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

What should I do with these test results?

Jack Common
 Share

Recommended Posts

Jack Common Apprentice
Jack Common
Posted
  • Author
19 hours ago, knitty kitty said:

@Jack Common,

You could do a DNA test to see if you have any of the known genes for Celiac Disease.  If you don't have any genes for celiac disease, look to another source for your health problems.  If you do have celiac disease genes and have improvement on the gluten free diet, you probably have active Celiac.  Further testing would be beneficial.

Keep in mind that different gluten containing breads have different amounts of gluten.  Think thick chewy pizza crust and artisan breads, and whole wheat breads for the gluten challenge.  Cookies and pastries do not contain as much gluten.  

Since your blood tests were inconclusive, continuing with the gluten challenge may be needed to provoke a stronger autoimmune reaction sufficient for antibodies to get into the blood stream.  

 

 

I haven't seen any information there are other genes which trents wrote but what if I spend money to do this test and the results show I have these genes. It will mean nothing. I can have these genes and not have celiac disease if I know it right.

Because biopsy is not available, unfortunately, the most reliable methods are blood tests, in my opinion. So I'm gonna eat gluten for another two months and then do the test again. It will be 12 weeks eating food with gluten so some symptoms might appear. Now, I don't have any except fogginess but I'm a software developer so it could be normal for me.

Talking about how much food containing gluten to eat, I'm eating 6 slices of wheat bread per day (each slice weighs around 35 grams). I think it's much more than other people eat doing a gluten challenge.

Before a gluten free diet I had symptoms like some food intolerance, diarrhea, bloating, belching. However, I also had giardiasis and after treating it I started a gluten free diet so it's unclear whether I had this symptoms because of eliminating gluten or this parasite. The symptoms for both are very similar. So I think it was this parasite because two years ago and before I didn't have these symptoms and I always ate gluten freely.

Am I thinking okay or should I consider/do something else?

I appreciate any suggestions.

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Sounds like a good plan, Jack.

Correct about the genes. About 40% of the general population possess the genetic potential to develop celiac disease but only about 1% of the general population actually develops celiac disease. So, genetic testing is used as a rule out measure.

knitty kitty Grand Master
knitty kitty
Posted
(edited)

@Jack Common,

It's possible that your antibiotic for giardiasis has caused thiamine deficiency.  

https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/

And...

Thiamine and benfotiamine: Focus on their therapeutic potential

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/

For clarification, the weight of your slice of bread is not equal to the amount of gluten in it.  

Gluten helps form those big holes in breads, so breads like thick chewy pizza crust and artisan breads contain more gluten than cakes and cookies.  

Edited by knitty kitty
Typo correction
  • 1 month later...
Jack Common Apprentice
Jack Common
Posted
  • Author

My old results (almost a year ago) are:

The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal)

The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal)

Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal)

IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal)

IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal)

Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)

Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)

 

Then I didn't eat gluten for six months and after I started a gluten challenge.

Before the challenge I did some tests.

My results:

The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal))

Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)

 

During the challenge I ate 6 slices of wheat bread.

After the challenge my results are:

The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal)

The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal)

Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal)

Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal)

Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)

 

To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again.

My results I got today are:

The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal)

Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal)

Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)

 

I didn't have any symptoms now except tiredness but I think it's just work.

I'm not IgA deficient as you can see so I don't need to do this Deamidated gliadin peptide IgG test. But I do because it's sometimes not in the normal range.

What do you think this time? I think I don't have celiac disease. But this test... 

trents Grand Master
trents
Posted

I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.

Jack Common Apprentice
Jack Common
Posted
  • Author

What can I do next? Just continue getting gluten from food and do the tests again after some time like 6 months while observing symptoms if any? I read somewhere if a person has NCGS he shouldn't have any blood tests high. So I'm worry.

trents Grand Master
trents
Posted

The fact is, we know very little about the mechanism of NCGS at this point. We know much more about celiac disease. Some experts believe that NCGS can transition into celiac disease. And I do not agree with what you read about NCGS not producing any elevated antibody tests. IMO, and I have no scientific data to support this, it's just a hunch base on reading many, many forum contributor test result reports, elevated igg antibodies may signal a transition from NCGS to celiac disease. 

But there are other things besides gluten that can cause elevated dgp igg and ttg igg antibody levels. So, yes. I would continue to monitor the situation if I were you and get regular testing. Not necessarily every 6 months but yearly anyway if you can. In the meantime, if you know gluten causes you unwellness, continue to avoid it.

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

Celiac.com Sponsor (A8-M):


  • 3 weeks later...
Jack Common Apprentice
Jack Common
Posted
  • Author

Thank you for your answer.

I read it here: https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/

With the title "What’s the Difference Between Gluten Sensitivity and Celiac Disease?"

trents Grand Master
trents
Posted

From the article you linked: "Currently, there are no recommended methods to test for non-celiac gluten sensitivity." "No recommended methods" is the key phrase here. Just on the anecdotal evidence of reading many posts on this forum, I think we sometimes see some elevated igg test scores with NCGS. They seem to be mildly elevated in these cases, not high high.

knitty kitty Grand Master
knitty kitty
Posted
(edited)

Hello, @Jack Common,

I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis you mentioned in another post.

The giardiasis infection would account for the high Igg results.  Have you been reinfected?

The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.  

https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/

https://hormonesmatter.com/?s=metronidazole

https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/

Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis.

Best wishes.

Edited by knitty kitty
Typo correction

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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 Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.