radman

Hi all. Yes, I do think my gut will "complain" when it gets a level of gluten which will cause damage. It will be very easy for me to know, since my bowels have been so different ever since going gluten free. I think I'll eat a nice big Sierra Turkey on Focaccia at Panera Bread for my challenge. I wouldn't say I don't have villi damage, I'm sure...

Well it's been over 2 weeks now gluten free. My partner brought in our Tuesday morning tradition of Einstein bagels with cream cheese for the whole staff. I had to sit there and watch everyone eat 'em. I sure miss my toasted everything bagel with sun-dried tomato cream cheese. Came close to caving, but I held out and munched on some M and M's (great...

The newer surgery is done through a laparoscope, so it is minimally invasive, and highly effective. It recreates the lower esophageal sphincter with a strip of stomach muscle. Stomach contents, whatever their pH can no longer reflux into the esophagus. Bernses, your holistic practitioner has given you dangerous advice. You are definitely not better...

raven: I have been thinking the same thing. Not to screen all patients, just those that may be related to celiac. The largest group of patients would be lower esophageal adenocarcinoma. I've been considering sending celiac panels on those patients to see if there is a correlation. Bernses: Yes, esophageal cancer has a poor prognosis overall...

Hi folks, I have a thought for all those with severe reflux- consider getting an evaluation for surgical correction of the reflux. The current procedure is called a Laparascopic Nissen Fundoplication. Long term use of proton pump inhibitors (Aciphex, Nexium, Prevacid, Prilosec) is concerning for many reasons. In fact, I was on them myself for about...

Hi Franceen, Please let us know about the results from the pathology of your skin biopsy. I've read that up to 30% of patients with DH have negative antibody tests, so you may yet be correct in your diagnosis. I would have expected it to improve with gluten free, even if you occasionally cheat. Perhaps you are just very sensitive. By the way...

OK, here is the very unscientific symptom survey (VUSS) I tallyed up the symptoms of a total of 20 of us (n=20), any symptom by only one person and no others was dropped, and infants/children were not included since the symptoms are quite different. Also one or two of us who clearly had multiple associated complicating illnesses were not included because...

Hi everyone, I plan on tabulating all of this when I get a minute. Interesting no one has mentioned osteopenia or osteoporosis (unless I missed it scanning the posts). Has everyone had the recommended DEXA scan to test bone density?

Good morning all, Karen: yes, the article you linked is a good one. It also emphasizes the abnormal IEL's as a major factor in refractory celiac, just like Fasano's article. It also discusses the same treatments- elemental diet, immunosuppressive agents, and possible chemotherapy. There are other potential treatments that come to mind as well, particularly...

I know what you mean about the cost, but an office consultation shouldn't cost more than $175-200. Perhaps he could just review your history and make recommendations that could be carried out by your physician in Canada. With your degree of difficulty it might be worth the time/effort/and money (I certainly don't know him personally, just that he is a...

I don't understand why you say you don't beleive in refractory celiac. Collagenous colitis would have nothing to do with persistently flattened villi in the small bowel, even though it is clearly a problem in its own right. Dr. Fasano has written about refractory celiac. I won't go into the details, but it may be worth your while to see him for a second...

Karen: I understand that you have refractory celiac based on persistently flatenned villi, but do you have persistent malapsorption/diarrhea and if so how severe? What type of evaluation have you had regarding the cause of the RS (refractory sprue)?

The variability of celiac is clear, I suppose it is just like other diseases where there are different levels of intensity. If you think about seasonal allergies for example, some have a little sneeze now and then, some can't go outside without an asthma attack. The other thing we know is that the extent of intestinal involvement varies. Some/most only...

Hi Vydor, I think the issue of cross reactivity is getting confused because the same term is being applied loosely to very different issues. The thread you linked was talking about your body "cross reacting" to proteins similar to gluten. What I have talked about in reference to cross reactivity was something entirely different, namely that the antibodies...