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

Now What Do I Do?


jcski

Recommended Posts

jcski Newbie

Hi I was just recently diagnosed with Celiac, I've had two surgeries in the last year Ulnar Nerve Replacement and just two weeks ago gallbladder not for gull stones but because it was inflamed and functioning at 13% which is actually how I found out I had Celiac's. I've been following the Gluten Free Diet now for a month and feel a little better but still a slow recovery. My question is now that I know, how do I find out what Vitamins I'm deficient in do I go back to the Gastro Doctor and than what's the follow up do I get tested again after a certain amount of time? Also now that I've caught the celiac does this mean it will eliminate the other potential issues if I stay on a strict diet? Any help would be greatly appreciated.


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

Your regular Dr. can test your vitamin levels.

Celiacs are often deficient in the fat soluble vitamins A,E,D,K but there are others like calcium, magnesium, zinc, and iron, and the B vitamins especially B 12 and folic acid.

You can do a follow up blood panel to be sure your antibodies are down. Not everyone does this but some do.

The longer your are gluten free the less risk of long term side effects of gluten, but it is important to watch for autoimmune symptoms since secondary autoimmune disease goes along with Celiac very commonly.

You should have a full thyroid panel done since Hashimoto's and Graves are two conditions closely associated with Celiac disease. Thyroid problems are very common.

Chopper Apprentice

You should have a full thyroid panel done since Hashimoto's and Graves are two conditions closely associated with Celiac disease. Thyroid problems are very common.

I was just diagnosed yesterday with autoimmune hypothyroidism and limited scleroderma. In my online searches it seems these commonly occur in celiacs. My gallbladder was my first symptom as well, followed by gastroparesis and gastritis. I didn't know until yesterday all this could be connected. I think there needs to be even more awareness in this area. I wish you well!

Marilyn R Community Regular

Hi I was just recently diagnosed with Celiac, I've had two surgeries in the last year Ulnar Nerve Replacement and just two weeks ago gallbladder not for gull stones but because it was inflamed and functioning at 13% which is actually how I found out I had Celiac's. I've been following the Gluten Free Diet now for a month and feel a little better but still a slow recovery. My question is now that I know, how do I find out what Vitamins I'm deficient in do I go back to the Gastro Doctor and than what's the follow up do I get tested again after a certain amount of time? Also now that I've caught the celiac does this mean it will eliminate the other potential issues if I stay on a strict diet? Any help would be greatly appreciated.

I finally found a good Multi-Vitamin with Minerals that I can tolerate. It must be gluten-free/Soy Free and Dairy Free because I'm super sensitive. I got them at a health food store: Vita Logic Daily Extra. And I haven't had a problem with Citracal either, which is what my rheumy recommended for Calcium and vitamin D. I tried to handle all of my daily nutrition needs via food intake for the first gluten-free year, but I failed.

(I turned up deficient in Vitamin D even though I live in the sub-tropics and spend quite a bit of time outdoors on a daily basis, and have Osteopenia.

I know a doctor who was shocked that her brother had severe osteoporosis at 40 years who was diagnosed with celiac disease and otherwise asymptomatic.

Now that you know, please know you can live a really long, good and normal life even though you have celiac disease. You are preventing more complications and diseases. My mother lived to 87 years old, and she had it. I think my maternal Grandfather had it and died at the age of 92.

Recovery takes time, and you may discover some new food intolerances. Certain food proteins are similar in structure to gluten, and your autoimmune system may start to attack them. (Common ones are dairy, soy, corn, nightshade family vegetables, egg, legumes.) Since you asked for advice, my top advice is to try not to compensate the lack of gluten for other foods you love best. Try to mix your protein sources up over the course of a few days.

You will start feeling better! Some of the malaise you're feeling can be attributed to withdrawal. I wish you the best ... you've been through so much already, and I know you're going to feel better! :)

And welcome to the forum. You'll learn so much here...

Again, wish you well.

goodnews Apprentice

Hi I was just recently diagnosed with Celiac, I've had two surgeries in the last year Ulnar Nerve Replacement and just two weeks ago gallbladder not for gull stones but because it was inflamed and functioning at 13% which is actually how I found out I had Celiac's. I've been following the Gluten Free Diet now for a month and feel a little better but still a slow recovery. My question is now that I know, how do I find out what Vitamins I'm deficient in do I go back to the Gastro Doctor and than what's the follow up do I get tested again after a certain amount of time? Also now that I've caught the celiac does this mean it will eliminate the other potential issues if I stay on a strict diet? Any help would be greatly appreciated.

I can't help you with your question as I am pretty new to this and don't really know...but I do have a question for you. You mentioned that you found out you had celiac because your gallbladder was inflamed and functioning at 13%. I am just wondering how they determined it was celiac. I am wondering because they were testing me for celiac through a gene test after a biopsy that looked like it, and then they did a the HIDA scan today and said my gallbladder is inflamed and functioning at 23% and said I had to get it taken out. I am just curious how they would know whether it is form celiac or not. Thanks in advance. :)

deezer Apprentice

I can't help you with your question as I am pretty new to this and don't really know...but I do have a question for you. You mentioned that you found out you had celiac because your gallbladder was inflamed and functioning at 13%. I am just wondering how they determined it was celiac. I am wondering because they were testing me for celiac through a gene test after a biopsy that looked like it, and then they did a the HIDA scan today and said my gallbladder is inflamed and functioning at 23% and said I had to get it taken out. I am just curious how they would know whether it is form celiac or not. Thanks in advance. :)

I'm not sure how they would know for sure that Celiac is the cause for Gallbladder problems, but if you have Celiac there is a good chance that it is related due to all of the inflammation in your gut.

deezer Apprentice

Your regular Dr. can test your vitamin levels.

Celiacs are often deficient in the fat soluble vitamins A,E,D,K but there are others like calcium, magnesium, zinc, and iron, and the B vitamins especially B 12 and folic acid.

You can do a follow up blood panel to be sure your antibodies are down. Not everyone does this but some do.

The longer your are gluten free the less risk of long term side effects of gluten, but it is important to watch for autoimmune symptoms since secondary autoimmune disease goes along with Celiac very commonly.

You should have a full thyroid panel done since Hashimoto's and Graves are two conditions closely associated with Celiac disease. Thyroid problems are very common.

What are all of the tests that should be run for follow-up & upon initial diagnosis in addition to the Thyroid Panel?


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



Celiac.com Sponsor (A8-M):



jcski Newbie

Thanks everyone, this was so helpful and made me feel so much better and not so alone. To the person who asked about the gallbladder they didn't say it was from celiac but that's how I found out as I researched I did see that a lot of people celiac do have gallbladder problems in fact is seems we have all sorts of problems. First they did a biopsy because they thought it was ulcers when those results came back the test showed signs of celiac than they did the bloodwork and confirmed it. Looking back this makes sense to me since I never really liked pasta or bread because they made me sick I guess for me it was more like, oh that makes sense.

I guess I'm mostly tired and maybe the celiac is compounding the trying to recover from surgery but great news I had my first day where I felt like getting out the bed and didn't sleep all day.

Thanks so much everyone.

Archived

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

  • 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. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    4. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,483
    • Most Online (within 30 mins)
      7,748

    AML2013
    Newest Member
    AML2013
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.