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

Blood Tests For Celiac

blissfully-unaware

Recommended Posts

blissfully-unaware Rookie
blissfully-unaware
Posted

Hi

How many of you have gotten the celiac blood tests done again after being gluten free for 6 months (or a year)? My doctor hasn't said anything on this, but I've noticed that some of the forum members have done the tests again. So I'm wondering if it's necessary?

Thanks!

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

Celiac.com Sponsor (A8-M):


WinterSong Community Regular
WinterSong
Posted

My doctor says that it's necessary, and I agree, because it shows your progress. If your levels don't go down enough or don't change it's a good indication that gluten is somehow sneaking it's way into your diet. For me it's important, because I want to make sure I'm doing it right and that all of my efforts are making a difference.

Kim69 Apprentice
Kim69
Posted

I agree. It's good to get your blood retested to show a trend towards normal levels. I was retested after about four months because I insisted (I am an engineer and like to see trends). It helped me feel I was doing the right thing because the levels were changing in the right direction.

JonnyD Rookie
JonnyD
Posted

I've been gluten-free for about 2.5 months and plan to have my celiac levels tested again around the six month level. I also had high cholesterol so I'll get that rechecked then too. Since they're drawing blood, I'm going to have my vitamin levels checked, CBC and whatever else the doc will order. I haven't gone to a nutritionist so I'm waiting to see if it's even necessary. Mostly, I want to see how I'm doing on my own after a reasonable amount of time and then seek help in the areas I need to after that.

blissfully-unaware Rookie
blissfully-unaware
Posted
  • Author

Thanks JessicaNYC, Kim69 and jdrexler for your replies. I'll speak to my doctor about doing the tests again in my next appointment. I also want to know how I've been doing - I'm 99.9% gluten free and I keep wondering if that 0.1% (possible cross contamination) is going to show in the tests or not. I'm lucky that I don't get any symptoms if I've accidently consumed a crumb of gluten, but the downside is that I don't know when there's cross contamination and how much more careful I have to be!

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. dixonpete
      0

      Hookworm load planner

    2. 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.
    3. 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...
    4. 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...
    5. 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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,090
    • Most Online (within 30 mins)
      7,748
    Jamie B
    Newest Member
    Jamie B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • miguel54b
      Body dysmorphia experience

      By miguel54b · Posted

      Body dysmorphia experience. When I was at the worst of my gluten problem I use to get chronic constipation; I would spend long time sitting on the toilet. One day as I was tired of sitting, I rested my head on my hands and my elbows on my knees, as soon as I felt the pressure of my elbows on my knees the perception of my body changed to that of a tarantula; I visualized and it felt real. The perception went away as soon as I removed the pressure on my knees, I deducted that the pressure of my elbows on the knees caused the sensation, so I repeated the position and the sensation of having the body of a tarantula happened each time. I have not had that experience since then because I started a gluten-free diet short after. I wonder if those people that look distorted to themselves in the mirror could have something similar but with the responsible sensory contacts located on their feet. I want to document this experience because it might help some research or others, it sounds crazy but I feel the right thing to do is to share it.    
    • 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.
×
×
  • 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.