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

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
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.