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

Retesting Celiac Blood Work?

key

Recommended Posts

key Contributor
key
Posted

I will try and make this as short as possible. When I got tested 18 months ago, I had been gluten free for 6 weeks already. My blood work came back borderline Celiac disease as the GI doctor put it. He wanted me to have the biopsy, but I was scared to start eating gluten again and felt great gluten free. My 2 year old son also has celiac disease.

Some of the things that improved once gluten free, are bone pain, bloating and gas(major improvements), heartburn, anemia, nausea, abdominal pain, etc. (it has been awhile and I can't remember everything).

My IGg was 66, normal was below 20.

My Ttg (the one most specific to celiac) was 16, (abnormal was 18 and up). My GI doctor told me that people that don't have celiac disease, usually have a number of 0.

I have been gluten free for 18 months, but still seem to feel like I am getting gluten from time to time. I don't eat out hardly ever. I try to be very careful. I will get alot better and be fine for a month or two and then it seems like some GI problems will be around. Mainly heartburn and feeling as if I have been gluttened at least every week or two. I went to see the doctor and had my tests redone and all my numbers were completely normal. (different doctor, because we moved).

Anyway, for those of you that were retested after you were gluten free for a year or more, were your numbers completely normal. From what I have read, if you are gluten free, then your numbers should be normal.

I should have an endoscopy done, but everytime I almost do one, my digestive system gets somewhat better.

I think I eat too much dairy and drink too much caffeine, so maybe that is what is causing some of the digestive problems. The problems I am having now are different then before going gluten free.

Sorry this got so long.

THanks,

Monica

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

My bloodwork back in 2004 was over 100. Testing this summer had the number down to 13.

key Contributor
key
Posted
  • Author

Thanks Karen, I feel as if I got really sick after my 3rd son was born. That is when I really started having symptoms of celiac disease. I wasn't sick for years and years. My 3rd son is also the one with Celiac disease and so I found out pretty early.

How are you feeling. Are you still sick? I know you struggle still and hope you are getting along ok. It really stinks having some kind of health problem the majority of the time. I wish I could go back to when I was 27 y.o. I felt great then.

Take care,

Monica

dragonmom Apprentice
dragonmom
Posted

My score was still really high after 1 year, the doctor said to check what I was eating again. I then thought that I might be glutening myself at work, I work in a grocery store and touch bags of flour on a regular basis- made me think anyway. I really thought that I had been really careful in my eating...I'll deep working at it. 116, 20 is normal :blink:

wolfie Enthusiast
wolfie
Posted

I haven't been retested yet...it won't be a year until Jan. But, I wanted to say that I was still getting occasional heartburn until I quit drinking caffeine on a daily basis. Now I can have a latte every so often with no heartburn, but no pop still. Maybe try taking it out of your diet to see if it helps?

AmandaD Community Regular
AmandaD
Posted

My first TTG number was 10.5. (Anything over 7 on my doc's scale was positive). At my recheck my number was down to 2.3.

I feel like I get glutened every once in a while - but I noticed a big difference when I stopped drinking coffee altogether and just stick to tea.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,826
    • Most Online (within 30 mins)
      7,748
    Martis
    Newest Member
    Martis
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Nausea

      By Me,Sue · Posted

      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      @fatjacksonthecat I have been doing some digging about the topic of nicotine and celiac.  I came across many studies that showed that the nicotine patch helped many with long covid and chronic fatigue syndrome.  I have a son who was diagnosed with celiac and his symptoms are severe when he is glutened.  He shows a lot of neurological inflammation and suffered with fatigue, brain fog, depression, anxiety and insomnia. There have been studies revealing that nicotine smoke actually masking celiac symptoms.  I also read that microdosing with a nictoine patch prevents one from addiction.  We are currently trying this out and so far it has lifted the brain fog and helped with anxiety and mood.  One of the studies I have read showed that it's not so much the dose, but the length of time a person is on the patch that showed improvements.  Many showed significant improvement as early as week 3 and continued through week 12.  We are taking 3 day breaks in between to make sure we don't down regulate the nicotine receptors.   How have things been for you?  Are you still chewing nicotine gum?  Perhaps, try the patch?  And how long did it take to ease up on your symptoms when glutened?
    • cristiana
      New here

      By cristiana · Posted

      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
×
×
  • 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.