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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newly Cursed (blessed?) By The Sprue
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:o Hello all, my name is Dawn and live in North Carolina. I'm 31 years old, married 4 1/2 years to an excellent guy and couldn't be happier- until recently. I have been cursed (blessed) with the Sprue genes my mom has. She was diagnosed 12 years ago. Mine just in the last couple of weeks has decided to make itself known and I am reeling from it. I have had symptoms here and there for the past several months but in the last few weeks it has hit me like a hammer. I have never felt so crappy in my life!!

I just chaulk it up as another ailment to add to my social anxiety disorder which I have been living with all of my life. :ph34r: I guess I'll have to see this as a blessing since I try to see the positive in everything that happens. When I was finally officially diagnosed with SAD (1999) and put on meds (Paxil) I thought my life was over but I have recently been able to help someone also with SAD to see that life does go on after all. I hope that I can do the same with The Sprue. There is not a support group for Celiacs in my area but I know there has to be more than just me with this here (I live just outside of Fort Bragg, NC) and I hope to find a way to get something going here. It will be interesting to see how that goes being as I am terrified of meeting new people, but maybe this will give me the push I need to do something about that. Hit two birds with one stone!

I hope this finds you all well and that we can have some good board chats.

peace...

jeepgirl

'95 Wrangler

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Hi jeepgirl, my name is Stacie and live in Georgia, I am 32 with 2 children and married to a wonderful man too, that has been very supportive during my sickness (since August 2002).

I am sorry you are not feeling well but it does sound like you are on top of things. Since your mother has the disease I am sure you are familiar with it, which is a blessing! Most people have never even heard of this strange disease, I mean, allergic to gluten?!?!?! Heck I had never even heard of gluten and had no idea that it was a lot more involved than just looking for the word "gluten".

Have you been tested for Sprue (celiac disease) or are you on a gluten free diet?

I found a list of support groups in NC from this site, I don't know if they are pretty close to you or not but it's worth a shot. I have to drive over an hour to get to the one here in GA ;) but I'm sure it will be worth it!!

Anyway, I do hope you being to feel better soon. Here is the list:

North Carolina

Asheville - - Resource:

Contact: Leah R. Karpen

518 Ox Creek Road

Weaverville, NC 28787

Tel: (704) 645-9067

Boone - Resource:

Contact: Ernest Lane

827 Blairmont Dr.

Boone, NC 28607

Tel: (704) 264-4618 or (704) 262-2380

E-mail: epl@math.appstate.edu

Chapel Hill - Resource:

Contact: Connie Margolin

908 Kings Mill Road

Chapel Hill, NC 27514

Tel: (919) 967-9954

E-mail: ThirdEar0@aol.com

Charlotte - Support Group

Contact 1: Caroline Herdle

Charlotte - Mecklenburg Celiac Support Group

14314 Harbor Estates Rd.

Charlotte, NC 28278

Tel: (704) 588-6842

E-mail: Katahdin1@pipeline.com

Contact 2: Daphne Ledford

3947 Abingdon Rd.

Charlotte, NC 28211

Tel: (704) 366-3493

Contact 3: Marsha Beers

9038 Gray Birch Court

Charlotte, NC 28215

Tel: (704) 597-0826

E-mail: EWOKSMOM@aol.com

Durham - Fayetteville Support Group

Contact 1: Ruth Thomas

North Carolina Celiacs (CSA)

Tel: (919) 542-4030

Contact 2: Susan Black

Tel: (910) 875-3186

Forest City - Resource:

Contact: Lisa Sievers

141 Greenbriar Dr.

Forest City, NC 28043

E-mail: sie@blueridge.net

Greensboro - Resource:

Contact: Phebe W. Erdman

3205 Oak Ridge Rd.

Summerfield, NC 27358

Tel: (910) 643-1365

Raleigh - Support Group

Contact: Sally Davis Comer

129 W. Park Drive

Raleigh, NC 27605

Tel: (919) 932-7285

E-mail: SComer3470@AOL.COM

Raleigh-Durham - Support Group

Contact 1: Sally Davis Comer

Triangle Celiac Support Group

129 W. Park Drive

Raleigh, NC 27605

Tel: (919) 932-7285

E-mail: SComer3470@AOL.COM

Contact 2: Diana Clarke

E-mail: DeBucket@aol.com

Contact 3: Connie Margolin

E-mail: ThirdEar0@aol.com

Summerfield - Resource:

Contact: Phebe W. Erdman

3205 Oak Ridge Rd.

Summerfield, NC 27358

Tel: (910) 643-1365

Winston-Salem - Resource:

Contact: Pam Brown

6295 Lochinvar Drive

Rural Hall, NC 27045

Tel: (910) 377-2687

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:D Thank you Stacie for your welcome. I had a better day today but am still feeling bad. I have an appointment with a GI Doc on 26 Feb. I had blood drawn last Friday but have not heard the results yet.

This thing is frustrating the heck out of me and my poor husband is not taking it well. He hates the idea of me not being ME. Fortunately I have no kids to run after while feeling this bad or else I'd definetely check myself into the nearest rubber room. I am feeling the anger part of the process coming on, which I knew would happen, but doesn't really help. I've been through worse though so no worries (I hope!)

Thanks again for the welcome.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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