Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newly Cursed (blessed?) By The Sprue

Guest jeepgirl

By Guest jeepgirl
in Coping with Celiac Disease

Recommended Posts

Guest jeepgirl
Guest jeepgirl
Posted

: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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest jhmom
Guest jhmom
Posted

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

Guest jeepgirl
Guest jeepgirl
Posted

: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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      40

      My journey is it gluten or fiber?

      The Benfotiamine and thiamax need magnesium to make life sustaining enzymes. Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible. Yes, take the magnesium at breakfast, too. I take my Benfotiamine and TTFD Thiamax and B Complex at the beginning of breakfast. I take the magnesium after I finish...
    2. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      4

      Severe severe mouth pain

      @knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade. Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice...
    3. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      4

      Severe severe mouth pain

      Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think, I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      40

      My journey is it gluten or fiber?

      The thiamax and benfo I ordered should come tomorrow. I will start Friday ny b complex the benfo and thiamax for breakfast. I haven't ordered magnesium yet. I wanted to start with this first then add magnesium. Should it be fine to take b complex the thia/benfo and eventually magnesium at breakfast together? Thanks
    5. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      40

      My journey is it gluten or fiber?

      What have you taken so far? and when?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,898
    • Most Online (within 30 mins)
      7,748
    Luckycindy
    Newest Member
    Luckycindy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      The Benfotiamine and thiamax need magnesium to make life sustaining enzymes.  Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible.   Yes, take the magnesium at breakfast, too.   I take my Benfotiamine and TTFD Thiamax and B Complex  at the beginning of breakfast.  I take the magnesium after I finish eating breakfast.  Yes, I take NeuroMag.  
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade.  Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice, I will try it all for sure, because everything I have tried OTC has done nothing 
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think,  I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when I thought I had a sinus infection. So I got a z pack. Then I noticed my tongue was coated and it was white except right down the middle which was more brown and crusty, like the corners of my mouth. I also have dry mouth and I went way too long before I started treating it. So then I had some kind of huge pill and Nystatin mouthwash. My mother in law's new husband ( they live upstairs) started complaining of exactly the same symptoms as me. He went to urgent care, they said it wasn't thrush, it was shingles. We both went to our dentist's for cleanings, I don't have insurance so I really couldn't tell they cleaned my teeth at all. But she said my mouth looked good, all cleared up. I had a day and a half of no pain and then it came right back. So I got more pills and miracle mouthwash. There are times it feels like dry socket and times it feels like it's bleeding but it's not. I don't see any gum or facial swelling, I did see a couple of tiny ulcers on my bottom lip, roof of my mouth is still sore, and my tongue and cheeks are still a little coated. I am just at a loss. My mother in law's husband, they  took swabs and called back a week later and said it was a new herpes variant virus that is going around but not contagious. He was cured after a week! And I'm going on 3 months 😭
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      The thiamax and benfo I ordered should come tomorrow. I will start Friday ny b complex the benfo and thiamax for breakfast. I haven't ordered magnesium yet. I wanted to start with this first then add magnesium. Should it be fine to take b complex the thia/benfo and eventually magnesium at breakfast together? Thanks
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      What have you taken so far?  and when?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.