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Yellow Rose

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Hello Everyone,

My name is Carole Edminson/Yellow Rose from Hondo, TX and I have been skulking around for the past 3 months trying to figure out how to work this site. I finally figured it out and here is my story.

My husband is a Deacon in the Catholic Church and of course we pray for lots of people but I rarely pray for myself. In Oct of 2006 I pulled a muscle in my back and it did not heal up until early Dec. So I was very inactive and my muscles got real weak. In the middle of Dec. I pulled a groin muscle in my leg and that took 4 months to heal. At Easter every muscle in my body was hurting and I was thinking I was in a flare from athritus and could barely walk to the bathroom and back. Out of desperation I started praying and asked, "Lord Please Heal My Broken Body". The following week my oldest daughter Sarah who is a biochemist called me and she had been at the dentist and picked up a magazine that had an article on common misdiagnoses of genetic diseases. She had taken a class on genetic diseases the semester before and was very into it. She started to read the first one and almost put down the magazine but the second one had a symptom box and that caught her eye. Well after reading the list she said this sounds like my mom. She called me and we went on the internet together and I have had 95% of the symptoms over the past 27 years. The kicker for me was the seziures that have never been explained. I went to my Dr. who couldn't remember what the test for Celiac's was and told me to call him the next week. The last time he had a Celiac's patient was 8 years ago. My antibody test came back positive and I have been gluten free for less than 24 hours at this point because I found another hidden wheat source that I have been having all along (corn tortillias). My daughter Sarah wants to be a research Dr. and wanted to find a cure for my athritus. When I got the test back I called her and told her that she had cured me before she ever finished getting her degree. WE CRIED TEARS OF JOY.

I want to thank everyone who posts to this website. I would have been lost without all of you the past couple of months. Your compassion and willilngness to spread your knowledge has been a constant source of comfort while I was skulking around.

So now for my questions:

Those of you with joint and muscle pain how long before you went into remission?

Is there a Dr. packet? I can't believe that 8 yrs has gone by since mine has seen a Celiac patient. How many has he missed?

Yellow Rose

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Hey Carole,

We are glad that you have joined us.

Most doctors, are not well versed to look for Celiac Disease. It formerly was considered rare, but it's estimated that 1 in 133 have Celiac with an average of 11 years before being diagnosed. Rather not much excuse for doctors.

I had chronic lower back pain for many years and my doctor always told me that my IBS issues and back pain were unrelated. WRONG. After six months gluten free, the back pain is totally gone.

I am happy for you that you now can be on the road to recovery. Please feel free to ask anything.

Welcome to the Club!!!

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snip... the second one had a symptom box and that caught her eye. Well after reading the list she said this sounds like my mom. She called me and we went on the internet together and I have had 95% of the symptoms over the past 27 years. The kicker for me was the seizures that have never been explained...snip.

Can unexplained seizures be a symptom of celiac disease? I hadn't read that anywhere yet. I have a good friend who's daughter (32 yrs)just started having seizures. She has been tested for everything, (except celiac) and every thing comes out negative. Can you explain this more? Thanks for sharing your story. We pray every week for this young woman at Church...maybe this is the answer to our prayers for her.

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My understanding is it has to do with not being able to absorb latic acid. I read this early on somewhere on this site. I have been going through the old pages one at a time you might try a search under seizures to see if it comes up. A blood test is easy enough to ask for as a start.

Will pray for your answer.

Yellow Rose

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Can unexplained seizures be a symptom of celiac disease? I hadn't read that anywhere yet. I have a good friend who's daughter (32 yrs)just started having seizures. She has been tested for everything, (except celiac) and every thing comes out negative. Can you explain this more? Thanks for sharing your story. We pray every week for this young woman at Church...maybe this is the answer to our prayers for her.

Gosh, practically everything can be a symptom of celiac! :) I also had joint/muscle pain (with a diagnosis of fibromyalgia). The pain was gone in probably a month, but I'd lost a lot of strength and stamina from lying in bed for six months and it took a long time to get that back. Congrats on your diagnosis and welcome to the board!

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YR:

I am so happy you have a diagnosis. It is such a relief! This board is definitely a comfort, and a good place for information.

I would recommend your dr. (and you/your daughter) read:

Dr. Peter Green of Columbia University...."Celiac Disease: A Hidden Epidemic"

his celiac center's website is www.celiacdiseasecenter.columbia.edu

Dr. Alessio Fasano's clinic www.celiaccenter.org

and the NIH awareness campaign for celiac: http://www.celiac.nih.gov/

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Yellow Rose, welcome.

I don't know how to answer your question as having arthritis also does not make joint pain go away. However I can answer about the big "D" if you have that...lol

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Those of you with joint and muscle pain how long before you went into remission?

I had severe arthritis that started getting better after 5 days. Eight months after eliminating dairy, eggs, soy, beans and nightshade vegetables (as well as wheat and gluten) I was able to walk 12-14 hours a day at Disneyland with very little discomfort in my feet. After a year I had no signs at all and added some foods back.

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Hi Carole welcome to the board! You will find so much help and support here!!!

Thanks everyone,

I have noticed this week that I am not as painful since finding the corn tortillias with possible CC. I have only changed that one thing and was better in the beginning before I picked up the wrong brand. In Texas we have HEB grocery and they have an HEB Homestyle corn tortillia that has no wheat and the others listed and they are to die for. HEB, Central Market, and Hill Country Fare are all HEB brands and they have been suprisingly gluten free and inexpensive. The corporate headquarters is very good at getting back to you if it is not on their ready at hand list. I talked with them last week and they are working on mail order for groceries but not there yet. You can order a basket from them with things you want if anyone is interested.

I was at my Dr. last week and can't believe it but I have lost 21 pounds in the last three months.

Yellow Rose

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