Symptoms in 20 months child

[Papafma]

Hi everyone,

my 20 old son was diagnosed with milk protein allergy since he was 3 months and he is in neocate formula since then. At 12 months we had a blood test and his liver enzymes were elevated.We repeated 3 times and there are still evelated. He was tested for celiac(only Anti-transglutaminaseIgA
Anti-gliadine IgG ) and came back negative.Ultrasound shown fatty liver. He is gaining weight,His stools were always fatty and that was confined by stool test(steatorrhea) Its been 14 days now that he has diarrhea.Does anyone had evelated liver enzymes as symptom?i know that in adults celiac can effect liver but i want to know about children. We had a genetic test for cystic fibrosis and waiting the results. His doctor said that as his antibodies for celiac were negative he doesn’t have celiac so they dont want to do any further test for that

[knitty kitty]

@Papafma,

Young children need to be tested using the DGP test (Deaminated Gliadin Peptide test).  

Infants and small children's immune systems are not as developed as adults'.  Children don't start making tTg antibodies until they are older.  Some young adults only test positive on the DGP tests.  

You might want to consider doing genetic testing for Celiac Disease genes.  

Fatty liver can be induced by nutritional deficiencies in Thiamine, Vitamin D or B12.  Has your son been tested for nutritional deficiencies? 

[Papafma]

7 hours ago, knitty kitty said:

@Papafma,

Young children need to be tested using the DGP test (Deaminated Gliadin Peptide test).  

Infants and small children's immune systems are not as developed as adults'.  Children don't start making tTg antibodies until they are older.  Some young adults only test positive on the DGP tests.  

You might want to consider doing genetic testing for Celiac Disease genes.  

Fatty liver can be induced by nutritional deficiencies in Thiamine, Vitamin D or B12.  Has your son been tested for nutritional deficiencies? 

Is DGP tests the anti gliadine IGg? He was tested for that and it was negative.He was tested for nutritional deficiencies but everything came back normal 

[knitty kitty]

@Papafma,

There are two tests DGP IgA and DPG IgG.  

Have you considered genetic testing?

Curious, is your son's voice hoarse?

Edited February 11, 2023 by knitty kitty
Typo

[Papafma]

On 2/11/2023 at 4:48 PM, knitty kitty said:

@Papafma,

There are two tests DGP IgA and DPG IgG.  

Have you considered genetic testing?

Curious, is your son's voice hoarse?

We leave in Belgium and here its not possible to have any test without doctors approval .You don’t have the option to do tests private.As his doctor is sure that he doesn’t have celiac we cannot have the genetic test.I pushed them to have at least the full panel blood test and during summer we plan to have the genetic test in my home country.

his voice is not hoarse at all

[knitty kitty]

@Papafma,

Glad to know you'll get the genetic test soon.  

Thiamine Vitamin B 1 is not routinely tested for.  Blood tests for thiamine are not reliable.  An Erythrocyte transketolase test would be a better test.  It tests how well thiamine is being utilized by the body.

Extended diarrhea is a symptom of Gastrointestinal Beriberi, caused by thiamine deficiency.  I suffered with constant diarrhea and steatorrhea when I had Gastrointestinal Beriberi.  The gallbladder needs thiamine to produce bile which helps digest fats.  

My fatty liver (NAFLD) resolved when I corrected my Thiamine deficiency.  Fatty deposits in the liver can be caused by thiamine deficiency.  

Thiamine is nontoxic.  Excess is easily excreted in urine.  I took over the counter thiamine supplements because my doctors didn't recognize thiamine deficiency symptoms, but I had learned about it at university.  I was at rope's end and decided to try Thiamine supplementation.    My symptoms improved within hours.  The diarrhea improved and stopped within days.

One can have thiamine deficiency without having Celiac Disease.  

A symptom of Thiamine insufficiency or deficiency in infants is hoarseness.  A more worrisome thing that can happen in infants with thiamine deficiency is Sudden Infant Death Syndrome (SIDS).  

This study reports on the disastrous effects of an infant formula that was missing thiamine...

https://pubmed.ncbi.nlm.nih.gov/15687431/

And this study on your brand of formula causing hypophosphatemia and bone disease ..

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884631/

Have you checked to see if that formula has been recalled in your area?  Or if lawsuits have been filed against the company? 

I'm really worried.  Sending prayers.  

Please keep us posted on your progress!

[Papafma]

6 minutes ago, knitty kitty said:

@Papafma,

Glad to know you'll get the genetic test soon.  

Thiamine Vitamin B 1 is not routinely tested for.  Blood tests for thiamine are not reliable.  An Erythrocyte transketolase test would be a better test.  It tests how well thiamine is being utilized by the body.

Extended diarrhea is a symptom of Gastrointestinal Beriberi, caused by thiamine deficiency.  I suffered with constant diarrhea and steatorrhea when I had Gastrointestinal Beriberi.  The gallbladder needs thiamine to produce bile which helps digest fats.  

My fatty liver (NAFLD) resolved when I corrected my Thiamine deficiency.  Fatty deposits in the liver can be caused by thiamine deficiency.  

Thiamine is nontoxic.  Excess is easily excreted in urine.  I took over the counter thiamine supplements because my doctors didn't recognize thiamine deficiency symptoms, but I had learned about it at university.  I was at rope's end and decided to try Thiamine supplementation.    My symptoms improved within hours.  The diarrhea improved and stopped within days.

One can have thiamine deficiency without having Celiac Disease.  

A symptom of Thiamine insufficiency or deficiency in infants is hoarseness.  A more worrisome thing that can happen in infants with thiamine deficiency is Sudden Infant Death Syndrome (SIDS).  

This study reports on the disastrous effects of an infant formula that was missing thiamine...

https://pubmed.ncbi.nlm.nih.gov/15687431/

And this study on your brand of formula causing hypophosphatemia and bone disease ..

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884631/

Have you checked to see if that formula has been recalled in your area?  Or if lawsuits have been filed against the company? 

I'm really worried.  Sending prayers.  

Please keep us posted on your progress!

I got a phone call from his doctor today saying that they found bacteria in his stools so he has bacterial gastroenteritis!!!! I know that neocate can cause hypophosphatemia  but my son s level are in normal range( also vit D and calcium).
its been a month since we ve changed from neocate formula to rice milk .He will be on antibiotics for 10 days and then we will repeat all the tests.I was told that he may have the bacteria infection for long time and this can explain the elevated liver enzymes 

[knitty kitty]

@Papafma,

What a relief to know!  Big sigh of relief!

Although, antibiotics work better with Thiamine!  

Are you giving your son a vitamin supplement since changing from formula?  Rice milk formula?  Plain rice milk isn't enriched with vitamins.  The eight essential B vitamins are water soluble and easily become depleted with diarrhea.  

 Do let us know how he's doing! Thanks!

[Papafma]

2 hours ago, knitty kitty said:

@Papafma,

What a relief to know!  Big sigh of relief!

Although, antibiotics work better with Thiamine!  

Are you giving your son a vitamin supplement since changing from formula?  Rice milk formula?  Plain rice milk isn't enriched with vitamins.  The eight essential B vitamins are water soluble and easily become depleted with diarrhea.  

 Do let us know how he's doing! Thanks!

Its a rice milk for children older than 1 year old.Its not a formula.It contains all necessary vitamins,minerals etc ( i ve checked it before giving it)

[knitty kitty]

That's great!  😺