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. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.