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How Strict Do We Need To Be?


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489 replies to this topic

#31 nettiebeads

 
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Posted 26 March 2006 - 11:30 AM

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 :(

It's okay, but no cigar. I love making my own crust with Bette Hagman's receipe. Fantastic!!!
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#32 gfp

 
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Posted 26 March 2006 - 11:40 AM

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

Yes but to be fair he has been flooded with information, you can't expect a MD to just accept it all at face value and what you or I skim or read quickly and extract what we understand is more work for a MD that needs to look into deeper implications and digest it a lot deeper, not to mention cast away years of misconceptions.

He is bound to want to check the medical journals and there is a lot of information, a lot of them contradictory!

When you think we came to it from the symptoms, most of us had never heard of celiac disease before we or a loved one was diangnosed whereas an MD has forget to get rid of years of knowing about a extremely rare disease only children get (as it were)
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#33 Canadian Karen

 
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Posted 26 March 2006 - 11:48 AM

I agree, gfp. We all agree that there is a lengthy process (i.e. grieving, denial, etc.) to go through before we get to the acceptance point. I am sure that doctors are no different. We all deserve time to let things sink in, and we all have to remember how difficult it was in the beginning to grasp the severity of this disease.

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......

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#34 Lisa

 
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Posted 26 March 2006 - 11:49 AM

Very very true. I had never heard of Celiac Disease before mine kicked in, as I am sure many others were in the same boat. If it were not for the interet and this site, I would still be in the bathroom thinking I was dying of cancer.
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Lisa

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#35 gfp

 
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Posted 26 March 2006 - 11:56 AM

I agree, gfp. We all agree that there is a lengthy process (i.e. grieving, denial, etc.) to go through before we get to the acceptance point. I am sure that doctors are no different. We all deserve time to let things sink in, and we all have to remember how difficult it was in the beginning to grasp the severity of this disease.

Karen

I have yet to know a single person that has gone all the way gluten-free... (not just the eating stuff that seems to be OK) that didn't first go for denial...

hands up anyone who was going to be a "not too sensitive" , I remember I was going to be OK with oats and I was convinced I was more of a borderline celaic...

ha... was I wrong... indeed I now doubt a borderline celaic exists, just those who have gone for the full gluten-free and those who have cheated or allowed themselves to slip.

I realise that sounds harsh but find me a single person who has been 100% strict for 3 months and has not decided afterwards that the tiniest amount gives them some symptoms, even if they are not gastro ....

I fid celaics are firmly divided in two groups, those who tried and those who don't have symptoms. Perhaps its biassed and only the worst afflicted ever try a FULL gluten-free diet but I'm waiting for responses on this on track of the original thread.
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#36 frenchiemama

 
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Posted 26 March 2006 - 12:09 PM

I have yet to know a single person that has gone all the way gluten-free... (not just the eating stuff that seems to be OK) that didn't first go for denial...

hands up anyone who was going to be a "not too sensitive" , I remember I was going to be OK with oats and I was convinced I was more of a borderline celaic...

ha... was I wrong... indeed I now doubt a borderline celaic exists, just those who have gone for the full gluten-free and those who have cheated or allowed themselves to slip.

I realise that sounds harsh but find me a single person who has been 100% strict for 3 months and has not decided afterwards that the tiniest amount gives them some symptoms, even if they are not gastro ....

I fid celaics are firmly divided in two groups, those who tried and those who don't have symptoms. Perhaps its biassed and only the worst afflicted ever try a FULL gluten-free diet but I'm waiting for responses on this on track of the original thread.



I never went through denial. I didn't like it, but I could clearly see the damage that gluten was doing to me physically. Since being diagnosed on April 21st of last year I have never once eaten gluten intentionally.

In any case, comments like this "I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc." really rankle me. If you don't want to take celiac seriously, that's your business. I do take it seriously. I am also very, very tired of people thinking that I am being picky or a hypochondriac.
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Carolyn


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#37 Nancym

 
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Posted 26 March 2006 - 12:28 PM

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 kind of doubt they'd do that sort of study on humans, at least intentionally, since it is kind of like wondering how much poison you can give someone without making them really, really sick. Instead, wouldn't you do things like rat/mice studies?
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#38 gfp

 
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Posted 26 March 2006 - 12:41 PM

I never went through denial. I didn't like it, but I could clearly see the damage that gluten was doing to me physically. Since being diagnosed on April 21st of last year I have never once eaten gluten intentionally.

In any case, comments like this "I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc." really rankle me. If you don't want to take celiac seriously, that's your business. I do take it seriously. I am also very, very tired of people thinking that I am being picky or a hypochondriac.

The question really is do you eat out? Do you have gluten in your house?
I notice you say intentionally which leads me to beleive you have been caught out?
I started off eating bread wioth the gluten free logo which passed the 200ppm test required in the UK. I took medical advice that this was safe.and would be fine (which turned out to be wrong).. I took my food and ate it in dangerous places (like at work when someone else may have dropped crumbs on your desk and I have risked things that have had "natural flavouring" on the packet.

.. and I have come to the conclusion... as you that

"I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc."

is not even close to gluten-free.... heck, I take risks from time to tinme but eating a burger that touched a bun? That goes out of the realm of playing russian roulette and into playing russian roulette with six bullets and going first!

I am now fastidious about washing my hands before I eat, not touching my mouth when im out in case for instance my train ticket goes through the same machine as someone elses who has been eating gluten... because it took me time to learn that 100% gluten free is not eating something out of any tin or packet ..
I buy my meat by the half cow/sheep and butcher it myself because no butcher is gluten-free... a lot of them eat sandwiches and handle other products that contain gluten .. all of this is paranoia .. right?
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#39 mouse

 
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Posted 26 March 2006 - 12:47 PM

My gp who diagnosed me has now diagnosed over 60 patients with this disease. He now knows how to diagnose, but knows nothing about the diasease itself. I am now giving him and his PA books to read which they are doing. He diagnosed one women who had a rash on her hands for 15 years and no one could help her clear it up. My dr. did know that D H was a sign of Celiac, after he ran my blood test and he tested her. Her count came up very high. Even tho my gp feels that I definately had D H, I do not have a firm diagnosis with biopsy. The rash on my hands disappeared within 6 months after going gluten-free and there was nothing to test when I finally had to see a dermologist for the Morphia Scleroderma. 6 months after my diagnosis part of my back caved in and they took 3 biopsies and I was diagnose with Morphia Scleroderma. I have now been diagnosed with a neuropathy in both feet. My hands get tested this coming week. My Osteo test came back normal and I am so very thankful for that and my genes. I am soon to be 64 and since I was so near death by the time my dr. said Celiac, I guess I am where I am going to be. I still hope not as I am not ready to lay down and die. The exhaustion I am living with does not make for a good quality of life. I am still young enough that there are still things I want to do. I guess because this undiagnosed disease almost killed me, that I am more then happy to embrace this diet completely. I have to admit that when I read that I would need my own toaster, I thought overkill and did not do that for the first year. I did not make toast very often, but as my body healed, I was noticing how a crumb left on the counter would make me sick. We now have two toasters and my husband uses only one section of the counter for his bread and toast. I also have to say that I have never been a health vitamin junky, but now find that I am taking so much more today that I have ever done in my life. Hoping for some energy I suppose. I run my vitamin list with my gp's pa and we make sure I am getting enough and not too much of the kind that can hurt me. I had never heard of this disease until two years ago. I certainly will not lecture on what hidden things can be going on within your body. Each of us must make our own decisions on this disease. Thank you for joining this forum and hopefully as you gain more knowledge you will be happy to share it with us.
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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

#40 Guest_cassidy_*

 
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Posted 26 March 2006 - 01:09 PM

My experience has been that after going gluten-free, so many problems that I didn't know were related, went away. I used to have reflux all the time (I was about to have my second surgery), I had daily headaches, I used to pee all the time, I had acne on my back for the last 17 years, I was taking daily allergy medication and tons of reflux medication. All those things went away after going gluten-free. Of course, all my intestinal symptoms went away as well. I never thought those things would be related.

If you have any health problems at all, you may not realize that they are due to celiac and it may only becme obvious after you are gluten-free for a while. I would think it is worth a try. Also, if it caused all these random health problems for me, if you aren't 100% gluten-free, what problems will you have in the future without even realizing they are due to gluten?

Also, the reason that I'm so cautious with the food I eat is because even a very small amount will get me very sick. I have eaten a supposedly gluten-free Amy's meal and been sick for days when that is the only thing that could have caused it. It isn't worth it to me for the short term pain or the long term unknown.

Only you can decide how much gluten is too much for you, but the general concensus on the board is that you must be 100% gluten-free.
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#41 teankerbell

 
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Posted 26 March 2006 - 01:32 PM

Thanks folks, and I do respect your wisdom of experience.

However, I don't for a minute believe that a celiac is a celiac is a celiac. Classical celiac occurs in children with severe malnutrition, bloated abdomens, profuse watery diarrhea with dehydration, even death.
Man, I could eat a loaf of bread a day and never come close to that type of reaction (in fact I have done that before). Actually, I believe the problem with under-diagnosing of celiac is due to the highly variable symptoms and severity for person to person.

I don't think exposure to gluten is causally related to other autoimmune diseases. These are likely due to genetic susceptibility to autoimmune problems, of which celiac is one. These genes travel in clusters and no doubt many individuals with celiac have the genes causing susceptiblity to these other autoimmune problems (thyroiditis, rheumatoid arthritis, etc.). However, I am 42 years old and have been exposed to gluten virtually every day, and I have absolutely no other autoimmune problems. At my age it is highly unlikely that I ever will.

Let's think about the medical problems associated with untreated or poorly treated:

Osteoporosis: This is my number one concern. I beleive I may already have some degree of this. It is a very serious problem. Studies have shown that there is a 10-20% increase in bone density in the first year or two on gluten free diet. As concerned as I am, thought, I suspect occasional slip ups will have very little impact (at least for my level of reaction). Osteo is caused by long term calcium deficiency, not occasional diminished absortpion.

Other Nutrient Deficiencies: Haven't researched this yet, but I don't have any problems I would relate to other nutrient deficiencies (eg. anemia, fatigue, skin problems, etc.). Besides, just like the above, this would be a long term issue.

Damage to Instestine: Hmm, don't like the sound of this, but everything I've read says it is completely reversible. Still...

Cancer: the real issue hear is small intestinal lymphoma. As I've said this extremely rare, and I'm only minimally concerned about this. Now, if one was a frequent cheater, or denied the diet altogether, that is a different story. It is chronic inflammation that leads to the malignancy.

These are the main issues. Given my level of reaction, I don't think I need to be too rigid. I avoid bread, pasta, etc. But I'll simply take the bun of the burger or the croutons off the salad myself.

This is my own non-expert assessment based on my own level of intolerance, I am not suggesting others do this, just wondering what types of assessments others are making for themselves.

By the way, trust and respect your doctor if he/she seems competent, but don't consider their advice etched in stone in most cases. The knowledge about what is ok and not ok for celiacs is just beginning to be studied. Hopefully more answers will be forthcoming from properly conducting clinical research. In the meantime there is a lot of judgement involved.


Dr.,

I am a 44 year old woman and I have been recently diagnosed with Rheumatoid Arthritis, maybe. I have had 3 blood tests and the Rheumatologist could not definitively diagnose me, even though my RA factor was above normal each time I was tested. All she could say is I have some sort of auto-immune problem. Fast-forward a few months later - I take a stool test and gene test and both come back positive for both gluten and the celiac gene. I had no OTHER symptoms except for bloating and very gassy.

I know most doctors use the gold standard of the biopsy, but there have been many patients who have tested negative for that as well as the blood test and continue to be sick.

The big test is how one feels after coming off the gluten for a period of time.

After coming off gluten for over a month for me, the bloating and gas has subsided, substantially. The RA symptoms have not gone away, but I expect that will take at least six months before I notice a difference. I have "cheated" a couple of times, and I have paid the price intestinally.

Please read Dangerous Grains, this provides some very insightful information about the connection to Celiac and a whole list of other illnesses. There are also a lot of articles in Medical Journals on this subject as well.

Please have an open mind about this and not rely completely on your medical education. Dr.'s are taught to treat the symptoms versus getting to the root of the problem and that is why a lot of illnesses go misdiagnosed. IBS and Acid Reflux are great examples of that.

I respect your opinion and good luck.
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Laura
Started SCD 3/16/06

Diagnosed by Enterolab 2/06/06
IgA & tTg Positive, Malabsorption negative
HLA-DQB1, 0303 0302
Casein IgA positive
gluten-free 2/8/06
Celiac Blood Panel Normal 2/13/06
Rheumatoid Arthritis 7/05

#42 Nantzie

 
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Posted 26 March 2006 - 01:47 PM

I know this is all a lot to take in. I just want to assure you that we are talking to you the same way we would talk to anyone who has celiac (self-diagnosed or otherwise) and isn't taking care of themselves. Every once in a while we get the same questions you posed, and we are just as adamant about our views. So don't take it as being jumped on because you're a doctor. The question comes up every once in a while.

I really hope you go completely hard-core gluten-free for at least a month, and then evaluate your level of gluten intolerance. I don't believe in levels. But that wasn't always the case.

The reason I came upon celiac was trying to find a solution to my flatulance/diarrhea issues. But those weren't my only health problems.

The most life-impacting thing that went away for me was the constant pain I was in. I'm not talking about stomach pain. I'm talking about pain in my back and body that restricted my movements so badly that at times I could barely walk. I had been diagnosed with low lumbar scoliosis and had assumed that that was the cause of my problems. It was so bad that I was pretty sure I was going to wind up in a wheelchair within a few years.

After I went gluten-free, it all just went away. This was after three days being completely gluten-free. It was like someone flipped a switch and it was just *POOF* all gone.

I never would have even suspected that my pain was in any way related to gluten. But it was.

In a matter of a few days, I went from not even being able to bend over to pick something up off the ground (I used a reacher) to being able to move furniture around. I also now work out every day, including strength training. One of my goals now is to run a 5k before I'm 40. The best part though is just being able to play with my kids. I used to have to sit in a certain chair and just watch them play.

Every once in a while my back goes out due to my scoliosis, but it's rare. It doesn't restrict my activities at all.

I wonder now if I had pursued a diagnosis, and not just assumed it was due to scoliosis, if I would have ended up with a diagnosis of fibromyalgia. I looked into it after the fact and the trigger points of fibromyalgia pretty well lined up with the points where I had my worst pain.

Another bizarre thing that happened to me was that my headaches went away. The bizarre part was that I didn't even know I was getting headaches. A year ago I would have told you that I never got headaches. It wasn't until I went gluten-free that I realized that my head didn't hurt anymore. Now THAT was weird to realize that I had had a headache 24/7 for God knows how many years at that point.

Another thing is that I look different in the face. When I'm on gluten, my face has a kind of doughy texture. When I went gluten-free, I looked like I had lost weight after just a couple days, just by the appearance of my face.

I also have other things that went away. I don't squint anymore (didn't realize I was doing it either). I don't have to wear sunglasses when I'm outside (even on an overcast day). My hair isn't falling out. My scalp isn't itchy. I'm not short-tempered (any more than any other sahm of a 2 and a 3 year old :lol: ).

I also had the brainfog that everyone mentioned, but it didn't impact absorbing knowledge. I'm an information junkie, with a limited medical information background (used to be a medical transcriptionist) and I have never had a problem following, absorbing or retaining that type of information. Brainfog for me was more just having a hard time remembering short-term things. Like what I had for breakfast that morning, or if I ate at all. I also had a hard time keeping a grocery list. From the time I had the thought that I needed something to the 30 seconds it took to walk to the kitchen to put it on the list, I would have forgotten what it was I needed.

My point is, unless you go completely gluten-free, you will never know how gluten effects your body and your brain. You already know that it effects your digestion. But maybe it effects other things that nobody could predict. You owe it to yourself to know. Everyone is different.

So just take a month or two at least to be really strict about it. Then have a slice of bread, and see what happens.

I actually was going to eat gluten right before my last GI appt so I could let my doctor know what my symptoms were as far as eating something on purpose. I bought a pkg of mini donuts just for the occasion. I couldn't even make myself do it. The memory of the taste of them was making my mouth water. But I no more wanted to eat the donuts than I would have wanted to jam a fork through my hand.

Well I hope you decide to go gluten-free, and just see what happens. You're life may be completely changed.

Nancy
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The person who says it cannot be done should not interrupt the person who is doing it.
~Chinese Proverb

#43 frenchiemama

 
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Posted 26 March 2006 - 02:03 PM

The question really is do you eat out? Do you have gluten in your house?
I notice you say intentionally which leads me to beleive you have been caught out?


Oh yes. I have been glutened by mistake. Mostly by restaurant staff who don't take my requests seriously (once I get sick at a place, I don't go back. My "safe" restaurant list is getting very, very short.) and even by my loving and thoughtful husband, who didn't realize that making my gluten-free pizza on the oven rack where he cooks his regular pizzas was a bad idea (until it was too late).

I am now fastidious about washing my hands before I eat, not touching my mouth when im out in case for instance my train ticket goes through the same machine as someone elses who has been eating gluten... because it took me time to learn that 100% gluten free is not eating something out of any tin or packet ..
I buy my meat by the half cow/sheep and butcher it myself because no butcher is gluten-free... a lot of them eat sandwiches and handle other products that contain gluten .. all of this is paranoia .. right?


I had to start bringing my own silverware to work, after I realized that I had been glutened by using the plastic silverware from the bins in the breakroom. D'oh. As far as I'm concerned, there is no such thing as too careful.

ETA
And yes, my coworkers laugh at the fact that I bring my own untensils.
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Carolyn


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

#44 sillyyak

 
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Posted 26 March 2006 - 02:38 PM

VERY STRICT (in reply to your question)

You are a CANCER DOCTOR? Do you mean you are an ONCOLOGIST? (I have never heard an oncologist refer to themselves as a "cancer doctor", but I digress)

You state that a little malabsorption every now and then won't lead to osteoporosis? Well I can tell you from experience that a little (albeit, a lot) of gluten (prior to my diagnosis) led to osteopenia. I can only imagine what a little more every now and then will do. That is, osteoporosis, fractures, etc.

I guess I am more appalled by your lack of seriousness that came across in your posting about Celiac as "cancer doctor"
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Diagnosed 11-11-05 after 3 months of major symptoms, including 2 hospitalizations and 7 ER visits for dehydration and syncope. Otherwise, I had all "normal" blood tests and major scans. During those 3 months, lost 20 pounds, all my muscle tone, and ultimately could not walk for 2 days. Spent 6 days during the second hospitalization hooked up to IV and STILL passing out IN BED due to malnutrition with doctors staring at me AS IF it was all IN MY HEAD

Other related symptoms:
Osteopenia
Hypothyroidism
Gluten Ataxia - three "nodes" recently found in my brain (thought I had MS)
Muscle weakness
Fatigue
Chronic Constipation
45 pound weight gain since going gluten-free!

gluten-free since 11-11-05. Cannot eat bananas, potatoes, or spinach. Recently reintroduced yogurt into my diet and able to tolerate plain yogurt with sugar.

HATE the diet but psychologically tolerating it for my health.

#45 Mahee34

 
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Posted 26 March 2006 - 02:45 PM

for the record, maybe he just said "cancer doctor" because some people wouldn't know what an oncologist is....there are many forms of doctors and I myself do not know them all.

I'm just saying people, let's cut radman some slack, he came on here to get some help which i believe many people have given him, but to question who he says he is and what he says he does....well we could start a jerry springer topic board...i'm sure it'd be good for a laugh or two.


radman-
i'd follow the diet as best as you can, like many have said, there really is no point in getting and feeling sick if you can prevent it~
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