So Jerry Is Very Frustrated....

[JerryK]

Name me one situation where diarrhea occurs in the absence of something bad.

Your body is desperate to get rid of something. Think about it.

Too many prunes

Seriously, I do understand...I just don't like it. It's ok not to be happy about it right?

I want to be all tough and manly and Gluten Intolerance doesn't do it for me.

[Lisa]

Nice picture Jerry. Glad to see you.

[CarlaB]

I want to be all tough and manly and Gluten Intolerance doesn't do it for me.

Which is more tough and manly, not eating gluten and being strong and healthy ... OR ... eating gluten and spending the day on the toilet?

[Jestgar]

I want to be all tough and manly and Gluten Intolerance doesn't do it for me.

You can always turn into one of those scary ultra-healthy militant people...

(And what's so manly about eating girl scout cookies!! )

[Mtndog]

Too many prunes

Seriously, I do understand...I just don't like it. It's ok not to be happy about it right?

I want to be all tough and manly and Gluten Intolerance doesn't do it for me.

YES!It is Ok not to be happy about it (just don't act on the feelings but you can complain)!

[sherylj]

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link (go to the main message board and you'll see a place where they post recipes)

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

2 magazines to subscribe to...

Open Original Shared Link

Open Original Shared Link

You want to read more about gluten intolerance, go to www.thefooddoc.com--Dr. Lewey has done lots of research supporting the fact that there are way many more gluten intolerant people than people who actually have celiac disease. As far as I'm concerned, there is a fine line between gluten intolerance and celiac, and it really doesn't matter which I've been diagnosed with.

I don't mean to sound harsh or soapbox-y, which I guess I do, but my point is that this is something we can live with. Last week I found out that I have both gluten and casein intolerances, and since then I keep telling myself that those items are basically like poison to my body. I had a party for my 13 yo daughter over the weekend--fondue (cheese and bread), and chocolate fondue (with cream) with cake and cream puffs...all stuff I couldn't eat. I made myself things that I could eat--marshmallows and chocolate chips and peanut butter--takes the craving right away for the other stuff. This is what we need to do for ourselves--for our bodies, our minds, our sanity.

Have to run--but seriously, email me and I'll get you away from those meat and potatoes!

CL

[miles2go]

Oh, deep divisions, here.

Real men don't do HMO's; they bake their own pizzas and brew their own beer. Of course, that's the right coast talking and I'm originally from Texas/NOLA, so what do I know?

I kid, I kid...whatever works best for you and your loved ones. It's not like any(regular)one is actually noticing that your going gluten-free unless they're forcing food on you, which is bad form anyway.

Margaret

[gfp]

I know two things really. Gluten makes me feel bad and gives me the runs when I eat it. This isn't proof that it's causing damage. This is the crux of my psychological turmoil. No proof. Without a Celiac diagnosis, I can never be 100% sure it really is the gluten. I mean sure...you eat a few cookies and get the runs...what else could it be right? I can be 99.9999% sure...but there will always be that small speck of doubt. Without 100% certainty, there will always be that desire to

[NoGluGirl]

Dear Sherlj,

Thanks for the links! I did not know about these places at all! I put them in my favorites. We can explore! This will be interesting.

Dear JerryK,

Dude, I have some really bad obvious news for you: doctors are completely retarded (in the stupid, non-handicapped sense). I had an entire team of docs working on me up at IU Med that said my GI tract was fine. Obviously that was wrong. My doctor says I am Celiac. She has had a number of patients like me who had negative blood work and biopsies that are. I think I probably had damage those morons missed. They probably had no idea what they were looking for.

Second, if you tested positive for the antibodies, that should count as a Celiac diagnosis, atrophy or not. There is no way these doctors know anything about Celiac. They couldn't. Not with the way they have responded. And, I have more good news for you...

We can eat...Hormel Pepperoni

Hormel Spam

Hormel Vienna Sausages

Hormel Turkey Spam (Smoked or Oven Roasted)

PAM (all varieties except PAM for Baking because it contains flour)

Jimmy Dean Fresh Taste Fast Sausage (links, rolls, or patties)

Here are a couple of things that will take you on a trip! Get Ready for Tastebud Adventures with NoGluGirl!

Cajun Breakfast Scramble

2 whole eggs or 4 eggwhites

1 small potato, peeled and chopped very fine

1/4 cup chopped onion

1/8 to 1/4 teaspoon ground Durkee Cayenne Pepper

PAM nonstick cooking spray or 1/2 teaspoon Cold Pressed Extra Virgin Olive Oil (Spread around with a paper towel in the bottom of the pan so you have just enough oil to avoid sticking and add flavor but not too much fat)

Kraft Shredded Sharp Cheddar Cheese (Fat-free if preferred)

1. In pan, after lightly oiling, take chopped potato and spread evenly in bottom of skillet. Cook, stirring occaisionally, until tender. (Medium high heat) This usually takes about 10 minutes.

2. Next, add onion and eggs or eggwhites, and cayenne pepper. Mix quickly completely until all are combined well.

3. Cook as you would regular scrambled eggs. When finished, move to a plate.

4. Top with cheese and let set a minute until melted nice. Enjoy!

This really fills you up! Believe me, the first couple of months on this diet, I was hungry all the time!

Spaghetti

1lb. Extra lean or regular ground beef

1 jar Classico Sweet Tomato Basil Sauce

1 pkg. Chinese rice threads (like spaghetti)

1. Brown ground beef, stirring every five minutes. Continue to do this for 30 minutes.

2. Add Classico sauce. Simmer 10 minutes.

3. Have boiling water ready for rice noodles, put rice noodles in, cooking only 3 minutes or so. Remove from heat. Noodles should be al dente. Check with fork.

4. Plate it up and eat!

Stuffed Tomato

1 large tomato, with an X cut in it.

1 can of tuna (Great Value or Starkist in water)

3 - 4 Tablespoons Kraft Free Mayonnaise or Miracle Whip Free or Regular (I go low on the fat because I have to due to gallbladder removal)

1 Tablespoon chopped onion

1Tablespoon chopped celery

2 Tablespoons chopped apple

1 Tablespoon Heinz Sweet Pickle Relish and 1 teaspoon pickle juice

Gluten Free Crackers of your choice

Also, if you want some good cake mix, go to www.choclat.com where they have gluten free, casein free chocolates and other candies, and three great cake mixes. They turned out perfect! I have never had a cake mix (gluten free or otherwise) be done cooking when it was supposed to be.

Sincerely,

NoGluGirl

[NoGluGirl]

And as Laura pointed out.....

Jerry IS speaking of himself in the third person!! cause for alarm??? ha ha...reminds me of the Seinfeld episode....and the recent Grey's Anatomy...

Thanks for the laugh!

Dear DingoGirl,

I saw those episodes of Grey's Anatomy and Seinfeld! That is so funny! You gotta love it!

Perhaps we should be concerned about Jerry. LOL!

Sincerely,

NoGluGirl

[CarlaB]

Dear DingoGirl,

I saw those episodes of Grey's Anatomy and Seinfeld! That is so funny! You gotta love it!

Perhaps we should be concerned about Jerry. LOL!

Sincerely,

NoGluGirl

Well, I know Carla is concerned about Jerry, what about you Susan?

[johnsoniu]

You can always turn into one of those scary ultra-healthy militant people...

Hey, I'm not a vegetarian because I love animals, I'm a vegetarian because I hate plants

Actually, not a vegetarian, but I love that line! Think I'll add it to my sig.

[CarlaB]

Hey, I'm not a vegetarian because I love animals, I'm a vegetarian because I hate plants

Actually, not a vegetarian, but I love that line! Think I'll add it to my sig.

I saw someone wearing a t-shirt with that on it at Bloomingfoods in Bloomington, IN ... wasn't you, was it? I stopped the guy and asked him to stand still so I could finish reading the t-shirt. So funny!

[johnsoniu]

I saw someone wearing a t-shirt with that on it at Bloomingfoods in Bloomington, IN ... wasn't you, was it? I stopped the guy and asked him to stand still so I could finish reading the t-shirt. So funny!

Nope, wasn't me. Haven't been back to Bloomington since they gave me a diploma and asked that I not return. Some crap about "pulling down their academic standards"

[gfp]

Nope, wasn't me. Haven't been back to Bloomington since they gave me a diploma and asked that I not return. Some crap about "pulling down their academic standards"

You owe me a glass of wine... just spat it all over the table and monitor....

[DingoGirl]

Well, I know Carla is concerned about Jerry, what about you Susan?

oh yes, Susan IS concerned about Jerry! Susan, however, still thinks that Jerry is very manly (see his photo) despite Jerry's line of thinking that gluten intolerance is not manly.....

Nope, wasn't me. Haven't been back to Bloomington since they gave me a diploma and asked that I not return. Some crap about "pulling down their academic standards"

Susan has also let out a snorting guffaw (but Susan is not drinkign wine tonight so no spitting)

[CarlaB]

Nope, wasn't me. Haven't been back to Bloomington since they gave me a diploma and asked that I not return. Some crap about "pulling down their academic standards"

Pulling down IU's academic standards? Wow, that's quite an accomplishment since they're known for their partying!!

There's a member here from B'ton and she's trained Raggs at Nicks to cook a gluten-free meal. I get it every time I visit my daughter over there. Just order "The Kate" after you ask if Raggs is there. The waitress will give you a funny look, but then when she brings out your food, she'll comment on how GOOD it looks.

Bloomington's come a long way in the past few years, you should go visit, you will be quite surprised. There is also a Cheeseburger in Paradise where the old Chi Chi's used to be.

[JerryK]

Dear JerryK,

Dude, I have some really bad obvious news for you: doctors are completely retarded (in the stupid, non-handicapped sense).

Second, if you tested positive for the antibodies, that should count as a Celiac diagnosis, atrophy or not.

Believe me I've dealt with my share of doctors wearing blinders.

So I did test positive for the antibodies..IF..you count an Enterolab diagnosis as positive proof of

Gluten Intolerance... That seems to be open for debate and quite honestly I don't know how I feel about Enterolab. The guy is either brilliant and on the cutting edge, or he is convinced that everyone has Gluten Intolerance...or both. The real test is how you react to the gluten-free diet...

So who do you believe..

-Doctors wearing blinders who have no real understanding of Gluten Intolerance or Celiac.

-Maverick docters like Dr. Fine who think everyone has Gluten Intolerance and that it's a vast undiagnosed problem.

-Your own body, which if you listen closely to, will tell you what you shouldn't be eating....

Questions I don't have the answers to, except I think listening to your own body is the best option.

[Jestgar]

Yep, Jerry, listen to your body.

On the veggie comments:

I saw a t-shirt that had PETA in big letters.

Underneath, in smaller letters was: People for the Eating of Tasty Animals.

I snickered all the way through Costco.

[JerryK]

Yep, Jerry, listen to your body.

On the veggie comments:

I saw a t-shirt that had PETA in big letters.

Underneath, in smaller letters was: People for the Eating of Tasty Animals.

I snickered all the way through Costco.

I must be a member. Without Cow, Chicken and Pig...I would starve. No offense to those who are veggies:)

[gfp]

Believe me I've dealt with my share of doctors wearing blinders.

So I did test positive for the antibodies..IF..you count an Enterolab diagnosis as positive proof of

Gluten Intolerance... That seems to be open for debate and quite honestly I don't know how I feel about Enterolab. The guy is either brilliant and on the cutting edge, or he is convinced that everyone has Gluten Intolerance...or both. The real test is how you react to the gluten-free diet...

So who do you believe..

-Doctors wearing blinders who have no real understanding of Gluten Intolerance or Celiac.

-Maverick docters like Dr. Fine who think everyone has Gluten Intolerance and that it's a vast undiagnosed problem.

-Your own body, which if you listen closely to, will tell you what you shouldn't be eating....

Questions I don't have the answers to, except I think listening to your own body is the best option.

Firstly, yes listen to your body

Did you try the two papers I linked to?

The reason I asked is because I share a certain scepticism for Dr. Fine... I don't not beleive it...I just want to see some published clinical trials... However the ones I posted ARE clinical trials and real medical papers with everything done correctly...

I look at it like we are at a juncture as we were in 1492.... Is the world really flat? Columbus had some serious doubters but do you think even his supporters were 100% convinced at the time? He had all the scientific proof and a bunch of tradition that said the world was flat and he'd fall off the edge, and if that wasn't enought he was sentenced to death in his absense by the Pope for even thinking the worlkd might be round.

Part of his sucess might be attributable to this... do you think he never doubted? But given he had a fleet following him the with sole aim of taking him back to be burned alive proably provided a bit of extra motivation

Even after Columbus found America he still faced many people not believing... even after Magellan circumnavigated, people didn't all believe... some people don't believe even today with photo's from space...

In this context MD's today mainly belive what they learned in med school. They chose to ignore the evidence to the contrary but just as the world was ALWAYS round so I believe celiac disease has always been an expression of gluten intolerance.

To take another example ... the role of h. pylori in ulcers was disputed by most MD's for years... regardless of the evidence Marshal presented many MD's refused to believe it ... indeed many wrote to medical journals condeming him as a quack...

The point is they just refused to look at the evidence ... or even conduct tests, they just dismissed it because "everyone knew" ulcers were caused by stress and treated with ranitidine and couldn't be cured.

Hadjivassiliou is in the same position now, he's not even claiming to have discovered this... he's pointing out its been known since

In 1961 Taylor published an immunological study of celiac disease.6 In his paper he commented that " . . .an obstacle to the acceptance of the immunological theory of causation has been the lack of satisfactory demonstration of antibodies to the protein concerned". He went on to demonstrate the presence of circulating antibodies against gliadin (antigliadin antibodies), the protein responsible for celiac disease. This provided further evidence that celiac disease was immunologically mediated and that the immune response is not confined to the mucosa of the small bowel. Antigliadin antibodies became a useful screening tool for the diagnosis of celiac disease.

However he also points ot WHY.... because at the time serology was difficult and expensive... it was much easier to stick a tube down someones throat...(well easy for the MD...) and so this was "sold" as the golden test...

"What do I do with a patient with positive anti-gliadin antibody test but normal duodenal biopsy"

Only one third of the patients with neurological disorders associated with gluten sensitivity have villous atrophy on duodenal biopsy. Even some with biochemical markers of malabsorption such as low serum vitamin B12, low red cell folate, or vitamin D concentrations had normal conventional duodenal histology.17 These cases may illustrate the patchy nature of bowel involvement in coeliac disease and the inaccurate interpretation of duodenal biopsies by inexperienced histopathologists. Preliminary data based on staining of the subpopulation of T cells in the small bowel epithelium suggests that these patients have potential celiac disease.24 There are, however, patients where the immunological disorder is primarily directed at the nervous system with little or no damage to the gut. Our practice is to offer a gluten-free diet to these patients unless the HLA genotype is not consistent with susceptibility to gluten intolerance (that is, other than HLA DQ2, DQ8, or DQ1). All patients are followed up and any clinical response is documented.

Anyway, this is n't just a renegade MD.... there are hundreds of researchers who agree... HOWEVER very few of them are enterologists! That might seem weird until you consider the enterologists are specialists in one specific area and also not really interested in finding "their disease" might actually not be a enterology issue after all. Many of Columbus' enemies were not against him on pure religious grounds but the Vatican had a monopoly on several of the most important commodities if the time... Alum for fixing dyes and the like... and due to the rise of Islam the traditional sources since Roman times were off limits... circumnavigation promised a way around this (pun intended) ... and a lot of rich middle men stood to loose fortunes..

Lots of enterologists make good money doing invasive tests... its not s much they are bad .. they just have to chose which side and the one which makes them money is easiest...I'll just point out these are the same GI specialists who were so against Marshals CURE for h. pylori induced ulcers!

They were wrong then.... what's the chance they are wrong now?

To me its not even chance, the evidence is available, in abundance they are just refusing to read it and test it... just good old stubborness and self interest!

The best thing YOU can do is read that evidence yourself!

[JerryK]

Interesting stuff. This guy states that Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity

Does this mean, since I'm HLA-DQ 3,1, that I have a greater susceptibility to the neurological presentation of celiac disease?

Also, this guy makes it sound like 70% of celiac disease patients have HLA DQ2, 9% have HLA DQ8 and "the remaining have DQ1". Does this mean that Enterolabs statement that I do not have one of the Genetic markers for celiac disease may not be entirely correct? According to this guys research, he makes it sound like about 20% of celiac disease patients have HLA DQ1...I'm not sure if that's what he's saying...

Clear as mud...right??j

[Jestgar]

Also, this guy makes it sound like 70% of celiac disease patients have HLA DQ2, 9% have HLA DQ8 and "the remaining have DQ1". Does this mean that Enterolabs statement that I do not have one of the Genetic markers for celiac disease may not be entirely correct? According to this guys research, he makes it sound like about 20% of celiac disease patients have HLA DQ1...I'm not sure if that's what he's saying...

I would say:

1. The current definition of Celiac (as only villus destruction or only dh) is incomplete.

2. The identified "Celiac" HLA gene(s) are only the villi destroying genes, the others haven't been identified (because a more complete view of the disease hasn't been recognized).

3. If gluten makes you feel bad, then it's doing something bad to your body.

You can slap yourself over and over and never get a visible bruise, but after a while it's really gonna hurt...

[gfp]

Interesting stuff. This guy states that Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity

Does this mean, since I'm HLA-DQ 3,1, that I have a greater susceptibility to the neurological presentation of celiac disease?

IMHO... it means you are less susceptible to the gastro-intestinal symptoms ... which isn't quite the same thing... I play with statistics for a living so... I have a different way of looking at this data

Also, this guy makes it sound like 70% of celiac disease patients have HLA DQ2, 9% have HLA DQ8 and "the remaining have DQ1". Does this mean that Enterolabs statement that I do not have one of the Genetic markers for celiac disease may not be entirely correct? According to this guys research, he makes it sound like about 20% of celiac disease patients have HLA DQ1...I'm not sure if that's what he's saying...

Clear as mud...right??j

As I understand it... Hasjzxxjddx (or however its spelled ) is looking at a different criteria... he is linking serology for specific gluten anti-bodies with his specialist field which is neurology... he isn't really interested in the GI stuff, its not his field... HOWEVER he's doing it professionally... the way he presents the data is so that others who are specialists in GI can use the same data...

He is specifically interested in patients with neurological manifestations, with or without accompanying villous atrophy..

However IMHO (from a scientific standpoint) he is doing this correctly... he starts off with the specific anti bodies and then looks for symptoms associated, GI's in general are not doing the same .. they are looking for biopsy proven celiacs ... The data from hasj... is based on a specific test... or set of tests which are the root of the problem... wheras the data for GI's is only looking at those with GI symptoms..and in particular one symptom...

Fine is again focussed on the digestive system so his data is biassed towards this... indeed I think his lack of publishing is because of this and because we don't understand celiac disease enough (nor genetic markers) to start from this end of the puzzle.

Remember the Rubicks cube....

Its like Fine is starting off with a mixed up cube, one he knows should be solvable but he hasn't got all the techniques... it doesn't mean he's wrong .. what it means is he hasn't got all the "moves" together to start and solve the puzzle.... and someone might have actually sabataged it and twisted one piece and put it back rotated so it will never solve...

Haj... is starting off the the brand new cube, already solved (serology) and then he's taking steps away... move 2-3 then put them back.. then 5-6 etc. etc. but each time making sure he can put back the puzzle. There are of course millions of different ways to solve the puzzle from a fixed starting point... but Hadj is limiting himself to the ones he can solve and document...

This is WHY IMHO he has produced useful and peer reviewed data and Fine has not....

HOWEVER.... Fine is also concentrating more on being a MD than a scientist... he is putting helping his patients before research...

[aikiducky]

Also, this guy makes it sound like 70% of celiac disease patients have HLA DQ2, 9% have HLA DQ8 and "the remaining have DQ1".

Are those percentages of people with biopsy-diagnosed celiac? Because if so, it would leave out a huge number of people with neurological symptoms but without villous atrophy, and who knows what the percentages of different genes might be if those people were included.

I think it's pretty obvious you have a neurological presentation of celiac disease, why else do you think you get so depressed when you eat it?

I'm late to the thread so forgive me for getting back to the beginning point - when I first went gluten free and started feeling better, I also kept forgetting that I have it, and doubting that I have it, especially since I also don't have an official diagnosis. I used to have nightmares about eating gluten without thinking and then remembering halfway through a pizza or something that I shouldn't eat it. And wake up spitting, lol. I never did cheat in the end but it took a while before I was ok with just not eating gluten and not thinking about it all the time.

Pauliina