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Member Since 10 May 2013
Offline Last Active May 14 2015 02:47 AM

Posts I've Made

In Topic: Still Abnormal Fat Malabsorption After 13 Months

13 May 2015 - 03:33 AM

Update: Well, I'm kind of happy to report that all of this led to as close to a diagnosis as I'm ever likely to get! As I've written in a separate thread at http://www.celiac.co...cause-ttg-rise/
my daughter (with biopsy-diagnosed celiac) recently had a doubling of her tTG for no apparent reason. One thing led to another, and I eventually discovered three certified gluten free products that we were using that contained tiny amounts of trace gluten, less than 20ppm. Two were flours and one was a spice. We only used small amounts of these - and again, they were certified by the GFCO and not mislabeled by FDA standards. We're talking really tiny amounts here! But I removed these products from our diet, and just three weeks later my daughter's tTG had fallen again. Her local GI and a celiac specialist at a reputable children's hospital have both agreed that the trace cc less than 20ppm is almost certainly the cause of her tTG rise.

And the thing is that my fat malabsorption went away once we eliminated these too! I haven't had the fecal fat test redone, but the problem is obviously solved, and everything seems completely normal - for the first time in as long as I can remember. I am thrilled. My own GI looked at this evidence, after having ruled out every other cause of the fat malabsorption that she could think of. And she looked back at my health history (including the long gluten-light period before testing), biopsy results, and vitamin and mineral tests and concluded that I have "presumed celiac". She said she was documenting it in my chart. It's not a "real" diagnosis by prevailing standards, but she finally concluded (and I totally agree) that the overwhelming weight of the evidence points to celiac, and indicates that my tests were most likely false negatives.

Separately, the celiac specialist we just saw for my daughter heard just the basics of this story - including the fact that only 4 biopsy samples were taken for me, and none from the duodenal bulb - and said that I should obviously assume I have celiac too. And he wasn't put off by the fact that I have DQ 7.5 (i.e., only the alpha allele of the most common celiac gene).

I am so relieved to finally have a somewhat-official diagnosis in my chart. Although it makes no practical difference in what I do - I'd already realized that I have to be just as strict about the diet as my daughter, and was doing that anyway - it is just a huge relief to have that recognized as necessary by doctors. After 34 years of doctors dismissing my symptoms and thinking it was all in my head, I'll hopefully never have to hear that again!

In Topic: Lip Inflammation, Constant Peeling And Redness

03 May 2015 - 04:22 AM

I don't have a solution to the lip problem (sorry), but I do have a suggestion for the dermatologist appointment issue: Take photos! If you can show the doctor a photo of how it looked at its worst, that may help them take it seriously, even if it's improved by the time you get in for your appointment.

I found this very useful both for my daughter's rashes and for my own tongue swelling. By the time we ever got in to see a doctor, the problems had often improved enough that it looked somewhat unusual but not alarming. Then one day I thought to take photos, and voila! Suddenly they took it seriously. That didn't actually lead to a solution at the time - it's hard to diagnose things based on pictures - but at least it got a medical professional on our side who recognized that there was a real problem. Good luck.

In Topic: Differential Diagnosis

29 April 2015 - 02:59 AM

I do not have a clear diagnosis (still), but I went through many of the same rounds of specialists and tests. My MRI was mostly normal, but I was walking into walls and falling down stairs almost daily because my balance and depth perception was so bad. I was hospitalized and they thought it might be MS for a while, but then decided not. I had classic celiac symptoms going back to childhood, including daily diarrhea and stomach pain, plus an incredibly itchy blistering rash that started on my elbows when I was a kid, and awful insomnia for decades that even prescription medication didn't help. My celiac tests were negative (after a six-week gluten challenge, having not eaten wheat daily for about 15 years before that). My daughter has biopsy-diagnosed celiac, and most of my symptoms are almost identical to hers. I strongly suspect that my celiac tests were false negatives, but I'll never know for sure. I had constant tingling in one leg for about ten years, and my muscles twitched all the time. I had that feel-like-you're-suddenly-falling-when-you-go-to-sleep thing very frequently too.

I went strictly gluten free at the same time as my daughter, almost two years ago, and all my symptoms went away or dramatically improved within six months! The neurological stuff was the scariest, but after about four months I suddenly realized that I hadn't walked into anything for a while, which was amazing. A member of this forum recommended magnesium, and I couldn't get my doctor to order systematic vitamin and mineral tests after the negative celiac results, but I went back through my old medical records and found that I'd had low magnesium and potassium when tested in the ER several years earlier. That's not surprising given decades of diarrhea (from any cause), of course. I started taking magnesium daily, and the leg tingling was gone within weeks! The night twitching rarely happens now, my insomnia is gone, and in general I'm a much calmer and happier person. I'd been lactose intolerant since I was a teenager, and that also went away after about ten months gluten free.

I hope you're able to figure out whatever is going on soon. A lot of celiac symptoms can mimic other things, which is frustrating. In my case, I did have obvious bad reactions to wheat and barley malt, and despite the negative tests there's no question that gluten was causing my symptoms, whether it's celiac or a severe non-celiac gluten intolerance. Anyhow, my point is that medical tests aren't perfect, and the neurological stuff in particular is difficult to sort out. The two neurologists I saw never even mentioned the possibility that my symptoms might be related to diet. I hope you get a clear answer after all those specialists - but even if you don't, don't give up! While frustrating and time-consuming, in the end you might still find a solution by trial and error even if the doctors can't figure out what's going on.

In Topic: Wish Me Luck With The Doctor

15 April 2015 - 03:05 AM

Good luck! I hope it turns out that whatever it is, it's easily treatable.

In Topic: Fat Malabsorption & Deficiencies

13 April 2015 - 02:01 PM

My biopsy was negative for celiac, and I had low magnesium and potassium years before (presumably from chronic diarrhea, though I had no idea what was causing it then). I also had low cholesterol on and off for years, despite eating meat, eggs, and a fair amount of cheese. I still had an abnormal fecal fat test after a full year gluten free, though subjectively it seemed to be getting better gradually over time.

It's been almost two years now and I haven't had vitamin and mineral tests done lately, but I feel like everything is still continuing to get better. It's just very, very slow. I did have huge improvements in many symptoms within weeks of going gluten free, but the fat digestion thing has been much slower to improve. My gallbladder and pancreas tests were also normal. I'm not confident in my biopsy results for all sorts of reasons, but in any case it's definitely possible to have malabsorption without any intestinal damage that is obvious enough to be found with a few biopsy samples.

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