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Member Since 10 May 2013
Offline Last Active Jan 19 2015 02:48 PM

Posts I've Made

In Topic: Gluten Free, But Tummy Hurts And Has Itchy Legs

06 January 2015 - 04:07 AM

Did your daughter start taking any new vitamins or probiotics around the time or her diagnosis? This was probably just a weird fluke in our case, but the nutritionist at my daughter's GI office recommended a chewable calcium supplement because she couldn't handle much dairy when she was diagnosed, and we were worried about her calcium intake. The supplement was dairy free and gluten free, but it still gave her stomachaches (even when taken with a full meal). At first I assumed the stomachaches were just a continuation of the gluten ones because she hadn't fully healed yet, but they were actually "different" tummy aches from the vitamin instead. She was too young to really describe the pain in detail, so it took a while to figure out. We removed the vitamins and the tummy aches stopped right away, and we did one test a week later and her tummy hurt again within an hour. Fortunately, this had an easy solution! Now we use a lower-dose gummy calcium vitamin, which she tolerates much better.

I don't know about the itchy legs thing, but consider whether any new foods or supplements she started after going gluten free could be a problem. In my own case (as an adult), I started having much more serious reactions to sulfites because my intake suddenly increased due to all the bleached starches in gluten-free flours plus the fermentation in probiotics. It caused classic allergy symptoms for me, including itchy throat and swollen tongue. Many wheat flours are bleached with sulfites too, but I rarely ate breads before, so it was only once I started baking yummy gluten free things that the bleached-flours problem really became apparent. Anyhow, the point is that some other food that your daughter started eating (or eating more of) recently might indicate a totally unrelated problem that just happened to manifest now because her diet changed. Or, of course, it might just be because she's still healing...but if the itchy legs in particular are new, that suggest something else may be going on too.

Good luck!

In Topic: Questions About 6 Yr Old

29 December 2014 - 05:57 AM

To the original poster: Sorry you are going through this. It is so frustrating when a child's doctors keep saying nothing is wrong and you know something is. My daughter had symptoms since very early infancy - GI symptoms, but also lots of behavioral and neurological symptoms, as well as immediate coughing and vomiting after eating, which we thought might be from IgE food allergies for a while. She even saw a pediatric GI specialist as an infant, but he did not test her for celiac. I finally figured it out on my own several years later and had to take her to three different doctors before one would even agree to run the blood tests. The other insisted that she was just having tummy aches from anxiety and that I was overreacting, etc. It was incredibly frustrating, but I am so glad that we kept taking her to different doctors until we found one who listened. We were fortunate that all her tests were positive, so we were not left in limbo; it was just getting the right tests in the first place that took forever. But even if it hadn't turned out to be celiac, the thing that made all the difference for us was finally finding a doctor who took my concerns seriously. I made him promise in advance that if the celiac panel came back negative he would keep investigating other causes, rather than sending us away with false assurances like the other doctors had.

So do persist in getting to the bottom of your six-year-old's problem, whether it's celiac or something else. I am generally not one to be pushy, and I absolutely dread having to made a big scene in public, but that was what it took to finally get a doctor to listen. My daughter was diagnosed just after her fourth birthday, and immediately it was clear that we'd found the root cause of the sensory and neurological stuff (as well as the tummy aches). She calmed down within days, her ability to tolerate frustration increased exponentially, and she stopped bursting into tears every time a minor noise startled her. Things were not all rosy immediately, of course, but the improvements were so dramatic that we knew things would just keep getting better and better with more time. And they have. It was a tremendous relief to finally have a diagnosis.

As nvsmom said, try to get the full panel run on your kids, including the DGP tests. For some reason many doctors still seem reluctant to order those, despite what seems to be pretty convincing evidence that they can be more accurate in young children.

Good luck!

In Topic: Has Anyone Else's Young Child Only Had Chronic Stomach Ache?

19 December 2014 - 04:47 AM

My daughter had stomach aches all the time before diagnosis. She spit up dozens of times a day as a baby too, and eventually had to stop breastfeeding and was put on a super-hypoallergenic formula with no milk derivatives at all (which was also gluten free). That solved the problem until she started solids, then everything went downhill again until she was diagnosed at age 4. She had lots of other symptoms too, though, so that wasn't our only clue. For a long time we thought it was car sickness, though in retospect this makes perfect sense because we often gave her crackers for a snack in the car. Then the stomache aches started happening throughout the day, and he doctor said it was "abdominal migraines" caused by anxiety and insisted that we were worried about nothing! The tummy aches promptly went away after her celiac diagnosis - and she does not get sick in the car anymore, so I doubt she ever had motion sickness.

I also got stomach aches almost every time I ate, as far back as I can remember. They went away once I went strictly gluten free too. My celiac tests were negative, while my daughter's were clear positives.

In Topic: Chef That Wants Your Feedback

19 December 2014 - 04:20 AM

I would love to see more gluten-free products (especially breads, flour mixes, and pizza crusts) without xanthan gum. I bake at home with guar gum all the time and it comes out perfectly fine, but so many commercial gluten-free flour mixes and baked goods use xanthan gum instead. My daughter is fine with it, fortunately, but it makes my mouth burn and my tongue sting. From what I've read on here, this seems to be a fairly common intolerance, so it seems like there would be a market more more gluten-free products that were also free of xanthan gum - like brownie mixes made with guar gum instead, etc. Or just a plain gluten-free flour mix with no binder added!

Also, I second the point about very limited restaurant options for kids. We almost never eat at restaurants, but even the one local restaurant that we trust (which is GIG trained) has good safe options for adults but nothing that's likely to be appealing to kids. It would be so wonderful to eat out as a family just once or twice a year, with food that everyone likes and no worries about cc.

In Topic: Celiac For 1 Year, Having Trouble Eating Almost Anything For The Last Month

22 November 2014 - 04:24 AM

Did these new trouble start before or after you began the multivitamin and probiotic? If they started after, could that be the trouble? I know that probiotics really do help a lot of people, but in my own case they actually contributed to significant problems after I'd be gluten free for a while. I am very sensitive to sulftes, even the naturally-occuring sulfites in fermented foods (aged cheese, vinegar, etc.). I think I'd always had this problem, but I wasn't able to sort out what was going on until after I'd been gluten free for a while and other stuff had cleared up.

Anyhow, many gluten-free flours and high in sulfites (used to bleach starches, etc.), and they're used in manufacturing lots of fruit and vegetable products, drink mixes, juices, and even in dried spices and whatnot. My understanding is that (all?) probiotics are fermented, and so they contain sulfites too. I actually redeveloped clinically-documented fat malabsorption about a year after I went gluten free and started taking the high-quality probiotic that my GI recommended. My GI then recommended doubling the probiotic dose, and the problem worsened. I finally figured out what was going on when I had to stop the probiotic for three weeks to do several hydrogen breath tests - the fat malabsorption got much better and the constant mild nausea I'd had also went away. Symptoms returned when I reintroduced the probiotic!

I know this is unusual, and probiotics certainly help many people. But if your problems worsened after starting the probiotic (or vitamin), it might be worth stopping it for a few weeks to see if it makes a difference. In my own case, I think my body was struggling to process the normal sulfites I was eating in vinegar and yogurt, etc., and adding the fermented probiotic was just too much for my body to handle.

Good luck, and I hope you feel better soon!