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What To Do For Pain

mikesgirl1990

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mikesgirl1990 Newbie
mikesgirl1990
Posted

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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Emily30 Newbie
Emily30
Posted

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.

Mizzo Enthusiast
Mizzo
Posted

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

weluvgators Explorer
weluvgators
Posted

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!

mikesgirl1990 Newbie
mikesgirl1990
Posted
  • Author

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.

mikesgirl1990 Newbie
mikesgirl1990
Posted
  • Author

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.

Emily30 Newbie
Emily30
Posted

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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mommyto2kids Collaborator
mommyto2kids
Posted

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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    • AlwaysLearning
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      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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