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

My son's lab results, some elevated

kmgd99

Recommended Posts

kmgd99 Newbie
kmgd99
Posted

My son was dx'd with celiac disease 2.5 years ago and has been gluten-free ever since. I recently had his labs checked and am awaiting a call from the doctor. The pediatrician ordered more tests than the GI normally does so these results are unfamiliar. His ttg looks fine but gliadin is crazy high. What does this mean?

Gliadin(Deamidated) Ab, IgA Value 2.7 U/mL <15.0 U/mL  
Gliadin(Deamidated) Ab, IgA Negative   Negative  
GLIADIN(DEAMIDATED) AB, IGG, VALUE 551.8 U/mL <15.0 U/mL H
Gliadin(Deamidated) Ab, IgG Positive   Negative A
Tissue Transglutaminase Ab, IgA Value 8.9 U/mL <15.0 U/mL  
Tissue Transglutaminase Ab, IgA Negative   Negative  
Tissue Transglutaminase Ab, IgG Value 40.5 U/mL <15.0 U/mL H
Tissue Transglutaminase Ab, IgG Positive   Negative A
IMMUNOGLOBULIN A 92 mg/dL 51 - 259 mg/dL
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tessa25 Rising Star
tessa25
Posted

His TTG IGG and DGP IGG are both very high. I think it would imply he's not gluten free enough. I've read that children should recover quickly once going 100% gluten free compared to adults. I'm sure the others here will give you some great ideas on how to make sure he's gluten free from now on. It's not easy.

Ennis-TX Grand Master
Ennis-TX
Posted

Refractory Celiac is one possibility, but I would say it is more likely he is getting gluten somewhere. Questions with possable reasons.
Does he eat out at restaurants, probably getting CCed if yes.
Is the house gluten free. If not then he is probably getting CCed in the house.
Does he eat a ton of processed foods? In many cases celiac that eat lots or "Gluten Free" processed foods that contain traces of gluten can build up beyond the recommended safe gluten threshold for many celiacs. There was a study done on this by GFWD short time ago.
For now transition to whole foods only diet, remove processed foods, and only eat at home. Cook in dedicated gluten free cookware, take extra precautions rinsing raw produce before cooking, using freezer paper for prep surfaces, perhaps liners for crock pots, and some cheap nordicware microwave cook ware to make sure the cooking implements are not glutened. I wish you luck in figuring it out.
Of course it could also be peer pressure and eating gluten foods and lack of caution for daily life...How old is your son?

kmgd99 Newbie
kmgd99
Posted
  • Author

Thanks for your response. My son is 9 and has an extremely limited diet due to texture issues, etc. I know that he is not eating foods due to peer pressure and takes the gluten-free diet very seriously so the problem must be cross contamination at restaurants as well as processed gluten-free foods that aren’t truly gluten-free. Ugh. Another troubling thing is that his GI doc (recently retired) never did this full range of tests so we thought my son was doing great! I guess we are back to square one. Moving to a whole foods diet for him will be extremely difficult but must be done.

 

cyclinglady Grand Master
cyclinglady
Posted

It sure does seem like he is getting gluten into his diet.

Open Original Shared Link

How does he feel?  Was he symptomatic when he was first diagnosed? 

Cross contamination can be a huge problem.  Best to avoid eating out until those elevations are reduced.  I never had a positive on the TTG tests only the DGP.  I struggled last year after taking a hit (unknown source).  I buckled down and did not eat out (even at a 100% gluten free restaurant) for a year.  My house is 100% gluten free as we have two people who need to be gluten free.  

Just recently a new study has shown that too many celiacs are getting gluten exposures:

Open Original Shared Link

I would try to stick to non-processed foods as much as possible.  I wish you both well.  

plumbago Experienced
plumbago
Posted

What an incredibly newsy and good article that is from NPR! A lot of useful things in there, including the urine and stool tests.

kmgd99 Newbie
kmgd99
Posted
  • Author

Thank you so much for these articles and the advice. I appreciate it so much. He was symptomatic pre-diagnosis. He battled abdominal pain, constipation, horrible gas then he got profoundly anemic. Plus, he was small compared to his classmates (the rest of us are tall). After going gluten free (or so we thought) those symptoms disappeared and he began to grow and gain weight. It took about 10 months for his Ttg to go from  greater than 198 to 7. He does not seem to have symptoms now.

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

Celiac.com Sponsor (A8-M):


Nookie2017 Newbie
Nookie2017
Posted
On 4/21/2018 at 3:04 AM, tessa25 said:

His TTG IGG and DGP IGG are both very high. I think it would imply he's not gluten free enough. I've read that children should recover quickly once going 100% gluten free compared to adults. I'm sure the others here will give you some great ideas on how to make sure he's gluten free from now on. It's not easy.

I have a question plz, my son is the opposite his TTG IGG IS NORMAL , but his TTG IGA IS HIGH WELL BETTER THAN 6 month ago but it’s getting better slowly ?

any advice?

Nookie2017 Newbie
Nookie2017
Posted

EDD418E9-017F-46EA-90EA-2D76CFFDE975.webp.cc276b1bd2ceaef1f02f110e77ca7e46.webp any help please to explain six month ago the TTG - IGG WAS HIGH now it’s normal, the TTH IGA is better but still high?

we are on a very strict  diet .

cyclinglady Grand Master
cyclinglady
Posted
12 minutes ago, Nookie2017 said:

EDD418E9-017F-46EA-90EA-2D76CFFDE975.webp.cc276b1bd2ceaef1f02f110e77ca7e46.webp any help please to explain six month ago the TTG - IGG WAS HIGH now it’s normal, the TTH IGA is better but still high?

we are on a very strict  diet .

It can a year or long for antibodies to come down (learning the diet, having setbacks, lots of collateral damage).  As long as the antibodies are in a downward trend, he is doing well.  Keep to the gluten free diet.  Avoid oats and honestly, try not to eat out until the numbers are normalized as that result of TTG IgA 875 is very high!  

Nookie2017 Newbie
Nookie2017
Posted
15 minutes ago, cyclinglady said:

It can a year or long for antibodies to come down (learning the diet, having setbacks, lots of collateral damage).  As long as the antibodies are in a downward trend, he is doing well.  Keep to the gluten free diet.  Avoid oats and honestly, try not to eat out until the numbers are normalized as that result of TTG IgA 875 is very high!  

Thank you very much for your reply, the TTG IGA was 1300 6 month ago... may I ask is it a good sign that the TTG IGG IS NOW NORMAL? I feel really sad I am working so hard and I check everything, a question he loves biscuits so I give him only Schär products that’s ok or no? It’s gluten free he loves bread and treats but he is in very good growth health and he is slim not fat

tessa25 Rising Star
tessa25
Posted

As long as the numbers keep going down it's a great thing.

cyclinglady Grand Master
cyclinglady
Posted

I just attended a lectures by Dr. Shelia Crowe who was the 2017 President of the American GI Association and Melinda Dennis, MS, RD at the celiac Center at Beth Israel in Boston (she has celiac disease).  It was discussed that the celiac antibodies tests are really for helping to diagnose celiac disease.  They were not intended to monitor dietary compliance.  But....they are the only tool ps in the toolbox for now.  Wait a minute,  there is the new Gluten Detective that may be able to determine a gluten exposure.  Even the Gluten Free Watchdog has mentioned it, so it could help: 

Open Original Shared Link

In any case, it does take a long time for antibodies to decrease.   I was going kind of crazy like you.  I have taken three gluten hits (hidden gluten) over the last five years and my DGP IgA antibodies were off the charts.  This last time, I developed autoimmune hives for six months.  I was going crazy thinking I had been getting glutened or that I was a super sensitive celiac.  I went on the Fasano diet.  Still my antibodies were elevated after a few months.  I finally caved and had a repeat endoscopy.  My villi have healed, but I have autoimmune gastritis.  At least I know that I am doing the gluten-free diet correctly.  I do not eat out except at dedicated gluten-free restaurants, do not eat oats and only used certified gluten-free grains (except for rice).  I am still not taking chances.  

What I have learned is that not everything is related to a gluten exposure.  I have other AI issues and probably some developing.  But my Doctors support my desire to handle everything without medications for now.  I only take thyroid replacement.  

Shar is good!  I like it because I react to Xanthan Gum which is found in many other gluten-free breads. I bake a lot using Pamela’s gluten-free Flour which does not contain Xanthan Gum.  We all can have unique intolerances and must find our own way!  

I hope this helps.  Hang in there!  

 

 

Nookie2017 Newbie
Nookie2017
Posted
45 minutes ago, cyclinglady said:

I just attended a lectures by Dr. Shelia Crowe who was the 2017 President of the American GI Association and Melinda Dennis, MS, RD at the celiac Center at Beth Israel in Boston (she has celiac disease).  It was discussed that the celiac antibodies tests are really for helping to diagnose celiac disease.  They were not intended to monitor dietary compliance.  But....they are the only tool ps in the toolbox for now.  Wait a minute,  there is the new Gluten Detective that may be able to determine a gluten exposure.  Even the Gluten Free Watchdog has mentioned it, so it could help: 

Open Original Shared Link

In any case, it does take a long time for antibodies to decrease.   I was going kind of crazy like you.  I have taken three gluten hits (hidden gluten) over the last five years and my DGP IgA antibodies were off the charts.  This last time, I developed autoimmune hives for six months.  I was going crazy thinking I had been getting glutened or that I was a super sensitive celiac.  I went on the Fasano diet.  Still my antibodies were elevated after a few months.  I finally caved and had a repeat endoscopy.  My villi have healed, but I have autoimmune gastritis.  At least I know that I am doing the gluten-free diet correctly.  I do not eat out except at dedicated gluten-free restaurants, do not eat oats and only used certified gluten-free grains (except for rice).  I am still not taking chances.  

What I have learned is that not everything is related to a gluten exposure.  I have other AI issues and probably some developing.  But my Doctors support my desire to handle everything without medications for now.  I only take thyroid replacement.  

Shar is good!  I like it because I react to Xanthan Gum which is found in many other gluten-free breads. I bake a lot using Pamela’s gluten-free Flour which does not contain Xanthan Gum.  We all can have unique intolerances and must find our own way!  

I hope this helps.  Hang in there!  

 

 

I am so grateful for all your help and I will hang in there and fight for my sons health, people helpful and lifting up like you are the reason.

 

thank you so much again

50 minutes ago, tessa25 said:

As long as the numbers keep going down it's a great thing.

Thank you so much for the lift up and kind words ?

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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.