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What Are The True Risks Of Eating Gluten?


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102 replies to this topic

#1 Magnus

 
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Posted 12 May 2005 - 12:38 AM

I was diagnosed with celiac spue by blood test/endoscopy this past year. I went to the doctor because I had been having diarrhea on and off for 6 years. I went to other gastro's several times before, but they never could find anything. I have gotten used to taking loperamide or lomotil and it keeps it under control. I have no problems with weight loss/gain, no other symptoms and what I have read about potential risks is that I am at a slight increased risk of lymphoma, but not greatly so. My doctor before doing my endoscopy said to eat as I usually do so that my intestines don't heal and he can see the damage. If he was concerned that 2 weeks of being gluten-free would heal 6 years of disease, how bad can it really be? I realize some people have different levels of disease and symptoms and I'm not diminishing your pain or suffering, I am just saying for me, I would rather take an occasional imodium and enjoy life not constantly worried and stressed over every single piece of food, soap, toothpaste, drink, etc that comes near me to avoid a slight risk of illness. My doctor admitted he was not an expert in this area and referred me to a specialist who wasn't on my insurance and wanted $500 just to have an office visit. I can't afford that which is one reason I am posting this. From my research, the risk seems minimal. It is like a dermatologist telling everyone that they should always wear sunscreen if outside for any length of time, but how many people really do that? I don't know anyone who hasn't been sunburned at some point or tan knowing there is a slight risk of skin cancer. Even if people don't tan, according to dermatologists, being in the sun AT ALL can cause cancer. Now drinking soda can cause esophageal cancer. Stomach cancer is common in diets high in rice and fish. Second hand smoke causes cancer. For me at least, I feel that my quality of life would be less giving up my favorite foods, being a pain to all family and friends about every food, etc when all I have is diarrhea 2 or 3 times a week. I guess the reason for my post is I would like to know what the true RISKS are in the future and not just some hypothetical some doctor has told you. (like the dermatologist) I have looked up some JAMA articles and they seem to support my conclusion that the risk is slight if malabsorption problems are not present. Considering I've eaten gluten for almost 7 years now with celiac disease and have virtually no pain and just occasional diarhea, other than a slight increased risk of lymphoma, what do I really have to worry about? (I am sorry for the length of this post) :)
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#2 darlindeb25

 
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Posted 12 May 2005 - 01:19 AM

well magnus---let me give you some real things that have happened to me--i was sick my whole life, not just 6 years--i searched for a diagnosis for so much longer then that--the average diagnosis timein the US is 11 yrs--now that sucks and believe me--no one heals from celiacs in 2 weeks--i have been gluten-free for almost 4 yrs and i am still trying to recover--i didnt find celiacs until i was 46, my sister was 43 then and diagnosed with celiacs too, now our dad was this last nov---anyways--we both were so vitamn and mineral deficient, i was having severe panic attacks, diarrhea all the time--she was so vitamin deficient, the doc couldnt figure out how she could walk--she had to have iron transfusions--an IV drip for 3 hours every wednesday for over a month and then they told her she would be having this drip once a month for life---AND, when celiacs is undiagnosed, that leaves the door open for other diseases to jump in and take over--MS, severe arthritis, colitus, neuropathys, lupus, sjogrens disease, you name it--------i went so long undiagnosed that i have neuropathy--my fingers go numb, i have no strength in my hands, my ftoes go numb, the soles of my feet will burn--my face now has neuropathy and burns--i am now also intolerant of soy and very limited with corn, potatoes make me ill---it is very difficult for me to get the proper amount of vitamins now------DO YOURSELF A FAVOR AND GO GLUTEN FREE, for now--if your symptoms arent too bad--be thankful and make sure you feel good for the rest of your life--------deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#3 celiac3270

 
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Posted 12 May 2005 - 03:22 AM

Here's a link to many of the problems associated with celiac. Untreated celiac disease can give you cancer, type 1 diabetes, osteoporosis, malabsorption, arthritis, lupus, neurological problems...the list goes on and on:

http://www.celiac.co...-05105162400.d1
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#4 Guest_gillian502_*

 
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Posted 12 May 2005 - 04:06 AM

I can understand why you feel hesitant about this since you've never truly felt really ill, but let me tell you, it can happen at any time. I had some various stomach and other type symptoms for many years and blew them off, until I woke up with a startling vertigo attack one day and my life was never the same. I began to go downhill from there, experiencing constant dizziness, escallating migraine headaches, numbness in my arms and legs while sleeping, extreme abdominal swelling and pain, watery diarrhea every day for months, eventual weight loss, and I developed a heart condition known as "POTS" while waiting to be properly diagnosed with Celiac, as well as Colitis. I am still unable to hold a full time job, and I fell ill in 2002. I don't know how many of my symptoms I can blame on Celiac, but I'm assuming quite a few are related. I'm stuck with the heart problem, though, no matter how much better I get. That's the price I paid for the doctors taking their time to diagnose me. Trust us when we say, go gluten free. If you wait because you aren't symptomatic, then you'll have no one to blame but yourself when the day comes in 2 years or 5 years or 10 years when you ARE having problems you can't handle, and you don't want that. Why not just make it easy on yourself and deal with the disease now before things get worse...if you think Celiac makes life unpleasant, try lymphoma.
Gillian
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#5 KaitiUSA

 
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Posted 12 May 2005 - 05:07 AM

I see where you are coming from but ifyou look at the risks that celiac3270 put up there is it worth it. Your life expectancy goes down significantly and you are 40-100 times more likely to get cancer and other life threatening or disabling illnesses. Not just cancer but diabetes, osteoporosis, kidney/liver/gallbladder/pancreas complications, etc.
The diet is not bad...we can eat some really good foods. You can still enjoy a lot of food. Is it worth your life and health? You eat to live not live to eat ,which I think this country has that turned around.
There are no degrees in celiac...you simply have it or you don't and if you do you have to follow the diet.
Some people have symptoms and some don't get symptoms...but they still have it and still need to follow the diet. It damages your body..you only get one body and I think its safe to assume that if you find out one day at the doctors office that you have stage 4 cancer that you will wish you had done everything you could to prevent that ( my grandpa was diagnosed with stage 4 cancer one day and not even 6 months later he died...and I bet he was going over everything he could have done to help himself to decrease chances)
So don't just think about the now which they teach you to do now...think about the future as well.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#6 lovegrov

 
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Posted 12 May 2005 - 05:08 AM

I can look back and see that I had celiac as a kid and then for a few years in my 40s. My only real symptoms were DH, which I kept under control with dapsone, and a little fatigue. Then suddenly I was nearly dead and in the hospital for 11 days because of malnutrition. I missed 10 weeks of work and wasn't really right for nearly a year. This came on very, very suddenly. I was so weak I couldn't walk by myself or think clearly enough to hold a conversation. If your celiac is advanced enough to see on a biopsy, you will almost without question eventually get sicker and perhaps develop other autoimmune diseases.

richard
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#7 mmm..gluten

 
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Posted 12 May 2005 - 06:03 AM

Magnus, I totally agree. I feel the same way as you do - occasional bowel issues, but other than that totally asymptomatic. I have only been gluten free for a week or so, so I haven't noticed any changes yet, but my initial reaction was exactly the same as yours. I still haven't decided what I think yet, but I have to admit I was laughing hysterically at the "kissing someone who ate gluten" thread. It seems so patently absurd that I damn near fell out of my chair. I was close to writing everyone off as a bunch of hypochondriac martyrs, but I figured I should at least give gluten-free a shot and see how I feel.

I'll report back after my next gastro appt in 6-8 weeks and let you know the findings, but I am still definitely on the skeptical side of the fence myself. I mean, come on, realistically, if 1 in 250-300 people have this thing and it's such a big deal, why do we not see the CDC, NIH, or whomever coming out and urging everyone to get tested? With a market this big, the drug companies should be all over this if it's that common! I just don't get it yet, but I'm open-minded enough to try it, read the boards, and listen to people with experience in it until I feel I can form my own opinion.

Just my .02..
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Northern VA
"Diagnosed" April 2005 - currently playing with gluten-free diet

#8 KaitiUSA

 
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Posted 12 May 2005 - 06:25 AM

Actually 1 in 133 people have it and studies have shown it may be as much as 1 in 100. Celiac disease is finally starting to get some attention because it was thought to be uncommon and doctors were not taught about it because of how uncommon it was. Now, things are different and alot of doctors do not know what they should yet but there has been alot of progress.

As for you being gluten free for a week...thats not enough time to even expect changes. It took me 3 months to feel really good again and a few more to get back to normal.For some people it takes longer then that and for some shorter...it varies but you can't say o I don't feel better after a week so screw the diet...if you have the diagnosis then you need to follow it...they dont just hand out a diagnosis for no reason.

I thought the same thing you did at first...I went through a denial stage where I think alot of people go through that.

Your lucky thats all the symptoms you had before diagnosis...at least they caught it before your symptoms got really bad. I for one had 2 years of pure hell before diagnosis and some went through it way longer then me.
The fact is that some people do not get symptoms with celiac

your fate is in your hands though...nobody can control what you eat but you
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#9 luvs2eat

 
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Posted 12 May 2005 - 06:28 AM

My ONLY symptom that sent me looking for answers was diarrhea. Like you, Imodium was part of my daily diet. I had no abdominal pain (lots of NOISE, but no pain) or any other symptoms. It was reading about all the things that can happen down the road that convinced me that going gluten-free was mandatory.

I've been completely gluten-free for almost 3 years now... and almost 3 years later, I'm noticing new and different symptoms cropping up... arthritis-like pain in my joints (yea, it could be age, I'm 52) and I've had blood work to rule out Lupus.

celiac3270s list of other diseases related to Celiac is awesome. A must read.

Good luck.
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#10 Canadian Karen

 
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Posted 12 May 2005 - 06:36 AM

Okay, mmm..gluten, I was ready to jump all over you with that post as it seemed that you were ridiculing everyone one here who, out of necessity, takes celiac disease as seriously as they do because of their level of sensitivity. But after thinking about it for a few minutes, we have to remember that people who have not lived with this disease for a long time and have only just learned about it quite often feel the way you do, especially when they have very mild symptoms or are totally asymptomatic. But rest assured, there are people out there who are so severely affected by gluten that even the slightest amount sends them into a tailspin of pain, sickness and quite often, a trip to the ER.

The medical establishment unfortunately, has long been "under educated" about celiac disease. Even my own doctor admits this. She says that in med school, they were taught that celiac only affects children, and mostly those malnourished with extended bellies. Well, doctors are only now just starting to realize the scope and magnitude of this disease, and the retail sector is not far behind. If I compare gluten free products on the market two years ago to what is available today, there has been an astounding "wake-up" the last few years. The number of gluten free products available now are 100 fold from what they once were. Even main stream shelf items at drug stores (vitamins, medications, etc.) are starting to print "gluten free" right on their labels......

mmm..gluten, you didn't mention how you came to be diagnosed. If your symptoms are so minute, how did you come to be tested for this disease? Just curious, since most of us end up suffering needlessly for over a decade before we finally get the proper diagnosis......

If you google up "refractory celiac disease", you might understand more why this disease is given the respect it deserves on this forum......

If you do decide to continue with the gluten free diet, we are really quite a bunch of helpful people who are always willing to help out in any way we can. There is not question we consider "stupid" on this forum, since this is such a difficult disease to wrap your brain around...... most of us are still trying to get it!! LOL!

Welcome to the forum.

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."
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#11 mmm..gluten

 
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Posted 12 May 2005 - 06:46 AM

Actually 1 in 133 people have it and studies have shown it may be as much as 1 in 100. Celiac disease is finally starting to get some attention because it was thought to be uncommon and doctors were not taught about it because of how uncommon it was. Now, things are different and alot of doctors do not know what they should yet but there has been alot of progress.

Interesting.. Hopefully this leads to more tasty gluten-free foods. Some of the stuff out there tastes like the packaging it comes in! :)

As for you being gluten free for a week...thats not enough time to even expect changes. It took me 3 months to feel really good again and a few more to get back to normal.For some people it takes longer then that and for some shorter...it varies but you can't say o I don't feel better after a week so screw the diet...if you have the diagnosis then you need to follow it...they dont just hand out a diagnosis for no reason.

Agreed, that's why I said I haven't noticed any changes yet. Notice I also never said "screw the diet". Jeez, you people are touchy. Must be all the crappy tasting gluten-free food! Anyway, how do they confirm that the gluten-free diet is "fixing" things? Another endoscopy?

Your lucky thats all the symptoms you had before diagnosis...at least they caught it before your symptoms got really bad. I for one had 2 years of pure hell before diagnosis and some went through it way longer then me.

Yeah, my doc said it was in the "beginning stages", although I am not exactly sure what that means or how he figured it out. Anyway, like I said, I'm going to give gluten-free a shot and see what happens.
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Northern VA
"Diagnosed" April 2005 - currently playing with gluten-free diet

#12 bean

 
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Posted 12 May 2005 - 06:46 AM

First of all, are you *sure* that you only have occassional bowel problems as your symptoms of Celiac?

Because I *never* would have guessed that I had any intestinal problems at all. I don't have diarrhea, constipation, or any of those other fun bowel problems. I do get heartburn after I eat grains, but other than that, I would have considered myself symptom free.

Fortunately, I have a doctor who got really worried when I told her I went to this "Free Bone Scan" test that some wacky chiropractor was having that told me that I have osteopenia (the precursor to osteoporosis). The testing system they were using was some cheap little unit that isn't very accurate and so my doctor sent me for a "real" scan (Dexascan). It turns out that I have osteoporosis. And without the Dexascan - I never would have known. I am active and physically fit. I was doing all of the things that should have prevented it (lots of calcium, exercise, etc.) but this is my big symptom - and it's completely silent. (BTW - I just turned 32 last month).

When I was a little girl I had no classic symptoms either - but the enamel didn't form correctly on my teeth. So, there's another common symptom of Celiac - but it isn't something that affects your everyday life, so no one tested for Celiac or (obviously) did anything about it.

As for not having symptoms - or thinking that they aren't problematic enough to bother you - maybe you ought to find out for sure if that's the case. It is extremely common for adult Celiacs to have bone problems (such as osteoporosis) and not have a clue.

There are a lot of varied, random *silent* symptoms that affect people at very deep levels. Be careful how you talk about the triviality of your symptoms. You might just not know.
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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)

#13 mmm..gluten

 
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Posted 12 May 2005 - 06:54 AM

Okay, mmm..gluten, I was ready to jump all over you with that post as it seemed that you were ridiculing everyone one here who, out of necessity, takes celiac disease as seriously as they do because of their level of sensitivity.  But after thinking about it for a few minutes, we have to remember that people who have not lived with this disease for a long time and have only just learned about it quite often feel the way you do, especially when they have very mild symptoms or are totally asymptomatic.  But rest assured, there are people out there who are so severely affected by gluten that even the slightest amount sends them into a tailspin of pain, sickness and quite often, a trip to the ER.

The medical establishment unfortunately, has long been "under educated" about celiac disease.  Even my own doctor admits this.  She says that in med school, they were taught that celiac only affects children, and mostly those malnourished with extended bellies.  Well, doctors are only now just starting to realize the scope and magnitude of this disease, and the retail sector is not far behind.  If I compare gluten free products on the market two years ago to what is available today, there has been an astounding "wake-up" the last few years.  The number of gluten free products available now are 100 fold from what they once were.  Even main stream shelf items at drug stores (vitamins, medications, etc.) are starting to print "gluten free" right on their labels......

mmm..gluten, you didn't mention how you came to be diagnosed.  If your symptoms are so minute, how did you come to be tested for this disease?  Just curious, since most of us end up suffering needlessly for over a decade before we finally get the proper diagnosis......

If you google up "refractory celiac disease", you might understand more why this disease is given the respect it deserves on this forum......

If you do decide to continue with the gluten free diet, we are really quite a bunch of helpful people who are always willing to help out in any way we can.  There is not question we consider "stupid" on this forum, since this is such a difficult disease to wrap your brain around...... most of us are still trying to get it!! LOL!

Welcome to the forum.

Karen

Apparently people here have thinner skins than most, so I will try to keep that in mind. You are exactly right in interpreting my message though - I just didn't get it. Like I said, I had some weird bowel stuff for 7-8 years and never thought about it much until someone mentioned that, if I was bored and not doing anything, I should get a gastro to check me out just to be sure. I never really thought about it, so I figured it was worth a shot. I went to the gastro and he did a blood test. He told me that it looked like I might have CS but he needed to do an upper endoscopy to be sure. I scheduled the endoscopy and had that done and waited for the results. He found a hiatal hernia, an erosion in the distal bulb, and what he said were the "beginning stages" of CS. He told me to go on a gluten-free diet and come back and see him in 6-8 weeks. So, I came to be diagnosed because someone told me to see a gastro. I always just figured "hey, a little diarrhea, no big deal".

This was a while back, but I have only been on the diet a week because of all the false starts. First, I figured I would eliminate obvious gluten on my own - that seems easy enough. Well, little did I know that the stuff people were passing off as gluten-free really wasn't. I did Spelt for a week or two before I did my own homework and realized that the clerk had no idea what she was talking about, so I had to start over.

Anyway, thanks for the reply and I do intend to give this thing a fair shot and see what happens. However, what I will not do is sugar coat my opinion and not call a spade a spade because somebody has a thin skin about it. I gave you my opinion, as an outsider, of my first impression of reading the forums as a guest. That's not necessarily my opinion now nor will it be later, but I reserve the right to decide about that later.. ;)
  • 0
Northern VA
"Diagnosed" April 2005 - currently playing with gluten-free diet

#14 KaitiUSA

 
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Posted 12 May 2005 - 06:55 AM

Interesting..  Hopefully this leads to more tasty gluten-free foods.  Some of the stuff out there tastes like the packaging it comes in!  :)

Jeez, you people are touchy.  Must be all the crappy tasting gluten-free food!  Anyway, how do they confirm that the gluten-free diet is "fixing" things?  Another endoscopy?

There are some great gluten free foods out there it's a matter of finding the right brands. There is alot we can have even at the regular grocery store...brands like Kraft are a godsend for us.

They can use blood tests to monitor compliance of the diet or they can do another biopsy in 6 months to see if the damage has healed..

I really am not appreciating the rude remarks you are making..please be respectful to everyone on this board...you will find we are on your side not opposing sides.

Keep in mind I was in your position at one point in time so I do know where you are coming from and if you need any help with what things you can and can't eat I would be more then happy to help. There are a bunch of brands that will list wheat,rye,barley,oats right on the label if they contain any and those brands are "normal" brands. You will find there is more good stuff to eat then you think. I know some of the stuff is crappy tasting but when you find the right brands then you may change your opinion.
  • 0
Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#15 Canadian Karen

 
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Posted 12 May 2005 - 06:57 AM

mmm..gluten, forgot to mention something.....

I LOVE YOUR PICTURE!!! Is that what you do really? Work with dolphins? My daughter would TOTALLY ENVY YOU!!! Last year, when she was asked what she wanted for her birthday, she said, "Find somewhere where I can swim with the dolphins!!!!"........ (Unfortunately, that was not possible!)

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




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