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Hi, I am new to gluten free cooking etc for our son. We have not done any tests other than tests to rule out most other health issues. My son, who is 9, has severe gut wrenching cramps/pain. We have a family history of wheat intolerance coupled with the fact he has this horrible pain, our doctor opted to take him off gluten and see how he reacted. (Just so happens his wife and best friend are gluten intolerant or have celiac disease, so he has a pretty good practical knowledge of the testing etc) We have had a couple days here and there where he has felt well-that has been nice! Then he will accidentally get gluten, either from my ignorance (steep learning curve but I am trying to learn it fast) or cross contamination at grandmas/ restaurant etc! Then he feels lousy!!!

At the moment he has a prescription for hycosamine(SP?). It helps a little with his pain. He was given librax by another doctor, it worked really well, unfortunately wasn't covered by the insurance! However, we are thinking of buying it out of pocket, just to get some relief. Does any one else use this! Hopefully soon we will be savvy/careful/educated enough so that he isn't exposed to gluten. But in the meantime if he gets gluten even in cross contamination he is in bed for the better part of two days in pain off and all day! And the rest off the time he lives in fear of eating in case the pain starts again! It makes play dates or time at grandparents, eating out etc almost impossible!!

So that is a little background to his story...the question is- if you have a child with severe pain, what are your pain management strategies??? As the stomach started to heal did you notice a little better tolerance to cross contamination issues, or will the pain always be like this??? Also we have a trip coming up that includes a long flight----any suggestion for eating while we travel!! I will pack snacks etc, but thought it would be helpful to know some kid friendly frozen meals that I could take and have a stewardess microwave for us??? Thanks in advance!!

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my 3.5 yr old has awful pain when he gets glutened. I havent found anything that seems to help. Pretty much I just let him lay on the couch and relax, watch tv, etc... In the beginning we had terrible issues with cross contamination but as he becomes more aware and cautious it happens less and less.

For meals on the go, I like to do jerky and cheese sticks. But if you want something frozen, Annies Mac and Cheese is good-my kids like the rice shells and white cheddar. You could take a hot dog and some corn and freeze it all and that would probably work. I would check with the airline in advance and make sure they would be willing to do that though. Good luck.

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Hi, I am new to gluten free cooking etc for our son. We have not done any tests other than tests to rule out most other health issues. My son, who is 9, has severe gut wrenching cramps/pain. We have a family history of wheat intolerance coupled with the fact he has this horrible pain, our doctor opted to take him off gluten and see how he reacted. (Just so happens his wife and best friend are gluten intolerant or have celiac disease, so he has a pretty good practical knowledge of the testing etc) We have had a couple days here and there where he has felt well-that has been nice! Then he will accidentally get gluten, either from my ignorance (steep learning curve but I am trying to learn it fast) or cross contamination at grandmas/ restaurant etc! Then he feels lousy!!!

At the moment he has a prescription for hycosamine(SP?). It helps a little with his pain. He was given librax by another doctor, it worked really well, unfortunately wasn't covered by the insurance! However, we are thinking of buying it out of pocket, just to get some relief. Does any one else use this! Hopefully soon we will be savvy/careful/educated enough so that he isn't exposed to gluten. But in the meantime if he gets gluten even in cross contamination he is in bed for the better part of two days in pain off and all day! And the rest off the time he lives in fear of eating in case the pain starts again! It makes play dates or time at grandparents, eating out etc almost impossible!!

So that is a little background to his story...the question is- if you have a child with severe pain, what are your pain management strategies??? As the stomach started to heal did you notice a little better tolerance to cross contamination issues, or will the pain always be like this??? Also we have a trip coming up that includes a long flight----any suggestion for eating while we travel!! I will pack snacks etc, but thought it would be helpful to know some kid friendly frozen meals that I could take and have a stewardess microwave for us??? Thanks in advance!!

You are the first person I heard say they got a pain medicine that worked (other than obvious one ie: percocet etc..) . I am going to check on that. Our experience is that the stomach pains lessened as my DD ate less gluten and healed (makes sense) however we can tell within hour/s when she get CC'd for her symptoms are Diarrhea and cramps. It is a lighter reaction but it's also a smaller cc as opposed to full gluten exposure. It took us a good 2 months before symptoms subsided after going gluten free. Major problems reduced in a few days to 1 week but all the cramps, behaviuor issue's and Diarhhea took longer. We were told a good year for her Villi to heal as they were totally atrophied (text book case they said ). Going on year 2 and I can say it probably took about that long.

You didn't say how long you have been Gluten free or if your house is gluten-free but it does take a while.

good luck

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We use belly massage to help with pain. We have also used heating pads in the past for severe cramping. For plane trips and travel we like to pack thermoses with warm foods and carry them in insulated containers. Steak (chopped up so no cutting is required to eat), potatoes and salad are one of the easier ones that work well for us. If you want dressing for the salad, you can pack it in a small toiletry sized container per airline regulations. We usually bring our own paper dishes, paper towels/napkins and plastic cutlery. We also have reusable cloth placemats and napkins that we travel with, but disposable seems to work better when we will be travelling for an extended period. I would not expect a stewardess to be able to safely prepare our food. Our last long flight was super long, and we ordered gluten/dairy free meals that were offered. That worked out reasonably well, but I was disappointed that oats were served with one of the meals . . . and that was on a flight to Australia . . . I thought they would have known better.

Washing hands well before eating is very important to us when travelling, and we find that it is best to use our own soap. We have been on a plane before with soap containing wheat in the lavatory, so we find it better to be prepared with our own!

I hope that your son is feeling consistently better soon!

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Emily 30 thank you for your reply!!! can you tell me what beef jerky you buy? my son does like that really well and would be good for our flight to england.

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thank you for your reply! we have been gluten free about a month! My mom and brother are both gluten free, so you would have thought I would have been able to go gluten free easily! But I still made loads of cross contamination mistakes the first couple weeks! So hopefully we will start seeing less problems! The medication was given to us at the emergency room before we knew what was causing the pain! The doctor there said he had a spastic colon and librax is one of the meds prescribed for that! It is two meds in one---one for stomach spasms and a valium type thing for the anxiety that comes with the pain.

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I cant remember the brand name off hand. But if you are in the US, they sell it at walmart in the chip aisle with all the other jerky. Its Turkey sausage and it says gluten free right on it. I have bought many different types of beef and turkey sausage many times at different stores and brands and as long as it says gluten free on it I have never had a problem. I dont do pork because I have heard its hard to digest and my poor guy has enough troubles with digestion as is.

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I can't digest beef. I get sick every time. You'd think I'd learn. My son rolls on the floor in pain with spicey food like beef jerkey so be careful. Hope you find what works.

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