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radman

How Strict Do We Need To Be?

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radman- I'm with ChelsE. I think #5 is my vote. Most people go through a healthy dose of denial (which if you're not having symptoms or very minor symptoms must be NORMAL).

yes I think youve highlighted the reason behind denial - when the symptoms aren't major enough to strike fear then denial becomes a tempting option.

I would describe my condition as major so I had the opposite of denial - I thoroughly embraced my newfound positive antibody status from the futuristic enterolab. I remember being very happy and full of optimism that I had found a possible path to better health.

so number #5 definately didn't apply to me, but there is a number #7 to make us cling on to thoughts of gluten ingestion which i would guess most of us went through in one form or another.

these are my experiences with #7.

prior to august 2005 my stomach motility had declined to the point where I was having to put all my vegetables thru a juice machine and turn meat into soup with a blender, plus ingest digestive enzymes, plus follow the food combining diet, plus drink heaps of kava kava just to survive.

Other background information is that I was spending a lot of time on the yahoo enzymes and autism msg board to learn more about the benefits that enzyme supplements gave me. Also my % gluten intake had gone up as a result of the paralysed stomachs having difficulty with breaking down meat fibres. Gastroparesis sufferers are frequently on a hi-starch diet as carbs requires less stomach motility than protein. So a bagel for lunch was much easier for me to manage than say the meat component of a burger. I had noted that just about all the members of the enzymes and autism board were mothers of children whose autistic behavioural symptoms could be helped by diet, enzymes and other supplements. Interestingly that although the primary problem whch the mothers wished to resolve are the autistic behavioural ones, all varieties of food intolerance and gastro symptoms are also rife over there. A common remedy is the Gluten-free Casein-free diet, but I had noted that a lot of new members were complaining that the behaviour of their children actually got worse when introducing this diet. I also became aquainted with the gluto-gliado morphin theory where the incomplete digested gluten peptides would bind to specific opiate receptors in the brain thus exacerbating behavioural problems. Possibly feeding this Gluten-free Casein-free connection into google is what led me to celiac.com and the resulting gluten free life - i'm not sure but feel lucky at finding this msg board.

So I thought rather than going cold-turkey on gluten I would gradually ramp down my intake, I don't believe that i have autistic tendencies, although it can be all too easy to look at the asperger's list and fit some of my eccentricities in to those symptoms, but was nevertheless concerned about maintaining mental stability so thought the gradual approach would be safer.

over a period of about a couple of weeks I got my gluten intake down to about 1/2 a Krispy Kreme donut a day. I used to eat the different varieties, but the typical donut has about 3g of protein. So half of that multiplied by 80% (the percentage of gluten in wheat protein) would mean i was on < 1.2g of gluten a day I figured. I also wasn't worried about things such as the malt flavouring on cornflakes which wouldn't have been measurable in units of grams. Nothing perceptible happened, some days i thought i might be a bit better but probably my imagination. this was done in anticipation of the enterolab results. When they came back positive out went the 1/2 a donut a day, as did anything containing gluten from my food cupboards, along with wooden spoons and any other cookware that might harbour gluten. they all got chucked into the dustbin. After about a week of this absolute gluten-free status my vagus nerve (stomach motility nerve) suddenly switched on unaided by the kava kava and my stomach would give spontaneous rumbles for the first time in years. Very significant milestone in my gastro improvement.

However after I had gone gluten-free I started to get bad headaches in the evenings. Lethargy, chronic fatigue and bouts of just feeling ill would occur. Just had a look at one of my old posts to the gastroparesis msg board and it seems this went on for at least a month. this was withdrawal from the gluto morphins I figured. If i was an autistic child then probly would have been screaming "whaaa I want my donuts" but as an adult was able to reason with myself.

the number #7 i'm talking about is of course ADDICTION :D

Putting this in context with my failed attempt to make gluten-free donuts (partially cooked mess) I think the addiction can be both physical addiction to the morphins as well as pyschological depenedence to the tasty things we used to enjoy. If I'm honest with myself I'm not sure how much the decision to ramp down my gluten intake instead of going cold turkey was due to my reluctance to let go of the donuts as opposed to taking a controlled approach.

cheers,

Mr J


age 47

enterolab tests

HLA-DQB1*0602, 0604 - sensetivity genes

Antigliadin IgA and Transglutaminase igA positive

Casein IgA positive

primary problem - gastroparesis - paralysis of the stomach

under control with the right drugs

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the number #7 i'm talking about is of course ADDICTION :D

How could we forget the big number 7!!!! You have a real valid point. People don't understand how addictive this substance is. My DH was diagnosed a few weeks ago, I found a box of kellogs corn flakes on the counter and circled the malt in red pen. His response ' I really wanted corn flakes' me, 'well here's wegmans brand their gluten-free and safe', him, whining, ' but they're just not the same'. Of course their not the gluten-free ones don't have that wonderful addictive protein. He has been struggling with withdrawl now for weeks because of these little 'give-ins'. My withdrawl was over in 4 days, difference I didn't cheat.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Guest BERNESES

Mr J - You make an interesting point. There are a lot of people that fall in the addiction camps (you should hear some of the comments I get from friends- they say they could never give up their pasta, bread, etc). I think there's also the other side, where i was. Before I even had an iota of a clue as to what was going on, I had stopped drinking beer because 2 beers resulted in what I thought was a 3 day hangover. I had also stopped eating things like pancakes (used to eat them EVERY time I went out to breakfast), bread and pasta because i used to say it just felt like they sat in my stomach for days. i was only too happy to find out I was right and my body was trying to tell me something.

Radman- you talked a lot about genetic predisposition (that you need it to have Celiac's, ataxia, etc). Here's what I was thinking- it's just my simple version of it. But if you KNEW you had a genetic predisposition to something, you wouldn't tempt fate by doing whatever it was that would set that predispositin in motion, right? Bbut the problem is, we don't know our genetic predispositions until something goes wrong (or it's clearly in our family history- I'm unlucky there as I'm adopted. I've often joked that my biological parents gave me up because they knew I would be genetically "problematic"). So, what I'm trying to say is that given that you may not know if you have a gentic predisposition to ataxia or anything else, you probably would not want to find out the hard way.

That would be my train of thought on being gluten-free if I had very little symptoms. I'd rather be safe than sorry. But that's "easy" for me to say as my symptoms are very loud.

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Hello everyone,

Nantzie: yes I am in Fredericksburg, and the Virginia countryside is beautiful as spring is springing. Unfortunately, we are now essentially exurban DC so the traffic and crowds make is more difficult to notice sometimes.

And Mr. J has some interesting comments, plus his post is even longer than most of mine :)

Never considered myself an addict, though I've run across a number of doctors that are over the years. Hmm, gluten addiction, I don't think so, but pizza/bagel/Panera Bread addiction-Definitely.

So now I continue my quest to be gluten free, but I must admit I ate rice crispies this morning. Just a teensy bit of malt flavoring??? Maybe I should head down to the health food market and pick up some true gluten free cereals,

which brings me to another point:

These gluten free things are way too expensive! Cripes $5 for a lousy tasting loaf of rice bread. $6 for a little bag of gluten free flour for pizza crust.

I guess I'm supposed to be a rich doctor and everything, but give me a break. I am way to cheap for this disease. We need a big discount warehouse, like a Sam's or Costco for celiacs. Otherwise, I'm gonna have to put my wife and daughters on a clothing expense limitation to allow me to eat a pizza once in a while. Any thoughts on cost efficiency would be helpful...

Hope everyone has a great day!

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Hi Radman,

The cost of gluten free food is just another obstacle we have to overcome.

It is our hope that the more celiac disease becomes known, the more people will be diagnosed. Therefore, there will be an increase in demand for gluten-free food, thereby bringing the cost down.

It's just another aspect of the battle to get this disease "out there".........

Karen


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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Well, this is probably an idea that most would reject out-of-hand but I find a diet that doesn't include a lot of starchy, manufactured stuff is relatively inexpensive and very healthy. I eat meat, veggies, fruits, nuts, eggs, that sort of thing.

Yep Nancy--I agree! Except for the eggs, that's how I eat. :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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So now I continue my quest to be gluten free, but I must admit I ate rice crispies this morning. Just a teensy bit of malt flavoring??? Maybe I should head down to the health food market and pick up some true gluten free cereals,

which brings me to another point:

These gluten free things are way too expensive! Cripes $5 for a lousy tasting loaf of rice bread. $6 for a little bag of gluten free flour for pizza crust.

You are new to this. After awhile your tastebuds "forget" what the regular wheat based products are like and so you won't be missing them like you are now. In that way it does becomes easier. I look at the cost of stuff as I'm eating this in lieu of an expensive prescription to keep my health. I mean, if I had to pay $25/month for meds that I had to have, I know I could do it. Plus my local health food store has a 10% off one day a month and that's when I try to get my largest amount of gluten-free shopping done for the month.


gluten-free since Oct 1996

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You guys are so dang sensible.

Isn't anyone else here reckless and irresponsible? (jusk kidding folks :) )

I've been considering why I seem to be the only one (well actually there may have been one or two other posts thinking like me) willing to even consider an occasional teensy weensy lapse now and then.

Possibilities:

1. My symptoms are much less than everyone elses (no apparent brain fog, aches, arthritis, or severe GI reactions)

2. It's too early for me to recognize just how much gluten is affecting me, and I've become accustomed to it. Over time it may then become more clear.

3. I have a weird lack of concern for my own health

4. Denial

5. All of the above

Probably number 5...

In a few places I read about the body's ability to adapt and tolerate (to a certain degree). I believe I experienced this.....I definitely had periods of time where I don't believe gluten was bothering me (much). Other times the reactions were quite strong. For years I was subconsciously limiting gluten (and dairy), so perhaps that had something to do with it. I would have periods of minimal gluten, followed by a period in which I might have had quite a lot, my body adapted, and then a ceiling was reached where my body couldn't handle the amounts and I'd get progressively sicker.

What I've learned being gluten free for 2 months is that now my reaction is a bit more pronounced than before. Getting clear of gluten paves the way for a more identifiable reaction, perhaps. No doubt it can be puzzling.

Overall, you've just got to understand the basic risks and find out where you may stand. A lack of a strong reaction doesn't necessarily mean you are only "mildly" affected, because the studies show there are people with NO symptoms who still have intestinal damage. And some with terrible symptoms with little or no damage. The question is always where you as an individual stand and how much you need to know before you follow the diet or not.

For me, I don't care particuarly to find out via biopsy whether or not I have/had any intestinal damage. I don't want to waste the time & money for that. But once I connected a lifetime of various symptoms, I decided I was sick of them all and wanted to be rid of them....so for me, the diet is worth it at this point. I got enough results via Enterolab to know what my overall chances might be of actually having celiac disease. And if I don't have that, I at least have gluten sensitivity which affects me, and I don't like how it makes me feel. And the additional risks of continuing to eat gluten are also looming in the shadows....perhaps they would eventually affect me, perhaps not. I don't want to play roulette with it all.

Denial? I think a lot of us go there for a time. I didn't stay with that for very long, though. There's enough information available that one can correlate that the "writing is on the wall" so to speak.

It took me a little time, but I've got my head around it all now and I'm OK with the gluten free eating. Doesn't bother me, and I feel great....a huge and obvious difference in how I feel now after such a short time.


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Since the symptoms I would get with a dietary lapse are bothersome but not severe, the main problem with an occasional lapse comes down to whether this would cause serious long term risks.

As I've mentioned before, the risks come down to essentially 2 things, osteoporosis and intestinal lymphoma.

Since following a gluten free (or even mostly gluten free) diet cures my problem with malapsorption (and believe me this is easy to know), then it cures my problem with absorbing Calcium and therefore does as much as can be done to obviate the osteoporosis problem (notwithstanding Calcium and D supplementation which I am doing). So an ocassional lapse with a day of loose bowels will not be a problem in this regard. To develop and maintain osteoporosis, it would require long term persistent malabsorption.

So to put in succinctly, as long as I am not having persistent diarrhea, I am not malabsorbing enough to cause osteo. An occasional lapse is unlikely to have an impact.

Now the issue of lymphoma is another matter. The cause here is persistent inflammation on the small bowel lining (mucosa). It is possible that inflammation persists even if symptoms, such as diarrhea, are not present. However, I have to believe that the inflammation is much less on a mostly gluten free diet with an ocassional lapse vs. a full blown gluten heavy bread and pasta diet like I used to have.

I would say that the issue of lymphoma likely remains a risk, however reduced. On the other hand there are a total of maybe a couple thousand cases per year of intestinal lymphoma in the US (it is a rare malignancy) versus maybe 2 million patients with celiac disease, the majority of which are undiagnosed and untreated and not on any gluten restriction. So I judge this risk as real but minimal.

That's basically it to me. A potential increased but still low risk of intestinal lymphoma. Does this warrant strict lifelong gluten free dieting. Dunno, for now I'm sticking with it. Still not sure after a few months that I won't cheat a little now and then.

Remember, all of those with worse reactions to gluten will not relate to this at all. If there are others with bothersome but not severe reactions, they may relate.

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Radman,

I believe you are #5 with added attractions. Meaning that perhaps you think as a doctor you should know everything. You also secretly in the back of your mind feel you are infalible because you are a doctor. Probably your subconcious is saying; "you can't have this, you are a doctor and what will everyone say?"

I thought in the beginning I could cheat and eat a pizza now and then. Now I find out the longer I am gluten-free the worse I react to extremely small amounts of gluten. For me a few crumbs make me sick and I break out with dh. When you are putting gluten into your body you never realize that they crappy way you feel is because of that. Then when it isn't a constant in your life and a little gets in you now know why you feel like garbage.

When you think maybe it isn't doing damage to your body, the small amount. I start to remember all of those who originally had no symptoms at all and the damage they did to their bodies without knowing they were. In my mind for me alone it is not smart to taunt stomach or colon cancer for a pizza. I can have a gluten-free pizza and enjoy it just as much, just differently and know I will not suffer or do damage.

However, what a person wants to take as a risk is their decision and each person must evaluate on their own is it worth it or not to cut out the gluten.

I never did go through the denial phase of this disease. I think that was because I know a very long time ago I had a wheat allergy and told I could possibly have this, although no one did anything.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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Question for Radman:

Are all intestinal lymphomas linked to gluten intolerance?

Also, I asked you a couple of questions on earlier posts, but I don't think you saw them; at any rate, you never answered them. Could you please take a peek back through this thread? Thanks.

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These gluten free things are way too expensive! Cripes $5 for a lousy tasting loaf of rice bread. $6 for a little bag of gluten free flour for pizza crust.

I guess I'm supposed to be a rich doctor and everything, but give me a break. I am way to cheap for this disease. We need a big discount warehouse, like a Sam's or Costco for celiacs. Otherwise, I'm gonna have to put my wife and daughters on a clothing expense limitation to allow me to eat a pizza once in a while. Any thoughts on cost efficiency would be helpful...

Hope everyone has a great day!

You said it. The cost of the food is outrageous. I must confess I skip meals constantly and I practically live on popcorn and baked potatoes. The only time I eat 3 meals a day is when I am on dayshift, I feel like I need to be alert on the job (ICU and all, yikes). I ration my cornflakes. I tried the organic rice krispies, they were very anemic so I just don't bother. I don't buy gluten-free bread or bread like stuff anymore because it basically tastes like crap and it costs a small fortune. As well, I live in Canada, so fresh produce is NOT cheap here at this time of year. To say I am sick of apples and bananas is a mild understatement. I gotta tell you though, there is no point in doing this half way. You either do it or you don't. Why would I pass up on all the foods I LOVE (my God I'd trade my soul to the devil for a hamburger) just to blow it on a few crumbs??? The crumbs are as bad as the burger, or in your case the pizza, at least the reaction going on inside is probably the same. I'm all for go big or go home, lol.

Now for a joke.............What's the difference between an ICU nurse and a pit bull????

Answer.....Lipstick


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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Skoki: The answer is-

a pit bull lets go when it is clear the person is finished?

sorry that was bad

Fiddle:

is this the question:

Hi, radman,

I was actually wondering (don't shoot, guys!) if small amounts of the "right " kind of gluten (fermented, like sourdough) might not only avoid triggering the celiac thing, but also might help avoid the post-celiac-diet high incidence of developing other food sensitivities....

(edit) I mean from childhood in someone who shows no signs of celiac, not in people with the fullblown Hyper-Celiac. And I'm probably wishfully thinking that it would work for me, too, as I never had symptoms until recently....

If so:

I don't think there is a "right" kind of gluten. The sourdough process doesn't change the structure of the gluten proteins, and would be expected to trigger celiac ever bit as much as any other bread.

I wish it were true, I have loved sourdough ever since I lived in San Francisco many years ago. That hot Boudin bread down at fishermans wharf with a crab cocktail or some chowder....mmmmmmmmmmm

Let me know if there is anything else I missed.

Rusla-

#5 with added attractions? that sounds good to me, nothing like putting a positive spin on things :lol:

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Skoki: The answer is-

a pit bull lets go when it is clear the person is finished?

sorry that was bad

Fiddle:

is this the question:

Hi, radman,

I was actually wondering (don't shoot, guys!) if small amounts of the "right " kind of gluten (fermented, like sourdough) might not only avoid triggering the celiac thing, but also might help avoid the post-celiac-diet high incidence of developing other food sensitivities....

(edit) I mean from childhood in someone who shows no signs of celiac, not in people with the fullblown Hyper-Celiac. And I'm probably wishfully thinking that it would work for me, too, as I never had symptoms until recently....

If so:

I don't think there is a "right" kind of gluten. The sourdough process doesn't change the structure of the gluten proteins, and would be expected to trigger celiac ever bit as much as any other bread.

I wish it were true, I have loved sourdough ever since I lived in San Francisco many years ago. That hot Boudin bread down at fishermans wharf with a crab cocktail or some chowder....mmmmmmmmmmm

Let me know if there is anything else I missed.

Rusla-

#5 with added attractions? that sounds good to me, nothing like putting a positive spin on things :lol:

Also wondered about possible links between celiac disease and CF, and celiac disease and intestinal lymphonas (are all intestinal lymphomas linked to celiac disease?)

There was a thread a while back about sourdough converting the gluten, but I didn't follow it all the way through. From what I read, several people said that they didn't react to sourdough as they did with other g;uten. I'm interested becasue sourdough is really the only bread I've ever liked (I'm not much of a bread/pasta person, which is probably why my symptoms are so few and so late in life).

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You said it. The cost of the food is outrageous. I must confess I skip meals constantly and I practically live on popcorn and baked potatoes. The only time I eat 3 meals a day is when I am on dayshift, I feel like I need to be alert on the job (ICU and all, yikes). I ration my cornflakes. I tried the organic rice krispies, they were very anemic so I just don't bother. I don't buy gluten-free bread or bread like stuff anymore because it basically tastes like crap and it costs a small fortune. As well, I live in Canada, so fresh produce is NOT cheap here at this time of year. To say I am sick of apples and bananas is a mild understatement. I gotta tell you though, there is no point in doing this half way. You either do it or you don't. Why would I pass up on all the foods I LOVE (my God I'd trade my soul to the devil for a hamburger) just to blow it on a few crumbs??? The crumbs are as bad as the burger, or in your case the pizza, at least the reaction going on inside is probably the same. I'm all for go big or go home, lol.

Now for a joke.............What's the difference between an ICU nurse and a pit bull????

Answer.....Lipstick

Fresh produce is not that fresh either. It is a produce kept in a warehouse for who knows how long and barely any flavour. You know how flavourless it is when you go some where and eat real fresh fruit and vegetables everyday and it tastes like fruit and vegetables. I walk through the whole store and the thing that interests me the most are ice cubes and chicke peas....now that is bad.

Skoki: The answer is-

a pit bull lets go when it is clear the person is finished?

sorry that was bad

Fiddle:

is this the question:

Hi, radman,

I was actually wondering (don't shoot, guys!) if small amounts of the "right " kind of gluten (fermented, like sourdough) might not only avoid triggering the celiac thing, but also might help avoid the post-celiac-diet high incidence of developing other food sensitivities....

(edit) I mean from childhood in someone who shows no signs of celiac, not in people with the fullblown Hyper-Celiac. And I'm probably wishfully thinking that it would work for me, too, as I never had symptoms until recently....

If so:

I don't think there is a "right" kind of gluten. The sourdough process doesn't change the structure of the gluten proteins, and would be expected to trigger celiac ever bit as much as any other bread.

I wish it were true, I have loved sourdough ever since I lived in San Francisco many years ago. That hot Boudin bread down at fishermans wharf with a crab cocktail or some chowder....mmmmmmmmmmm

Let me know if there is anything else I missed.

Rusla-

#5 with added attractions? that sounds good to me, nothing like putting a positive spin on things :lol:

I like your pitbull joke.

Now when others ask you what you are, you can tell them you are a 5 with added attractions. Then just walk away with your head held high and leave them wondering about your added attractions. :P


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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These gluten free things are way too expensive! Cripes $5 for a lousy tasting loaf of rice bread. $6 for a little bag of gluten free flour for pizza crust.

I guess I'm supposed to be a rich doctor and everything, but give me a break. I am way to cheap for this disease. We need a big discount warehouse, like a Sam's or Costco for celiacs. Otherwise, I'm gonna have to put my wife and daughters on a clothing expense limitation to allow me to eat a pizza once in a while. Any thoughts on cost efficiency would be helpful...

Hope everyone has a great day!

Don't get the expensive, specialty stuff. Stick with the normal, naturally gluten-free stuff that everyone naturally buys, like rice, beans, meat, dairy (if you can have it), and produce. You can make all sorts of things from normal every day items, and you don't *need* bread. ;-) (And yes, you get used to not having it.)


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Don't get the expensive, specialty stuff. Stick with the normal, naturally gluten-free stuff that everyone naturally buys, like rice, beans, meat, dairy (if you can have it), and produce. You can make all sorts of things from normal every day items, and you don't *need* bread. ;-) (And yes, you get used to not having it.)

Yeah, even before going gluten-free...I didn't eat much bread, meat on salads, not sandwiches, and I always eat my hamburgers w/o a bun--like a steak with A1 sauce, knife and fork instead ;)


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Now the issue of lymphoma is another matter. The cause here is persistent inflammation on the small bowel lining (mucosa). It is possible that inflammation persists even if symptoms, such as diarrhea, are not present. However, I have to believe that the inflammation is much less on a mostly gluten free diet with an ocassional lapse vs. a full blown gluten heavy bread and pasta diet like I used to have.

The inflammation reaches far more than just the GI systems. The gluten also effects and inflames other organs and tissues as well. This is most obvious in those of us with dermatitis herpeformis or seboriac psoriasis (sorry med terminology classes too far back for good spelling) and also with folks who have depression or 'manic' symptoms. It has been shown to effect liver function in some, it has been shown to cause infertility even in those who are not malabsortive. Relatively little is really known about why gluten causes a lot of problems but it does. The safest course is to avoid it completely, you don't want to develop something like arthritis or gallbladder problems and making the mistake of thinking it is a normal process. Autoimmune disorders can be very sneaky and we seem to develop a lot of them. Cancer and malabsorption are not the only risks.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Cancer and malabsorption are not the only risks.

True that...we don't even really know all the possible effects yet... Dangerous Grains is a good book for delving into this matter....


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Radman, wow, long string you started! I too am newly-diagnosed. I got a positive duodenal biopsy result last week.

As a fellow "newby", I'd like to compare notes. I'm a 60 year-old male. I retired last year after 38 years as an electrical engineer. Looking back, I think I've had celiac disease all my life, as I was behind my peers in weight during my growth years and I've been slim all my life, and able to eat massive amounts of food without gaining weight. I was diagnosed with hypothyroidism about 18 years ago. I developed idiopathic fatigue and mild anemia about 10 years ago, followed by an active case of mono. I received an endoscopy and duodenal biopsy when the anemia started but results were negative then. And that was before the serum antibody tests were in use. Other than that, I've considered myself healthy all my life and have been very active and athletic, playing league volleyball until recently, and I still love to water ski. I've always been able to eat anything, including lots of breads and cereal. But around the first of this year, I started loosing weight followed soon by GI symptoms of excessive gas and foul-smelling stools. My PCP sent me for the endoscopy, which confirmed celiac disease. The GFD was miraculous, as all symptoms were gone within 24 hours. Of course the weight loss will take a little longer to resolve.

My approach to this disease is going to be much like yours, I think. As far as I can find there has been no medical research to examine the curve between gluten intake and enteropathy, neuropathy or other complications. Some of the previous responses on this thread indicate a belief that any gluten intake greater than zero results in maximum damage, but no scientific evidence was cited. It seems more intuitive that there is more of a proportional analog curve of damage versus intake. That presumption too is based on my own experience, as for much of my life, I have consumed much gluten with little antibody response or apparent damage, which seems consistent with your experience. But we may have reached a "failover" point, wherein our bodies could no longer handle such massive gluten loads. Conclusive large-scale studies and clinical research on the topic would be nice. Please let me know if you find any.

It also seems that there has been no definitive research to conclude that neuropathy or other non-endo complications are directly caused by an antibody response vs secondary to malnutrion. M Hadjivassiliou's report at http://jnnp.bmjjournals.com/cgi/content/full/72/5/560 seemed inconclusive, and I could find no follow-up research.

We each have to develop our own philosophy for how to live. My philosophy, and it's not necessarily for everyone, but it is mine, is that quality of life is more important than longevity. So my approach to celiac disease is going to be to experiment to find the most palatable diet which my body can tolerate. So I will:

1. Not knowingly eat anything containing gluten

2. Read labels at the supermarket and only order from "gluten-free" menus when eating out

3. Not get wrapped around the axle trying to avoid hidden ingredients or cross-contamination

4. Listen to my body and modify my diet accordingly

5. Maximize the enjoyment of life.

By the way, I think the medical schools are getting better at teaching an awareness of celiac disease. Our oldest daughter, who is just completing her first year of oncology fellowship at MD Anderson in Houston, gave me a preliminary diagnosis of celiac disease over the phone from just hearing my symptoms before the endoscopy was done, and GI is not even her speciality.

Do you have children? Both our daughters are going to get the serum tests, as they will be trying to start families soon.

Finally, I too am strugling with the new diet. Breakfast has always been an important meal for me, and cereal is a daily staple. The available gluten-free cereals are pretty bad, some tasting no better than eating the box they came in, so I made my own granola recipe, which is excellent, if I do say so myself. Please try it and see what you think.

Alan's homemade gluten-free granola

Preheat oven to 300 degrees

Ingredients:

4 c. uncooked rolled oats (I used Quaker brand)

3/4 c. grated coconut

3/4 c. sunflower seeds

3/4 c. chopped almonds

1/2 c. chopped pecans

1/2 c. honey

1/2 c. canola oil (or the oil of your choice)

2 T. water

1/3 c. Bob's Red Mill pancake mix

3/4 c. raisins

Directions:

In a large bowl, mix together all dry ingredients except the raisins. In a smaller bowl, combine honey, oil and water and pour it over the dry ingredients. Stir well until all dry ingredients are moistened. Spread mixture into a large rimmed baking sheet (approx. 12 x 18). Bake 35 minutes, stirring granola every 10 min. while baking. Remove from oven and cool. Add raisins and stir once more. Store granola in a sealed container and refrigerate, or freeze for longer storage.

Serving size is 1/2 cup, as this stuff is rich. Top with milk for serving or eat it dry as a snack. (I may add 1/2 c. brown sugar to the next batch.)

(I have to give due credit to Michelle Jones of cookinglow-fat.com for my starting point.)

Now as to the oats, there are two possible issues. In case you've read that oats may not be safe, see this report on a 5-yr Finish study:

http://gut.bmjjournals.com/cgi/content/full/50/3/332

which concluded: "This study provides the first evidence of the long term safety of oats as part of a coeliac diet in adult patients with coeliac disease. It also appears that the majority of coeliac patients prefer oats in their diet." The study methods seem to be scientifically sound.

And yes, rolled oats may be cross-contaminated due to crop rotation or sharing of processing facilities. The verdict is still out on the Quaker oats I used, but so far, so good. If I get an adverse reaction, I'll start ordering the outrageously expensive ones from glutenfreeoats.com. But eating oats falls under my rules no. 1 & 3.

Best of luck to you as you pursue this new chapter of your life.

Alan

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Welcome Alan,

I would like to welcome you to the forum and it's nice to see you have already formed an opinion.

I see that you are newly diagnosed. So, you are on the diet for how long, one week? Please do not criticize people who have been to hell and back with this disease who are only trying to share their knowledge in the hope of somebody else does not have to go through what they did. I didn't find any post on this thread to be condescending, and certainly none that has been rude.

Many, many of us have reacted to the gluten free diet exactly the same way. At the beginning, while there are still traces around and cross-contamination issues, etc., there is no real huge reaction. Once the poison has been out of your system totally for awhile, any exposure now sets us into a tailspin. You have been on the diet for one week. I would suggest to you that the jury is still out in your situation as you may react exactly the same way.

Think of a roomful of smoke. If you are in that room on a regular basis for an extended period of time, you get used to breathing it in. If you are used to clean, crisp, fresh air and all of a sudden walk into that room, you feel like you are choking. Apply that concept to gluten.

You obviously have this disease well under control and for that, I give you kudos. But please do not come on this board and criticize how we share our knowledge. If we at all seem over-zealous, please try to understand that some people have been on death's door with this disease and they feel rather passionate about how gluten free they need to be to stay better now that they have regained their health.

Kind regards,

Karen


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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I would like to second everything that Karen said. If you take some time and really read through this and other threads, you will find that the people here are among the kindest, most knowledgeable people on the planet on the subject of Celiac Disease. We speak from experience. Many of us have been sick for years and years. Some for not as long. We try to be as supportive as possible without judgment. Many Celiacs go through a "honeymoon" phase right after going on the gluten-free diet--the symptoms that have plagued them for so long seem to be gone. Unfortunately, too many times, they find that they become more sensitive to increasingly smaller amounts of gluten. Many of us have had the disease undiagnosed for so long that other food intolerances, and worse, other debilitating disorders are also present. I would like to welcome you to our group--and kindly suggest that you read a bit more here and get to know us!


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Guest nini

thank you for your post Karen. I personally HAVE been to hell and back with this disease and I will not apologize for trying to help prevent someone else from having to experience even one percent of what I went through.

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Welcome Alan,

I would like to welcome you to the forum and it's nice to see you have already formed an opinion.

I see that you are newly diagnosed. So, you are on the diet for how long, one week? Please do not criticize people who have been to hell and back with this disease who are only trying to share their knowledge in the hope of somebody else does not have to go through what they did. I didn't find any post on this thread to be condescending, and certainly none that has been rude.

Many, many of us have reacted to the gluten free diet exactly the same way. At the beginning, while there are still traces around and cross-contamination issues, etc., there is no real huge reaction. Once the poison has been out of your system totally for awhile, any exposure now sets us into a tailspin. You have been on the diet for one week. I would suggest to you that the jury is still out in your situation as you may react exactly the same way.

Think of a roomful of smoke. If you are in that room on a regular basis for an extended period of time, you get used to breathing it in. If you are used to clean, crisp, fresh air and all of a sudden walk into that room, you feel like you are choking. Apply that concept to gluten.

You obviously have this disease well under control and for that, I give you kudos. But please do not come on this board and criticize how we share our knowledge. If we at all seem over-zealous, please try to understand that some people have been on death's door with this disease and they feel rather passionate about how gluten free they need to be to stay better now that they have regained their health.

Kind regards,

Karen

Karen, I agree with you completely!

Alan....if you had done a very thorough reading of this forum you would see that many many people were desperately ill for many many years (some unable to even work), with doctors barking up all the wrong trees, doing test after expensive test, prescribing entirely inappropriate drugs, and telling their patients it was "all in their heads." My own mother spent a good 7 or 8 years like this and nearly died from malnutrition because her villi were destroyed....she lost weight down to 80 lbs. and was so sick she couldn't eat or even walk. All the while, doctors were dismissing her concerns with statements such as "Well now, I' guess we'll have to call this Dorothy's disease, won't we." Meanwhile, she got thinner and thinner and threw up everything she ate. Finally one day she met a new doctor who asked "Have you ever been in the tropics?" (thinking of topical sprue). And finally: "Have you ever been tested for celiac disease?" This man saved her life. He told her that had she not gone on a gluten free diet, she would have soon died.

I myself spent a good 25 years trying to figure out the source of my own various medical problems....again, being led down all the wrong roads by doctors, who eventually just abandoned trying to figure it out. I wasn't the classic celiac case so no one made the connection. It was like, "Go away now, it's in your head." I always got the shoulder shrug at the end. I gave up too.....until 3 months ago at age 56 when I started researching like crazy and ordered my own testing via Enterolab and learned exactly what was causing all my issues...thanks only to one ahead-of-his-time doctor....Dr. Fine of Enterolab. I'm sure there are doctors who do know about celiac disease....hopefully more and more are learning about it each day....but the fact is, those of us around here have met legions of doctors who are clueless about it. So there you have it.

Cross contamination: not a problem for all of us obviously, but some around here are highly sensitive and no, it's not their imaginations. You would feel differently if you got violently ill from any unknown and mysterious exposure.

You were fortunate enough to just waltz in and get a very speedy, efficient diagnosis once your medical issues got your attention. Great good fortune, you have been really lucky in that regard. Kudos to your doctor!


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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