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Okay, Now I Am Scared....
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21 posts in this topic

Just came back from an appt with my gastro specialist. He is sending me to a celiac specialist on August 18/04. Basically, I have permanent diarrhea which will not respond to the gluten-free diet. He is now discussing refractory celiac disease. From everything that I have read, it does not sound good. I am now scared.......

Has anyone's dr. discussed this with them?

Thanks for any encouragement you could give me.....

Karen

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I haven't heard of " permanent diarrhea" although I don't doubt that it can happen. I will be praying that you get a good diagnosis and treatment plan. I know that this is rough to say the least but there is always a positive to every negative I believe. Hang in there and please update us on what the dr. says. :D

Rian

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Hi Karen,

First off, don't believe everything your GI says....a true celiac specialist might be able to help, but my GI knew less than I did about celiac disease after awhile. Second, you don't know for sure that it's refractory celiac disease. Refractory celiac disease is defined as when your symptoms will not respond to the gluten-free diet. However, there can be some other cause you're not aware of so you may not have refractory celiac disease. For example, if you had lactose intolerance or SIBO.....I think that's what it's getting at. There's an article on Celiac.com about it.......this "permanant diarrhea" would mean that diarrhea, your main symptom, will not go away with the gluten-free diet. Steroids, I have read, can be used, though. Here's the article, in case you haven't already read it:

Refractory Celiac Disease
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celiac3270, you are nothing short of wonderful, do you know that?

You have done wonders in soothing my fears. I am terribly scared at this point though. See, I have had symptoms since my early 20's, it was diagnosed as celiac disease back then, then after a year on the diet, with no change, the diagnosis was changed to Crohn's. My symptoms have never gone away. I can't remember what year I last had a solid bm. 1 1/2 years ago, the blood test and biopsy confirmed it was celiac disease, and the gluten-free diet was started again. There still has been no improvement. I just have permanent diarrhea, nothing changes it. We tried Lomotil, but it did nothing.

The only hope I am holding out for is that I have recently discovered (through researching) that there are two things that I have continued taking that I just recently found out were gluten-free. One was Clamato Juice, (I loved my Bloody Caesar on the weekends, after a long week at work, it's a Canadian thing, eh? The other is teriyaki and soy sauces that I didn't know had gluten in them. And since rice is the thing I eat the most, I have probably had a pretty steady dose of it.

Do you think this gives me hope? Also, I am taking something called Bio-K Plus with CL1285 Acidophilus / Casei with 50 billion active bacteria cultures. One of these is the equivalent of 100 yogurts, and I take 1/2 afternoon and 1/2 at bedtime. But now that I am going lactose free, I can no longer take this as it is fermented milk. I am hoping I can find a substitute that is lactose free.

I am very grateful for your post, more than you know. I came home from the dr today, and I was so scared and alone I just cried. All I could think about is not being around for my four children (I have a 10 yr daughter, 5 yr daughter and 3 yr old twin boys). The thought of me not being around to watch them grow up just terrifies me.

I am seriously thinking of taking a 6 month leave of absence from work to concentrate totally on my health and dedicate myself 100% to getting better. I am sure the stress filled life that I have (work full time, 4 children, my mother and grandmother rely on me for all their errands), is not helping my situation any.

Hugs to you, celiac3270, you are a very kind and considerate person.

Karen

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I should have mentioned that I am now 41 years old. It has been many, many years of this disease going unchecked.

Karen

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Karen: I also went many years before learning my symptoms were really celiac, and not 'IBS' (14 weeks ago) and getting a celiac diagnosis (I'm 57). When I first started avoiding gluten, I focussed on the obvious stuff (breads, pastries, pasta). When I still had symptoms I started reading more labels of ingredients and learning the sources (safe or unsafe) of all those 'mystery' ingredients. Everytime I had recurrent symptoms I was scared that maybe I had 'something besides celiac disease', because I didn't get tests until I'd been trying the gluten-free approach for 2 months. I was in such excruciating pain at first that I would not purposely 'gluten load' for traditional celiac 'blood tests/biopsies. So those fears that avoiding gluten couldn't really resolve my symptoms led me to do the Enterolab tests. I ordered the whole package including the milk sensitivity test. I didn't think that was necessary, since I already 'KNEW' I was lactose intolerant and was using 'lactaid'. Meanwhile my recurrent symptoms made me do more serious gluten sleuthing and I discovered my vitamins, toothpaste, envelopes, stamps, lipstick also contained gluten. When I STILL had symptoms I wondered what gluten source I missed. When my E-lab tests said CASEIN as well as GLUTEN antibodies, I cut out all dairy. WHAT a difference ... almost no symptoms. :D When I tried soy substitutes for dairy, my symptoms returned. What a disappointment! :( Even though I now abstain from gluten/dairy/soy, I'm suspicious of any foods which 'don't feel good in my stomach' (like acidic foods for me). I'm really trying to listen to my body (after ignoring those signals for so long), but I have symptom free days now, rather than merely symptom free hours. :D

However, I NEVER returned to the doctor who told me 'IBS' for almost 10 years and have only seen a naturopath since discovering celiac disease. I would recommend a SECOND or even THIRD opinion. With so few doctors out there who really know anything about celiac disease, I wouldn't trust such a serious diagnosis until I eliminated all sources of my symptoms (all gluten sources, cow's milk and other possibly allergens). ;) Since you're taking a supplement which is "the equivalent of 100 yogurts" and having symptoms, I would question whether you have casein intolerance. Good luck 'sleuthing'. :)

BURDEE

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Hi Burdee,

I am really starting to think more seriously about this casein thing. The reason I think it may be a strong possibility is the fact that I am a total milk freak! Even during childhood, Mom alway joked that she needed to buy a cow, I drank so much of the stuff....... Even until just recently, I drank probably 2 - 3 bags of milk myself per day..... So if it is casein or lactose, I sure have been giving myself a steady dose of it my whole life......

I have decided to go totally dairy free. Also, at the dr's suggestion, I am also going to cut out all sugars..... I do drink a lot of Kool-Aid, as I hate the taste of plain old water!!!!

My question is: Once I committ 100% to the dairy free, how long should I expect to see any change? How long did it take you to notice a difference?

Thanks!

Karen

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Wow....from early twenties to 41 years old....20 years of symptoms....and I'm fed up with 7 years of symptoms (6-13 years).

The only hope I am holding out for is that I have recently discovered (through researching) that there are two things that I have continued taking that I just recently found out were gluten-free. One was Clamato Juice, (I loved my Bloody Caesar on the weekends, after a long week at work, it's a Canadian thing, eh? The other is teriyaki and soy sauces that I didn't know had gluten in them. And since rice is the thing I eat the most, I have probably had a pretty steady dose of it.

That could definitely be it....often, misdiagnosed RS is from when there is hidden gluten that's mistaken to be refractory sprue -- cut out all the hidden stuff and you might find that you have no problems, after all. One more rice question: do you cook it using water or chicken broth? Chicken broth could be another source of gluten, and you said that you have rice often.

Since you're taking a supplement which is "the equivalent of 100 yogurts" and having symptoms, I would question whether you have casein intolerance. Good luck 'sleuthing'. 

BURDEE

It could be......I mentioned the possibility of hidden gluten, SIBO, or other allergies or intolerances. Many here have lactose intolerance...it could be casein intolerance...you'd have to ask the celiac dr. about that.

am very grateful for your post, more than you know. I came home from the dr today, and I was so scared and alone I just cried. All I could think about is not being around for my four children (I have a 10 yr daughter, 5 yr daughter and 3 yr old twin boys). The thought of me not being around to watch them grow up just terrifies me.

I am seriously thinking of taking a 6 month leave of absence from work to concentrate totally on my health and dedicate myself 100% to getting better. I am sure the stress filled life that I have (work full time, 4 children, my mother and grandmother rely on me for all their errands), is not helping my situation any.

When I talked to a nutritionist, Anne Lee (who works with famous celiac Dr. Green), she said that one of the key things is not to worry -- stress is not good for dealing with and recovering from celiac disease....I'm sure a stress-filled life isn't helping any. What do you mean by not being around for your children? Surely Celiac symptoms wouldn't cause death, right?

Hugs to you, celiac3270, you are a very kind and considerate person.

Thank you.... :D It feels good to know you helped someone or made them feel better. That and the prospect of learning something new are the reasons why I post so often here. Good luck with the celiac dr. I think there's a great chance that it's not RS. It can be misdiagnosed so easily, and this was by a GI, not a celiac specialist. If they can misdiagnose a Celiac with IBS (like with sue); completely incorrect, surely they can make a common error here.

-celiac3270

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Karen: TO ANSWER YOUR QUESTION: I saw a difference (almost NO symptoms) within 24 hours and experienced a bad reaction when I returned to milk consumption after 36 dairy free hours. Here's more ...

Since I KNEW my E-lab test results would tell me whether or not I could safely have dairy, I wanted to try my own little dairy free test about 5 days before I expected my results. Not that I thought casein was a problem ... I was almost convinced I was only lactose intolerant ... but I wondered what I would EAT if I couldn't have dairy. I was also a dairy freak! Not milk but ice cream, yogurt and cheese (on EVERYTHING). :P So I abstained from dairy (and gluten, of course) for about 36 hours. That was the first pain free 36 hours I had experienced since I began the gluten-free thing. Even though I felt great during that time, the 'addicted' part of me reasoned that I still had 4-5 days before my results came back and I really had to avoid dairy. So I had 1/4 cup of milk in my coffee after my dairy free 36 hours and had DRAMATIC results: instant huge sinus mucous drainage and cramping pain that swept from my stomach through my intestines! :o Then the usual gas, bloating, constipation and more cramping pain (more like menstrual cramps than my usual 'bits of broken glass' gluten pains) continued for 3-4 days afterwards. That milk was my last intentional dairy! ;)

I noticed abstaining from dairy effected my regularity (constipation) symptoms much more than abstaining from gluten. My 'casein' symptoms were slightly different from my 'gluten' symptoms. Also casein 'sleuthing' was even more difficult that mere gluten sleuthing, because I had to find gluten-free/cf products. However, soy did not work for me either (as a dairy substitute). I tried several different gluten-free/cf brands and several different soy products in varying amounts (tiny to soy loading) and STILL experienced symptoms similar to gluten/casein symptoms. So now I'm gluten-free/cf/sf for a while. I was never 'addicted' to soy products (never tried them much before I went dairy free), so I hope this is only a temporary sensitivity. I'll do the gluten-free/cf/sf thing for 3-6 months before purposely trying soy again. Meanwhile I suspect any foods I feel I 'can't live without'! <_<

BURDEE

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Burdee,

Did your casein symptoms include a burning/nawing feeling? Also, did it include a pain and burning feeling in the centre of your back, just below your shoulder blades? Sometimes it hurts to even just touch my back in that area..... Or maybe it could just be from the 1000 times a day that I belch from the gas.....

Thanks!

Karen

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Hi Karen: I get burning/knawing pain my stomach from acidic foods (oranges, strawberries, raspberries, caffeine and too much wine :P ), not from casein. I did get 'instant reflux' from casein (all my life). But everybody's symptoms differ. I have gotten that radiating gas pain from my intestinal cramping up into my back, and into the sides of my waist from both gluten and casein. When the gas pains were intense, they seemed to radiate to cramping pains almost anywhere.

BURDEE

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Most of the things you listed, I don't eat anyway because they bother my system too much. But I do drink about 4 large cups of tea a day. I wonder if that is enough caffeine to bother my system? Also, I was putting 2 heaps of sugar in each cup, coupled with the Kool-Aid that I drink, maybe I am stimulating my system too much with sugar...... But now that I am going gluten-free/cf/sugar free, maybe I will see an improvement that will lift my spirits.....

I just showed my husband the articles on refractory celiac disease, told him that when the doctor first mentioned it, I was terrified, but after reading all the posts and e-mails, I am feeling a bit more at ease, and I am more convinced than ever that I have been getting gluten unintentionally. I just have to prove it, now.....

I showed my husband all these posts, and he thinks you guys are a great support for me, and he is right..... I mentioned to celiac3270 earlier that I don't believe I have been careful enough, and an example I said was that I use the same toaster for my gluten-free bread and the rest of the family does for their reg bread. celiac3270 replied back that even a crumb can do major damage, and with a toaster, you get more than one crumb..... That blew both me and my husband away! You would never imagine...... And here I have been trying so hard for 1 1/2 years, and something so minute can do it.....

Karen

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Hey Karen: Live and learn ... ;) Since we all live in our own bodies, we all have to figure out what causes our own symptoms. Fortunately we can share general info and similar symptoms. I also suspected sugar was causing problems for years, since I seemed to be 'addicted' to gluten and dairy products with sugar. However, when I eliminated the gluten and dairy ingredients, I don't feel as compulsive about gluten-free cookies or gelatos (with sugar) like I did with regular cookies and ice cream. I really like that gluten and casein opiate peptide theory described in Ron Hoggan's "Dangerous Grains". Also I can't drink ANY regular tea or coffee without getting those knawing/burning stomach pains. I'm VERY sensitive to caffeine. Since I haven't found a suitable CF milk for my decaf, I stopped drinking even decaf. Now even that bothers me. :( So I drink lots of herbal teas (esp. peppermint which soothes my gluten/casein cramps) with artificial sweeteners (which don't seem to bother me--except sorbitol in sugar free gums/candies :o ). Any pain free hours (or sometimes DAYS) lifts my spirits and makes all those restrictions and 'sleuthing' worth it! :D

BURDEE

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I use the same toaster for my gluten-free bread and the rest of the family does for their reg bread. celiac3270 replied back that even a crumb can do major damage, and with a toaster, you get more than one crumb.....

Hi Karen,

My mother said the same thing to me the other day...I don't know whether to pick out the crumbs or invest in a new toaster... :huh:

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I know you mentioned that you drink alot of kool aid, and wanted to cut your sugar intake. Crystal light if gluten free, and sugar free.

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Don't have time to read all the posts on this one but let me re-emphasize.

True refractory sprue is very, very rare. Almost all people who think they have refractory sprue are either still eating some gluten or they have bacterial overgrowth. You must get ALL gluten out of your diet and you must take some probiotics. Then go from there.

richard

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Karen, I have celiac disease and I am also dairy intolerant. After 4 months of being on the gluten free diet I was still having "permenant " diarrhea. Nothing seemed to want to stay in my system for a long period of time. Sometimes the food I ate was almost instantly out. It was awful.

I was weak, tired, annoyed, underweight, and very frustrated.

I went back to my GI specialist and he said I should be 100% dairy free and 100%gluten free of coarse. Then he suggested that I may also have IBS (Irritable bowel syndrome) in addition to Celiac Disease. (Oh joy). <_<

He started me on a medication called Modulon and it has worked wonders! I actually had almost a week of no diarrhea!

I have learned the hard way that the drug doesn't work well if you have a gluten accident.

But as long as there was no gluten in me I was fine and felt wonderful, better that I had in months!

Just thought you'd be interested

-Carrie

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Hi Karen,

My mother said the same thing to me the other day...I don't know whether to pick out the crumbs or invest in a new toaster... 

New toaster......it's not too expensive, but it'll make a big difference.

I know you mentioned that you drink alot of kool aid, and wanted to cut your sugar intake. Crystal light if gluten free, and sugar free. And it comes in a variety of flavors, that might be a good alternative. Also, check out those Toronto gluten-free stores from the Toronto section for gluten-free soy sauce.

Crystal Light is great....I called Kraft awhile ago and it's fine. I don't know if it's sugar free, but it's gluten-free and really good. I drink it all the time. I like the strawberry kiwi the most, but their lemonade and pink lemonade are good also. You might want to check the sugar, but it's gluten-free and I really like it.

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Thanks celiac3270--I'll opt for the new toaster!!!

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Karen,

I get that burning/gnawing feeling in my upper intestines from dairy. I am dairy free now since November 2003, and gluten free since January 2004. The only thing that made going back on gluten for a gluten challenge (Nov-Jan) possible was being dairy free. I get horrible cramping, gas and diarrhea from dairy, and it is the casein and NOT lactose that causes it for me. My three kids also have problems with casein.

We have found subtitutes for some of the dairy products, but not all. A lot of the non-dairy products are not actually dairy free! You have to read labels and look for things like the obvious milk, milk protein, powdered milk, casein, lactose, but also for the less obvious like whey, sodium caseinate, any other type of caseinate, and I'm sure there are some I am forgetting.

It is much harder to be gluten AND dairy free, but it is so worth it. I would have been like you and wondered if the tests were wrong or if it was refactory sprue, since if I had not done the Enterolab tests that told me to stay off dairy I would have continued to have tons of intestinal complaints. I am glad to be dairy free.

Some of our favorite gluten-free/cf foods are:

Mocha Mix Non-Dairy Frozen Dessert; Mocha Almond Fudge and Neopolitan

Philly Swirl; Stix and Cups

Nucoa Margarine

Blue Diamond Almond Breeze Chocolate Beverage

Gluten Solutions Chocolate Mint Protein Bars

God bless,

Mariann

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Hi Smith,

Thank you so much for the suggestion of Crystal Light. I purchased it and it tastes very good!!! I can even make my slushies out of it (I have a slushy machine because I just LOVE them - I usually used Kool-Aid with it but now I can use the Crystal Light instead)..... Thanks for the suggestion!

Karen

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