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Member Since 10 May 2013
Offline Last Active Apr 15 2015 03:03 AM

Posts I've Made

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.

In Topic: Any Scientific Evidence Than Less Than 20Ppm Can Cause Ttg Rise?

12 April 2015 - 01:29 PM

I'm wondering if the milk thing might be a fairly straightforward cc issue fom barley fodder blowing around in barns, even if the actual milk itself is totally digested and contains no gluten fragments. I've never worked on a dairy farm, but I have worked on a farm with other animals, and their hay and feed made dust everywhere! Seriously, it blew around and coated everything. I have no idea how milking equipment is stored or cleaned, and maybe I just worked on an unusually windy farm; it may be much less of an issue in large commercial farms.

In any case, our problem could be from the 7-9ppm in the flour alone, so I'm not necessarily assuming milk is the problem. It could be either - and both seem so unlikely that it's hard to tell which is more plausible. My daughter is dancing around and laughing as I write, so at this point I'm just so happy she's feeling this good that I'm happy to stick to our current diet for as long as it takes to get to the bottom of things.

In Topic: Any Scientific Evidence Than Less Than 20Ppm Can Cause Ttg Rise?

11 April 2015 - 04:04 AM

Update: I'm thrilled to say that her tTG dropped by almost half in less than a month! I removed that certified gluten-free flour with 7-9ppm cc traces, and also removed milk. Normally we wouldn't have checked tTG again so soon, but her GI ordered a re-check because we're headed to a celiac specialist soon and wanted the most up-to-date results. She has continued eating a few other processed gluten-free foods that have been independently tested by a reliable source and found to have no measurable cc. She has also been super happy and in a great mood.

Her GI did agree to run the DGP tests too, and they were negative but higher than six months ago. So we only have a few DGP values for comparison, but she had a big drop in DGP from strong positives at diagnosis to negative 18 months later (which corresponded to her huge tTG drop), then no DGPs drawn with the tTG spike last month, then negative-but-higher-than-before DGP now (corresponding to her tTG falling again but still remaining higher than it was last time DGP was tested - so we probably caught it on the way back down). So this all makes sense!

Before anyone jumps all over the milk comment, I'll just say that she had clear, obvious (in retrospect) celiac symptoms as an exclusively breastfed infant, before she ever had a single bite of gluten herself. The symptoms went away when I stopped breastfeeding and put her on Neocate formula, then returned when she began solids. She wasn't tested for celiac until age 4, but she repeatedly tested negative for milk allergy (which wouldn't affect tTG anyhow). She tested negative for lactose intolerance last fall, after she'd been gluten-free for a year and a half. Actually, that's the one major change in her diet that correponded to the tTG spike: she began having milk in her cereal every day after passing the test (the same cereal she'd previously eaten dry). If the miniscule amounts in breastmilk were enough to cause problems, it makes sense that the miniscule amounts in cow's milk might too, given that dairy cows are fed barley. I realize that most celiacs don't get tTG rises from plain dairy - but most don't get tTG rises from occasionally eating baked goods made with a flour that contains 7-9ppm of gluten either! In any case, we now have strong evidence that it was one of those two things. I want to see her tTG completely negative before trying either again, but once that happens we can test them separately. I'll be curious to see what the new celiac specialist says. Her current GI seems to agree that, as unlikely as it sounds, the tTG rise was caused by way less than 20ppm.

In Topic: Juvenile Rheumatoid Arthritis, Ttg, And Esr?

06 April 2015 - 03:12 PM

Thank you both. The Lyme idea is interesting - I'll definitely ask about that. We do live in an area where Lyme-carrying ticks are common.

I am super glad that we're getting a second opinion. Even if the new doctor doesn't actually have any additional ideas, at least I think we're already on our way to ruling out (or in) other associated problems, just based on our current GI's sudden willingness to look into things further.