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

Weak +Ve Ttg Anyone? - What Did Your Doctor Say?

The Horticulturalist

Recommended Posts

The Horticulturalist Apprentice
The Horticulturalist
Posted

I posted a query previously in the forum section for kids with celiac forum here.

I called the Celiac Center at the University of Chicago a couple of days ago and they now have a faxed copy of his bloodwork, I'm waiting for a review by their doctor, it's hard to be patient! :)

These are the results for my 6yr old:

Immunoglobulin A 157 (range 87 - 474)

Tissue transglutaminase 4.9 (range <4 negative,4-10 weak +ve,10 and above +ve.

here are my questions:

1) has anyone else had Ttg come back in this 'weak positive' range, and if yes, were you - or your child - referred for endoscopy?

2)If you had a 'weak positive' Ttg did you then go on to have a +ve endoscopy for celiac?

I know everyone's case will be different and my son's results could be quite different to yours, I'm just interested in your stories.

Thanks!

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

Celiac.com Sponsor (A8-M):


pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I posted a query previously in the forum section for kids with celiac forum here.

I called the Celiac Center at the University of Chicago a couple of days ago and they now have a faxed copy of his bloodwork, I'm waiting for a review by their doctor, it's hard to be patient! :)

These are the results for my 6yr old:

Immunoglobulin A 157 (range 87 - 474)

Tissue transglutaminase 4.9 (range <4 negative,4-10 weak +ve,10 and above +ve.

here are my questions:

1) has anyone else had Ttg come back in this 'weak positive' range, and if yes, were you - or your child - referred for endoscopy?

2)If you had a 'weak positive' Ttg did you then go on to have a +ve endoscopy for celiac?

I know everyone's case will be different and my son's results could be quite different to yours, I'm just interested in your stories.

Thanks!

Is this the only testing that they did for Celiac? There are other blood tests that should have been done at the same time, like a DGP or the older gliadin ABS. There are other conditions that can cause a positive tTg, like type I diabetes or autoimmune liver problems. I am suprised given your history of celiac in your family and your son's symptoms that the doc didn't order a more comprehensive panel. :unsure:

Keep me posted on what U of Chicago says. I live in the suburbs of Chicago, and I am considering going there with my 6 year old for Celiac testing once I get my biopsy done.

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

Is this the only testing that they did for Celiac? There are other blood tests that should have been done at the same time, like a DGP or the older gliadin ABS. There are other conditions that can cause a positive tTg, like type I diabetes or autoimmune liver problems. I am suprised given your history of celiac in your family and your son's symptoms that the doc didn't order a more comprehensive panel. :unsure:

Keep me posted on what U of Chicago says. I live in the suburbs of Chicago, and I am considering going there with my 6 year old for Celiac testing once I get my biopsy done.

I don't have a family history of celiac, I may need to get these additional bloods done. I'll see what the Chicago people say.

If I were closer to UOC then I'd absolutely take my son there, the more experienced the gastroenterologists are the better!

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I don't have a family history of celiac, I may need to get these additional bloods done. I'll see what the Chicago people say.

If I were closer to UOC then I'd absolutely take my son there, the more experienced the gastroenterologists are the better!

Sorry, I just re-read you other post....it was a family history of RA not Celiac. I am a bit foggy tonight, as I am currently doing a gluten challenge and I just ate a big bowl of chicken and dumplings. Can you say GLUTEN? :P Oh, how I will miss dumplings..... :(

Yeah, I think I will persue U of C. My current medical group seems to be pretty clueless about Celiac, and I don't want to mess around when it's my little guy's health at stake.

Keep me posted!

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

Sorry, I just re-read you other post....it was a family history of RA not Celiac. I am a bit foggy tonight, as I am currently doing a gluten challenge and I just ate a big bowl of chicken and dumplings. Can you say GLUTEN? :P Oh, how I will miss dumplings..... :(

Yeah, I think I will persue U of C. My current medical group seems to be pretty clueless about Celiac, and I don't want to mess around when it's my little guy's health at stake.

Keep me posted!

Absolutely. I've had the misfortune of having several tests that I now know were useless, but I only found that out recently, and I've been gluten free for a year so an endoscopy is probably not worthwhile for me,

If I need to get an endoscopy for my son then I'll be going out of my way to find someone with experience in diagnosing celiac in kids. My local gastroenterologists were pretty hopeless so I won't be going back there.

October3 Explorer
October3
Posted

I didn't get a chance to read your other post yet as I'm running out the door, but to answer your question here - my son (also 6) had a tTG that was considered moderately elevated (48.8 with a normal range of 0-19.9). The GI we were working with (who, as an aside, I think knows his stuff - we go to one of the top Children's Hospitals in the country and he is the director of the GI program) said there was only a 15% chance that the endoscopy would show anything useful even with the elevated tTG. As it turned out, my son's biopsies were negative - no indication of anything at all on both endoscopy and colonoscopy. We were tentatively planning a colonoscopy anyway even before the blood tests came back because we were looking for a cause for his recurrent anemia. But with the elevated tTG the GI said the endoscopy was a must, the colonoscopy was optional. We opted for both.

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

I didn't get a chance to read your other post yet as I'm running out the door, but to answer your question here - my son (also 6) had a tTG that was considered moderately elevated (48.8 with a normal range of 0-19.9). The GI we were working with (who, as an aside, I think knows his stuff - we go to one of the top Children's Hospitals in the country and he is the director of the GI program) said there was only a 15% chance that the endoscopy would show anything useful even with the elevated tTG. As it turned out, my son's biopsies were negative - no indication of anything at all on both endoscopy and colonoscopy. We were tentatively planning a colonoscopy anyway even before the blood tests came back because we were looking for a cause for his recurrent anemia. But with the elevated tTG the GI said the endoscopy was a must, the colonoscopy was optional. We opted for both.

Thank you October for your reply. Do you have a family history of celiac? I do not, but several family members have other autoimmune disorders.

EDIT: update, just got an email from UofC Celiac Center, their doctor recommends an endoscopy for my son, based less on the weak positive and more on his symptoms (which I would say are very mild)

Will need to think about this some more.

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

Celiac.com Sponsor (A8-M):


October3 Explorer
October3
Posted

Thank you October for your reply. Do you have a family history of celiac? I do not, but several family members have other autoimmune disorders.

EDIT: update, just got an email from UofC Celiac Center, their doctor recommends an endoscopy for my son, based less on the weak positive and more on his symptoms (which I would say are very mild)

Will need to think about this some more.

We don't have a family history of celiac, but like you there are a variety of autoimmune issues.

If you go for the endoscopy and it shows a + for celiac then you have your answer. For me the drama of the scope prep was worth knowing for sure if he had full blown celiac. The hard part is when symptoms are mild and the scope is negative - what do you do with that? That's where we are now.

Edited to add that the scope prep was really drama mainly because we did the colonoscopy as well. The endoscopy by itself I don't think would have been any big deal at all and well worth the info it provided.

I'm curious about the U of Chicago hotline - did you just call their hotline number and they were willing to have a doc look over the results? I would LOVE a second opinion on whether to be gluten-free long-term without having to drive hours or pay hundreds of dollars for an out-of-network consult.

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

I'm curious about the U of Chicago hotline - did you just call their hotline number and they were willing to have a doc look over the results? I would LOVE a second opinion on whether to be gluten-free long-term without having to drive hours or pay hundreds of dollars for an out-of-network consult.

October,

I called the hotline earlier this week, most of the time it rang out and there was an answering machine, I did manage to speak to someone early Tuesday and I briefly gave her my history and my sons and asked if they were able to review his blood work for me, which they were happy to do.

I faxed it to them Tuesday and waited, I got an email back yesterday (Friday).

So, yes, they should be willing to look at your son's records if you can fax/email them. I don't know if they will look at previously taken biopsy slides, that would require a GI pathologist and I'm not sure if they have one on staff at the Center, but I would certainly ask.

The lady I spoke to was very nice and sympathetic, you have nothing to lose by calling them.

Have a read of this article about biopsies, I found it a bit of an eye opener. Open Original Shared Link

Archived

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

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


  • Member Statistics

    • Total Members
      130,785
    • Most Online (within 30 mins)
      7,748
    KatieJo
    Newest Member
    KatieJo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Kwinkle
      A question - eggs & dairy

      By Kwinkle · Posted

      Thank you, Trents 😊
    • trents
      A question - eggs & dairy

      By trents · Posted

      First of all, being able to return to foods that you have developed a sensitivity to in connection with celiac disease is not a given. You may or may not be able to do this with time. But the ability to do so seems to be connected with the healing of the villous lining of the small bowel which often takes 2-3 years in adults after attaining to consistently truly gluten free diet. But you will just have to test the waters. Experimentation with those foods is the only way. Realize also there are thresholds of tolerance. You may be able to consume those foods without issue but not as often and in lesser amounts than in your pre celiac days. So, start small and go slow.
    • trents
      Diagnosed gluten allergy but not Celiac

      By trents · Posted

      Welcome to the forum, @Waterdance! Constipation and diarrhea are classic celiac symptoms and hemorrhoids is usually the outworking of either or both of those two problems. But I'm curious about your statement, "I probably don't fit the diagnostic criteria for a diagnosis of Celiac Disease." Perhaps your understanding of what that encompasses is outdated and deficient, as is also true of many physicians. Actually, now there are over 200 symptoms and medical conditions that have come to be associated with celiac disease and the list keeps growing.  And you use the term "gluten intolerance". What does that mean to you? Actually, gluten intolerance is a catch all term referring to two different gluten disorders: celiac disease and NCGS (Non Celiac Gluten Sensitivity). Celiac Disease is an autoimmune disorder characterized by ingested gluten triggering the immune system to attack the lining of the small bowel. NCGA or just, gluten sensitivity, for short, is a reaction to gluten that is not autoimmune in nature (neither is it an allergic reaction per se) but it's symptoms overlap with that of celiac disease. We actually don't know a lot about NCGS yet but some experts believe it can be a precursor to celiac disease and it is 10x more common that celiac disease.  There are some blood antibody tests that are pretty specific to celiac disease but they require that you have been eating normal amounts of gluten for weeks/months prior the blood draw. Having the blood draw done while being gluten free or even having been on a reduced gluten diet will invalidate the testing. There was a recent article posted in this forum about testing being developed that did not require breaking a gluten fast but it is not available yet. When and if it is, that will be a giant breakthrough because so many people experiment with the gluten free diet before they ever get tested and can't safely utilize the "gluten challenge" because their reactions are too severe. So, they can't distinguish whether they have NCGS or celiac disease and must live with the ambiquity.  There are also some people who react negatively to all cereal grains. You may be one of them. Technically speaking, gluten is found only in wheat, barley rye, and some cultivars of oats. But all cereal grains contain proteins that more or less are similar to gluten and, apparently, similar enough to cause a gluten-like reaction in some people.  Have you experimented with non-cereal alternative grains like buck wheat or sorghum? Can you substitute potatoes for grains to get calories? Have you looked into SIBO (Small Intestine Bacterial Overgrowth)/histamine intolerance? This could also explain the problems you are having. You are not going to want to hear this because you will feel like you are starving but the Auto Immune Protocol Diet will probably make you feel a lot better.  
    • Kwinkle
      A question - eggs & dairy

      By Kwinkle · Posted

      Hello everyone.  For those of you that I’ve had a sensitivity develop to eggs and dairy (one or both) I am wondering for those who were able to go back to eating these things how did you discover that it was all right? I have a sensitivity to both, but I really miss eggs and I really miss dairy but I’m afraid to try them again so I’m wondering what others have done. Thank you 
    • Waterdance
      Diagnosed gluten allergy but not Celiac

      By Waterdance · Posted

      Hi and thanks for this place to ask questions. I have been diagnosed with a gluten and milk allergy but so far I have no Celiac diagnosis and honestly I probably don't fit the diagnostic criteria for a diagnosis of Celiac Disease. I've come here because I'm having problems and you all would be knowledgeable about gluten free diets.   An allergist diagnosed me with a gluten and milk allergy about 15 years ago but she said "if you eat a lot of it, don't worry about it." This haunted me because I did not eat a lot of it but it was in my diet. Going 100% gluten free was daunting so I struggled with lowering my intake and observing results when adding it back. Due to aging, I think, the problem is worse now. I know ingesting gluten almost immediately causes a hemorrhoid flare up. It's very painful and I have severe chronic issues with it and even one surgery which did not solve much and the problem came back with vengeance. I know from my own experiments that I can build a tolerance to gluten in my diet but overall if I want to avoid chronic pain and discomfort I should just eliminate it entirely.   When it comes to my diet, I found not only gluten to be problematic but all grains! This is terrifying to me. Keeping a grain free diet was difficult and left me hungry all the time.   My question for you all is do you have any tips to help me live on a grain free diet sustainably long term? And Do any of you know of or heard of hemorrhoids, constipation and diarrhea being main symptoms to gluten intolerance?
×
×
  • Create New...