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Okay, Now I Am Scared....


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#1 Canadian Karen

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Posted 28 July 2004 - 12:30 PM

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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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

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#2 rattaway

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Posted 28 July 2004 - 01:11 PM

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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#3 celiac3270

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Posted 28 July 2004 - 02:34 PM

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 


Copyright © 1995-2004
Scott Adams.
The following post is from Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (celiac disease) and dermatitis herpetiformis (DH).   Dr.  Murray  (murray.joseph@mayo.edu) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease:

A recent poster asked about refractory celiac disease. This is a highly complex area and is the most challenging in dealing with celiac disease. While refractory celiac disease can be defined as a patient with celiac disease whose symptoms do not respond to a gluten-free diet there are several important questions and issues in coming to the determination that the patient is really suffering from true refractory disease. To make the diagnosis conclusively, first one must be satisfied that there is not another cause for the problem. Though rare, there are other conditions that can mimic, or coexist with celiac disease, and cause continued problems. The second issue is whether the patient is truly gluten-free, and have they been so long enough to conclude that there has been a failure with the diet? To make this determination I have the patient keep a complete and detailed dietary record for 3-4 weeks listing every single item they ate and have them save the wrapper or carton for review. If the dietitian or myself feel that there is any possibility of contamination then we exclude that item and wait longer. Sometimes the patient is exposed to a higher risk of gluten contamination by eating out a lot, where they do not have true control over the food preparation. We also check medications that the patient takes regularly. I also check the endomysial antibodies and gliadin antibodies. These should be negative if the patient has been gluten free for at least 6 months. The gliadin IgG may persist longer but usually its levels drop. If these are positive, this makes me think that they have had significant gluten in the diet in the recent past (Note: there still may be gluten in the diet if the test is negative). The original and follow-up biopsies should be compared to see if there has been any improvement. Assuming that these criteria are met, then one can proceed to consider the patient to have refractory disease. At that point it is important to check for complications such as lymphoma, lymphocyctic colitis and possibly pancreatic insufficiency. I treat the patient with a course of antibiotics and consider adding in pancreatic supplements to see if that will help the patient’s symptoms. It is only at this point that I consider some suppression of the immune system, such as with steroids or some other agent. Rarely will the patient be so ill that one must accelerate the decision to treat with steroids. Steroids are powerful medicines that can be very helpful, and even lifesaving in many cases, but have attendant risks that should be discussed prior to use. This is not medical advice and should not be used as such.


I think it's kinda funny that they said "a recent poster"....it probably isn't referring to you, though; you posted two hours ago......I just did a search and came up with a fair number of posts containing "refractory sprue". I didn't look at all, but I'll leave the links to some of the ones I saw:

An Article From Celiac.com on treating Refractory sprue

Post on board -- go to Richard's (lovegrov) post....it mentions some doctor treating all her patients with probotics and mentions RS

This is another post on the board by Debmidge and actually asks if there are any celiacs out there with Refractory Sprue....you might want to PM or e-mail her.

This is one of the most encouraging of all:
My bacterial overgrowth post -- the below quote (from this link) makes it sound like you might have SIBO rather than refractory sprue

Dr. Cynthia Rudert, one of the top celiac doctors in the country, puts ALL of her new celaic patients on probiotics just in case of bacterial overgrowth. She doesn't even look for it (it can be hard to diagnose), she just puts her patients on probiotics. Many patients who have come to her diagnosed with refractory sprue turned out to have bacterial overgrowth.

One probiotic she mentions is Culturelle because it's gluten-free, OTC, and doesn't have to be refrigerated.

richard



There are more things out there in the search results....I just didn't sort through all of them.

I mentioned SIBO (small intestine bacterial overgrowth). I have symptoms after five months on the diet, and there's an article on Celiac.com about SIBO....they took 15 celiacs who still had symptoms after 6-8 months. There were a few things with long names that one or two had, but 10 of them had small intestine bacterial overgrowth. It's really common and I think I might have it -- I'm going to a specialist to find out. Maybe we both have SIBO! :)

Finally, don't give up. I don't know how long you've had symptoms, but try to look at it as: "I've put up with __ years of symptoms, I can deal with a few more weeks." Your doctor will do something about it -- in our medically advanced world they're not just going to give up on you and let you deal with the runs for the rest of your life. They'll do something -- be it steroids or finding hidden gluten intake or finding some additional allergy or intolerance...or diagnosing you with SIBO, which just requires probotics.....it's not time to panic, yet. Good luck and keep us updated!

-celiac3270
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#4 Canadian Karen

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Posted 28 July 2004 - 03:09 PM

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
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#5 Canadian Karen

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Posted 28 July 2004 - 03:23 PM

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

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#6 burdee

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Posted 28 July 2004 - 04:09 PM

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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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#7 Canadian Karen

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Posted 28 July 2004 - 04:32 PM

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
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#8 celiac3270

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Posted 28 July 2004 - 04:36 PM

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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#9 burdee

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Posted 28 July 2004 - 04:57 PM

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
  • 0

Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#10 Canadian Karen

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Posted 28 July 2004 - 05:22 PM

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
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#11 burdee

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Posted 28 July 2004 - 05:59 PM

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
  • 0

Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#12 Canadian Karen

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Posted 28 July 2004 - 06:33 PM

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
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#13 burdee

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Posted 28 July 2004 - 07:13 PM

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
  • 0

Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


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Posted 28 July 2004 - 07:22 PM

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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#15 Thomas

Thomas

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Posted 28 July 2004 - 10:25 PM

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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