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Celiac.com Celiac Disease & Gluten-Free Diet Forum: Introduction And Thanks - Celiac.com Celiac Disease & Gluten-Free Diet Forum

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Introduction And Thanks recent diagnosis Rate Topic: -----

#1 User is offline   Mskedi 

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Posted 02 July 2009 - 10:54 AM

Last week my sister was diagnosed with Celiac Disease. This was no surprise considering my grandmother had it and my cousin was diagnosed a few years ago. Just about everyone in my family complains of digestive problems and, because of that, several relatives who have had negative blood results have chosen to avoid gluten anyway. They report great improvement overall.

So, when my sister was diagnosed, I decided that I should cut gluten out of my diet despite my negative blood test a few years back. My grandmother had several negative blood tests, and, if I remember correctly, so did my cousin, so my blood test would hardly be definitive. I figure it simply isn't worth it to have the chance of letting things develop to what they did for them, and if I successfully cut all the gluten out, I can never be diagnosed. Besides, by going gluten-free I can share recipes and products with my sister... I really don't want her to have to make this big change alone. My husband fully supports this decision, and had actually been bringing it up long before my sister's diagnosis -- just about every time I complained of having a stomach (technically intestinal) ache after eating.

Over the past week, I have relied heavily on this website, and I wanted to express my thanks to all of you who have posted information, support, recipes, and experiences. It's definitely made this switch seem much more realistic and doable than it sounded at first.

I think I've been most surprised by the number of symptoms related to Celiacs that I was unaware of. Digestive trouble was obvious, and anemia and its related easy bruising also made sense, but depression and skin problems? I never would have thought of those. It will be interesting to see if going gluten-free helps at all in any of those areas. I am most anxious to see improvement in my anemia. I have never once had a normal iron count. I even had a doctor tell me that "some people simply can't absorb iron very well" when no amount of iron supplements helped. After about six months of this, I'll have a blood panel done and see if there has been any improvement.

After I get the hang of this, I hope I'll be able to help the community out. Right now I'm de-glutenizing some of my favorite vegetarian recipes, so I'll let you all know how those turn out and share whatever I come up with.
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#2 User is offline   Mtndog 

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Posted 02 July 2009 - 10:56 AM

I'm SO glad that you were able to find the help and support you needed here!

Welcome, welcome, welcome!
***************************
Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.
Albert Careb


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#3 User is offline   ravenwoodglass 

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Posted 02 July 2009 - 02:40 PM

Welcome, I am another blood negative celiac so I know how difficult the diagnosis process can sometimes be. As you have seen you found a great place for info and support. If you have any questions or just need to vent we are here for you. I hope you are feeling better soon.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
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#4 User is offline   ranger 

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Posted 03 July 2009 - 10:39 AM

Welcome! This forum has helped me a zillion times. At first, I just read and read. It not only taught me the ins and outs of going gluten-free, but also kept me from feeling so alone in the world. People don't know much about celiac's- I know I didn't before I got it. Hang in there and feel free to ask questions- even if you think they're dumb ones!
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#5 User is offline   K-Dawg 

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Posted 05 July 2009 - 04:25 PM

View PostMskedi, on Jul 2 2009, 11:54 AM, said:

After I get the hang of this, I hope I'll be able to help the community out. Right now I'm de-glutenizing some of my favorite vegetarian recipes, so I'll let you all know how those turn out and share whatever I come up with.


Hey - WELCOME!

I know what you mean -- I am newly diagnosed and this board is SO helpful. Can't wait to hear some of those vegetarian recipes!

Good luck
Many autoimmune disorders: Graves Disease in 1998, Psoriasis on or about 2000, Hashimoto's in 2008.

Severely anemic in 2007 (undetectable iron levels)

Elevated liver enzymes (ALT and AST) as of October 2008.

Negative blood test for celiac disease in February 2009, followed by diagnosis of celiac disease in April 2009 after positive biopsy.
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#6 User is offline   Mskedi 

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Posted 30 July 2009 - 04:44 PM

I thought I'd update since I've been just about a month gluten-free now.

The difference is pretty drastic. First off, my scalp isn't itchy and scabby anymore at all. Who knew? Also, digestive troubles are a thing of the past but for two recent accidental glutenings (the reactions to which were so severe that I'm pretty sure I made the right decision). I feel GOOD, and now that I've successfully made a gluten-free flour tortilla (I always said I liked corn ones better, and then the minute I couldn't have flour ones I started craving them), I don't feel deprived in the least. I'm actually having a lot of fun messing around with recipes and de-glutenizing them. It probably helps that the teaching year doesn't start for another month, so, except for the classes I'm taking, I've got a good chunk of the day to play around in the kitchen. I think I'll have mastered a pretty good set of yummy staples by the time I have to start packing my lunch again.

I've been reading a lot and getting more informed, and my sister is doing really well with the diet. So far, so good.
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#7 User is offline   Mskedi 

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Posted 30 July 2009 - 04:48 PM

Oh! And I've been sleeping through the night! I haven't done that in ages!!
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#8 User is offline   happygirl 

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Posted 30 July 2009 - 04:49 PM

Happy to hear your family is doing so well. I just wanted to welcome you to this corner of the Celiac world. Its a good place to be!
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