can ALL cause IBS symptoms. Even a sensitivity to the food dye annatto can do that ( http://www.ibsnomore.com/annatto-food-list ). So again, if your son's doc didn't test for any of these, or at least SOME of them, before slapping on the IBS label, if I were in your shoes I would seriously consider finding a better doc.

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these food allergies are tiresome and very much complicated. Thanks for the ideas.

Taking your son off dairy as a trial effort might be a good idea. There are other food items that can give some issues besides dairy and soy so keep these in mind:

High fructose (in some ketchup, BBQ sauce, candy, some drinks)

Carrageenan (in ice cream, whip cream, lactose-free milk)

Xanthan gum (in candy, ice cream, and many gluten-free foods, some coconut milk)

Guar gum (in lactose-free dairy products, ice cream)

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footballmum,

It can be very overwhelming. Hang in there. Ask LOTS more questions and test/experiment LOTS. You WILL get there. Just takes a lot of effort and energy. Keep yourself well too.

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Although I've known about my problems with wheat, dairy and sugar for 35 years, it's only been recently that I realized they were causing the many symptoms I've been experiencing over the years. I thought my problem was whole wheat and didn't know about gluten until recently. As I learned about gluten and made the changes to my diet, my dairy intolerance jumped to the front! My symptoms from dairy sound very much like your son's symptoms and once I eliminated dairy completely, the difference was amazing!

That said, everyone here has given you a lot of good advice about foods and other things to check out. I wish you quick results and that your son will finally be able to enjoy his days without fear of pain.

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