Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Just Diagnosed

Annek44

By Annek44
in Coping with Celiac Disease

Recommended Posts

Annek44 Newbie
Annek44
Posted

After a month of abdominal pain I went to a gastroenterologist who did blood work as well as an endoscopy. Told me he was testing for celiacs and called me today and confirmed it. Since then I've been trying to do research on Celiacs. It's kinda overwhelming to know I have to give up a lot of my favorite foods but I would rather do so in order to avoid any further complications. Any additional advice would be greatly appreciated!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Here's a good place to start

https://www.celiac.com/forums/topic/91878-newbie-info-101/

  • 4 weeks later...
Dana Leo Newbie
Dana Leo
Posted

I am in the same boat!! I can't believe the relief I'm feeling after only a week of going gluten-free!! No more abdominal bloat or stomach aches!!! Good luck to you!!

1desperateladysaved Proficient
1desperateladysaved
Posted

Welcome AnnK,

 

It can be overwhelming at first, but the payoff is good!  Hang in there, learn (as you are trying to do) and walk and you will get somewhere.  Most of us spent some time crying in the grocery store.  There are many foods that are naturally gluten free such as fruits, vegetables, and meats.  Best wishes in healing.

 

Dee

mommyto2kids Collaborator
mommyto2kids
Posted
  • Always read labels and pick up a few good books with words of what to look for. It is hard at first. Stay strong and learn about cross contamination. You will have to teach the people you live with and make some changes in your kitchen. Eating out is now quite hard, but can be done. You may want to skip it for a while. Many people are dairy and soy sensitive as well and may have other issues too. Keep coming here. There is lots of help.
dianey Newbie
dianey
Posted

After being diagnosed with osteoporosis last week, my doctor ordered blood work since I am only 55.  I got a call this week that my celiac profile is positive and I need to see a Gi doc and probably get a biopspy. Only one of the three is positive: Deaminated Gliadin IGg is 120 (0-19 neg). Cannot get appt for several weeks. Is celiac likely? I have had GI symptoms for years but never saw a physician.

Annek44 Newbie
Annek44
Posted
  • Author
After being diagnosed with osteoporosis last week, my doctor ordered blood work since I am only 55.  I got a call this week that my celiac profile is positive and I need to see a Gi doc and probably get a biopspy. Only one of the three is positive: Deaminated Gliadin IGg is 120 (0-19 neg). Cannot get appt for several weeks. Is celiac likely? I have had GI symptoms for years but never saw a physician.[/quote

Hi Dianey,

I was having abdominal pain for over a month and was referred to a gi dr who did took blood to test for Celiacs and also wanted to do a biopsy to make sure. As a result it was positive. If you don't know for sure maybe you should go to a gi dr and let him test. I will tell you the pain has been gone since I have eaten gluten free foods

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

After being diagnosed with osteoporosis last week, my doctor ordered blood work since I am only 55.  I got a call this week that my celiac profile is positive and I need to see a Gi doc and probably get a biopspy. Only one of the three is positive: Deaminated Gliadin IGg is 120 (0-19 neg). Cannot get appt for several weeks. Is celiac likely? I have had GI symptoms for years but never saw a physician.

Welcome to the club!

I only had DGP IGA come up positive. My biopsy result was a Marsh Stage IIIB (moderate to severe damage). My main symptom was anemia, but a few weeks after my diagnosis, I fractured two vertebrae doing nothing! Osteoporosis!

Keep eating gluten until all testing is complete.

Good luck!

SMRI Collaborator
SMRI
Posted

After being diagnosed with osteoporosis last week, my doctor ordered blood work since I am only 55.  I got a call this week that my celiac profile is positive and I need to see a Gi doc and probably get a biopspy. Only one of the three is positive: Deaminated Gliadin IGg is 120 (0-19 neg). Cannot get appt for several weeks. Is celiac likely? I have had GI symptoms for years but never saw a physician.

 

With a number like that, you are Celiac.  Did they run your total IgA level?  If that is low, your IgA tests will not register a positive.  As for the scope, it's a nice back up for the diagnosis but not necessary with a reading that high.

  • 2 weeks later...
hrenee101 Newbie
hrenee101
Posted

I have just recently been diagnosed with Celiac. My blood work came back positive, but my doctor still wants me to have the biopsy to check and see how much damage has been done, since I have so many symptoms. Its difficult and nice and finding out that there was a reason I have been having issues since i was a child and now knowing that I was not crazy. 

cchavezpie Newbie
cchavezpie
Posted

I also had the blood tests where only one of the 3 tests came back positive. I had already had an endoscopy but did not have the blood test back in time so did not have a biopsy. There was not any signs of celiac with my endoscope and my villi did not show any signs of issues. So, it is not positive that I have it but Dr wants me to go on a gluten free diet so see if the symptons would subside.

cchavezpie Newbie
cchavezpie
Posted

I have been to the doctor and GI Dr and it is not 100% that I have Celiac. I have been having severe abdominal pains accompanied by excess gas over the last couple years. It is not all the time as I can go months between attacks and then can have a couple with a week.  I have had my gall bladder removed, and upper GI (this was before I had the blood tests) MRI and lots of blood tests. That being said only 1 of the 3 tests came back positive for celiac. Also during the upper GI my Villi looked normal so my Dr did not do a biopsy and he did not have the blood tests results so that was not done. So I really don't know if I have Celiac or not but the Dr wants me to go on a gluten free diet to see if this helps. The problem is my abdominal pains are not all the time. Has anyone else had an experience similar to mine where only one of the tests came back positive but were still diagosed with celiac.

SMRI Collaborator
SMRI
Posted

I have been to the doctor and GI Dr and it is not 100% that I have Celiac. I have been having severe abdominal pains accompanied by excess gas over the last couple years. It is not all the time as I can go months between attacks and then can have a couple with a week.  I have had my gall bladder removed, and upper GI (this was before I had the blood tests) MRI and lots of blood tests. That being said only 1 of the 3 tests came back positive for celiac. Also during the upper GI my Villi looked normal so my Dr did not do a biopsy and he did not have the blood tests results so that was not done. So I really don't know if I have Celiac or not but the Dr wants me to go on a gluten free diet to see if this helps. The problem is my abdominal pains are not all the time. Has anyone else had an experience similar to mine where only one of the tests came back positive but were still diagosed with celiac.

 

What test came back positive and what was your number and the scale used.  You really need to find a different GI dr if he visually inspected your intestines and did not do biopsies.  What was the point of the scope then??  Usually any positive reading on one of the standard Celiac tests means you have Celiac.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,193
    • Most Online (within 30 mins)
      7,748
    Jodidodd
    Newest Member
    Jodidodd
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • WednesdayAddams13
      Alpine Brand Spiced Cider

      By WednesdayAddams13 · Posted

      Hello,   I contacted the makers of Alpine Original Spiced Cider Drink Mix and they sent me this email.....   Subject: [EXTERNAL] Fw: Ref. ID:1335211 Alpine Original Spiced Cider Drink Mix.               On Friday, December 6, 2024, 1:04 PM, Consumer <baking@continentalmills.com> wrote: December 06, 2024   Dear Janie, Thank you for taking the time to contact us regarding our Alpine Original Spiced Cider Drink Mix. We appreciate your interest and are happy to provide you with additional information. This product does not contain gluten. However, it is not manufactured in a gluten free facility. If I can be of further help, please contact me at 1 (800) 457-7744, weekdays 7:00 a.m. to 4:00 p.m. (PT), or visit www.alpinecider.com and select "Contact Us." Sincerely, Kristin Kristin Consumer Relations Specialist Ref # 1335211   I hope this helps everyone.  I am currently looking for a spiced hot apple cider drink and have yet to find one that is not made in a plant that manufactures other gluten products.  It's so frustrating. 
    • trents
      Family education

      By trents · Posted

      @Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.
    • Rogol72
      Family education

      By Rogol72 · Posted

      Hi @trents, You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?".  @sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/ https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.
    • peg
      Supplements for those Diagnosed with Celiac Disease

      By peg · Posted

      Thank you, Scott!  This is just what I needed.  Appreciate your site very much and all of your time and energy that goes into it! Kind Regards, Peg
    • Hopeful1950
      Cycle of dermatitis herpetiformis

      By Hopeful1950 · Posted

      Oh yes.  I would never recommend taking it for an extended period of time.  When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after dermatologist. The fact that it stopped the itch and mostly cleared the rash after about 2 months was diagnostic for him.  I stopped it and have remained strictly gluten-free with very few flares since that time (over 10 years ago).  So the fact that it cleared the rash was diagnostic for me.     
×
×
  • Create New...