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Now What Do I Do?

jcski

By jcski
in Coping with Celiac Disease

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jcski Newbie
jcski
Posted

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.

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eatmeat4good Enthusiast
eatmeat4good
Posted

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
Chopper
Posted

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
Marilyn R
Posted

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
goodnews
Posted

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
deezer
Posted

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
deezer
Posted

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?

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jcski Newbie
jcski
Posted
  • Author

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.

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