Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

endoscopy shows mild damage + high tTG IgG

donuthole
 Share

Recommended Posts

donuthole Rookie
donuthole
Posted

Hi folks,

I managed to get an endoscopy (!) in these hard times after some setbacks due to the covid situation. I'm struggling to understand my results. Is there any way to tell if this is "early celiac" or "non-celiac gluten sensitivity"? (I'm ~30 and I got some sort of virus a year ago and was really sick with diarrhea and gastritis, I suspect that whatever I have has its origins there since I had zero problems before that; I'm now finally on a gluten-free diet and it has been working wonders for me.)

- endoscopy: mild non-specific inflammation in the small intestine (explanation says it could be NSAIDs, which I don't take, or early celiac), more precisely the summary reads: "duodenal mucosa with a patchy mild surface intraepithelial lymphocytosis, otherwise no significant histopathological abnormality"

- IgA: 383 (high) [lab's range: 87-352]

- tTG IgA: 3 [where 4-10 is a weak positive]

- tTG IgG: 10 [where 6-9 is a weak positive]

- EMA: negative

- probably relevant to mention: they also found thyroid antibodies (antiTPO, presumably Hashimoto's some day soon) and the diagnosis journey started when I was found to be iron deficient back in July

Thanks! I'm really happy to see that there is such a big community of people out there with similar issues.

 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

To me, a non-doctor lay expert, it looks like you've got celiac disease. Thyroid issues are quite common in celiacs, and iron deficiency anemia is very common. The blood tests and biopsy seem to support this.

Scott Adams Grand Master
Scott Adams
Posted

PS - Can I assume that your doctor will interpret these test results for you, and diagnose you? Please let us know.

donuthole Rookie
donuthole
Posted
  • Author

Yeah, I have a follow up in two weeks, I'll let you know what the "official" position is.

Scott Adams Grand Master
Scott Adams
Posted

The relief of symptoms on a gluten-free diet would be the ultimate confirmation, but technically you're supposed to wait until all tests are completed. I am not sure what further tests they would want to do at this point, but you may want to wait until they give you the green light to go gluten-free.

Jan Meindfak Apprentice
Jan Meindfak
Posted

Doesn't look like coeliac disease to me much - at least from those findings. Or could suggest early stage of the disease. There's a chance your doc will not give a diagnosis based on them. IgA is often below normal rather than above in celiac disease patients. But what's more important is that you see improvement on diet - in the meantime while waiting for your appointment you can do DGP test in both IgA and IgG classes, and a genetic test (which can only rule celiac disease out). 

Good luck! 

Scott Adams Grand Master
Scott Adams
Posted

I agree with Jan here, IF you are only looking at your test results, which are not definitive. However, when you include the original poster's statement of "I'm now finally on a gluten-free diet and it has been working wonders for me," along with the test results, it looks, at the very least, like gluten sensitivity. The treatment for celiac disease and gluten sensitivity are the same--a gluten-free diet for life.

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

Celiac.com Sponsor (A8-M):


donuthole Rookie
donuthole
Posted
  • Author

Thanks, yeah, I was just fishing for some more information with respect to the two options given my blood/endoscopy results.

The doc had recommended I go on a gluten-free diet till our next appointment. I did. On day 7 when I woke up the symptoms were suddenly just gone, for the first time (my biggest symptoms have been fatigue and tingling/heaviness/numbness/dull ache in arms/legs). Then a week later my partner did some gluten-free baking and I can only guess that even though we had cleared out all the obvious gluten items, some flour must have been present somewhere (either on the old baking utensils/trays/bowls or in some of the opened items, like the baking soda or the muffin cups box). The next day when I woke up I noticed the symptoms again and they've continued since. I'm hoping for some relief again on day 7.

  • 2 weeks later...
donuthole Rookie
donuthole
Posted
  • Author

Update:

The diagnosis was indeed celiac disease. (I also specifically asked whether he had considered distinguishing between celiac disease and non-celiac gluten sensitivity.)

Jan Meindfak Apprentice
Jan Meindfak
Posted

I'm a lousy doctor apparently! 

Anyway, welcome to the club ;)

donuthole Rookie
donuthole
Posted
  • Author

Honestly, I was a bit surprised because I thought the tTG IgG test was not very sensitive in the context of normal or high IgA's, so I expected to be diagnosed with NCGS. In any case, as Scott says it doesn't matter for practical purposes. I'll mention something else here for the records in case someone finds this useful some day: I had a celiac panel ordered by my endocrinologist 1.5 months before the GI doctor's. The endo's panel did not include the tTG IgG test, unfortunately, but it had all the rest. The interesting difference was that the tTG IgA was "<2" back then (the IgA's were 380, so high like now, same lab) -- so tTG IgA had gone up by 1 or more U/ml in that time frame. Maybe that's because I started making sure to eat gluten daily after the endo's results in order to prep for the endoscopy (ordered for the iron deficiency). I had been eating gluten products only semi-regularly before. I think I just naturally started choosing other things over bread and pasta because it made me tired (I just thought that was normal... 😞).

Scott Adams Grand Master
Scott Adams
Posted

It can seem like a curse at first, but knowing about this so you can properly deal with it is actually a blessing. This article might be helpful:

 

donuthole Rookie
donuthole
Posted
  • Author
22 hours ago, Scott Adams said:

It can seem like a curse at first, but knowing about this so you can properly deal with it is actually a blessing. This article might be helpful:

 

Thank you for the support and for this wonderful website/forum ❤️

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,916
    • Most Online (within 30 mins)
      7,748
    TrevorT
    Newest Member
    TrevorT
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: 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. Symptoms disappeared. And 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)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
    • Jack Common
      What should I do with these test results?

      By Jack Common · Posted

      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... 
    • Wheatwacked
      Anyone else with very high HDL?

      By Wheatwacked · Posted

      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      Anyone else with very high HDL?

      By plumbago · Posted

      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Anyone else with very high HDL?

      By trents · Posted

      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
×
×
  • Create New...