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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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    • knitty kitty
      High DGP-A with normal IGA

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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