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2ofus2kids2dogs

Hi Everyone, I'm New....

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Hi everyone. I've been reading all the message boards and finding tons of helpful information. I am not diagnosed, but I had had 9 years of stomach problems with no diagnosis. I lost 30 lb rather quickly without trying back then and have never been able to gain it all back. I have constipation, severe indigestion, stomach cramps, etc. I've been to doctors off and on with no real answers. I pretty much gave up hope of ever figuring it out.

Two years ago I was doing some research and found out about celiac disease. I had heard of it, but was not familiar with all the various symptoms. So, without any diagnosis or discussion, I went gluten free. I felt great within days. My indigestion (which is horrendous, and medicine does not help) went away within a few days. The constipation took a bit longer, but that got better too. I did gain a few pounds, but not as much as I wanted to. Well, long story short, I gave up on the diet after 6 months. Basically, had a horrible craving for pizza - ate it and nothing happened. No indigestion, no cramping, no constipation, no nothing. So, I thought, well, it must not be the gluten. I went back to normal eating, but slacked off on the breads, etc. I did okay for a while, not really sure when it came back all together, but last fall - all my symptoms were back full force. I went to the doctor, again and again, differnt meds, etc. Finally, this summer I decided enough was enough. I went to a GI and vowed to keep going and getting tested for stuff until I had an answer.

I saw the GI, they said esophageal spasms, gave me medicine. No relief. Then I had an endoscopy done - nothing showed on that. I had asked for biopsies for celiac but the doctor did not do them. He said everything "looked okay" so he did not do biopsies. Had a gallbladder utlrasound done, that was fine. Then they wanted me to have a HIDA scan to rule out gallbladder for sure. I decided enough was enough, went gluten free a month ago on my own and I'm feeling great again. All my GI symptoms have resolved. I'm being much more careful this time about cross contamination. I've gained a couple of pounds.

So, now I'm basically trying to decide whether to pursue diagnosis. I DO NOT want to go back to eating gluten just for the tests. I've read about Enterolab, so I'm thinking of going in this direction.

I have really enjoyed reading what everyone writes about. I made the "pumpkin cupcakes" from the baking tips forum and they were delicious (and my husband - not celiac - ate a TON of them). I've found a few reicpes on my own, and I'm surviving. The hardest thing for me is breakfast. I've always eaten some sort of warm bread, toast, bagle, english muffin. So, now I'm trying to find other things.

Two years ago when I was gluten free I never found a bread I liked. Of normal bread, I like regular white bread and sourdough. I also never found a pizza crust that I was crazy about. If anyone has recommendations, please send them my way.

Again, thanks for the information. This message board is making a big difference in keeping me on track this time.

Melissa


Melissa in Virginia

Age 35, married, 2 kids, 2 dogs.

No diagnosis. Gluten free since 10/2/06

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Welcome!

It certainly sounds like you have a positive dietary response and that is the best indicator! If you want to try Enterolab just for your own peace of mind, go for it. I did and was very happy with their service. I was also happy to find out what genes I had so I know what to expect with my children.

I like Kinnikinnick bread, the tapioca Italian (or something like that) is my favorite, and the brown sandwich bread is my second favorite. They also make good donuts. I buy the pizza crusts for my daughter, and she likes them, but I have never tried them myself.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi everyone. I've been reading all the message boards and finding tons of helpful information. I am not diagnosed, but I had had 9 years of stomach problems with no diagnosis. I lost 30 lb rather quickly without trying back then and have never been able to gain it all back. I have constipation, severe indigestion, stomach cramps, etc. I've been to doctors off and on with no real answers. I pretty much gave up hope of ever figuring it out.

Two years ago I was doing some research and found out about celiac disease. I had heard of it, but was not familiar with all the various symptoms. So, without any diagnosis or discussion, I went gluten free. I felt great within days. My indigestion (which is horrendous, and medicine does not help) went away within a few days. The constipation took a bit longer, but that got better too. I did gain a few pounds, but not as much as I wanted to. Well, long story short, I gave up on the diet after 6 months. Basically, had a horrible craving for pizza - ate it and nothing happened. No indigestion, no cramping, no constipation, no nothing. So, I thought, well, it must not be the gluten. I went back to normal eating, but slacked off on the breads, etc. I did okay for a while, not really sure when it came back all together, but last fall - all my symptoms were back full force. I went to the doctor, again and again, differnt meds, etc. Finally, this summer I decided enough was enough. I went to a GI and vowed to keep going and getting tested for stuff until I had an answer.

I saw the GI, they said esophageal spasms, gave me medicine. No relief. Then I had an endoscopy done - nothing showed on that. I had asked for biopsies for celiac but the doctor did not do them. He said everything "looked okay" so he did not do biopsies. Had a gallbladder utlrasound done, that was fine. Then they wanted me to have a HIDA scan to rule out gallbladder for sure. I decided enough was enough, went gluten free a month ago on my own and I'm feeling great again. All my GI symptoms have resolved. I'm being much more careful this time about cross contamination. I've gained a couple of pounds.

So, now I'm basically trying to decide whether to pursue diagnosis. I DO NOT want to go back to eating gluten just for the tests. I've read about Enterolab, so I'm thinking of going in this direction.

I have really enjoyed reading what everyone writes about. I made the "pumpkin cupcakes" from the baking tips forum and they were delicious (and my husband - not celiac - ate a TON of them). I've found a few reicpes on my own, and I'm surviving. The hardest thing for me is breakfast. I've always eaten some sort of warm bread, toast, bagle, english muffin. So, now I'm trying to find other things.

Two years ago when I was gluten free I never found a bread I liked. Of normal bread, I like regular white bread and sourdough. I also never found a pizza crust that I was crazy about. If anyone has recommendations, please send them my way.

Again, thanks for the information. This message board is making a big difference in keeping me on track this time.

Melissa

I sure do not agree that your DR. did not do the biopsies you asked for you. :unsure: Some of us (a lot) have problems getting diagnosed, including me. Such a long time for me and then GI said "presumed celiac' a few months ago, so I gained back some lost weight. I had not been a big bread fan so I use alternate grains cooked for breakfast..quionoa, millet, wild rice, amaranth and rice + corn meal mush. I also alternate all my foods four days to try to keep from developing more allergies to foods. I have done some baking with mixes and some using my own mixture of flours from recipes in Dana Korns good book about celiac and gluten free recipes, she covers a lot.

On the weekend usually many people are away from the forum but they will be back and have many hints for you so hang in here, help is on the way. Many here have used Entero lab, seems to work well. Wish you the best in your search for better health and it does take time usually. Evie

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Welcome!

I don't have any spectacular advice on the dignosis but if you feel better going gluten free then I say stick with it - its certainly worth it!

As for pizza crusts the Kin.... I can never spell it! are pretty good and versatile and if you want a quick premade pizza the Foods by George are yummy but very pricey. I'm not a huge fan of the glutino ones which is surprising because a lot of their products are excellent!

This site is great and has lots of info and nice helpful people! Good luck! :D


Kristen

Diagnosed through blood test

Gluten-Free since 3-31-05

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Hello and welcome to the neighborhood.

I agree with what everyone else is saying. I dont like that your doctor refused to biopsy you for celiac. If the diet makes you feel well, my advice is to stick with the diet.

I have heard plenty of good things about Entrolab for testing. I know someone on here can give you more specifics on that, we havent used it yet. We will be having my son tested soon.. he is only 18 months right now. I refuse to put him on gluten to find out if he is a celiac. I will just have enertrolab test him.

Any questions you might have, which are probably plenty if you are anything like me when I started, feel free to ask. There is always someone here who has been there themselves!

Again, welcome aboard!


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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Hi Melissa and welcome.

I knew for years I had problems with wheat and would generally avoid it but when I did eat it the first few times were okay and then the C and bloating and kick back in and I would remember that I couldn't get away with it.

Sorry, I can't help you with the bread substitutes, I can't tolerate them too well either.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Hi everyone. I've been reading all the message boards and finding tons of helpful information. I am not diagnosed, but I had had 9 years of stomach problems with no diagnosis. I lost 30 lb rather quickly without trying back then and have never been able to gain it all back. I have constipation, severe indigestion, stomach cramps, etc. I've been to doctors off and on with no real answers. I pretty much gave up hope of ever figuring it out.

Two years ago I was doing some research and found out about celiac disease. I had heard of it, but was not familiar with all the various symptoms. So, without any diagnosis or discussion, I went gluten free. I felt great within days. My indigestion (which is horrendous, and medicine does not help) went away within a few days. The constipation took a bit longer, but that got better too. I did gain a few pounds, but not as much as I wanted to. Well, long story short, I gave up on the diet after 6 months. Basically, had a horrible craving for pizza - ate it and nothing happened. No indigestion, no cramping, no constipation, no nothing. So, I thought, well, it must not be the gluten. I went back to normal eating, but slacked off on the breads, etc. I did okay for a while, not really sure when it came back all together, but last fall - all my symptoms were back full force. I went to the doctor, again and again, differnt meds, etc. Finally, this summer I decided enough was enough. I went to a GI and vowed to keep going and getting tested for stuff until I had an answer.

I saw the GI, they said esophageal spasms, gave me medicine. No relief. Then I had an endoscopy done - nothing showed on that. I had asked for biopsies for celiac but the doctor did not do them. He said everything "looked okay" so he did not do biopsies. Had a gallbladder utlrasound done, that was fine. Then they wanted me to have a HIDA scan to rule out gallbladder for sure. I decided enough was enough, went gluten free a month ago on my own and I'm feeling great again. All my GI symptoms have resolved. I'm being much more careful this time about cross contamination. I've gained a couple of pounds.

So, now I'm basically trying to decide whether to pursue diagnosis. I DO NOT want to go back to eating gluten just for the tests. I've read about Enterolab, so I'm thinking of going in this direction.

I have really enjoyed reading what everyone writes about. I made the "pumpkin cupcakes" from the baking tips forum and they were delicious (and my husband - not celiac - ate a TON of them). I've found a few reicpes on my own, and I'm surviving. The hardest thing for me is breakfast. I've always eaten some sort of warm bread, toast, bagle, english muffin. So, now I'm trying to find other things.

Two years ago when I was gluten free I never found a bread I liked. Of normal bread, I like regular white bread and sourdough. I also never found a pizza crust that I was crazy about. If anyone has recommendations, please send them my way.

Again, thanks for the information. This message board is making a big difference in keeping me on track this time.

Melissa

I actually just tried the white tapioca bread by Ener-G, and also the english muffins by Ener-G...and they were both OUTSTANDING!! You can order them at a discounted rate through amazon .com ;)


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

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Guest nini

Welcome...

bread substitutes: I like Pamela's Amazing Wheat Free gluten-free bread mix, I also recently discovered EnerG's Tapioca Hot dog buns, hamburger buns, and english muffins (make sure they are the tapioca ones as the rice ones are not so good!) They also now have donut holes and cookies and donuts and cinnamon rolls, and apparently the Tapioca bread is much better than the Rice bread.

Kinnikinick also makes awesome products, my daughter loves the Italian White Tapioca Rice Bread, and the donuts and the brownies, and even the bagels.

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Ditto on Kinnikinnick - very good breads & donuts


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Thanks for the warm welcome everyone. I have not tried the Kinnikinick products, but after hearing so many good things about them, I think I'll place an order for a few items to see how I like them. I have picked up a few things here and there at Ukrops, which is the only mainsteram grocery store around that has gluten-free products (and its still 30 minutes away). I live in a small town, the only grocery store is Food Lion and they do not have any specialty items. There is a grocery store about 50 minutes away, a health food type place and from looking at their website, they have a good variety of gluten-free stuff, but I haven't been yet. Its called Good Foods, but I don't think its a chain, I think its local. (Richmond, VA).

I was very upset about the doctor not doing the biopsies. That was the main reason I submitted to the test. I really think I'm going to do the Enterolab. Just for peace of mind.

My daughter actually had the blood test done for celiac when she was about 18 months old. She was having chronic diarrhea and had always been underweight, but the test was negative. They treated her with Flagyl and finally deteremined it was from all the antibiotics she had taken in the previous months. It cleared up and she has no symptoms of celiac now. I need to pull out her lab work from way back when (she's 10) and see what exactly they tested for.

Thanks again for being so kind - and for the recommendations.

Melissa


Melissa in Virginia

Age 35, married, 2 kids, 2 dogs.

No diagnosis. Gluten free since 10/2/06

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Guest nini

just because your daughter's tests were "negative" it still doesn't rule out Celiac, unfortunately the tests just aren't sensitive enough to catch Celiac in the early stages, currently they can only catch it in the final stages of it, at the point where there is so much villous atrophy and the immune system has gone haywire.

Positive dietary response is the most conclusive test. Any of the other tests can only confirm it if positive but can never ever rule it out. Enterolab may help but IMHO it's costly and unecessary when all you have to do is try the diet and see it it helps. (where the tests come in handy is for someone who is Asymptomatic but still has total villous atrophy- which just goes to show you it can manifest in so many different ways.)

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