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Positive Test 21

kt2tk

By kt2tk
in Coping with Celiac Disease

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kt2tk Newbie
kt2tk
Posted

I have just had the results over the phone to my blood test, have to wait to see a doctor, but was told it was positive 21, to me that means I have it but maybe mild, does anyone know, also before my test I had been mainly gluten free. Would just like to feel normal again and eat what I should.

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ang1e0251 Contributor
ang1e0251
Posted

The way I understand it there is no mild or strong, you just have it like being pregnant or not. I'm not sure there is any distinction between the test numbers and the amount of damage to your system.

I'm glad you're getting a dx. That should answer a lot of questions for you.

wschmucks Contributor
wschmucks
Posted

Mine was 20 and I wasnt eating very much gluten at that point. the blood tests are an indication...I followed up with endoscopy and was confirmed Celiac. You should have a biopsy to see what it looks like (dont got gluten free until AFTER the endoscopy-- you need the Celiac to be full blown and 100% present otherwise you might miss the diagnosis). Good luck

kt2tk Newbie
kt2tk
Posted
  • Author

Thanks for the replies, I had an colonoscopy about 6 weeks ago, they took 7 biopsy's but were looking for cancer, thankfully the results came back with no cancer present, but the person doing the colonoscopy thought I should get the blood test, I don't go back to the hospital till the end of May, so had the blood test done as advised, not sure what it means though and can't get an appointment till next week with my doctor, also with the blood test they were checking if there was food I should not eat, that was 7 weeks ago and still not back, I am lucky as I don't feel to bad, but would like to feel better.

ang1e0251 Contributor
ang1e0251
Posted

Thanks for the replies, I had an colonoscopy about 6 weeks ago, they took 7 biopsy's but were looking for cancer, thankfully the results came back with no cancer present, but the person doing the colonoscopy thought I should get the blood test, I don't go back to the hospital till the end of May, so had the blood test done as advised, not sure what it means though and can't get an appointment till next week with my doctor, also with the blood test they were checking if there was food I should not eat, that was 7 weeks ago and still not back, I am lucky as I don't feel to bad, but would like to feel better.

Your colonoscopy cannot show celiac disease. Are you scheduled for an endoscopy? That's the way to biopsy for it. And she's right, you have to keep eating gluten for it. Make sure you are scheduled for the correct tests.

  • 2 weeks later...
kt2tk Newbie
kt2tk
Posted
  • Author
Thanks for the replies, I had an colonoscopy about 6 weeks ago, they took 7 biopsy's but were looking for cancer, thankfully the results came back with no cancer present, but the person doing the colonoscopy thought I should get the blood test, I don't go back to the hospital till the end of May, so had the blood test done as advised, not sure what it means though and can't get an appointment till next week with my doctor, also with the blood test they were checking if there was food I should not eat, that was 7 weeks ago and still not back, I am lucky as I don't feel to bad, but would like to feel better.

Your colonoscopy cannot show celiac disease. Are you scheduled for an endoscopy? That's the way to biopsy for it. And she's right, you have to keep eating gluten for it. Make sure you are scheduled for the correct tests.

My blood test were back with my local doctor, he said it reads that I have celiacs, but really I don't think he understood the results apart from the anti bodies for gluton, it was .37 for eggs, wheat, soya and another 2 which I really can't remember, but he seemed to think it was just the gluton, so really not much better of, he said to avoid gluton till I see the specalist at the end of May, Thanks for replys, its nice to know I am not on my own

  • 2 months later...
kt2tk Newbie
kt2tk
Posted
  • Author
My blood test were back with my local doctor, he said it reads that I have celiacs, but really I don't think he understood the results apart from the anti bodies for gluton, it was .37 for eggs, wheat, soya and another 2 which I really can't remember, but he seemed to think it was just the gluton, so really not much better of, he said to avoid gluton till I see the specalist at the end of May, Thanks for replys, its nice to know I am not on my own

Now have to have endoscopy on 14th July, but because I was told to stop taking Gluten I am worried about how accruate the biopsy will be as I will only have been having gluten again for a total of 4 wks when I have it done, I am now suffering again as well, I tried to postpone it but the doctor wants me to get back to gluten-free as soon as poss, its such a pain, but I hope to be sorted soon.

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ravenwoodglass Mentor
ravenwoodglass
Posted
Now have to have endoscopy on 14th July, but because I was told to stop taking Gluten I am worried about how accruate the biopsy will be as I will only have been having gluten again for a total of 4 wks when I have it done, I am now suffering again as well, I tried to postpone it but the doctor wants me to get back to gluten-free as soon as poss, its such a pain, but I hope to be sorted soon.

You have to stay on gluten until the biopsy, however if you had eliminated gluten and then your symptoms become severe again after you added it back in that is also diagnostic. The choice of whether to continue on the gluten is your choice. With a postive blood test and a reaction to adding gluten back in that is pretty diagnostic in itself.

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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.
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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
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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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