So Jerry Is Very Frustrated....

[JerryK]

OK, so like, I've been told that I don't really have Celiac see...just Gluten Intolerance, which seems to be kind of a curse. Cursed to never really be recognized as having a "disease" but oh joy do I get to feel CRAPPY from it.

I know you guys are getting tired of hearing this, and I'm getting tired of saying it, but not being diagnosed as Celiac gives me "permission" in my mind to eat a few cookies if I feel like it and feel like paying the price. Not only is this true for me, but my wife also. So what does she do? She fills up the house with tempting treats like chocolate chip cookies, girl scout cookies etc.....

Finally, when I can stand looking at them no longer, I quickly (with much guilt I must add) gobble down a cookie and OH is it satisfying. Then the next day as my bowels drain in the toliet, I vow never to do that again...but you know I will, because after all, I'm not "really celiac".

THEN, when I admit to my wife that I ate a cookie...she's like "Oh poor baby...why did you do that to yourself?". DOH, because they were sitting on the kitchen counter and I couldn't take it any longer.

Now I know what it must be like to be addicted to cigarettes...drugs or booze....simply because you can't have them, makes you want them even more.

In addition, I am so FREAKING tired of potatoes, meat, and vegetables, I could just scream. I find my self NOT BOTHERING to eat, because it is simply too much trouble....I am losing weight.

WTF do I do? If I go to the doctor, they MIGHT agree that Gluten Intolerance is real and that I should stay away from it. They've already done a blood test that ruled out Celiac, plus I don't have the gene markers. Ahhhhh! I'm loosing it man.....

[Jestgar]

If you eat it, you'll feel bad. If you're okay with the feeling bad part, well, not much I can say.

My recommendation would be, once girl scout season is over, train yourselves to only buy gluten-free treats. I know they're pricier, but you could justify that by telling yourselves that they tend to have higher quality ingredients.

You notice the deliberate use of plurals....

The little woman has to be part of this, or you'll cave every time.

[miles2go]

My mom does this kind of thing to my pre-diabetic dad every day.

I live alone and so don't have this kind of torture.

Tell your sweetie to box it....nicely...

[happygirl]

It must be bad if Jerry is talking in the 3rd person (in the title)

[Phyllis28]

Below are a couple of suggestions:

Talk to your family about maintaining a gluten free household. This may not be workable.

Talk to your family about maintaining a household with only a minimum gluten products. My home only contains store bought bread, rolls, hot dog buns, microwave Mac and Cheese, cereal and Doritos. We have canned chicken noodle soup and saltins handy for any stomach upset.

Keep lots of gluten free snacks around. If possible make them similar to the gluten goodies in the house.

[deesmith]

This is my first time posting... however, I worry about you guys who write "so I've stopped eating", even though you've hopefully just reduced your intake. Just as I suspected, gluten intolerance can also damage your intestines. I checked out the articles on this site and came across one that states just that. So even though you don't have a diagnosis for a disease, you do have a reaction to the gluten. And it could be damaging you and you don't know it.

It's too bad that it doesn't sound bad enough to others to take it seriously enough! I know your wife doesn't mean anything by it, but I know how you feel. My son was just home from college last week and I bought him snacks to take back. I'm telling you, if those Little Debbie brownies sat there any longer, I would have eaten the entire box!! I told him, "from now, this is a gluten free house, and you'll just have to eat that way when you come home from now on." It's way too tempting!

But, please, don't cheat if you can help it. I'm really sure my mom had undiagnosed celiac disease. We were told by the doctors (at a very prestigious hospital) that her intestines just stopped working. She starved to death (literally) for a year and weighed just under 60 lbs when she died. She kept saying "whatever they are feeding me is making me so sick". No one should ever, ever have to suffer like that.

I know it's so hard. I too am sick to death of the same stuff. And the candy bar treats have even gotten tiresome! But as some have posted on other threads... we eat to survive. Hang in there!

[CarlaB]

Jerry, want to hear that it could be worse? You could have two non-recognized diseases! Not only am I in the same boat as you with gluten intolerance, but I also have Lyme Disease and have to fly all the way to NY for treatment because the medical field says it doesn't exist!! It's hard having something that the medical field ignores, that's for sure.

How about keeping some ice cream in the freezer? Also, buy your favorite toppings. An ice cream sundae is much better than a Girl Scout cookie!! If you have tasty treats at home, then you won't be as tempted by the bad stuff.

There are also some GREAT brownie mixes out there. I like Namaste, and I've taken them over to other people's houses. They get devoured! I've also bought the blondies, which are good as they are or if you add a can of pumpkin to them.

Do you like candy? Much of it is gluten-free.

If you have other stuff around the house, you'll have alternatives to the cookies.

I, too, hate to eat. I complain about it every day! Not only is it a hassle to prepare the food, but I have no appetite either because of the Lyme. The only reason I'm not losing weight is that I have to eat enough food to take all my meds or I get nauseous!

I feel your pain.

[Yenni]

I live in a household where gluten stuff is almost always on the kitchen Island to tempt me. It is rare that there isn't cookies, bread or cake there. It is very difficult to deal with, but I get really sick when I eat the stuff that I have never eaten any. I do feel people should show some more understanding though, remove it, take it out of sight, preferably have a gluten free home.

So I feel for you and know how hard it is.

[Mango04]

I know where you're coming from because I don't have a celiac diagnoses either. The thing is, you really just have to make a firm decision one way or the other. You either eat gluten all the time and suffer or you don't eat gluten ever. Anything between those two options is really pointless.

Just decide that you will never eat gluten again and once you make that decision, never look back.

I don't know how to explain it, but in my mind I figure if I'm eating a bite of a cookie once in a while, I might as well eat a loaf of bread everyday. You have to get to that point where in your mind, caving in once in a while and eating gluten all the time are the same. Does that even make sense? I don't know...it works for me somehow...

It seems like you're struggling mostly because you feel deprived. There are certainly ways to make gluten-free versions of your favorite foods. I eat much tastier food now than I did pre-gluten-free, and I'm soy and dairy-free as well.

[rumbles]

Allele's, genetic markers are not complete for Celiac disease, - they know what they believe are the main or prominent markers, but researchers know that they do not have all of them yet. The blood tests are not 100% accurate, - not close, - they can be predictive, and they also can give false positives. Even the "gold standard," biopsy can be wrong if it isn't taken in the effected area, or taken incorrectly, handled incorrectly or studied by the wrong lab/people that are not fully trained and experienced. Have you read anywhere in any study that anyone knows definitively what the intestinal villi or what cellular changes are present in a pre-Celiac condition? (- That period of time, however long it is, that the cellular changes take place to advance a non-Celiac into the throws and destruction of an official Celiac diagnosis.) Not having a definitive diagnosis, on the other hand, if you can build your will up not to cheat on the diet, isn't necessarily a bad thing as far as being able to get medically insured. The only benefits to getting that diagnosis on a medical chart is getting a tax break (at least in the U.S.), and hopefully receiving a gluten free diet if you're admitted to a hospital (note the word hopefully, as even now, at least in the U.S., many dieticians and many nutritionists are not all that familiar with what gluten is or the concept of a gluten free diet, from what I've seen, read and heard).

If you are symptomatic, which you obviously are, accept that there is damage being done that is causing those symptoms, and believe that you know yourself better than those doctors and those tests and that you know the damage is happening, and know that you have the power to stop it from happening, prevent it from happening, and make a commitment to yourself that you are going to do everything in your power to be healthier and to live longer than those doctors and their tests. When you see that cookie, visualize the damage and visualize the symptoms, and walk away. Get an ice cream, or a chunk of watermelon or a gluten free cookie, get something safe, and embrace and celebrate that you are healthy! Who better than us should wind up being the healthiest people on this planet?

Okay, I'm off climbing off my soap box now . . .

[Fiddle-Faddle]

Jerry, buy a copy of Annalise Roberts' Gluten-Free Baking Classics, buy the flours she suggests, buy two plastic air-tight bins to store them in, and make up her "Bread Mix A" and her "Brown Rice Flour Mix." Then you can use them in her recipes just like gluten flour, and whip up some treats that blow Girl Scout Cookies out of the water!

Her brownies are AMAZING, and her cakes are better than any gluten cake I've ever made (and I always baked from-scratch cakes). The chocolate chip cookies are just as good as any I've ever had.

The best thing is, after a couple of weeks of having these treats, the cravings go away (because your're not consuming gluten), and then she can bring in the Girl Scout cookies, and they actually don't look that good any more!

Really and truly.

[Mango04]

The best thing is, after a couple of weeks of having these treats, the cravings go away (because your're not consuming gluten), and then she can bring in the Girl Scout cookies, and they actually don't look that good any more!

Really and truly.

Well said. I really truly am to the point where I can look at the most amazing cake (or cookie or whatever) and in my mind it does not even look like food. I might admire the aroma of it in the same way I'd enjoy a candle, but I really really won't want to eat it. You will get to the point where gluten cravings go away and you won't want that stuff anymore (and if you're just a little bit patient it won't even take that long)

[PeggyV]

Jerry,

I know it is frustrating. I feel the same way. Really cant add anything that hasn't been said, but hang in there.

Peggy

[darlindeb25]

Ok Jerry, bottom line is, you are gluten intolerant and you must be gluten free. I am reading a very good book written by Dr. Shari Lieberman, PHD, CNS, FACN. In this book it is mentioned that some people can have "acquired celiac disease." I firmly believe that if a person is gluten intolerant and does not go gluten free, that eventually that person will be celiac. The doctors really do not know enough about this disease yet to tell us that only those with the proper genes can have it. I do not have an official diagnosis, yet there is no doubt in my mind that I am a celiac--NO DOUBT!!! My sister is a diagnosed celiac, so at the very least, I am sure I have some of the same genes she has.

The real bottom line is you! You have to decide if you want to feel good, or if you prefer being sick all the time. I do not crave real cookies, crackers, cakes--nothing. I am surrounded by it at work and the only thing I feel is anger when one of the other's offer gluten to me. It angers me, simply because since the day they met me, I have been gluten free and they know I can't have gluten, yet they still offer it to me. That makes me angry, not the fact that I can't have the food.

I CHOOSE LIFE!

[gfpaperdoll]

Jerry, hang in there, I have two DQ1 genes & heck I do not care what the nit picking doctors think they know, gluten intolerance & celiac is really the same thing. I really think gluten intolerance is worse because we also get the neurological stuff, usually have more food allergies etc etc.

I would never cheat on gluten, there are just too many gluten free goodies out there. Gluten Free Pantry brownies for one - make some icing for them & you can skip lunch!!!

Now dairy free is another story, every once in a great while, I have a piece of cheese or something - get the stuffy head, stomach ache, & then a headache & say okay, not worth it...

Have you read the book "Dangerous Grains"? Some people like me tend to think that celiac is just the end stage of gluten intolerance.

I happen to know personally a few people that have had their genes tested & are double DQ1 & then the ones in my family & it encompasses, failure to thrive, DH, osteoporosis, dyslexia, rheumatoid arthritis, "IBS", on & on...

[Mtndog]

Jerry, hang in there, I have two DQ1 genes & heck I do not care what the nit picking doctors think they know, gluten intolerance & celiac is really the same thing. I really think gluten intolerance is worse because we also get the neurological stuff, usually have more food allergies etc etc.

I would never cheat on gluten, there are just too many gluten free goodies out there. Gluten Free Pantry brownies for one - make some icing for them & you can skip lunch!!!

Now dairy free is another story, every once in a great while, I have a piece of cheese or something - get the stuffy head, stomach ache, & then a headache & say okay, not worth it...

Have you read the book "Dangerous Grains"? Some people like me tend to think that celiac is just the end stage of gluten intolerance.

I happen to know personally a few people that have had their genes tested & are double DQ1 & then the ones in my family & it encompasses, failure to thrive, DH, osteoporosis, dyslexia, rheumatoid arthritis, "IBS", on & on...

See...this is what I always thought. I have been surprised to see the number of posts on this board that claim to be non-celiac gluten intolerant. I haven't done any scientifu research reading on it lately, but I guess i will have to. I know my GI believes that they are two seperate things but I always thought the end result was villi damage.

Here's what you need in the house AT ALL TIMES :

Namaste Blondies and Brownies (they are both amazing with chocolate chips in them)

Ice cream

Enjoy Life cookies (I'm partial to the chocolate chips)

Brownies by Foods by George

and of course, some healthy stuff.

I think it's kind of like the hangover thing...when you are hungover you swear you willnever drink again. But then the following weekend you feel better and so you do.

It's really hard.....but in the long run your body will thank you for it.

[chocolatelover]

Jerry,

I agree. It sucks to be in our position. My mother called me today to tell me how sorry she is that I can't eat the things I used to. I told her not to feel sorry for me--how about the fact that this is something we can LIVE with? It's not cancer. It's not ms or md or other degenerative diseases. It's not alzheimer's. It's not a car accident that has left us paralyzed. We are lucky to have found what our problem is and now it's up to us to make the decision to embrace it.

Make it a challenge. Try new things. Do you like to cook? If not, learn to like it. If you do, here are some websites either that carry gluten free products or have recipes. Many recipes are gluten free naturally, so look through your old cookbooks, maybe get some new ones. This is a great time to be going gluten free because there are so many resources out there for us now.

Many Asian, Thai, Indian Mediterranean and Mexican foods are gluten free. Try making them at home. You can still have pasta--Tinkyada is fabulous. You can still have bread and bread products--Gluten Free Pantry and Pamela's are both great. If you want more recipes, I have a million in all categories, including foccacia, bagels, brownies, cookies, cakes, etc. Email me and I'll send you more than you could try in a year.

Open Original Shared Link

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

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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

[Nancym]

Everyone is giving you very good advice. If it were me, I'd be ruthless with the rest of the family and say "We are a gluten-free household from here on out". If someone had a peanut allergy, you'd probably do that right?

[DebbieInCanada]

... I told her not to feel sorry for me--how about the fact that this is something we can LIVE with? It's not cancer. It's not ms or md or other degenerative diseases. It's not alzheimer's. It's not a car accident that has left us paralyzed. We are lucky to have found what our problem is and now it's up to us to make the decision to embrace it.

...

Jerry,

Wow you really opened the flood gates on this one! I must agree with CL, and second that attitude. It is what it is. And it's completely manageable.

I don't have a doctor's diagnosis. At all. No blood tests, no biopsy, none. My mother struggled for years trying to find a cause of her symptoms and illness, and got nothing from the medical community. Finally a holistic practitioner suggested going gluten-free, and it solved her health problems. Once I started getting the same symptoms, I did a trial gluten-free for 10 days, and there was no doubt I had the same issues. And I've never looked back. I don't need any doctor's validation to tell me how my body feels.

I live in a house with 4 gluten eating people, and I just don't care. When I bake something, I bake gluten-free, but my teenage daughter makes "regular" cookies, they have regular bread, cereal, crackers, etc. As long as they keep their crumbs wiped up, it's fine with me. I think one trick is keeping safe choices always on hand. I have gluten-free cookies, ice cream, cereal, and other quick snacks on hand all the time. I never really feel that I have to do without - I just have a different choice.

Most of our family meals are gluten-free, and no one complains that the food is boring. Check out the recipe resources that have been posted. Lots of appetizing food just waiting to be made!

So, just make up your mind, and move on...

Debbie

[Guest AutumnE]

If its difficult to eat healthy, I'll repeat what others have said. Eat the good gluten free junk food. You can either buy it prepared or make it. My favorite easy recipe is 4 ingredient peanut butter cookies and throw chocolate chips with them, edy's ice cream, Lays chips with french onion dip, pretzels and all the snack stuff. With things that are just impossible to resist ask her to eat it out of the house that its too tempting for you and horrible for your health. Since she loves you she may pout a bit about it (like my husband did) but she will not want to make it difficult on you. Obviously she cares about you or she wouldnt be with you Honestly unless your a clean freak or she is your bound to get glutened without even trying just by having crumbs around.

[NoGluGirl]

OK, so like, I've been told that I don't really have Celiac see...just Gluten Intolerance, which seems to be kind of a curse. Cursed to never really be recognized as having a "disease" but oh joy do I get to feel CRAPPY from it.

I know you guys are getting tired of hearing this, and I'm getting tired of saying it, but not being diagnosed as Celiac gives me "permission" in my mind to eat a few cookies if I feel like it and feel like paying the price. Not only is this true for me, but my wife also. So what does she do? She fills up the house with tempting treats like chocolate chip cookies, girl scout cookies etc.....

Finally, when I can stand looking at them no longer, I quickly (with much guilt I must add) gobble down a cookie and OH is it satisfying. Then the next day as my bowels drain in the toliet, I vow never to do that again...but you know I will, because after all, I'm not "really celiac".

THEN, when I admit to my wife that I ate a cookie...she's like "Oh poor baby...why did you do that to yourself?". DOH, because they were sitting on the kitchen counter and I couldn't take it any longer.

Now I know what it must be like to be addicted to cigarettes...drugs or booze....simply because you can't have them, makes you want them even more.

In addition, I am so FREAKING tired of potatoes, meat, and vegetables, I could just scream. I find my self NOT BOTHERING to eat, because it is simply too much trouble....I am losing weight.

WTF do I do? If I go to the doctor, they MIGHT agree that Gluten Intolerance is real and that I should stay away from it. They've already done a blood test that ruled out Celiac, plus I don't have the gene markers. Ahhhhh! I'm loosing it man.....

Dear JerryK,

I know exactly what you mean! The first couple of months, I ate nothing but plain chicken, beef, pork, eggs, canned veggies, and fruit. It is quite depressing. People eating food in front of you that you so desperately miss, the taste, the texture, the beauty! I am such a food whore! LOL! You know I have actually been lusting over food?

I do not get tempted to cheat, because I have such a violent reaction to gluten. I thought I was only gluten intolerant, because I tested negative in blood tests many years ago. However, my doctor refers to me as Celiac, due to having some patients who had negative biopsies and bloodwork but had it anyway. When I ingest gluten, I break out in a sweat, get terribly nauseated, get diarrhea, start shaking, sometimes my hands go numb, and hopefully I get the chance to down a Promethazine before the dry heaves start that make me feel like my insides are emploding. That is what I call a please kill me moment.

I also understand what it is like to live in a house where no one respects your situation. My father brought home my favorite yet again tonight, Chinese food. Why are people so cruel? I just cried. I still am crying. It makes me furious how inconsiderate people are. Even worse, they have glutened me numerous times, and have no consideration whatsoever for my condition. Supportive they are not.

If it had not been for my friends on this forum, I would be completely alone in this.

Sincerely,

NoGluGirl

[gfp]

Jerry,

Its just a decision....

Now you can either make it once or make it everyday....

Which is easier?

(unusually short post but really think about it like that)

[darlindeb25]

I agree with everyne, except for the insisting the home be gluten free. I have the disease, not everyone else. Why should they give up what they like only because I can't have it? The only time I asked my family to eat gluten free is when I feel it would benefit them. If I was diabetic, I would not ask my family to stop eating the things I can't, if I was on a sodium free diet, I would not ask my family to give up everything with sodium. You can have naturally gluten free meals and no one knows the difference, yet to ask them to go gluten free isn't fair, they do not have the disease.

Being gluten free is like being an alcoholic--it's not our choice. We do not get to chose, the decision is made for us. We live in a world full of gluten, we must adapt our way of thinking because we can't change everything else. The gluten will always be there to tempt us, yet we must be strong and not touch it. It's a decision you must make for yourself--to be healthy, or not.

Jerry, it does matter if you eat gluten, it does matter to us that you be healthy. We do know how you feel, each and every one of us have dealt with the same issues. Stay strong.

[Nancym]

OK, so like, I've been told that I don't really have Celiac see...just Gluten Intolerance,

Actually... I'd like to point out that this is the attitude that YOU choose to adopt. You could take it seriously and stop saying things like "only gluten intolerance, not celiac". You choose to present it to your family as a trivial thing even though there are plenty out there that DO regard it as as serious of a disease as celiac even sometimes worse because it can damage the brain.

I'd suggest you start to learn a little more about how serious the disease is and start reading the stuff published like Dr. Lewey, Dr. Hadjivallisiou, Dr. Fine, Dr. Perlmutter and many others about how damaging gluten intolerance is. Perhaps then you can understand a little better and take it a little more seriously.

But hey, there are people with terrible lung diseases that don't ever manage to quit smoking so I guess it isn't surprising that people with other diseases can't make the lifestyle changes needed to help themselves. But that is so pathetic... you don't want to be pathetic do you?

[JerryK]

Thanks for all your responses. The problem is I am a MAN if you couldn't already tell

I'm not going to do Gluten Free baking or make fancy Gluten Free meals...it just isn't going to

happen. I work full time and it's all I can do just to survive that, let alone try to find something "safe" to eat. So, I end up eating the same things OVER an OVER. Eggs, meat, potatoes, vegetables, fruit...eggs, meat, potatoes, vegetables, fruit and I'm sick of it. I want a fully loaded Godfathers Pizza.....

I notice some folks on here that don't eat meat...no offense, but I would die if I didn't get some protein.

What ends up happening if I'm really tired is I either don't eat or, if there are cookies on the counter, I might lose it and have one. Either option causes weight loss, if you get my drift.

And I'm doing all this because of a problem that is not even accepted as real by a large portion of the medical community. I understand the issues, but I was worried all along what would happen if I couldn't get an official diagnosis.

I did suggest to my wife that it's OK to have cookies, but how about not leaving them out on the counter so I don't have to look at them when I'm preparing my gruel.

I think I'll go to the local speciality store and see if I can find a whole lot of Gluten Free junk food and create my own special horde. Thanks for letting me vent. j