Hello everyone, I've stopped lurking and joined

[teagirl]

Tex, you made me smile with your comments about doctors needing artificially induced MC to give them appreciation. Reminds me of a movie with William Hurt playing a snotty cancer doctor who treated patients with disdain. He got cancer and it changed his attitude. At the end when he's back at work, he makes all his interns take off their clothes, get into bed, and have injections and catheters.

I'm also glad to hear I'm not alone with the water "pulled plug" thing - that description is really good. I thought things might be moving about, and when I have the CT scan tmrw, they'd tell me everything was in the wrong place.

Thanks to Gayle for the info on how to take Entocort. Many times basic info like that isn't provided. I always find that it's up to the patient to grill the doctor on the what where when and how. It's like pulling teeth. Assuming the doctor wants to prescribe it, I'll be very keen to see what it costs here in Canada, plus how much my drug plan will pay (if anything). I couldn't believe the price I've heard in this forum.

Lyn, I'm thinking now I should stop oats for a while and see if there's an improvement. I've been having porridge as I said in an earlier post, but lately I've also ground them for use as oat flour. I've been using only a few herbs in cooking, some fresh from the garden, others dried, plus salt and pepper. I've kept away from spices. Today was the first day I have had any kind of sauce - I made mushroom sauce with oat flour and water and homemade stock. Previously I have had no sauces at all. I make my own soups and I had a bad few days after using commercial stock so I'm making my own all the time now (previously I only made it when I had chicken bones/carcass).

I'll stop oats and see what happens. If I am better, how would I know if it was oats themselves that were the problem, or contamination with gluten? Perhaps if I was better without the oats I have, I could find some guaranteed non-contaminated oats and try them, then I'd know.

Imodium advanced (AD?) isn't in my local drug stores. I can get only the one sort. I'll phone around, and when I'm at the hospital tmrw, I'll check their pharmacy as well. It's pretty bad when the med you take to help with the D gives you D!

I've learned from this forum that my vitamin supplement probably has gluten so I'm not taking it, and I'll look for one that says it's free of triggers. I take Amerge for migraine so I'll look into it for gluten. Hope it's OK; I can't not take it when a migraine strikes.

[tex]

Maxine,

Oats are a tricky issue. For many years, McCann's Irish Oats was the darling of the celiac world, since they were certified to be gluten-free. Then one day, someone upset the apple cart, by doing some testing of products pulled off store shelves. Low and behold, the McCann's products turned out to have some of the highest values for gluten content, (200 to 500 parts per million, as I recall). Some of the lower-priced brands, (not labeled as gluten-free), turned out to have the smallest amounts. I believe that plain old Quaker Oats, for example, had some samples that tested under 20 ppm, and none of their samples tested above 50 to 75 ppm, (I'm writing from memory here, so these numbers may not be exact, obviously, but they're ballpark figures, I believe). For reference, the current world standard for certification as GF is considered to be 20 ppm, or below. Just a few years ago, the standard was 200 ppm, (until Dr. Fasano undertook a research project, and demonstrated that some celiacs react to 200 ppm, and a few react at 50 ppm, but sensitivity below that level is extremely rare, so the 20 ppm standard was proposed, and is now being adopted by most countries).

Anyway, as a result of that product testing project, McCann's no longer advertises it's oats as gluten-free. The point is that whether or not any particular batch of oats is gluten-free, many of us react to the oat prolamin protein, avenin, which is a weaker "first cousin" of the gluten found in wheat.

The brands of "Imodium" available in Canada are different from the ones available here in the U. S. Ask your pharmacist if there is a lactose-free version of imodium, (loperamide), in Canada, (pharmacists know much more about drug ingredients than most doctors, as a general rule). There are a number of brand names available there, including:

* Apo-Loperamide
* Diarr-Eze
* Imodium
* Loperacap
* Nu-Loperamide
* PMS-Loperamide
* Rho-Loperamide

Also, there should be a generic version called simply, "loperamide".

Amerge contains lactose, but it is gluten-free, so it shouldn't cause any GI problems for you. Theoretically, at least, pharmaceutical grade lactose is pure, (free of casein), so the small amount of lactose in those tablets should not cause any problems, even if you are casein intolerant. For that matter, the lactose in Imodium may not bother you, but since it is dose-dependent, it might depend on how many capsules, (or tablets), you take per day.

Tex

[MaggieRedwings]

Welcome Maxine,

So sorry to hear that you have this horrible disease and surely all of us here know what you are going through. Glad to see that you have joined us and feel free to ask anything - we have all been there at one time or another.

Sorry this is short but I am busier today than a one-armed paper hanger.

Love your avatar.

Maggie