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How Strict Do We Need To Be?


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#16 Canadian Karen

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Posted 26 March 2006 - 08:27 AM

Hi Radman! Welcome to the board!

This is an interesting thread. It reminds us all that doctors are not the "walking medical encylopedias" we mistakenly think they should be. So many of us have the misconception that if you have become a doctor, you automatically should know EVERYTHING there is to know about EVERY single disease plaguing this world. We are desperately trying to reach out to the medical community to educate them about celiac, but the thought of "us laymen" trying to educate doctors doesn't go over too well in many circles (including the medical community, of course! ;) )

Below is a link that I think you will find interesting in regards to our "brainstorming" and trying to get our message out:

http://www.glutenfre...showtopic=13475

Also, I am also of the opinion that even the most miniscule amount of gluten will do damage. I look at it this way. Gluten is toxic to us. Our body identifies it as poison. Look at it like astbestos. It is okay to continue to expose yourself to low level asbestos for any length of time? With gluten, any low level continued consumption of it is akin to slowly poisoning yourself.

Also, you state that at 42 years of age (btw, I am 42 also!) you have not developed any other autoimmune disorders, but then in the next paragraph, you go on to state that believe you already have developed osteoporosis to some degree. That is contradictory, since osteoporosis is considered autoimmune (see below link).

http://www.nlm.nih.g...yclopedia_O.htm

Personally, I am thrilled that we have a medical practitioner on board here to give us a difference point of view and a different perspective on things. (Although, please do not enter any thread that says "doctor bashing" in the title!!! :P ;) ) There are a few of those around! :lol:

The best advice I can give you is to read, read, read (this board). The information on here is incredible. The people on here are awesome, supportive, informative and wonderful. Also, if you ever see a copy of "Dangerous Grains" around in a bookstore anywhere, pick it up - it's an eye-opener!

Welcome to the community!

By the way, our motto here is that no question is too stupid to ask. The ONLY stupid question is the one that is NOT asked! And this includes doctors, too. Don't be afraid that you will be pre-judged and "expected to know" everything just because you are a doctor. Celiac is a learning curve for everyone!

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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#17 mouse

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Posted 26 March 2006 - 08:30 AM

I won't go into my over 30 years of being treated like a hyppchrondiac by the majority of doctors. Some mini flu's (as I called them) too frequently to be normal with vomiting and D. So many meds that I had to really concentrate to not take the wrong one at the wrong time. MANY diagnosis' that went away after going gluten free after my Celiac diagnosis. I was not the classic Celiac until several months before and then I had already been labed a hypo so I was blown off until "the lightbulb went off" according to my doctor. He said at the follow up appointment that I probably was two weeks away from no recovery. My intelligence has dropped considerably and after two years gluten-free, I don't see how it will improve much more. MY concern and why I am writing this posting to this thread, is that you are a Cancer doctor. From the few books that I have read about Cancer and Celiac, there is SOMETIMES a correlation. They has been, many times a marked improvement with a Cancer patient when they go gluten-free. Maybe it would not hurt, that when you run blood tests on your patients, that you throw in the Celiac FULL PANEL test, as just a precaution.
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"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004
Allergies - corn, soy, casein, egg whites and wheat
Morphia Scleroderma
Osteoarthritis
Hypothyroid and Hperthyroid
Essential Tremors
Asthma
Migraines
Fibromyalgia - diag. in 1978 when they called it Fibrositis
PAD Peripheral Artery Disease
Angina and Atrial Fibrillation
Gluten Ataxia
Vitiligo
Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.
Ocular Myastenia Gravis

#18 Carriefaith

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Posted 26 March 2006 - 08:39 AM

When gluten is ingested, antibodies start attacking the villi in the intestine, which can result in many nutritional, mineral, and vitamin disorders. In order to stop these antibodies from attacking, an individual must be 100% gluten free. Celiac disease expresses itself, symptom wise, in many different ways. Some people have one or two symptoms like anemia and fatigue and others like myself had all the classic symptoms; however, in each case, the villi damage can be the same. I personally cannot cheat because my reactions are so severe. I also have a wheat allergy, so when I accidently ingest wheat, I get celiac disease symptoms and wheat allergy symptoms, not fun!
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#19 Canadian Karen

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Posted 26 March 2006 - 08:48 AM

I should also mention that celiac does present itself so differently in each individual. I myself am plagued by chronic diarrhea (for over a decade now), severe anemia, brain fog (I hate that stoned feeling!) and typical gastro-intestinal difficulties (pain, excessive gas, etc. etc.) My villi are as flat today as they were when diagnosed 4 years ago (for the second time, but that's another story..... <_< ) Although my bloodwork shows that I am religiously following the gluten free diet and my antibodies are in the normal range, my body is just too damaged at this point to heal.

The funny thing is, when I had my bone density test, my bones were stronger than Kryptonite! :lol: ;) Go figure, eh? Just goes to show you, genetics still plays a huge part, regardless of severity of disease. Obviously, my family might have the genes that destroy parts of our bodies, but when it comes to our bones, we are a hearty lot! That is what makes this disease so incidious, it is quite sneaky......

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

#20 radman

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Posted 26 March 2006 - 08:56 AM

I understand the frustration, believe me. Realize that I have been a physician since 1989 but only recently made my own diagnosis of celiac. That should tell you something. It is hardly my attitudes that caused my own delayed diagnosis, and resulting years of misery. It is a lack of appreciation for how common this problem is and the fact that the symptoms are highly variable.

This lack of appreciation can be changed. Despite what some of your experiences may tell you, I assure you that doctors are not monolithic jerks and shouldn't be stereotyped that way. They just need to be better informed. I share an astonishment that this has not already occurred, but it is what it is. Anger won't change it. How about a patient advocacy group for celiacs that interfaces with the professional societies, the public, payors, and government to increase awareness and improve education? This has worked wonders in the cancer field (with some caveats).

And gfm, you make very valid scientific points. My interest, though, has to do with the effects of various amounts of gluten exposure to various patients with differing gluten reactions, with the endpoint being real clinical outcomes, ie. effects on frequency of various long term morbidities such as osteoporosis, intestinal lymphoma, etc. Again, with my reactions I don't care about occasional symptom flares, I can deal with that with my current level of symptoms. I care about real world long term consequences of this. I will be trying to find some clinical research that may shed some light on this, as well as listening carefully to what others on this board tell me about their own experiences.

I do wonder about what symptoms I may have, and not appreciate, due to their slow development (as has been pointed out very well to me here). As I remain gluten free, I am hopeful that I may begin to feel better in ways that I did not expect.

Obviously, the prudent person would simply avoid all gluten exposure until we know more about the above. As I've said, however, there is a tremendous amount we don't know about this disease, and everyone wants to apply their personal experience to others as if we are all the same. I don't believe we are all the same. If I question the 100% gluten free all the time approach, it is just curiosity and I certainly don't advocate one way or another. Just learning...
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#21 Canadian Karen

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Posted 26 March 2006 - 09:20 AM

Radman,

You are very correct in your statement that the medical establishment needs to be more informed.

My own family doctor (who is about the same age as me) herself has admitted (after decades of my unexplained gluten-related medical issues that finally were answered with the celiac diagnosis through bloodwork) that the only thing she was taught in med school regarding celiac was to look for it in malnourished children with protruding bellies. Since my diagnosis and her self-educating herself regarding celiac, she is now much more aware of its prevalence and it is way up there now on her list of things to look for first. In fact, she just diagnosed a patient of hers who is 80, and has suffered for years upon years. Hey, it's never too late!

It my most fervent hope that you feel welcomed here to this board and this community. If you ever do come across a post that has a "bitter" feeling to it, please take it with a grain of salt. There are many people here who have basically been ridiculed relentlessly and told by their doctors they are hypochondriacs and "it's all in their head", or they are "depressed", the list goes on....... before the bloodwork finally shows their antibodies are through the roof........

We really can be quite a wacky lot! Hope you bring your sense of humour to the board also! We really enjoy those! ;) :lol: A lot of us use humour as a way of coping with this disease, it makes it that much more bearable......

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

#22 gfp

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Posted 26 March 2006 - 09:23 AM

x :ph34r: :ph34r: :ph34r: :ph34r: :ph34r: :ph34r: :ph34r: :ph34r: :ph34r: :ph34r:
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#23 Carriefaith

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Posted 26 March 2006 - 09:32 AM

Here are some articles:
http://www.ncbi.nlm....9&dopt=Citation
http://gidiv.ucsf.ed...ings/fasano.pdf
http://www.ncbi.nlm....0&dopt=Citation
http://www.blackwell...journalCode=ajg
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#24 frenchiemama

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Posted 26 March 2006 - 09:49 AM

I'm not sure if very small amounts will cause long term problems, and frankly, you sound unwilling to believe it anyway. I'll just say that I "treat it like an allergy" because I don't like feeling sick and I don't like breaking out in a DH rash (aka living nightmare). I also get hives now and joint pain. I'm not sure why anyone would expose themselves to this intentionally, or be lax in their habits regarding cross contamination.
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Carolyn


"When the going gets weird, the weird turn pro. "
- Hunter S. Thompson

#25 happygirl

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Posted 26 March 2006 - 09:51 AM

Just a couple thoughts:

I would recommend reading "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green of Columbia University. Came out this spring. Great book and gives great insight to celiac disease.

Something that I find fascinating is that 70% of Celiacs (whether they are diagnosed or undiagnosed) are "silent Celiacs"....i.e., no symptoms. at all. However, the autoimmune reaction is still occurring and damage is being done. So for someone to eat Rice Krispies and have no symptoms, and me to eat Rice Krispies and be miserable for days or weeks.....the outward consequences are different, but the villi in both of our intestines are being blunted.
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#26 radman

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Posted 26 March 2006 - 10:25 AM

Thanks everyone. Wow by the time I get through the books and articles, maybe I should take up a sideline practice in the field :lol:

And frenchiemama, come on, "frankly it doesn't sound like you'd believe it anyway", where did that come from. I've been carefully listening to all the helpful comments others have offered, and I appreciate all of them.

Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza :(
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#27 Guest_nini_*

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Posted 26 March 2006 - 10:28 AM

Thanks everyone. Wow by the time I get through the books and articles, maybe I should take up a sideline practice in the field :lol:

And frenchiemama, come on, "frankly it doesn't sound like you'd believe it anyway", where did that come from. I've been carefully listening to all the helpful comments others have offered, and I appreciate all of them.

Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza :(


my favorite pizza is made using Kinnikkinick's pizza crust, hunt's tomato paste, garlic powder, gluten-free pantry Italian seasoning and Mozzerella Cheese with Hormel Pepperoni... love it...

second fave pizza is Chebe bread mix (without using cheese in the mix and adding baking soda and baking powder to the mix-instructions on bag) baking crust first then adding toppings and baking til done

my daughter's fave pizza is Amy's rice crust cheese pizza, with extra cheese on it...
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#28 frenchiemama

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Posted 26 March 2006 - 10:34 AM

Thanks everyone. Wow by the time I get through the books and articles, maybe I should take up a sideline practice in the field :lol:

And frenchiemama, come on, "frankly it doesn't sound like you'd believe it anyway", where did that come from. I've been carefully listening to all the helpful comments others have offered, and I appreciate all of them.

Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza :(



To me it just seems like you came on here with your mind already made up. Just my opinion.
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Carolyn


"When the going gets weird, the weird turn pro. "
- Hunter S. Thompson

#29 Canadian Karen

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Posted 26 March 2006 - 10:46 AM

Radman,

The first thing you need to do if you are going to consider weeding out all sources of gluten is to download the delphi list. This is a list of mainstream gluten free food items in the supermarket. The list is categorized into convenient categories to save time when you are in the middle of the aisle trying to read labels! (Picture this: me in the middle of the aisle with TWO shopping carts, the one I am pushing holding my twin boys and youngest girl and the one I am pulling holding all of my groceries! :D EVERYONE knew when I was there!! LOL). Anyway, this list is an absolute godsend.

Go to http://forums.delphi.....tyurl=/celiac

on the left hand side, click on "Health & Wellness". (You will need to register, but it is free and it is soooo worth it!)

Then click on "On Line Celiac Support Group" (usually the first forum that comes up).

Then scroll down to "Gluten Free Products List". When you click on that, the list will come up in all the different categories. It is a wonderful resourse.

Also, there are some mainstream companies who are very celiac friendly. Kraft is one of them. Kraft is a safe choice for us as they will ALWAYS clearly indicate if there is any gluten ingredients. We love Kraft!

Also, if you happen to love cooking and want to experiment with gluten-free recipes, there is a section called the "Best of Mirielle". Mirielle is a celiac lady who owns her own gluten free restaurant, she is an amazing woman and she posts thousands of recipes for us.

Okay, I am sure you are past the "information overload" point, so I'll stop there!

Take care,
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

#30 Lisa

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Posted 26 March 2006 - 10:59 AM

Radman:

I for one am tickeled silly to have a doctor on board. Welcome, welcome, welcome.

I have been hanging around this site for about 7 months and the folks here extremely intellegent, dilligent and wonderfully caring. I think that you will find this as well.

Before dx with Celiac, I literally could not leave my house. (The bathroom as five seconds away, and I usually got there in six seconds :huh: ) I have learned so much here as my doctor had no information to give me.

You are probably overwhelmed by now with all the sources submitted to you. Please take some time here to read through alot of these posts. It has been a God-send to me.

Welcome again and we are all glad that the diet is working for you. :)

Lisa
  • 0
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien


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