Jump to content

Follow Us:  Twitter Facebook RSS Feed            

   arrowShare this page:

   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiac.com Sponsor:                                    


Member Since 10 May 2013
Offline Last Active Feb 23 2015 03:03 PM

Posts I've Made

In Topic: Peripheral Neuropathy

13 February 2015 - 04:07 AM

Has your magnesium level been tested? I do not have a clear disgnosis myself, but after decades of symptoms and a daughter who has been officially diagnosed with celiac, I've had immense and life-changing improvements on a gluten free diet. Anyhow, one of my earliest problems was awful hand cramps as a kid. I'm right-handed and it was always worse in my left hand, so it's not like it was from overuse. Then, as a young adult I got this awful tingling/buzzing feeling in one leg. It felt like little seltzer bubbles were constantly popping in my veins - not really painful, but very distracting and unpleasant. It was intermittent at first, but after several years it became constant. I had that electrical stimulation nerve test (I forget what it's called) and it came back normal. I had other balance and coordination problems too, but the buzzing in the leg was distinctive. Of course, none of my doctors at the time even considered the possibility that it could be related to my GI problems and other unexplained symptoms.

But, years later, magnesium supplements cured the tingling and hand cramps! It was amazing. Looking back at old medical records, I actually had tested low in magnesium several times during ER visits years previously. But no one thought it was important, other than to recommend a multivitamin and then laugh and insist I must be mistaking a children's vitamin for an adult one (!) when I said I was already taking one. It wasn't until someone on this forum recommended looking into the magnesium issue a couple years ago that I found my old test results and realized I had a long-documented history of magnesium deficiency. The tingling lessened within weeks when I started on Cal-Mag supplements, and it went away completely in less than a year. My most recent magnesium test was within the normal range while still on supplements. If I stop for more than a few days the tingling comes back, but I no longer take it daily.

Of course, I wouldn't recommend randomly supplementing things without knowing whether you need it. But if you can get your doctor to check magnesium as well as B12, it might be useful. (Like cyclinglady, I too actually had high B12 for unclear reasons, so taking more of that would have been inadvisable for me.)

Good luck!

In Topic: Question About Symptoms Taking The Gluten Challenge

30 January 2015 - 02:40 PM

For what it's worth, I'd point out that severity of symptoms during the gluten challenge doesn't necessarily correlate with test results at all. I'd been gluten-light for about 15 years before testing, probably having bread or pasta twice a week on average, plus tiny amounts of gluten in seasonings and whatnot most days. I wasn't specifically avoiding it, but I'd just learned over time that I felt awful whenever I ate bread or pasta. Then I was totally wheat-free for several months (suspecting a wheat allergy) but cooked with barley flour occasionally. I was only completely gluten-free for a couple weeks, then forced myself to eat one slice of bread per day for about six weeks before testing. My doctor assured me that this was "plenty".

I know that others may see the gluten challenge as a last opportunity to "enjoy gluten foods you love" and eat as much as you want, but I absolutely hated it and felt horrible. There is no gluten food that I loved. I had to lay on my office floor for hours after my one slice of bread every day - it was worse to have it at night because then I didn't sleep at all. My hair fell out in handfulls in the shower every morning. I am a thin person but gained 15 pounds in two weeks while hardly eating anything at all (because I felt so sick). I couldn't sleep more than two hours and soaked my sheets with awful-smelling sweat half a dozen times every night. During this time my daughter was diagnosed with biopsy-confirmed celiac. In other words, all evidence pointed toward celiac for me too... But my blood tests and biopsy were squarely negative!

Unless medical science advances, I too will never know whether my tests were false negatives. There's no way I'm ever going through that again! Going completely gluten free was just as life-changing for me as it was for my daughter, yet she had a textbook celiac diagnosis and I had awful symptoms (which improved immensely as soon as the gluten challenge was over) but no clear diagnosis. The point is that symptoms don't necessarily tell you anything about what the test results will be.

Good luck - I hope you get a clear answer one way or another!

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.