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

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

  • 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
      21

      My journey is it gluten or fiber?

      I take both Benfotiamine and TTFD. You might want to start with the Benfotiamine for a few days and then add in the TTFD. You can look for NeuroMag (Magnesium Threonate). A magnesium glycinate is fine, too. Doctor's Best is a good brand. Don't take more than 300mg total per day of magnesium or it may have a laxative effect. Be sure...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

      Life Extension Benfotiamine with Thiamine has 100MG of Ben and 25 of Thia..... Do you think this is the one I should take or Objective Nutrients Thiamax (TTFD) which has 100MG Thiamine. How much magnesium should I look for? I take the womens 50+ multivitamin since consumerlabs stated and tested that it has the right amount of vitamins and not too much for...
    3. Oliverg
      - Oliverg posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Glutened

      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar. 2 hours later I was throwing up violently on my hands and knees over the loo. .horrendous stomach pains, My hair was wet fro...
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

      Yes, do take your B Complex with Benfotiamine or Thiamax. Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day. Taking them too close to bedtime can keep you too energetic to go to sleep. The Life Extension Benfotiamine with Thiamine is Benfotiamine and...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,768
    • Most Online (within 30 mins)
      7,748
    Cora Pifer
    Newest Member
    Cora Pifer
    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

      I take both Benfotiamine and TTFD.   You might want to start with the Benfotiamine for a few days and then add in the TTFD.   You can look for NeuroMag (Magnesium Threonate).  A magnesium glycinate is fine, too.  Doctor's Best is a good brand.  Don't take more than 300mg total per day of magnesium or it may have a laxative effect.   Be sure to take the B Complex.  The Benfotiamine and TTFD will need the other B vitamins.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Life Extension Benfotiamine with Thiamine has 100MG of Ben and 25 of Thia..... Do you think this is the one I should take or Objective Nutrients Thiamax (TTFD) which has 100MG Thiamine. How much magnesium should I look for? I take the womens 50+ multivitamin since consumerlabs stated and tested that it has the right amount of vitamins and not too much for men and doesn't have BHT which has shown to cause liver cancer in animals. I was never big with multivitamins as well as doctors I just read when I was first going gluten free to take a multi but I think I will stop them and work on trying the super B Thia and Ben, Mag.  
    • Oliverg
      Glutened

      By Oliverg · Posted

      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar.   2 hours later I was throwing up violently on my hands and knees over the loo.  .horrendous stomach pains,  My hair was wet from sweat every part of my body was wet. What an awful experience, just had a bad headache today  fortunately.    Is their any products/pills anyone takes if they have realised they have just been glutened to make the symptoms a little less worse.  thanks  
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      Yes, do take your B Complex with Benfotiamine or Thiamax.  Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day.  Taking them too close to bedtime can keep you too energetic to go to sleep.   The Life Extension Benfotiamine with Thiamine is Benfotiamine and Thiamine Hydrochloride, another form of thiamine the body likes.  The Thiamine HCl just helps the Benfotiamine work better.   Read the label for how many milligrams are in them.  The Mega Benfotiamine is 250 mgs.  Another Benfothiamine has 100 mgs.  You might want to start with the 100 mg.    I like to take Thiamax in the morning with a B Complex at breakfast.  I take the Benfotiamine with another meal.  You can take your multivitamin with Benfotiamine at lunch.   Add a magnesium supplement, too.  Thiamine needs magnesium to make some important enzymes.  Life Extension makes Neuro-Mag, Magnesium Threonate, which is really beneficial.  (Don't take Magnesium Oxide.  It's not absorbed well, instead it pulls water into the digestive tract and is used to relieve constipation.)  I'm not a big fan of multivitamins because they don't always dissolve well in our intestines, and give people a false sense of security.  (There's videos on how to test how well your multivitamin dissolves.).  Multivitamins don't prevent deficiencies and aren't strong enough to correct deficiencies.   I'm happy you are trying Thiamax and Benfotiamine!  Keep us posted on your progress!  I'm happy to answer any questions you may have.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
×
×
  • 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.