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

Almost 3 Year Old Endo Today And I Have A Few Questions.

justa

Recommended Posts

justa Newbie
justa
Posted

My toddler since Thanksgiving has been consistently producing a white/cream or khaki color poop. He complains of tummy pain frequently and vomits. His stomach is not rigid. yes gross sorry. 

He will be 3 in August and is 27 pounds and average height. He has thrown up at least 10 separate occurrences and several times here and there one time. He drinks about 20 oz of milk a day or water. He has a pretty heavy wheat and cheese diet. He doesn't care for meats much but does eat lots of veggies and fruit. 

 

We had his liver tested and it was all fine

We had an ultrasound done and all was fine.

 

We were told if he throws up one more time we needed to do an endoscopy. He threw up last week 3 times in 2 hours after a nap at the sitters. He empties his tummy each time. So I scheduled the endo.

 

ENDO was this morning and I was hoping for obvious Celiac but I didn't get that. The images "look" clean as a whistle. I have to wait until Friday to get the biopsy results. They did not do bloodwork yet because they said the ENDO would either tell you or not over blood work.

 

Does anyone know anything about if the images looks clean and biopsy coming back positive? Does it happen often.

I would just make him Gluten free by myself but my husband won't follow through unless a doctor tells him he needs to do this. BTW this is my allergy child who has terrible eczema skin also. He goes for allergy testing in July.


 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Have they looked at lactose intolerance?  You might want to look into that.

GottaSki Mentor
GottaSki
Posted

Make sure you ask for written copies of both the pathology and procedure reports for the endo and if it were my child I would push for a complete celiac antibody panel before removing gluten -- once that is done remove all gluten to see if symptoms improve -- many children improve quickly once gluten is removed.

 

Here is the complete panel:

 

Total Serum IgA

tTG - both IgA and IgG

EMA - IgA

DGP - IgA and IgG

 

the AGA is an older "Gliadin" (gluten protein) test -- optional but if run should also be both IgA and IgG

 

Hang in there Mom :)

justa Newbie
justa
Posted
  • Author

We are looking at that as well. I talked to the GI today and he said that my child would be throwing up after every time he drank or ate dairy most likely if it was lactose. At this point I am just trying to rule out one thing at a time.

justa Newbie
justa
Posted
  • Author

Gottaski- I will most likely do that. He thinks the endoscopy will come back with results but it is 50/50. I am not sure if he saw something he isn't saying but that is what he told us. He said everything visually looked ok and if the tests were negative we would talk about other options. I don't know what that means :) (I mean I technically do... "other options" is what I am referring.)

greenbeanie Enthusiast
greenbeanie
Posted

My four-year-old daughter had a clearly positive biopsy, but everything looked normal during the endoscopy itself. The pediatric GI said that he wouldn't expect the damage to be visible in most young children with celiac.

Like your son, she also had lots of vomiting, which started when she was just a few weeks old and exclusively breast feeding. At one point she was having projectile vomiting six or seven times each day and they did an ultrasound to check for pyloric stenosis, but it wasn't that. She also had significant neurological problems and extreme fussiness as an infant, but her GI symptoms didn't really start until she was a toddler. She did have clear problems with dairy too, but removing dairy did not help much overall (while she was still eating gluten).

It's good that the doctor will look into other options (whatever those may be) if the celiac tests are negative. I hope they figure it out soon!

mmcc54 Contributor
mmcc54
Posted

My toddler since Thanksgiving has been consistently producing a white/cream or khaki color poop. He complains of tummy pain frequently and vomits. His stomach is not rigid. yes gross sorry. 

He will be 3 in August and is 27 pounds and average height. He has thrown up at least 10 separate occurrences and several times here and there one time. He drinks about 20 oz of milk a day or water. He has a pretty heavy wheat and cheese diet. He doesn't care for meats much but does eat lots of veggies and fruit. 

 

We had his liver tested and it was all fine

We had an ultrasound done and all was fine.

 

We were told if he throws up one more time we needed to do an endoscopy. He threw up last week 3 times in 2 hours after a nap at the sitters. He empties his tummy each time. So I scheduled the endo.

 

ENDO was this morning and I was hoping for obvious Celiac but I didn't get that. The images "look" clean as a whistle. I have to wait until Friday to get the biopsy results. They did not do bloodwork yet because they said the ENDO would either tell you or not over blood work.

 

Does anyone know anything about if the images looks clean and biopsy coming back positive? Does it happen often.

I would just make him Gluten free by myself but my husband won't follow through unless a doctor tells him he needs to do this. BTW this is my allergy child who has terrible eczema skin also. He goes for allergy testing in July.

 

Hi Sorry sorry about your baby :( my one year old just had an endo Tuesday...her GI said on kids young you cant really see damage and that if their is damage its microscopic..so even before she went back he told us that and he said everything looked fine after just like he expected...she had a pos blood test so we did the endo to find out for sure...good luck!

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

Celiac.com Sponsor (A8-M):


justa Newbie
justa
Posted
  • Author

Mm- thank you. This gives me some relief. While I don't want this diagnosis I welcome it because we can treat it at home. I also think overall it will help our situation.

Thank you for all the replies. I am waiting results :)

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.