Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

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:

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
      104,352
    • Total Posts
      920,503
  • Topics

  • Posts

    • I already did. Thats how i found the place. Its amazing to actually go to a restraunt again.
    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,416
    • Most Online
      1,763

    Newest Member
    djs2117
    Joined