So Jerry Is Very Frustrated....

[gfp]

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...

Thanks... I bow to the expert (from the rock guy )

On the last one this is exactly as I see villous atrophy...

DON'T DO THIS... (boy do I need that disclaimer but I got in all sorta of trouble before! ) ...

If you rub your hand against a hard object like a table top nothing happens.. only it does, it sloughs off some cells, no big deal the replace and they are meant to .you can do this everyday for 5 mins and have no discernable effects... BUT if you do this for 12 hours straight, not even pressing hard you'll have a massive bleeding sore...

The cells don't regenerate fast enough...

If your suceptibility of the villi is low and/or your in great health otherwise then the villi cells divide and repair... however its still causing damage... and forced cell replication increases the risk of bad mutation and cancer...

The cells of the villi evolved to self repair at a certain rate... whereas stomach lining cells are designed to be digested and self repair daily... hence their DNA programming leaves mcuh less chance of mutation.

The same happens if you are ill, pregnant etc. or just get older... the bodies ability to self-regenerate slows down... indeed recent studies have linked Alzheimers with celiac disease.... not surprising IMHO because the regeneration of cortical tissue is impeded by the bodies ongoing attempts at reparing the villi its so busy destroying... not to mention the blood brain barrier transmital.

See the photo of the brain MRI.... seriously Jerry.. take a look! Its this type of manifestation REALLY keeps me gluten-free... scares the pants off me in fact!

[gfp]

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.

Nope...

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

Seriously that was my first thing I said on this thread... if you have cravings then its affecting you... heck I eat lots of rice but I wouldn't miss it if I stopped... not as in a craving....

[JerryK]

Wow, thanks! I think I feel smarter now...

[miles2go]

Nope...

Seriously that was my first thing I said on this thread... if you have cravings then its affecting you... heck I eat lots of rice but I wouldn't miss it if I stopped... not as in a craving....

You guys have kind of been dancing around this lately...so are you saying that my hamburger dreams are just about enough of a dx as my dietary proof?

Margaret

[Fiddle-Faddle]

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.

When you think about it, how many people with neuro symptoms actually have endoscopies looking for villous atrophy? Very few....so for all we know, maybe they all have villous atrophy!

It's only recently that they figured out that DH is celiac, with or without villous atrophy.

[CarlaB]

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

You know, Jerry, you just make this way too easy .... you have been posting for months that gluten makes you sick, should you eat it or not .... you talk about yourself in the third person ... You have a very silly avatar .... NO, there's certainly no evidence that you have neurological problems with gluten!

I have 2 DQ1 genes. Boy does that explain a lot! Between the bacteria and protozoa wreaking havoc in my brain and the neuro problems with gluten, it's a good thing I started out with a high IQ because it's down to almost nothing now!!

[CarlaB]

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

In my opinion, if it can manifest itself in your skin and it can manifest itself in your intestine and be called celiac disease for both issues; then simple logic tells us that it can manifest itself in more than those two ways.

[gfp]

You guys have kind of been dancing around this lately...so are you saying that my hamburger dreams are just about enough of a dx as my dietary proof?

Margaret

If they are recurrent and REALLY about hamburgers but if yoor fixating then its got to have some reason... people who quit drugs often dream about the drug... and gluten is a drug so if you spend a long time feeling withdrawal during the day this can manifest itself as a dream at night. But Im no shrink

[miles2go]

Yeesh, yes, gfp, the first one was about pizza and the next three or four were about cheeseburgers, specifically.

And I'm not wont to recurring dreams, usually.

Is this gene-testing worthy?

I am happy, happy with my gluten-free cheeseburgers!

Margaret

[NoGluGirl]

Dear JerryK,

Here is a little bit of motivation for you. If you want to keep your gallbladder stay away from gluten! Four years ago, when I was 20, I had to have mine removed. Even worse, the doc I was with relied to heavily on the testing, which I discovered from research was only about 33 percent accurate at best. I pestered him until he finally let me see a surgeon. I found out at my 10 day check-up after the surgery that my gallbladder was very inflamed and irritated and nearly ruptured! Always listen to your body!

NoGluGirl Dictionary:

doctor - dock * tore - idiot in a white lab coat that normally has a God complex, severely lacks people skills, and intellect.

Dear gfp,

I am so glad you mentioned Celiac having a connection to Alzheimer's. My grandmother was diagnosed with it about a year and a half ago. I wondered about that. Another major component is heavy metal poisonings, often from mercury and aluminum from my research. There is a great book about this and how yeast overgrowth, food allergies, and heavy metal poisoning contributes to Alzheimer's. There is a man named Tom Warren who reversed his Alzheimer's (he had actual brain atrophies) and tells about it in his book "Beating Alzheimer's".

As far as Celiac research goes, I agree that both of the doctors Fine and Dr. H are microfocused.

They are only concentrating on one aspect. That can hinder instead of help finding answers. I had negative serology many years ago, and was told there was no way I have Celiac. My biopsy was negative as well, so they said. However, I do not believe they actually knew what they were looking for. If they had, they sure would not have missed a bad gallbladder! By the way, I am glad you finally got some wine!

Sincerely,

NoGluGirl

[tarnalberry]

Willpower! Don't hold your body hostage to the medical science's deficiencies.

And don't just eat "boring old meat, potatoes, and veggies". You can cook five bazillion (give or take a bazillion) different foods, in different flavors, in different styles, so you would never get bored. Heck, I could give you a dozen ways to cook potatoes that were all different! Add meat and veggies to that mix, and you should never get bored. Keep a few leftovers around, and have them instead of the cookies - or make your own cookies! (Mmm... ginger spice cookies... yum!)

[Abug]

Since my diagnoses, I've come at it from a completely different approach than I've seen yet. I've taken all the edible matter I had left to eat, and completely reinvented food. I had tried for a couple of weeks to imitate all the foods I used to eat before, but met every attempt with disappointment. Well, I gave that up, and started to put my obscure ingredients together in different ways, cooking some, etcetera, and it was like creating food for the first time, as if I were the first intelligent human, and I was creating a culinary foundation for all generations to come. It quickly became a lot of fun, and I haven't run out of ideas yet! I live alone, however, so nothing that I invent has any names. One thing I refused to live without was pizza, so I do have a dish that goes by that name. However, over the years, it has evolved to suit my personal preference, and probably bares little resemblance to the real thing by now. I also have a dish that I very loosely call Lasagne, which is at least recognisable by sight, but I have no idea how closely it tastes to the "real" kind. I only use that one when I need to eat at social gatherings, and want to have something that resembles what everyone else is eating so people don't ask me a bunch of questions.

[Nancym]

Since my diagnoses, I've come at it from a completely different approach than I've seen yet. I've taken all the edible matter I had left to eat, and completely reinvented food. I had tried for a couple of weeks to imitate all the foods I used to eat before, but met every attempt with disappointment. Well, I gave that up, and started to put my obscure ingredients together in different ways, cooking some, etcetera, and it was like creating food for the first time, as if I were the first intelligent human, and I was creating a culinary foundation for all generations to come. It quickly became a lot of fun, and I haven't run out of ideas yet! I live alone, however, so nothing that I invent has any names.

I did something similar to that. I decided I had to reinvent food for myself. But I figured out that Thai and vietnamese cuisine is very good and doesn't contain much wheat and 0 dairy. So I started learning how to cook their foods. I also knew that I'd mourn foods if I didn't replace old treats with new ones, so that was the first thing I attended to.

But you're right. You get a new staple diet and 90% of the problem is solved.

I did give up on Pizza though. Without cheese it just wouldn't be worth the effort, IMHO.

[Abug]

Come to think of it, many of my dishes are a lot like Thai food, and it makes sense! I have some Thai in my family, so I guess it comes naturally. Maybe I'll look up a bunch of Thai recipes and see if any of mine can take any of their names Might even get even more ideas that way too! OH! I need sweet & sour sauce .. is that gluten-free, or is there a gluten-free kind out there? Or is there a way of making it at home? That would be best for me I think! I love cooking and making my own food

Hey Nancym! Thanks for making me feel less alone

[Nantzie]

.

[Abug]

I feel the same way sometimes

[NoGluGirl]

I feel the same way sometimes

Dear Abug,

I could not live without Chinese food. Someone told me about Thai Kitchen entrees. The Original Pad Thai is so good! I just added some chicken, because that was all I had. It was great, though! I would love to try the recipe on the box, but need to get some stuff first!

Someone said LaChoy Sweet Sour Sauce is safe. I was ecstatic! I love to make my own when possible, but if I cannot, it is the next best thing! The recipe we normally use is:

1/2 cup each white vinegar and sugar

3 Tablespoons cornstarch (Argo)

3 Tablespoons each Pinapple and juice, and tomato sauce

1. Bring white vinegar to a boil.

2. Add sugar, and let disolve into vinegar, stirring occaisionally. (This takes 10 to 15 minutes)

3. Next, add Pineapple juice, tomato sauce, stir in evenly.

4. Take about 1/4 cup warm water, and stir in cornstarch until thick.

5. Add to sauce.

6. Mix in well, then continue to cook until sauce has thickened to proper consistency. (About 15 min.)

The sauce takes a half hour by itself. It is so good, though! The pot will be very sticky afterwards though!

Dad likes to add his own touches to it, too. He has added orange extract to it, and all kinds of other stuff. His own recipe is very sweet. I normally use the recipe above. It is more basic, and not overly sweet. Dad's version is less traditional, but really good. He puts sweet pickle relish in his even!

Sincerely,

NoGluGirl

[darlindeb25]

Hey Jerry, just wanted to mention--I finally see your new pic--very nice!

I dreamed one night that I was eating a hot dog in a bun and it was so good, then all of a sudden it hit me that I can't have that bun and honestly, I woke up in tears, so shaken, I coul dnot believe it. I actually felt like I had ate that hot dog and would soon be very ill. Amazing what our minds can do to us!!!!!!!

[gfp]

Dear gfp,

I am so glad you mentioned Celiac having a connection to Alzheimer's. My grandmother was diagnosed with it about a year and a half ago. I wondered about that. Another major component is heavy metal poisonings, often from mercury and aluminum from my research. There is a great book about this and how yeast overgrowth, food allergies, and heavy metal poisoning contributes to Alzheimer's. There is a man named Tom Warren who reversed his Alzheimer's (he had actual brain atrophies) and tells about it in his book "Beating Alzheimer's".

As far as Celiac research goes, I agree that both of the doctors Fine and Dr. H are microfocused.

They are only concentrating on one aspect. That can hinder instead of help finding answers. I had negative serology many years ago, and was told there was no way I have Celiac. My biopsy was negative as well, so they said. However, I do not believe they actually knew what they were looking for. If they had, they sure would not have missed a bad gallbladder! By the way, I am glad you finally got some wine!

Sincerely,

NoGluGirl

Yep and to be honest I find this the SCARIEST part of celiac disease.....

I find them both microfocused (damned good word that).... but the work of Hzxzzzjzx is written up in such a way as to allow other researchers to use it whereas Fine just isn't written up :-(

It doesn't mean I think Fine is wrong... he's being a damneed good MD and treating people .... whereas H... is research only and has no interest in people.... (I'm betting he would make House look like a caring MD with great bedside manners)

However his research is A++++ ... and ultimately he is providing answers to people who can use it to treat their patients!

This is what makes the word go round... we all have different strokes and stuff.... I spent most of my life in research because I'm not good with people.... had I know about gluten I might have spent my life differently because I am **much** better with people gluten free!

[JerryK]

Hey Jerry, just wanted to mention--I finally see your new pic--very nice!

I dreamed one night that I was eating a hot dog in a bun and it was so good, then all of a sudden it hit me that I can't have that bun and honestly, I woke up in tears, so shaken, I coul dnot believe it. I actually felt like I had ate that hot dog and would soon be very ill. Amazing what our minds can do to us!!!!!!!

On the weekend mornings, I get up early and go have a cup of coffee with my mom. She always keeps nice loaves of 12 grain bread etc...

This weekend I can't tell you how much I was lusting over a piece of toast. I REALLY REALLY wanted one..... I haven't dreamt about bread yet.......

[tarnalberry]

On the weekend mornings, I get up early and go have a cup of coffee with my mom. She always keeps nice loaves of 12 grain bread etc...

This weekend I can't tell you how much I was lusting over a piece of toast. I REALLY REALLY wanted one..... I haven't dreamt about bread yet.......

It's gonna take at least three months to get fresh memories out of your head. It'll get easier, the farther you get away from it, but until then, you just gotta buckle down.

[Natasha]

I feel your pain!!! I have a wheat allergy so, i'm not a celiac. I too sneak a cookie or a slice of bread at the restaurant every now and then. I'll echo the wheat free household thing too. it truly is the only way that works.

I have started baking some really delicious gluten free goodies comparable to the wheat-filled baked goods that I USED to eat. I test my products on the gluten eating coworkers and they can't tell the different. So much so that they suggested I started selling it! See my signature for details......

Also, Glutino makes the best gluten free, egg free cookies on the market IMHO! they have a website where you can purchase those tasty cookies too. Don't get a lot for your money though.

[JerryK]

It's gonna take at least three months to get fresh memories out of your head. It'll get easier, the farther you get away from it, but until then, you just gotta buckle down.

Everywhere ya look, there it is....EVERYWHERE!

[Fiddle-Faddle]

I'm tellin' ya, Jerry, once you learn how to bake gluten-free versions of your favorites, you will stop craving them. The first time you eat a gluten-free cake, cookie, or piece of really good bread (i.e., not those frozen slabs of styrofoam), it calms the craving--and the craving does not come back. The craving will only come back if you feed it (as in, consuming gluten).

Lorka's bread recipe (Open Original Shared Link) is so ridiculously easy--mix ingredients, dump in pan, set timer, turn on oven, and bake--and it tastes as good or better than any gluten bread I've ever had. Really.

How old are your kids? You can make breadmaking a once-a-week family project.

No more excuses!

[JerryK]

I'm tellin' ya, Jerry, once you learn how to bake gluten-free versions of your favorites, you will stop craving them. The first time you eat a gluten-free cake, cookie, or piece of really good bread (i.e., not those frozen slabs of styrofoam), it calms the craving--and the craving does not come back. The craving will only come back if you feed it (as in, consuming gluten).

Lorka's bread recipe (Open Original Shared Link) is so ridiculously easy--mix ingredients, dump in pan, set timer, turn on oven, and bake--and it tastes as good or better than any gluten bread I've ever had. Really.

How old are your kids? You can make breadmaking a once-a-week family project.

No more excuses!

The little darlings are 22 and 18...time to move out and save the gluten-free food for DAD:)