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Is It Possible To Become Sicker After Going gluten-free?
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I'm posting about my 6 yr old who is not diagnosed with celiac disease (my 10 year old does have celiac disease). My 6 yr old is having a ton of tummy problems that I've been posting about here. Recently, our doctor put her on a gluten-free diet to see if it would stop any of her problems. She has daily stomach aches that we treat with Bentyl (which seems to help and it's the only thing). She also takes an antacid AFTER eating (which also helps her stomach). We can't seem to change the Bentyl to anything else without it being a problem. And we can't remove the antacid either without a problem to her stomach.

She had daily diarrhea that would happen within half an hour of eating dairy, so we removed most of it (milk, butter, sour cream, ice cream). We noticed diarrhea also with fruit juice so we removed that too. Our gastro told us to try the gluten-free diet again and see if it worked better without the other things in it. We went gluten-free on Monday and by Wednesday her diarrhea was gone. The school accidentally (sigh) gave her a cupcake on Friday and she had diarrhea that day and Saturday. She's had no diarrhea ever since.

However, since starting the gluten-free diet, she's felt queasy. This has increased to the point of feeling more and more like she would throw up. Yesterday, she threw up after breakfast and lunch. She ate only a small amount for dinner and was able to keep it down. It's not large amounts of vomiting like one would see with a stomach bug and it only happens when she eats a meal. She had horrible stomach aches this morning until she took her medicine. Then she felt fine for about thirty minutes and now (having had breakfast) feels like she is going to throw up again. I would swear that she is not ill but she's also exhausted yesterday and today. She fell asleep on the way home from school and stayed in bed until dinner.

I know that there are no trace amounts of gluten getting in her food as my other daughter is VERY sensitive to gluten. They're eating the same things.

Any ideas? I think I'm giving up and getting a scope because her stomach aches are increasing on the gluten-free diet and the vomiting seems to be a pattern. I don't know if I can send her to school until the vomiting clears. She's home today. I'm most puzzled by why she is worse (but better) on a gluten-free diet.

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I know that there are no trace amounts of gluten getting in her food as my other daughter is VERY sensitive to gluten. They're eating the same things.

Any ideas?

One thing we've run into with both my children and my friend's celiac 2 year old is that you can be sure there are no trace amounts of gluten in her food, but that doesn't mean there are no trace amounts of gluten getting into HER.

My friend's 2 year old has had a terrible time of things, because he puts his hands in his mouth all the time (normal, right?). But he touches the table top that had gluten on it and hadn't been cleaned yet, or the arm of the couch where granpa sat eating a cupcake and then set his glutened hand down on the fabric, or the door knob or cupboard door someone touched after they ate a pretzel, and so on and so forth. As soon as his little hands touch these things and get a little contaminated, they go in his mouth, and he's sick.

His mom was working on figuring it out when they came to stay with us for a few days (we have a gluten-free household). Suddenly, the little one was fine, no problems. Back in the shared house, he was having issues again. They have now tried to get super, super careful with treating gluten like raw meat - no one touches it without washing their hands afterward, and wiping down anything they've touched with glutened hands. That's helped.

When my daughter was 11, she still had this issue, too. She would go to a sleepover and get sick almost every time. The only thing that helped was for her to NEVER put her hands in her mouth, or on her food, without washing immediately before. Because she'd do things like, say, wash her hands, eat her gluten-free food, and in the middle of eating she might touch a remote control that was gluten contaminated. She wouldn't think about it, might only touch a little of her food afterward, like lick a finger than accidentally got some sauce on it, but that's all it would take.

With a 6 year old, I imagine she probably puts her hands in her mouth fairly frequently, yes? Lick off a finger, chew on a nail, that sort of thing?

Also, do your kids use the same shampoo, soap, toothpaste and such? Does your 6 year old swallow more of these substances than your other daughter, maybe? Or more of it gets in her mouth as it's rinsed off?

Does your 6 year old kiss people on the cheek more than your other daughter? Anyone using lotion or makeup with gluten that gets a kiss might gluten her. Does she let any dogs or cats lick her on the face? Most pet food is full of gluten and she can get glutened by animals that way, too.

Another potential issue - and this is one that got me - is she could have other food issues. I NEVER knew I had problems with other foods. I get no hives, no rash, nothing like that, only gut upset (now, anyway). But some of the foods I react to are more prevalent in gluten-free foods, so I started getting sicker when I went gluten-free. :huh: Also, for many of us, it's like our body didn't have the resources to react to these problem foods when we couldn't absorb nutrients. But once we go gluten free, our body suddenly has the resources to muster a response, and we start noticing problems with other foods. Very weird, honestly.

Some of the foods that seem to cause problems, and can be more prevalent in gluten-free foods, are:

sugar cane - it's typically less processed in gluten-free foods, the evaporated cane juice instead of processed sugar, and so more of the allergens are present.

gums - xanthan gum, guar gum, arabic gum, etc.... are known to cause gut upset in some people, and there are a lot more of them in most gluten-free foods. Xanthan gum especially is known for tummy issues.

Eggs and/or dairy - both often in higher quantities in gluten-free foods, and often an issue for folks.

tapioca - used as a binder, some people react to it. Can be listed as tapioca starch, tapioca flour, cassava flour, or cassava starch

potatoes - also used as a binder, so it's most often potato starch or potato flour. Some celiacs seem to develop issues with anything in the nightshade family (bell and chile peppers, eggplant, and potatoes).

Some other foods that seem to be commonly reacted to around here are soy and corn, or even most grains. It might be worthwhile keeping a food journal to see if you can notice any pattern with what she's eating and when she's reacting. Sometimes, it may not be able to tell you what exact ingredient she's reacting to, but if it could at least narrow it down to a few suspicious products, that would help, yeah?

It might help to note down where she goes, too. That's what helped us with my daughter, when I finally realized all her worst reactions were when she was visiting houses with gluten in them.

Good luck, hope your little one is feeling better soon!

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Thanks for the suggestions. It's possible that she is receiving cross contamination based on your list.

Our doctor has removed all diets and medication and she is going in for a scope in two weeks. She was so exhausted after school that she fell asleep right afterwards.

I'm not really sure how she will make it the next two weeks.

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my daughter was diagnosed "probable" celiac at 17 months old. (she was too ill to get the scope done.) She was on the gluten free diet and everything was great until she turned 6. Then the symptoms got worse than a usual glutening and she started vommitting up to 5 times a day. Not a lot vomit, small amounts after meals mostly. She was scoped and diagnosed with Eosinophilic Esophagitus.

It is possible to have more than one medical condition and/or to have more than one food "intolerance or allergy".

The scope was done to rule out a number of other things. I.e. parasites, H.Ploryi., hernia, physical defect, and a few other things.

Good luck to you and your little one for further testing. Keep a food journal to see if any other pattern shows up for a food intolerance and to keep monitoring symptoms.

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Have you tried a very restrictive diet to see how she responds to certain foods? perhaps have a full day where she eats nothing but chicken. No vomit? Add potato on day 2. No vomit? Add red meat on day 3. etc. This helped me as an adult get through a variety of issues that came up post celiac and after many celiac symptoms cleared on the gluten-free diet.

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Look up Fructose Malabsorption (different from fructose intolerance). Two of my children with Celiac had a similar experience as your six year old and we finally found out about FM and it took care of the lingering symptoms like throwing up.

Some people have to go on the FODMAP diet, but some just have to limit the amount of fructose at a time and the overall amount in a day.

We ended up only having to take fructose out of the kids diet, but I have to be on the FODMAP diet.

Fructose is high in thing like apples and apple juice, other fruits and veggies and in prepared foods when you see honey or high fructose corn syrup in the ingredients list. There is some info about it on this web site in the forums.

Hope you can figure out what is going on.

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It does sound like fructose malabsorption is a possibility. My Mom has it. A very simple diet of meat, potatoes, white rice, and leafy greens for a few days might help you decide if fructose malabsorption is a problem. She sounds so sick I'd be inclined to stew a chicken and give her broth and a little rice at first. (Don't put onions in if you're trying to see about fructose.)

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Thanks for all the suggestions. I'm making a list to discuss with our gastro before our appointment. I truly apologize for not replying to this thread earlier, but I've had another daughter crop up with some medical issues that has me a bit side-tracked. My pediatrician thought the Eosinophilic Esophagitus was possible and is hopeful that the biopsy will offer up some answers.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
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