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

Confused About Borderline Test Result

samuella

Recommended Posts

samuella Apprentice
samuella
Posted

I was diagnosed with celiac about four months ago via a positive skin biopsy for DH and a positive ttg blood test (over 100). I immediately went gluten free. I just had a follow-up ttg test and the results were borderline, 15.5. Obviously a LOT lower than it was, but still not *quite* negative. I also haven't noticed much change in digestive symptoms - hardly any at all, in fact. (And my DH was gone before I went gluten-free.) We did the test so soon because I haven't noticed much change, to see if my levels were still up - my GI said he'd expect levels to be at a negative level after a few months gluten-free and if they weren't then I might be getting glutened somehow. I only got to see my GP for the results so haven't had a chance to talk to my GI (and won't for a while) and she wasn't sure how to interpret it - she said it could just be I need more time for my levels to get all the way to normal.

So am I getting glutened somehow, just a little but enough to keep my results slightly high and keep my symptoms from going away, or do I just need more time to heal?

(I was diagnosed with IBS about 12 years ago so it's possible that I have celiac and IBS, but I was rather hoping for just one, please and thank you! But I know a lot of people with DH don't have digestive symptoms, so maybe my digestive symptoms are IBS after all?)

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

Celiac.com Sponsor (A8-M):


Bubba's Mom Enthusiast
Bubba's Mom
Posted

I think IBS is more of a symptom of unknown cause rather than a disease? It could be an intollerance to another food or additive? MSG causes me those crazy IBS symptoms.

It's possible you are still getting a bit of gluten somewhere? Did you replace your toaster, any scratched cookware, colander, tooth brush, wipe down the keys on your phone and keyboard or laptop? Are you still using the same cutting board you may have used for cutting bread or pizza, or meats with gluten seasoning?

Have you checked the spices and condiments you use..salad dressings?

I can't speak to the question of how long it takes for blood work to come back absolutely normal. Maybe someone that's been retested that soon after initial Dx could answer that? Your levels could be the "norm" for that time frame AND everyone's body heals at different rates, amount of damage to your system may enter in etc?

This seems to be a "learn as go" condition? Most Dr.s are not educated in diagnosing and treating Celiac. My own GI specialist couldn't answer a lot of the questions I had when I went in to recieve my Dx results. :blink:

Good luck to you and wishing you a speedy recovery.

beebs Enthusiast
beebs
Posted

Dom't forget to check lip gloss, liptstick, chewing gum, breath mints etc - these are all the things that caught me out!

mushroom Proficient
mushroom
Posted

If you are living in a household with gluten eaters, the possibility for cross-contamination is very high.

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. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    2. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results. Thank you
    3. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to...
    4. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response.
    5. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,834
    • Most Online (within 30 mins)
      7,748
    SamAlvi
    Newest Member
    SamAlvi
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • 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.