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

  • 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. Scott Adams
      - Scott Adams replied to cristiana's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      British Coeliacs: Marks and Spencer's have launched a Gluten Free Colin the Caterpillar Cake.

      Are you trying to make us in the USA jealous? 😉
    2. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free g...
    3. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Second chance

      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable p...
    4. Scott Adams
      - Scott Adams replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Schar's products contain wheat!

      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and ...
    5. Scott Adams
      0

      Fluffy Coconut Banana Pancake—Baked, Gluten-Free, and Family-Style

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,602
    • Most Online (within 30 mins)
      7,748
    Dale S
    Newest Member
    Dale S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      British Coeliacs: Marks and Spencer's have launched a Gluten Free Colin the Caterpillar Cake.

      By Scott Adams · Posted

      Are you trying to make us in the USA jealous? 😉
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      Second chance

      By Scott Adams · Posted

      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      Schar's products contain wheat!

      By Scott Adams · Posted

      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
    • elisejunker44
      Schar's products contain wheat!

      By elisejunker44 · Posted

      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free wheat', but not me. I strongly feel that the labeling for these wheat containing products should be clearly labeled on the front, with prehaps a different color and not using the 'no gluten symbol on the front. The products are not inexpensive, and also dangerous for my health!
×
×
  • 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.