Introduction......

[Peggy]

LOL you and me both sweetie! I have a "somewhat" great saviour colour of red. I think mine went grey even earlier, if you can believe it!

[Canadian Karen]

Do you have thyroid disease? Apparently, premature greying is common with thyroid disease. But then again, if I wasn't already grey, the twins would have turned me grey anyway! LOL!

[JJ]

Hi Karen...I somehow missed greeting you. I am so glad you found us...we have a ton of fun here and also share valuable information. I am 53 and live in Washington State. I have had CC for about 3 years or so. I am on Entocort, which has been a life saver for me. I take very little....3 pills per week, and it keeps me D free. Hope to hear from you often...take care...Jill

[Canadian Karen]

See? Already I have learned something new.

It amazes me that with all the difficulty I have had getting this under control and the lengthy discussions I have had with my specialist (he is a teaching professor at St. Michael's Hospital - he's one of the best in Canada apparently), that not once has the names Asacol, Colazal or Entocort come up.

He says if the higher dose of prednisone does not work, we will go onto cancer medication. He says immune suppressent drugs won't do any good as I have already calmed down my immune system with the gluten free diet (I am no longer producing the antibodies - my last antibody test was 13 - well within normal)......

Are the drugs I listed above immune suppressent drugs? Is that why he hasn't discussed them with me?

Thanks!
Karen

[tex]

Karen,

I don't understand the logic in what your doctor is saying. Those are all inflammatories, as is Prednisone. Asacol and colozal are brand names for mesalamine, which is believed to be the active ingredient in sulfasalazine. The only immune-suppressants that you named are Entocort and Prednisone.

Entocort is a brand name of budesonide, which is a corticosteroid, as is Prednisone, a brand name of prednisolone. The primary difference between prednisolone and budesonide, is that prednisolone is a systemic medication, (it is absorbed into the bloodstream in the duodenum and jujenum), which means that it affects your entire body, whereas budesonide, (Entocort), is a targeted drug, which is not absorbed until it reaches the lower third of the small intestine, (the ileum), and the colon. Compared with Prednisone, Entocort greatly reduces the chances of it getting into your bloodstream and playing havoc with other organs.

All corticosteroids, however, after a while, tend to cause the adrenals to cease production of hormones that regulate body processes, which is why they cannot be terminated abruptly. Prednisone is much more likely to cause long-term problems than Entocort.

Prednisone is a powerful immune system suppressant, as are all corticosteroids. Again, prednisolone appears to be more likely to cause long-term damage, than budesonide, due to it's increased absorption rate into the bloodstream.

I assume that he is only testing for gliadin antibodies, by means of a classic celiac blood test. A stool test provides much more accurate information about antibodies produced by the digestive system.

What he says about going to cancer medicatons bothers me somewhat. I wonder what sort of cancer meds he is referring to? There are a lot of them. Prednisone, for example, is one of them. I'm not sure if he is misleading you intentionally, or through ignorance, (surely not), but he seems to be misinforming you about what these meds are designed to do. I hope that this isn't true, and that I'm just misunderstanding what you are sayng.

Wayne

[Lucy]

Hi Canadian Karen!

So nice to have you aboard, but wish you could find a way to resurrect those villi.
I know it must be a bit scary to be a celiac and yet not respond after being gf so long.

Apparently, one can have celiac disease for quite a while, controlled with diet alone, and then, all of a sudden develop M.C. on top of it as well, so this makes me tend to think there's something/s else besides gluten that is contributory to damaging villi in your case, but this is just a guess.

I'll just cut to the chase here, and say that if I were in your shoes, I'd get on the lowest inflammatory diet I could for a while, and eliminate any food that contained anything like a preservative at all. Find a store with organic produce, and try to use that to the extent that you can. In order of priority, start with organic strawberries and apples as they are the worst in terms of pesticides.

Someone mentioned the fact that you are probably still lactose intolerant, so if you want to see if that alone is the problem, you could switch to a lactose-free milk for a while.

However, if it's the protein, casein, the lactose free stuff still contains that as do the imitation cheeses made from soy. Casein is generally what gives these products their flavor, so that's why it's hard to find things with out dairy protein in them.

Besides the gluten, I react to dairy casein, egg white protein, and a protein in brewer's/baker's ( commonly referred to as dietary) yeast species.

Also, when I first began to get rid of all these allergens, I tried a breakfast waffle made from lots of soy flour, and although it was free of all my other allergens, the soy flour alone must've been the offending substance in this incidence as I reacted very strongly the next day, and nothing else I'd eaten could've caused that reaction.

Could it be that you've been using things made with soy flour in your cooking since going gf? If so, that would be easy enough to get rid of.

I believe that I saw a very low inflammatory diet somewhere one day while doing a search that was called "Best Bet Diet." It was written for people with M.S., but I don't see why it wouldn't be worth a try for anyone with autoimmune conditions, particularly when one has a number of them, which several of us do.

I, for one, had to have a complete thyroidectomy due to goiter, but ultimately related to the gluten I was unknowingly reacting to. I have osteoporosis, and have had other AI conditions, some of which were taken care of surgically, as well.

If at all possible, I would prepare all my own food for the time being, just to be on the safe side.

Many people with M.C. seem to have particular difficulty digesting things like lettuce. Is this the case with you? Others don't so much. It's still possible to get vegetables into the diet that are a little less high fiber, however, and they can be cooked enough to make them easier on the gut.

I keep falling asleep, so best head on outa here for now. Good luck with finding an anti-inflammatory diet if you'd like to add those things to your plan. Can't hurt, and might help. Advice you've received about the most common other "allergens" is great. I would do that first as far as diet is concerned.

Also, there's no way you could be ingesting anything chemically speaking that you know of is there? I would imagine that poisons could damage the villi as well, but this is, of course, much less common than the gluten way.

Just rambling in my sleep, so goodbye for now, and best wishes.

Yours, Luce

[kate_ce1995]

Hi Karen,

I definately have mood swings since the hysterectomy, but I feel much better because my energy is much improved over where I was. I think I had bad mood swings before too!

I wouldn't necessarily recommend a hyst for anyone unless all other options were exhausted or they were in a life threatening situation. I was in the latter category with a period that landed me in the ER with hemoglobin levels of 8 (or lower) when normal is 12-18 or something.

There are a lot of complications that can go along with a hyst, and everyone reacts differently. Have you had a laparoscopy recently? You might just be due for a clean out (so to speak). My endo was in check reasonably well pain wise with progesterone treatment. My current doc wasn't so fond of that option, but my previous doc (I moved a year and a half ago) was fine with it. They are all different.

Don't know how you cope with the health issues and 4 kids! We (my fiance and I) have his 2 only 1/2 time and its a lot! They are 9 and almost 7.

Well, I gotta run. We are about to start moving Geoff's brother to NY state. Gonna be a long day!
Katy

[Canadian Karen]

Lettuce? Oh My God! Comes out the exact same way it went in! In fact, any fruits or veggies I eat I have to take the skins off as I can't digest the skins at all either.

My safe foods tend to be potatoes and rice. My diet mainly consists of red meat, rice and potatoes, cooked (almost mushy) veggies and Kinnickinnick English muffins. Pretty basic, but it keeps me going! I do drink Natrel Lactose-Free milk, but if the problem is casien as you mention, then I guess milk would have to go totally.......

Actually, it funny when I was a child, my mom had a heck of a time getting me to eat anything except potatoes. It had to be McCain french fries in the oven for breakfast, lunch and supper. My pediatrician told her to just let me be, that I would grow out of it, but I think now that it was my body's way of trying to tell me not to eat anything else.... I am a firm believer that Mother Nature works in mysterious ways!

So Entocort is another name for Budesonide? So that's why I haven't heard that name before - we just call it budesonide. That was the treatment we tried after the Pepto Bismol. When that didn't work, that's when we moved onto prednisone.

In all honesty, I could have misunderstood what the doctor was trying to tell me. I do definitely know though that when I asked him about immune suppressent drugs, he said there was no point since it seems that my immune system doesn't seem to continue to be the problem, since my celiac number was 13 (whereas before the g/f diet, it was over 100). Actually, I didn't even know that the prednisone is an immune-suppressent, I just know it's steriods..... He did say that we really didn't want to go the cancer drug route unless absolutely necessary as the side effects could be worse than what I am dealing with right now....

I am really interested in seeing what my villi look like when I have the biopsy done next month (June 14th). If my villi are still flat, then his diagnosis of refractory will be confirmed. But if my villi have repaired then I will tend to think that my continued problems are due to the CC, not celiac. We do still have the issue of malabsorption though, which CC wouldn't have any effect on.

My last iron test showed the following:

HbG - 114
HcT - 0.334
Iron - 7
UIBC - 65
TIBC - 72
Saturat - 0.1
Fe - 10

Apparently, even with large doses of iron orally, the numbers continue to decline. I guess that's why they are thinking of giving iron systemically?

Thank you all for all your wonderful input and giving me lots to think about! I wonder if I should invest in doing the full panel test at Enterolab?

Hugs!
Karen

[Polly]

Canadian Karen!

It's great to have you here!

I don't have much time to chat this morning but wanted to at least welcome you and offer my humble opinion.

As you can see from the list under my name, I have multiple food intolerances. In fact, I believe that I was the first one on this website to discover that I had problems in addition to gluten! When I avoid all of my trigger foods, I am completely well - no diarrhea, aches/pains/bloating. And I do not need to take any medications for my MC.

If you are interested, there are 2 major ways to go about testing for food intolerances that don't cost anything. One is by elimination and the other is by adopting a non-immunogenic diet on a trial basis. Although I did the elimination method to find my intolerances, I now recommend going immediately to the diet method. For one thing, if you are having constant diarrhea, it is next to impossible to do the eliminations.......EVERYTHING gives the same result.....diarrhea (sigh). Of course, there is also a third method - which would be to order Dr. Fine's tests for eggs, soy, yeast, dairy, etc. In view of your complicated disease course, it may in fact be the best way to go, if money is no object.

The diet I would recommend is the paleolthic (or caveman) diet - plain meats/fowl/seafood, veggies, fruits, nuts/berries. No grains (even rice) or dairy is allowed. Also, no legumes (like green beans, peas, peanuts, etc.) because these foods are high in lectins which allow foreign proteins to more easily pass into the body thru the gut wall. There is a good book by Cordain on the Paleo diet if you are interested. Many of us have had trouble with fruits/veggies when our MC is active but find that we can tolerate them just fine once the gut is healed.

I would respectfully disagree with your doc's opinion that your immune system has calmed down because of the GF diet. If this were true, then you would not be continuing to have symptoms. In fact, you would need NO further medication, and certainly not any cancer drugs. My hunch is that you are having continued inflammation and insults to your immune system because of other food proteins. Unfortunately, docs out there in practice do not know about the problems that many with gluten intolerance have with other food triggers.

Gotta run, but looking forward to further chats. Would love to hear more about your kiddies (I'm a pediatrician, what can I say? - LOL!). I can't imagine how you take care of 4 youngsters with your health/diet problems. You must be a superwoman!!!

Love,

Polly

[tex]

Karen,

Please read the discussion at the following link. It describes how cyclosporine was used to successfully treat a lady in a situation very similar to yours, (refractory sprue). It stopped her diarrhea in two weeks.

http://www.annals.org/cgi/content/full/119/10/1014

You also might be inerested in reading the thread in which I first cited this reference. It contains a lot of information that might be useful for you. For example, it shows that patients with MC can indeed have damage to other parts of their digestive systems, besides the colon. Danage to the stomach is pretty rare, I believe, but damage to the small intestine, is quite common, especially in the ileum.

http://www.perskyfarms.com/phpBB2/viewt ... tory+sprue

Also, I'd like to point out that some of us with MC, who are not celiac, (at lleast not by the classic definition), do have significant malabsorption problems, though usually not as severe as the malabsorption problems experienced by celiacs.

I agree with Polly about the diet, (and everything else, for that matter). The paleo diet will work, for most people. If I were in your shoes, I would definitely at least cut out all dairy products and lettuce, (and any other uncooked fruit and vegetables), for two or three weeks, and see if there's any improvement.

I lived on meat and potatoes, (and a little rice), for close to three years, to allow my gut to heal. A stool test still showed damage to my small intestine, (fecal fat score), after almost three years. It takes a while for the gut to completely heal, in many cases.

If you have been using the diet you described for several years, the only antibodies that a stool test could detect, would be for the casein. Since you already know that you have villous atrophy, a fecal fat test would only confirm that damage.

Hugs,
Wayne

[Canadian Karen]

What an awesome article Wayne! Thank you for posting that! I am going to print it out and take with me on June 14th..... I know after I come out of the groggyness, I am going to have a consult with him.....

Also, about the spinal stenosis. I was diagnosed with it also in my early 20's (that seems to be when my whole body fell apart, as most of my diseases/problems cropped up in my early 20's.) The orthopedic surgeon who diagnosed it said to me that usually if someone my age gets it, it is due to a birth defect. That does not surprise me at all, Nanny (my grandmother, who is 94 and going strong!) has spinal stenosis, my mom has a terrible back as does my sister, and also my mom's firstborn was born with spina bifida and died at 9 months of age. The stenosis is in the L4/L5 S1 region. I used to get steriod injections every six months (which I loved because the day after the injection I felt like I could lift a MACK truck!!) Unfortunately, they don't give those injections anymore here as the doctors were frying their hands by doing it (you had to be on an x-ray table while they were doing it....)

Thankfully, through all my pregnancies (especially the twin pregnancy!) my back held out amazingly......

Thanks again for that link!
Karen

[Matthew]

Karen-

It’s a long strange trip back to wellness. I hope all the advice you have gotten is not to overwhelming. So many of us here have come to our current state of recovery by a circuitous route only to find that we have all discovered the same things. After about a year dealing with MC on my lonesome and having made remarkable progress at about nine months by eliminating processed foods of any kind, all grains, soy and soy by products, nightshades, refined sugar, Milk and milk byproducts, refined oils, all legumes ..........I was blown away when I found this place to find that so many people here had the same problems and were discovering the same intolerances.

Clearly you have had the experience of eliminating certain foods and to be faced with eliminating even more is something that we have all had to come to terms with. I, out of pure laziness and frustration that gluten free grains were not working or making things worse, quit looking for gluten free foods a few months into the diet. Cooking has never been so enjoyable. I shop the edges of the store, in other words down the produce isle, through the meat and fish section and a few eggs along with a few nuts and high omega three oils. Shopping is pretty quick when you eliminate the middle of the store. It’s a lot of fun to learn how to cook all over again making soups and stews and all kinds of ways to cook vegetables fish and meat without using all the processed foods and all the additives. Yes, cooking , eating and health can become, once again, a great joy and a lot of fun to share with friends and family. Suddenly the restrictions became a great freedom.

Thanks for joining us

To your continued recovery

Love

Matthew

[tex]

Karen,

Note that the research article that I referenced was written in 1993, 12 years ago. While I don't doubt the accuracy of it, I'm somewhat troubled by the fact that there don't appear to be any other references to this type of treatment. That would probably indicate that it was either an isolated instance, and no one else was able to reproduce the results; or, few people noticed it, and no one was interested enough to check it out and/or try it.

Of course, doctors don't have time to read more than a tiny fraction of the research articles that are published every month, and it's possible that it was just overlooked. Anyway, I wanted you to be aware of the date, and the fact that I haven't come across any corroborating data.

Did your endometriosis show up early in life, or after the initiation of the scheduled program of steroid injections. The reason I ask is because radiation, (including x-rays), is a known cause of endometrosis, (and other autoimmune issues). Since the location of your spinal stenosis is at the top of, and just above the sacrum, if the radiation dosage rate was high enough to put the doctors hands at risk, then you were receiving a significant exposure to x-rays in a rather critical area, (as far as the development of endometrosis is concerned).

Between the radiation, and the endometriosis, it's impressive that you were able to become pregnant, and avoid any complications. You took on some pretty big odds, and won, not just once, but three times, (well, actually, four times, I guess, since you had twins the last time).

Anyway, it would be awesome if your doctor would find that article interesting enough to try the treatment, and it did the trick.

You're most welcome,
Wayne

P S If you want a reference on the radiation link with endometriosis, see the Radiation section of this article, near the bottom, just above the summary):

http://www.protectingourhealth.org/news ... reosis.htm

[Polly]

Hi All!

Tex, that is an interesting case study. I did notice that the author indicated in the summary that they opted to pursue drug (cyclosporine) treatment without first considering the removal of other dietary proteins. They even cited an article in the biblio by Baker and Rosenberg titled "Refractory sprue: recovery after removal of nongluten dietary proteins" from the Annals of Internal Medicine 1978, 89:505-8.

Cyclosporine is a medication that I consider to be a "big gun" - in other words, it is often used as a drug of last resort and is frequently used in transplant cases to prevent rejection. It does have many serious and even life-threatening side effects and adverse reactions. My personal "druthers" would be to use it only when I had exhausted every other less toxic means of controlling the sprue.

That said, I would like to let Karen know that we here on this Board have the greatest for respect each individual's preference for treatment. Although we may be quite "vocal" at times about our own feelings/experiences regarding diet versus medication, you will find that ultimately we respect whatever choice is made. Some of us are diet "fanatics" and will do anything to avoid taking any medication. Others here consider taking medication much preferable to the prospect of making major and often complicated dietary changes. And still others opt for a combination of both. There is no right or wrong with regard to this issue!!! However, you will find that there is lots of emotion from each "camp", which stimulates some of our best discussions, I believe.

Also, Karen, I find your comments about genetics and childhood preferences to be quite interesting, and I agree with you. I think childhood colic has been associated with later food intolerances. I also think that some kids do unconsciously avoid foods to which they may be intolerant. I've seen many black children who refuse to drink milk or eat dairy products, which is interesting because lactose intolerance is more prevalent in blacks.

Hope everyone is having a relaxing weekend and happy mother's day!

Love,

Polly

[tex]

Polly,

Thanks a million for noticing and pointing out that reference in the bibliography--I failed to even take note of the list of references when I reviewed that article. (Thus proving once again that two minds are twice as good as one).

Bingo! Here it is:

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

I'm with you on a med like cyclosporine--it's best left as a last resort when absolutely all else fails.

Thanks again.

Love,
Wayne