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Member Since 10 May 2013
Offline Last Active Aug 21 2014 03:09 AM

Topics I've Started

Still Abnormal Fat Malabsorption After 13 Months

22 July 2014 - 05:12 PM

A qualitative fecal fat test just confirmed that I still have significant malabsorption. I've been strictly gluten free for 13 months. I feel like I'm digesting things much better than at any other time in the last ten years, and after a few months gluten free my stools started sinking most of the time. But the continued sticky stools do worry me because this test was positive when I'd only been eating about 15-20g of fat per day. My heart races for several hours after meals with even just a tablespoon or two of olive oil, a few bites of avocado, or a couple slices of cheese. Apparently some doctors recommend eating around 100g of fat per day before this test, so the fact that one random stool sample showed malabsorption even when I was eating way less is worrisome. If I eat nothing but raw or steamed veggies and plain rice, I'm totally fine (but crave protein and oils).

I am having an abdominal MRI next week, and I left a message requesting the fecal elastase and vitamin K tests but I don't know if my GI will agree to order them. I strongly suspect that I have exocrine pancreatic insufficiency, and in that case it would hopefully resolve with more years gluten free and some time on prescription-strength enzymes. I know that pancreatic problems are common from long-undiagnosed celiac, and I still do suspect that my celiac tests were false negatives because I'd been gluten-light for so long. If I knew I had celiac, I certainly wouldn't expect 20+ years of problems to be gone after a single year gluten-free. But my doctors are adamant that neither NCGS (even if severe) nor wheat allergy would still have any residual effects after this long, and they do not think whatever is causing my malabsorption now has anything to do with gluten. That strikes me as unlikely, given that virtually every other health problem I've ever had is well on its way to healing now that I'm gluten free, but I also don't want to ignore other problems that could be unrelated.

I guess my questions are:
1) Has anyone with long-standing malabsorption at the time of a celiac diagnosis still had this much fat malabsorption a year later? How long does it take to resolve?
2) Has anyone with severe NCGS but not celiac had damage to their pancreas? Are my doctors right that NCGS can cause many of the same symptoms as celiac but does not actually cause clinically-significant malabsorption or damage? I can't seem to find any relevant literature on this.

Recent Experiences With Soul Dog In Poughkeepsie, Ny?

17 July 2014 - 04:17 AM

Has anyone tried Soul Dog recently? Their older reviews are excellent, but it sounds like the business was sold a while ago (in 2013?) and I've read mixed things since then. Their online menu says they have a dedicated gluten-free kitchen, but they also have both regular and gluten-free mac & cheese on the menu, it sounds like gluten-free hot dog buns are by request and not automatic, etc. So I'm not sure how it can be a "dedicated gluten free kitchen" if they also serve wheat foods...but maybe I'm missing something. I'll call to clarify when they open, but what I'd really like to know is whether anyone with celiac has eaten here since it changed owners, and whether they got sick.

We are heading to Poughkeepsie tomorrow and would love to have a restaurant option if it truly is safe...but my red flag alert is on high when it sounds like a restaurant claims to have a dedicated gluten-free kitchen without understanding that that means no gluten in the kitchen at all!

Lymphoid Aggregate In Terminal Ileum

10 July 2014 - 10:41 AM

Does anyone know what it means have a biopsy of the terminal ileum (done during a colonoscopy) show a "lymphoid aggregate"? It says there's no evidence of an inflammatory bowel disease, and that this is benign and not cancerous. So I'm assuming the lymphoid aggregate is nothing too significant, but I'm curious about what it means. Could gluten cause it? 


When they did my upper endoscopy last year they only took four samples, with none from the duodenal bulb, and no lymphocyte counts. The GI assured me beforehand that she'd do plenty of biopsies, but I woke up and found out she'd only done four. And I'd been gluten-light for over a decade, then briefly gluten free, then did a six-week gluten challenge leading up to the endoscopy (during which I only had one piece of bread most days because it was making me so miserable and my hair started falling out). So altogether, there were many places where doubt crept in about whether this had really been enough to rule out celiac. I'm sticking to the diet, regardless, as the improvements have been huge and life-changing. But I guess I'm still trying to piece together a coherent explanation of what's going on. The GI also made blatant factual errors about my family history on the colonosopy report, so in general I'm not sure if she's even reading my file or reports carefully. 


I guess what I'm really wondering is whether a "lymphoid aggregate" way down at the end of the small intestines could be caused by celiac or NCGS, or whether it's totally unrelated. The procedural report did note that she was able to get the scope up through the colon and into the terminal ileum unobstructed. 





Scared Of What Colonoscopy Might Find

23 June 2014 - 10:21 AM

I'm having a colonoscopy on Friday, and I'm getting worried that something else is really wrong, in addition to the gluten problem. I'm not worried about the procedure itself, just the results. My previous doctors never referred me to a GI when the daily diarrhea, insomnia, and SI joint pain started as a teenager (22 years ago), telling me that this was just "normal for me" and that occasional blood in my stool wasn't a cause for concern as long as it was bright red, because it was probably just irritation from toilet paper and would only be a problem if I became anemic. I regret not pressing harder for a colonoscopy when I had my endoscopy last year, but I was so glad to finally have a doctor who agreed to celiac testing that I didn't want to push my luck, and she said it wasn't necessary at the time because I'd already had such a good response to a gluten-free diet. Then my celiac tests were negative (after an awful gluten challenge that might not have been long enough), and both of us were very surprised. But the diarrhea went away within a week of eliminating gluten and stayed away all year, plus my neuro, balance/coordination, and skin problems also improved hugely over the next few months. So I thought I'd found the underlying problem despite no definite diagnosis, and for the past year I have been pretty content to wait patiently and see what else clears up with time.

However, six weeks ago the diarrhea came back with a vengeance. My colon is so swollen that, er, it's hard to get even very loose stool out. I feel mildly nauseous all the time, and my SI joint pain and insomnia returned. No visible blood. I cook most of my food myself, from unprocessed ingredients, and I triple-checked all condiments, vitamins, and toiletries. I really don't see how this could be a gluten reaction - except that it did start around the same time my daughter had a resurgence of her celiac symptoms, which coincided with possible exposure to minuscule amounts of inhaled gluten for several weeks (but this seems more likely to be a coincidence: see http://www.celiac.co...traw-a-concern/ ). Anyhow, my daughter improved again shortly after that while my diarrhea is still going strong weeks later...which is why I'm worried that something unrelated is really wrong in there.

For those of you who had colonoscopies, were they able to tell you right away whether everything looked okay? Do they automatically do biopsies, or only if they spot visual problems? I'll certainly request biopsies when I see the doctor before the procedure, but she assured me that she'd do "plenty" of biopsies during my endoscopy last year, and I later found out that she only took four. And can they even do the colonoscopy if your colon is really swollen? I just want a clear diagnosis once and for all...but I am scared they're going to find something seriously wrong (and not correctable by diet) in the lower end...

Celiac And Pediatric Hearing Loss - Does It Improve?

10 June 2014 - 08:25 AM

My daughter just had her 5-year-old physical, and she failed the hearing test. She had no response at all to even the loudest beeps in either ear. She was being cooperative and really trying and paying attention. The same thing happened at her physical last year, but we were right in the middle of getting her celiac diagnosis at that point, and it was the least of our concerns. She had quite a bit of wax in her ears then (which over-the-counter ear drops have helped reduce) so everyone figured the problem was just from wax. However, she did not have excessive wax this time, and she still didn't hear any of the sounds.


She does ask us to repeat things a lot, but her speech is totally fine. She articulates well, loves rhyming, and has a big vocabulary for her age. So she seems to be hearing okay at least some of the time. My own sense is that this is an autoimmune or celiac-related problem. I found some conflicting research about an association between celiac and sensorineural hearing loss in pediatric patients on PubMed, but it sounds like not much is known about it. I can't find anything at all about the prognosis, if this is indeed what's going on. Does anyone have experience with this? Is this type of hearing loss likely to improve once her celiac damage has longer to heal, or is it a permanent sort of thing? 


Ironically, her earliest celiac symptoms included neurological problems and sensory issues, including extreme sound sensitivity (definitely not a lack of hearing - the problem was that even tiny sounds made her cry). She was diagnosed with Sensory Processing Disorder as a toddler, but those symptoms went away almost entirely after a few months gluten free.


We're seeing an audiologist for a full hearing assessment next week, but I'm not counting on the audiologist to know much about celiac. I'll bring her abstracts from the two articles below and a few others, but I'd love to hear if anyone here has experience with this. 







Oops, the first link wasn't working. Hopefully it's fixed now.