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-   -   Anyone out there with Celiac Disease? (https://www.quiltingboard.com/recipes-f8/anyone-out-there-celiac-disease-t4353.html)

Tiffany 02-03-2008 08:43 AM

I'm looking for a really good bread and/or biscuit recipe. One that doesn't include having to ship away for some exotic flour that costs $20 a pound.

For those who don't know, Celiac Disease is a life threatening allergy to the protein (gluten) in certain flours, such as wheat, rye, barley, spelt, and anything related. Usually, unless oats have been processed in a plant that does not process wheat, that's out too. I used to be very well known for my baked goods and then I learned I had Celiac Disease and finding substitutes for wheat has been an adventure; not a good one. I'm hoping someone in this Forum will either have Celiac Disease or know someone who does and if you've discovered a good bread or biscuit recipe, please share. I really, really miss bread. There are a few wonderful companies that put out a gluten free bread mix, but those are rediculously expensive and I can't afford to buy them on a regular basis. Right now it has been reduced to a holiday treat. A good bread recipe could change all that for me. :D Thanks ahead of time for any help offered!
~Tiffany

Yvonne 02-03-2008 09:25 AM

My sister and niece both deal with this disease. I'll ask what they have found. I know my sister gets really excited when she discovers some new way to have the food she likes and not get ill.

joannl 02-03-2008 09:47 AM

Tiffany,
I am soooooooo sorry to hear you have been diagnosed with Celiac disease. My husband was misdiagnosed with it several years ago & was on a gluten free diet for a year. It was horrible! I will try to find the bread recipe we used but it has been 10 years since he was correctly diagnosed.
I think I saw a recipe in Taste of Home magazine recently so you might check their website, sorry I don't have the link but let me know if you can't find it by searching on google or the like.

joannl 02-03-2008 09:58 AM

Tiffany,
My second thought about this is to have your doctor check your b cell count. My husband actually has CVID (common variable immuno deficiency) which means his immune system is compromised & the symptoms are similar to celiac disease. Because his correct diagnosis was delayed he has a great many health problems, extremely low bone density, lung, liver & digestive tract problems to name just a few.
The test for b cell count is a simple, inexpensive blood test but CVID goes undiagnosed quite often because it is somewhat uncommon. {makes you wonder why they call it COMMON variable immuno deficiency, doesn't it!?]
If you remember David, the boy in the bubble back in the 70's you will get a better idea of what I'm referring to, his case was extreme in that both his b cells & his t cells were nonexistent.
Anyway, I hope all goes well for you.
Jo

live2teach 02-03-2008 10:58 AM

Hi, Tiffany, I have not been diagnosed with Celiac disease but I am allergic to gluten, peanuts, soy and I am lactose intolerant. So, I know how you feel. I've been thinking of ordering gluten free foods online but they are expensive. I would love a good bread recipe too.

Tiffany 02-03-2008 11:02 AM


Originally Posted by joannl
Tiffany,
My second thought about this is to have your doctor check your b cell count. My husband actually has CVID (common variable immuno deficiency) which means his immune system is compromised & the symptoms are similar to celiac disease. Because his correct diagnosis was delayed he has a great many health problems, extremely low bone density, lung, liver & digestive tract problems to name just a few.
The test for b cell count is a simple, inexpensive blood test but CVID goes undiagnosed quite often because it is somewhat uncommon. {makes you wonder why they call it COMMON variable immuno deficiency, doesn't it!?]
If you remember David, the boy in the bubble back in the 70's you will get a better idea of what I'm referring to, his case was extreme in that both his b cells & his t cells were nonexistent.
Anyway, I hope all goes well for you.
Jo

I am definitely interested in having this test done. I also have Fibromyalgia and Chronic Fatigue Syndrom and my immune system is a joke. I do remember the boy in the bubble (played by John Travolta) and my husband commonly jokes that he is going to buy a bubble for me & calls me Bubble Girl. I can't even go to Walmart without some snot nosed kid making me sick. The blood test for Celiac Disease came back negative on me (which can happen) so they did a genetic test. Two parts of the test - one came back negative and one came back positive. The answer thus is inconclusive, though I have every symptom. Since the genetic test was supposed to prove it one way or the other, I can tell you I'm a bit fed up with doctors. I think most of the time they just guess at stuff and I'm tired of paying for results that are not conclusive. Yet a simple blood test is easy and I can have that done fairly soon. I'll have to let you know what the doctor says.
~Tiffany

joannl 02-03-2008 11:11 AM

Tiffany,
After a year on the gluten free diet with my husband getting sicker & sicker his dr (thankfully) retired so the partner took over my husbands case. It was the partner who correctly diagnosed him. We later found out the original tests came back negative but the dr just diagnosed him anyway, wrote in his charts that my husband was "cheating" on the diet, etc. We were so angry! I really hope this info helps even though CVID isn't a great thing to have your description certainly seems to fit. Michael (husband) gets an IV every other week if immunoglobulen. Most people get it every 3-4 weeks but the delay caused him to be worse. The really bad news is the cost of immunoglobulen - $20,000 a bottle- but insurance does pay for it.
Keep me posted.
Jo

Moonpi 02-03-2008 11:20 AM

$20,000 ? Geez, I hope he gets cured. On a different note, fibromyalgia is notorious for skewing test results. Good luck to all of you.

joannl 02-03-2008 11:35 AM

Moonpi,
Thank you but there is no cure. We just hope insurance doesn't do anything crazy!
Jo

Minda 02-03-2008 12:13 PM

I also have fibromyalgia and chronic fatigue syndrom. Although I have never been diagnosed with Celiac Disease, I used to have all the symptoms so I put myself on a gluten-free diet. As long as I stay on the diet, the symptoms don't return. My blood test also came back negative, but I had been on a gluten-free diet for a while when he ordered the test. I don't have any recipes so I would also be interested in some.


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