• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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
0

3 posts in this topic

: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

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

: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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,435
    • Total Posts
      930,559
  • Member Statistics

    • Total Members
      63,867
    • Most Online
      3,093

    Newest Member
    vprovenzatn
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thank you for posting this I've never been to South America, it's the only continent, bar the poles, I've yet to visit. It's really nice to read that my gluten sensitivity hasn't ruled it out. Maybe I'll get to the land of Luis Suarez yet!
    • I know this post is a year ago... however it is still on the first page of the travel section!  I am from Uruguay, (South America) and I can answer this question for people that may look at it in the future. As a South American -  I can say that the cuisine varies greatly.  In cities, you shouldn't have any more than the normal amount of difficulty finding food.  For example, in Montevideo, the city I am from, you'll have no problem finding dedicated entire Celiac stores.  Meat is a large part of restaurant menus, so parilladas (similar in theory to steakhouses, would be very easy to navigate).  Uruguayans do eat a lot of pastries, and just like in the states... Most mainstream bakeries are not gluten free, but like I mentioned there are places that specialize.  In Uruguay, there is knowledge of Celiac and a large health awareness.  Some of the foods can be costly, cost of living in general is not low. In large swaths of South America, the foods you mentioned - Potatoes, rice, meat, etc are abundant, as are fresh fruits and veggies.  Avoiding corn does make it tricky.  Peru can be a great place for non-gluten eaters. Peru uses very little gluten (they are the original quinoa eaters) but there is a lot of corn in the diet (and since you are corn sensitive, that would be a food you would need to navigate). Latin America spread over two continents! In this area you will find a great variety in cultures, cuisines, and knowledge of celiac.  There is no reason why If you want to experience Latin America, that you have to rule out an entire region of the world because of Celiac.  Navigating it will be different, but it is doable!
    • Recently diagnosed last week does the pain ever get better??
    • George, i am sorry that you are not feeling well!  ☹️  I am not a doctor, but just trying out drugs to stop your symptoms just seems like a band aid  approach.  It sounds like he suspects IBS which is really, in my opinion, "I be stumped".  Has inflammatory bowel disorder (IBD) (more lovely autoimmune disorders) been ruled out?  This includes both Crohn's and Colitis.  My niece was diagnosed with Crohn's finally with a pill camera after all other tests were given.  The damage was not within reach of any scope.  I am just throwing out suggestions.  Hopefully, you and your doctor will figure it out soon!  
    • Celiac disease is an autoimmune disease that happens to have a known trigger -- gluten.  Flare-ups develop  (antibodies) causing damage. Not just in the small intestine, but systemically.  One gluten exposure can cause antibodies to increase for days or months!   Antibodies are being measured during the celiac blood tests.   If there is no gluten exposure, there will be no antibodies.  These antibodies can come down in some people in as little as two weeks.  Recommendations require gluten 2 to 4 weeks daily for the biopsies taken via endoscopy in order to be sure to catch damage, but 8 to 12 weeks for the blood tests.   The endoscopy is considered the "gold standard" in helping to diagnose celiac disease, but there are other things that can damage the small intestine.  So, the blood test helps solidify the diagnosis.   So, if you want a good result on your endoscopy, you need to be eating gluten daily for two week prior at a minimum.  I know it is tough and you are feeling sick.  Wish there was a better way to catch active celiac disease.    
  • Upcoming Events