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Gluten-free for over a year and still has major stomach pain

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My son has been on a strict gluten-free diet for over a year.  We are careful and cautious about cross contamination and he is old enough that he self-monitors what he eats really well.  He is still having major stomach pain/nausea/diarrhea.   Although he is very good about his gluten-free diet the rest of his diet is pretty bad.  He does not like vegetables (I struggle to pass judgment on that because he got that from me).  When he has a major stomach episode he will go days without eating anything of substance because he fears starting it all back up again.  He is almost 16 years old and no teenager (no person at all) should have to live like this.  Does anyone have any suggestions or thoughts on what we need to do from here?  His doctor retired and we are in the process of getting in with a new one but just wondering what we should try in the meantime.  Also, recreating the wheel with a new doctor is daunting and I don't even know where to begin in telling our story and what all we've done and tried and been through.  I know they will have the medical records but not sure how much more I need to tell them.  I'm new to this page/forum so would appreciate any help or thoughts. 

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I'm having issues with my 15 year old daughter who is sneaking gluten with her friends once in a while. For her it's mostly about peer pressure and wanting to fit in when certain things are served at a friend's house, or after a soccer practice or game. We've talked about it extensively, yet it continues. I've gotten her to take with her and use GliadinX enzymes, which are not designed specifically for cheating--only small amounts of cross contamination on an otherwise GF diet--but it's far better than nothing. So I bring this up because until about a year ago I also was certain that my daughter was 100% gluten-free...but she wasn't. Is it possible he's in the same boat?

Another possibility is that he's got additional food intolerances, or is getting gluten contamination from somewhere. You might try an elimination diet to find additional food intolerance issues, and re-examine everything he's eating to be sure it's gluten-free.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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I always say with my children that I will never say never :)  It is possible he is cheating but when we have discussed it at length and he is sick as a dog he swears he hasn't cheated because he knows it would do this or worse.  I guess we need to start checking some other irritants.  It so hard when its our kids. 

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It might be helpful to take him back to the gluten-free beginner diet for a few months.  That is a simple diet of limited spices and meats, veggies, nuts and fruit.  No dairy, no oats.  If he gets better on that diet then add one new food every 3 days.  If he has girlfriends they need to brush their teeth before sucking face.  Ewww! :)

Don't forget that some teas and other drinks may have barley for flavoring.

Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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  • 2 weeks later...

Hi Jessica, I have the same symptoms as your son. What I always hear is that the best diet to start, when you don't know what to eat, is a carnivore diet. This will make your digestive and auto-immune disease to calm down. When you achieve this level with a carnivore diet, then you gradually add new things to the diet, to know if your immune system reacts. The best thing is to add, one by one. 

Me personally, the best results I have is when I only eat meat and nothing else. I feel the stress of my digestive system relaxing. The other day, I was really feeling bad and ate only some cold cooked chicken for lunch, and a few hours after, I was feeling much better. I felt a relieve and lower inflammation on my small intestines. 

 

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On 10/19/2020 at 5:53 PM, JessicaFitts said:

My son has been on a strict gluten-free diet for over a year.  We are careful and cautious about cross contamination and he is old enough that he self-monitors what he eats really well.  He is still having major stomach pain/nausea/diarrhea.   Although he is very good about his gluten-free diet the rest of his diet is pretty bad.  He does not like vegetables (I struggle to pass judgment on that because he got that from me).  When he has a major stomach episode he will go days without eating anything of substance because he fears starting it all back up again.  He is almost 16 years old and no teenager (no person at all) should have to live like this.  Does anyone have any suggestions or thoughts on what we need to do from here?  His doctor retired and we are in the process of getting in with a new one but just wondering what we should try in the meantime.  Also, recreating the wheel with a new doctor is daunting and I don't even know where to begin in telling our story and what all we've done and tried and been through.  I know they will have the medical records but not sure how much more I need to tell them.  I'm new to this page/forum so would appreciate any help or thoughts. 

I’ve heard a lot of people with celiac also have trouble eating dairy, because they develop lactose intolerance. If he is still eating that maybe try cutting that out and see if you notice any difference. My friend also had trouble eating the free from food, I think it’s because there filled with sugar. So maybe try basic/natural foods like fruit, vegetables/eggs. A good alternative to dairy is the alpro range. 

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