Is Anyone As Angry As Me?

[puppasita]

I need to vent so bad.

I am struggling so with the need to be gluten-free. I was sent to a GI in May 2004 by my primary after she did some bloodwork based on my symptoms. She said she was looking for celiac. The GI did a biopsy and gave me the good news that I don't have celiac. So then what is the cause for the constant diarhea, stomach aches, etc? He told me to watch my diet and instead focused on the damage he found in my esophagus (years of reflux). Anyway, watch my diet? Watch it for what? So I did my own research, found this board (PTL!) and ordered a test from Enterolab. Yes I have the gene, yes I am gluten intolerant and all that jazz. P.S. -- my mother has suffered with stomach probs for years; I have only had probs for the last couple of years. I scheduled a follow-up with my GI, presented him with the Enterolab results and he basically fluffed them off. "You don't have celiac. Just watch your diet." The guy had NO bedside manner.

So here I am 18 months later struggling to stay on a gluten-free diet. I think in large part it is due to the lack of support I felt from my doctor. I felt like no one was listening to me. Plus the smell of a tollhouse cookie gets me everytime.

Yes, I feel good when I don't eat gluten for a couple of days but I am not as committed as I need to be. I miss a good peanut butter and jelly sandwich - gluten-free bread stinks.

Can someone give me some advice. Is there a doctor in the house? A support group? I am located in Northern New Jersey.

[danikali]

Well, if you are gluten intolerant, there is no way you are going to get better with going on and off the diet. That is what I was doing before I had all the tests done and just "suspected" that I had Celiac. If you watch the post diagnosis threads on this site, and as I am learning myself (being still newly diagnosed), it takes a while to really feel completely better on the diet, to the point where even if you smell cookies, you will not give in to the two seconds of satisfaction with the gluten, for the "new" way you feel.

Also, if you have all these cravings, which I know how hard it is, believe me, I am a pastryaholic, and once I start, it's hard to stop, there are TONS of gluten free options. Have you tried making gluten free cookies, or brownies, or cake on your own? I made vanilla cake over the holidays and OH MY GOSH!!!! IT TASTED A MILLION TIMES BETTER THAN ANY CAKE I EVER ATE!!! And my whole family (non-Celiacs) agreed!

I also want to add, I'm sure you're feeling frustrated because gluten alone can make a person crabby. I was a mess up until about last week! Plus, add the cravings, and of course, the idiot, useless doctor information and the people around you who will NEVER understand truly, until it's them in the hot seat, and you are bound to go a little nuts.

So, at least you are on this forum now because WE ALL UNDERSTAND ALL OF THIS AND CAN HELP AND GIVE IDEAS AND MAKE YOU FEEL MORE RELAXED ABOUT THIS WHOLE THING. This online support group, alone, is one of the BEST things that ever happened to me through this whole gluten craziness.

ALso, I live in NYC, if that helps, and there are a couple girls that I try out gluten free resturants with that I met from this site, that I'm sure would love to add another to the group. If NYC is close for you, you are welcome to join us!

I hope this makes you feel better! Now GET OFF THE GLUTEN, FOR GOOD!

[jerseyangel]

Hi--it seems like there are quite a few of us here from NJ. My thoughts on your situation are that often the biopsy is neg. That dosen't necessarily mean you don't have it--it just means that a--you don't have enough damage yet, or b--the damage is in a different place than they took samples from. Think of it as "not positive" and not "negative". Given your family history, pos. gene result, and pos. response from the gluten-free diet--it would seem to me that you are at the very least gluten intolerant. Only you can deceide if the Dr.'s DX is important. Since you feel better off gluten, why not go 100% for a period of time and see how you feel. That can be all the answer you need. If you feel you need a Dr. to DX it , you could find a new GI, do a gluten challenge and be retested.

[chrissy]

my 3 girls have just been dignoxed as celiac, based mostly on blood tests. we are pretty fortunate in that we have a great ped gi that seems to be really "up" on his stuff. my twins both had biopsies, neither had any damage, but one had raised lymphocites. when we discovered that 3 of my children all had positive blood tests, he didn't even suggest doing a biopsy on my 10 yr old----he just told us to put them on a gluten-free diet. i asked him how neurotic we need to be and he said we need to be neurotic----he said we need to be anal (a term i don't use, but he's a pretty funny guy). i guess what i am trying to tell you is that we know from first hand experience, that biopsies dodn't always show celiac. when i asked about them not having any damage, he said that they probably do (that they didn't see) because their tTG numbers were so high.

christine

[VegasCeliacBuckeye]

Its possible to be gluten intolerant and not have Celiac disease...Think of it this way, everyone who has celiac disease is gluten intolerant, but not everyone who is gluten intolerant has celiac disease...

Hope that helps...

[tarnalberry]

For the most part, I don't understand this particular approach. You don't feel well. You know what makes you not feel well. But you continue to do what makes you not feel well. In the hopes... it suddenly won't make you feel not well? No, no, I'm not trying to poke fun or anything, goodness knows I've banged my head against the same metaphoric brick wall over certain things in the past - it's a tempting activity sometimes.

But the point is that you feeling well is ENTIRELY in your OWN hands. No one elses. And it's no one else's "fault" when you feel unwell because you ate something you shouldn't.

Oh, sure, knowing that doesn't magically make the cravings go away. Understanding it doesn't magically make gluten free bread taste like the wheat-y stuff. But it gives you an awful lot of power. It gives you all the power you need to be healthy and well for as long as you choose to be healthy and well.

In my opinion, particularly at a stage like this, it's *vital* to focus on the myriad of foods you CAN eat. There are, in the grand scheme of the world, a whopping four items you can't have - wheat, barley, rye, and oats. Yes, yes, and the things made out of that. But you can have everything else! And everything you can make out of those everything else's. It'll take some time and patience to figure out what of those things that you can make from all those ingredients you can have, that you really like to have. Surprisingly enough, I think peanut butter and jelly sandwhiches are the easiest to find gluten-free bread that is suitable, though you definitely have to try out a few varieties.

Since you didn't note what you're most struggling with (other than chocolate chip cookies, which you can make gluten-free yourself), I can only encourage you to keep reading the board and ask questions when they pop up. There's a lot of good ideas and friendly support here, that can help you stay committed!

[nettiebeads]

Please go gluten-free! I remember when I first started out on the gluten-free diet, I'd get the cravings so bad that I'd knosh on anything. Then spend way too much of my time in the bathroom regretting it. Eventually, by going gluten-free and staying that way, the cravings will subside. Replace the urge to snack with any good fresh fruit or veg, or pickles will really overwhelm your tastebuds and numb them up. I'm finally (after years of doing w/o) working on a gluten-free pie crust dough. I've even made pies for the family that I can eat and no one could tell the difference. (I could, but I'm a perfectionist when it comes to pie crusts). Working in the kitchen can be fun when it's your own hands doing the baking and experimenting. And even if it's not 100% satisfactory, the food can be reused as breading or in bread pudding or a trifle. But you do need to go gluten-free. A false negative is way to common of an occurance to be considering yourself as a non-celiac, or a non-gluten intolerant.

Annette

[puppasita]

Well, if you are gluten intolerant, there is no way you are going to get better with going on and off the diet. That is what I was doing before I had all the tests done and just "suspected" that I had Celiac. If you watch the post diagnosis threads on this site, and as I am learning myself (being still newly diagnosed), it takes a while to really feel completely better on the diet, to the point where even if you smell cookies, you will not give in to the two seconds of satisfaction with the gluten, for the "new" way you feel.

Also, if you have all these cravings, which I know how hard it is, believe me, I am a pastryaholic, and once I start, it's hard to stop, there are TONS of gluten free options. Have you tried making gluten free cookies, or brownies, or cake on your own? I made vanilla cake over the holidays and OH MY GOSH!!!! IT TASTED A MILLION TIMES BETTER THAN ANY CAKE I EVER ATE!!! And my whole family (non-Celiacs) agreed!

I also want to add, I'm sure you're feeling frustrated because gluten alone can make a person crabby. I was a mess up until about last week! Plus, add the cravings, and of course, the idiot, useless doctor information and the people around you who will NEVER understand truly, until it's them in the hot seat, and you are bound to go a little nuts.

So, at least you are on this forum now because WE ALL UNDERSTAND ALL OF THIS AND CAN HELP AND GIVE IDEAS AND MAKE YOU FEEL MORE RELAXED ABOUT THIS WHOLE THING. This online support group, alone, is one of the BEST things that ever happened to me through this whole gluten craziness.

ALso, I live in NYC, if that helps, and there are a couple girls that I try out gluten free resturants with that I met from this site, that I'm sure would love to add another to the group. If NYC is close for you, you are welcome to join us!

I hope this makes you feel better! Now GET OFF THE GLUTEN, FOR GOOD!

Thanks a bunch for your response and support. I went to the health food store this weekend and picked up some gluten-free blueberry muffins -- warm with a little bit of butter and they weren't so bad.

I live in Morris County so I am not far from NYC. I would welcome the opportunity to join you and your Gluten-free friends for dinner or at least to chat for now. My email address is sueric@optonline.net

Puppa

For the most part, I don't understand this particular approach. You don't feel well. You know what makes you not feel well. But you continue to do what makes you not feel well. In the hopes... it suddenly won't make you feel not well? No, no, I'm not trying to poke fun or anything, goodness knows I've banged my head against the same metaphoric brick wall over certain things in the past - it's a tempting activity sometimes.

But the point is that you feeling well is ENTIRELY in your OWN hands. No one elses. And it's no one else's "fault" when you feel unwell because you ate something you shouldn't.

Oh, sure, knowing that doesn't magically make the cravings go away. Understanding it doesn't magically make gluten free bread taste like the wheat-y stuff. But it gives you an awful lot of power. It gives you all the power you need to be healthy and well for as long as you choose to be healthy and well.

In my opinion, particularly at a stage like this, it's *vital* to focus on the myriad of foods you CAN eat. There are, in the grand scheme of the world, a whopping four items you can't have - wheat, barley, rye, and oats. Yes, yes, and the things made out of that. But you can have everything else! And everything you can make out of those everything else's. It'll take some time and patience to figure out what of those things that you can make from all those ingredients you can have, that you really like to have. Surprisingly enough, I think peanut butter and jelly sandwhiches are the easiest to find gluten-free bread that is suitable, though you definitely have to try out a few varieties.

Since you didn't note what you're most struggling with (other than chocolate chip cookies, which you can make gluten-free yourself), I can only encourage you to keep reading the board and ask questions when they pop up. There's a lot of good ideas and friendly support here, that can help you stay committed!

Thanks Tiffany. I ventured to the health food store this weekend and checked out a lot of the Gluten-free products. I purchased blueberry muffins and some cinnamon-currant bread. A little warm with some melted butter and it wasn't too bad.

I am going to do this instead of fight it. Thanks for your support.

Puppa