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

3 Year Old with VERY high antibodies

brooke12

Recommended Posts

brooke12 Rookie
brooke12
Posted

I recently discovered I have celiac disease. I have suspected that my 3 year old daughter has it as well so I had her tested. 

Her labs came back SO HIGH! Ttg >100 EMA titer 1:640. Yes, SIX HUNDRED FORTY!!!!

My doctor is obviously very uneducated on celiac disease. I had to diagnose myself and he gave no advice or insight on my daughter's high results except to say that "celiac disease is likely". I had to ask for a referral to a pediatric gastroenterologist.  I am waiting to hear back. In the meantime, I am looking for information and advice for helping her heal. Does anyone have experience with such high levels? Will they be harder to bring down? I've read that some people have issues with rice and oats (gluten free). Should she be avoiding those? Should I have her undergo further testing for any other health issues or allergies? Should I be concerned that she is only 3 and has such high levels? 

 I would like to start doing everything I can while waiting to see a gastroenterologist. The doctor gave me nothing other than the positive diagnosis. I would LOVE any advice and suggestions for my little one. 

Currently, I am giving her a strong probiotic daily. A multivitamin. Vitamins C and D. Digestive enzymes after meals. She drinks a lot of water and loves kombucha. She still has diarrhea and complains of belly aches after almost 2 weeks gluten free. 
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pschwab Enthusiast
pschwab
Posted

We had a very similar experience with our two year old 6 months ago. He was having stomach aches, weird bowel movements and random vomiting episodes. His ttg levels from our regular pediatrition came back at 300 which made him suspect celiac and we were referred to a pediatric gi doctor. They couldn't get us in for over a month so I called our pediatrition back to express my worry and frustration over the long wait. Our pediatrition called the gi office and they managed to find us an appointment that week. (Eye roll) The gi dr said with the high level of ttg we had two options.

1) get genetic testing and if the gene for celiac was present, that would be sufficient combined with the high level of ttg to give a positive celiac diagnosis. The disadvantage of that was the cost of the testing. The advantage was we could start a gluten free that day to help him feel better.

2) Keep him eating gluten for at least two more weeks until they could get him in for a biopsy. Cheaper but he'd be sick for that much longer. Plus the actual biopsy process on our kiddo.

We chose the genetic testing so we could immediately start going gluten free. If you are planning to have your kiddo go through the biopsy, you need to keep her eating gluten until then. Our son was deficient in a couple vitamins so we were told to supplement those through multivitamins. Target brand (up and up) are gluten free and taste similar to flintstone vitamins. Milk and oats can be a real issue, but our kiddo has been fine with both. When in doubt I would avoid at least the oats with her. There is hope though in bringing down her high levels! We had our son's ttg levels retested 3 months after starting his exclusive gluten free diet and he was down to 71! We noticed an immediate improvement in his temperament, vocabulary development and overall health within a couple weeks of starting the gluten free diet. In my humble opinion (not an expert by any means) her levels are so high because she's little. Her body is small so it processes things quickly and she's at a real growth age so everything is working so hard. I think that lets the gluten hit them hard and raise the ttg levels. But I also hope that means the recovery is quicker because of how hard their bodies work in such a small space. Again, just my opinion. Because of her age, watch art supplies and shampoo for gluten as well. If she still puts her hands in her mouth like our guy, that can be stressful. I would try calling your pediatrition to see if he or she could help get you in to see the gi dr earlier. Good luck and best of wishes for your family!!

ravenwoodglass Mentor
ravenwoodglass
Posted

It is very important that you get her back on gluten immediately. She needs to be still on gluten for any blood work or an endoscopy that the GI will want to do. Call the Gi's office and ask to speak with a nurse and tell them about the probiotic, vitamins and digestive aids that you are giving her. The doctor may want to run vitamin panels and the supplements could interfer with getting her correct levels. The nurse will likely need to call you back after he/she talks to the doctor.  She can get probiotics from the Kombucha, yogurt, saurkraut or any other fermented food.

I am not a fan of using the gene tests as part of the diagnostic process. There are cases when diagnosed celiacs have not carried the most common celiac associated genes. While it is rare I am one of them.  Research is still going on concerning all the genes associated with the condition. It wasn't until a few years after I was diagnosed the my gene finally was recognized as associated.

I hope the GI gets you in soon. Do make sure to keep up with the gluten. Just a couple pieces of bread worth of gluten should be enough.  It is very important she have a formal diagnosis for accomodations at school, hospitals etc.

squirmingitch Veteran
squirmingitch
Posted
12 minutes ago, ravenwoodglass said:

It is very important that you get her back on gluten immediately. She needs to be still on gluten for any blood work or an endoscopy that the GI will want to do. Call the Gi's office and ask to speak with a nurse and tell them about the probiotic, vitamins and digestive aids that you are giving her. The doctor may want to run vitamin panels and the supplements could interfer with getting her correct levels. The nurse will likely need to call you back after he/she talks to the doctor.  She can get probiotics from the Kombucha, yogurt, saurkraut or any other fermented food.

I am not a fan of using the gene tests as part of the diagnostic process. There are cases when diagnosed celiacs have not carried the most common celiac associated genes. While it is rare I am one of them.  Research is still going on concerning all the genes associated with the condition. It wasn't until a few years after I was diagnosed the my gene finally was recognized as associated.

I hope the GI gets you in soon. Do make sure to keep up with the gluten. Just a couple pieces of bread worth of gluten should be enough.  It is very important she have a formal diagnosis for accomodations at school, hospitals etc.

Ditto this!

brooke12 Rookie
brooke12
Posted
  • Author

Thank you all for your advice! I'm glad I posted. I finally got our PCP to send a referral today. I'm certain that my daughter has celiac. She snuck some Ritz crackers at preschool today (first gluten in 2 weeks) and has been in so much pain the last few hours. I wouldn't want to subject her to the gluten challenge but hadn't thought about needing a diagnosis. Ugh. I'll call the GI tomorrow and talk to the nurse. 

Thank you thank you!!! Your advice and shared experiences really mean so much!

  • 3 months later...
DrMommy09 Rookie
DrMommy09
Posted

Our 3 year old is in the same boat. Trying to decide if endoscopy is necessary. Waiting for call back from GI doc. Hope your daughter is doing better!

  • 1 month later...
Sienna2013 Apprentice
Sienna2013
Posted

In case it's helpful to know, my daughter's TTG came back at over 3,000. (Not a typo; reference range 0-20 is negative, 20-30 is weak positive, >30 is positive, and they stop counting at 3,000.)  The ped GI at the local nationally known teaching hospital did not require endoscopy, but diagnosed her based on that lab, a second set of labs which had the same numbers and also showed positive for genetics.

It's been a week gluten-free and we're seeing some improvement, but poor kid is going to take a while to feel well. Her primary symptoms were stomach aches and extreme anxiety - it was her therapist who actually suggested the celiac screen. (For which we are forever grateful!) 

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

Celiac.com Sponsor (A8-M):


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.