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

Recommended Posts

Guest jeepgirl

: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

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

: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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,828
    • Most Online (within 30 mins)
      7,748

    ABC reno
    Newest Member
    ABC reno
    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

    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
×
×
  • 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.