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#1 Guest_jhmom_*

 
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Posted 26 May 2004 - 12:03 PM

Carol sent this to me via personal message, thought I should post it here so that we can all show our support.........

I'm new here and don't know if this message will go to the board or to a private e-mail so help me out if I do this wrong. My name is Carol and I'll be 55 in June. I've spent a life time searching for what was wrong with me physically. My mother searched before I left home at 18. I now have a 7 page health history that begins at birth. Long story short, I have a diagnosis of chronic fatigue/fibromyalgia, allergies/sinus, low thyroid/adrenal and IBS (plus irritable bladder). I thought the thyroid med was going to be the magic pill I was looking for but it hasn't been (and I'm on a HIGH dose of Armour). Went into my main doctor whom I love (found him 5 yeas ago) and after talking for a while he brought up that I might have celiac disease. I was suprised as I thought I knew the symptoms. My father had Chron's disease. I had the blood work (no results yet) and have also ordered the stool test from entero labs thanks to a gal on one of my groups. I've already started the diet based on what I know and will be VERY suprised if I don't have it. Searching the net gave me tons of info I didn't know about. Look forward to getting all the help I can get. Will keep you posted. Thanks much, Carol B
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#2 Guest_jhmom_*

 
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Posted 26 May 2004 - 12:18 PM

Carol, Welcome to the boards :D

Sounds like you have had a lot of health problems, ;) I hope you begin to feel better soon! I am glad that you are ordering the test through Enterolab, that is how I was dx along with my daughter. I have found Dr. Fine's way of testing to be more accurate than the standard blood test that other doctors rely on. I took the conventional route and went through a number of tests such as blood work, biopsy, etc and everything came back negative. :huh: I knew something was wrong and it wasn’t IBS no matter what the docs were telling me :angry: . I was at the end of my rope when I decided on Enterolab, it was well worth it. :)

Here are some helpful links that may help you gain more knowledge of celiac disease and eating Gluten Free:

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diets

Mainstream Products that are gluten-free

Gluten Free Meds

gluten-free Food List
**you will need Adobe in order to view this list**

Take care and I hope you get some answers soon, please keep us updated on your results.
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#3 kalo

 
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Posted 26 May 2004 - 03:26 PM

Well, since I looked around the page long enough I think I finally found the reply to group button. :-). Thanks for the welcome and the links. I will definately check them out. Yes, it's been a long haul. By the time my kids were born I was dragging my self out of bed (nothing unusual) and collasping on the couch. I got to where I couldn't even stand and do my dishes. In elementary school I used to get the stomache flue comming out both ends 24/7 for 3 weeks at a time. Guess what? The flue doesn't last that long. HMM! If this turns out to be my problem I will probably break down and cry. Once that is over I will celebrate. Including sending my doctor a thankyou card with a gift certificate to take his wife out to dinner. A gal on my kombucha tea group (fermented tea I make) turned me on to entero labs. I ordered the test Sunday night but it hasn't arrived yet and it's Wednesday. Any ideas how long it takes to get here? I also think my brothers should get tested. One of them has serious acid reflux and takes aciphex. I also have an autisitc son (he was born with it) and a husband with autistic symptoms. My daughter has PDD but very mild and you can't tell it anymore. My youngest son is normal (developmentally wise). Need to go. Sorry this was so long. I will let you know what I find out. Carol B
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

#4 taneil

 
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Posted 26 May 2004 - 03:32 PM

Carol,

Enterolab testing kit will probably get to you this week. However, you can only send the test back on Monday, Tuesday or Wednesday to insure that it gets to the lab during the week. So you will have to wait until next week in order to send it back to them. Once I sent my test back to them, it took four weeks to get the results.

How old is your autistic son? You might try a Gluten Free and Casein Free diet with him, it has been proven to help some autistic children.
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Taneil
Enterolab Diagnosed May 2004
gluten-free/CF and have both genes

Psalm 27:13-14
I would have despaired unless I had believed that I would see the goodness of the LORD In the land of the living. Wait for the LORD;
Be strong and let your heart take courage; Yes, wait for the LORD.

#5 Guest_LisaB_*

 
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Posted 26 May 2004 - 08:07 PM

Welcome Carol!

I read your story on another thread and you'll find comfort in knowing (I hope) your not alone, your story sounds almost identical to my Mom's. I have been going down the same road as well and it sure sounds like you have Celiac. It is miserable to fall apart without any answers...well, falling apart is bad either way, eh :lol: , but with answers there is hope of an action plan. And honestly, this is the best potentially fatal disease you can have! :P

So, hugs to you too, and let us know about your test results. Once you send off your samples for testing, maybe you can start the diet and see how you feel.
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#6 kalo

 
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Posted 26 May 2004 - 10:28 PM

Thanks so much to both Taneil and Lisa. I started the diet last week at my doctors request. Well, as much as I know so far anways. That was before I knew you had to be on gluten for the blood test. The blood test was done prior to my starting. According to enterolabs they will still pick it up if you have been gluten free so I intend to stay this way unless I find out I don't have this (that would be a BUMMER if you know what I mean). As to Peter my Autistic son, he is high functioning and 27 years old. He just tells me I'm nuts and there is NOTHING wrong with him. Not much I can do. He goes to a day program and is still very disabled in many ways. He also has a very low temp usually around 96.6. This is a sign of thyroid but there again unless he understands for him self and is willing my hands are tied. So I just keep him in my prayers. Would love to get the other members of my family tested. DD and DH. Sterling battled depression for years. That's another story. Thanks for letting me know about the stool test. I was getting inpatient. Of course, that will do me no good either. Off to bed (it's way past my bedtime and I really haven't felt good in about a month (fibro, sinus, stomache etc.) so ZZZZZZZZZZ thanks much. Hugs, Carol B
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04




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