20 months baby Symptoms and tests

[Papafma]

Hi ,my son is 20 months old and he has allergy to milk protein.At 12 months we had blood tests and his liver enzymes were elevated.We repeated the tests 3 times and they remain elevated.Ultrasound showed fatty liver.He was tested for different virus,hepatitis etc and everything came back normal.They also tested for celiac(Anti-transglutaminaseIgA,Anti-gliadine) and were negative.He has loose fatty stools confirmed by stool test.We are now running genetic tests for cystic fibrosis and we are waiting for the results.I ve read that blood tests for celiac could be false negative for children under 2 years old. Is it true? Is there any other test except from biopsy?

[trents]

Hello, Papafma! Welcome to the forum!

An infant's immune system is not fully developed and will often not respond the same to celiac antibody testing. Here is a primer for antibody tests that can be run in order to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

“Generally, children at risk for celiac disease are screened at age 2 or 3 unless symptoms are seen beforehand. In children younger than 3, with symptoms, antibody testing may not always be accurate."

"Children must be eating wheat or barley-based cereals for some time, up to one year, before they can generate an autoimmune response to gluten that shows up in testing. A pediatric gastroenterologist should evaluate young children experiencing a failure to thrive or persistent diarrhea for celiac disease."

"For young children (around age 2 years or below), Deamidated Gliadin IgA and IgG antibodies should also be included. All celiac disease blood tests require that you be on a gluten-containing diet to be accurate."

Were any IgG antibody tests run?

Has your son been eating a significant amount of gluten containing grain products (wheat/barley/rye)?

I assume he is not consuming dairy products since he is allergic to the milk protein, casein.

We do know that there are some celiacs who respond the same way to CMP (Cow's Milk Protein) that they do to gluten. The villi that line the small bowel are damaged by it just like they are with gluten.

I'm not a betting man but if I were, I'd put money on your son having celiac disease even though the antibody testing that has been done so far is negative.

It would be interesting to see if his symptoms improved if you took him off of gluten and dairy.

Edit: By the way, elevated liver enzymes was what led to my celiac diagnosis but I was an adult.

Edited February 2, 2023 by trents

[Papafma]

2 hours ago, trents said:

Hello, Papafma! Welcome to the forum!

An infant's immune system is not fully developed and will often not respond the same to celiac antibody testing. Here is a primer for antibody tests that can be run in order to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

“Generally, children at risk for celiac disease are screened at age 2 or 3 unless symptoms are seen beforehand. In children younger than 3, with symptoms, antibody testing may not always be accurate."

"Children must be eating wheat or barley-based cereals for some time, up to one year, before they can generate an autoimmune response to gluten that shows up in testing. A pediatric gastroenterologist should evaluate young children experiencing a failure to thrive or persistent diarrhea for celiac disease."

"For young children (around age 2 years or below), Deamidated Gliadin IgA and IgG antibodies should also be included. All celiac disease blood tests require that you be on a gluten-containing diet to be accurate."

Were any IgG antibody tests run?

Has your son been eating a significant amount of gluten containing grain products (wheat/barley/rye)?

I assume he is not consuming dairy products since he is allergic to the milk protein, casein.

We do know that there are some celiacs who respond the same way to CMP (Cow's Milk Protein) that they do to gluten. The villi that line the small bowel are damaged by it just like they are with gluten.

I'm not a betting man but if I were, I'd put money on your son having celiac disease even though the antibody testing that has been done so far is negative.

It would be interesting to see if his symptoms improved if you took him off of gluten and dairy.

Edit: By the way, elevated liver enzymes was what led to my celiac diagnosis but I was an adult.

Thank you for the information.He was tested for Anti-gliadine IgG and it was negative Does this means that there is no chance of having Celiac ?He is not consuming diary and he is on neocate formula( amino acid formula).He eats gluten every day .Doctors believe that he has cystic fibrosis so i m waiting the results from the genetic test .My instinct says that its not cystic fibrosis and it’s something relevant to what he eats but maybe its because i prefer him to have celiac rather than CF 

[Wheatwacked]

8 hours ago, Papafma said:

they remain elevated. Ultrasound showed fatty liver.

The symptoms of celiac disease are similar to those who have CF but do not have a gluten allergy: abdominal pain, bloating, diarrhea, constipation and fatigue.

So you already have two unrelated symptoms that could be Celiac. Possible cystic fibrosis and fatty liver. I bet there are more. There are over 200 symptoms that Celiac Disease can mimic. What are the chances of multiple unrelated symptoms caused by multiple different diseases.

Is there Choline in his neocate formula [typo: neonate ?] ?. Most of the formulas do not. Similac, Enfamil, etc do not have choline. It is a major cause of fatty liver disease. In 1976 my infant son, just weaned was diagnosed by biopsy. The doctor specifically prescribed Nutramgen because at the time it was the only hypoallergenic will all the essential nutrients including choline. Within days he improved and was on it for about 6 months.  Baby formulas are like parenteral feeding (TPN) it is the only source of nutrition.  This was 47 years ago and we still haven't learned. Eventually my wife died of complications of undiagnosed Celiac Disease and ovarian cancer and I was 63 before starting Gluten Free Diet, at which point I was bedridden for two years. His doctor suggested we both start GFD but we had none of the 'classic digestive problems' Amazingly many symptoms that had bothered me from childhood and were said to be "normal for some people" went away. I have spent the last 8 years undoing the damage caused me by gluten and the vitamin and mineral deficiencies of those first 63 years. I counted 19 different symptoms. This time of you sons life is crucial. You should also get yourself and mom checked out.  Even if your tests are negative, do at least a one month Gluten free trial.

Choline Content of Term and Preterm Infant Formulae Compared to Expressed Breast Milk—How Do We Justify the Discrepancies?   Most formulae (150 mL/kg/day) do not supply the amounts and physiologic components of choline required to achieve fetal plasma choline concentrations. A revision of choline content in formulae and breast milk fortifiers and a clear declaration of the choline components in formulae is required to enable informed choices.

"Studies in patients receiving long-term TPN [read baby formula] have shown that low levels of plasma choline are common and can be associated with hepatic steatosis [fatty liver]. Treatment of these patients with oral administration of choline improved plasma levels and decreased hepatic fat content; however, oral choline supplements are associated with poor compliance. More recently, investigators have evaluated intravenous administration of choline as a treatment for TPN-associated hepatic steatosis in patients with documented subnormal plasma free-choline levels. Initial results indicate that intravenous administration of choline may be an effective treatment for TPN-associated hepatic dysfunction." Essential nature of choline with implications for total parenteral nutrition E P Shronts 1

 

 

 

[Papafma]

11 minutes ago, Wheatwacked said:

The symptoms of celiac disease are similar to those who have CF but do not have a gluten allergy: abdominal pain, bloating, diarrhea, constipation and fatigue.

So you already have two unrelated symptoms that could be Celiac. Possible cystic fibrosis and fatty liver. I bet there are more. There are over 200 symptoms that Celiac Disease can mimic. What are the chances of multiple unrelated symptoms caused by multiple different diseases.

Is there Choline in his neocate formula [typo: neonate ?] ?. Most of the formulas do not. Similac, Enfamil, etc do not have choline. It is a major cause of fatty liver disease. In 1976 my infant son, just weaned was diagnosed by biopsy. The doctor specifically prescribed Nutramgen because at the time it was the only hypoallergenic will all the essential nutrients including choline. Within days he improved and was on it for about 6 months.  Baby formulas are like parenteral feeding (TPN) it is the only source of nutrition.  This was 47 years ago and we still haven't learned. Eventually my wife died of complications of undiagnosed Celiac Disease and ovarian cancer and I was 63 before starting Gluten Free Diet, at which point I was bedridden for two years. His doctor suggested we both start GFD but we had none of the 'classic digestive problems' Amazingly many symptoms that had bothered me from childhood and were said to be "normal for some people" went away. I have spent the last 8 years undoing the damage caused me by gluten and the vitamin and mineral deficiencies of those first 63 years. I counted 19 different symptoms. This time of you sons life is crucial. You should also get yourself and mom checked out.  Even if your tests are negative, do at least a one month Gluten free trial.

Choline Content of Term and Preterm Infant Formulae Compared to Expressed Breast Milk—How Do We Justify the Discrepancies?   Most formulae (150 mL/kg/day) do not supply the amounts and physiologic components of choline required to achieve fetal plasma choline concentrations. A revision of choline content in formulae and breast milk fortifiers and a clear declaration of the choline components in formulae is required to enable informed choices.

"Studies in patients receiving long-term TPN [read baby formula] have shown that low levels of plasma choline are common and can be associated with hepatic steatosis [fatty liver]. Treatment of these patients with oral administration of choline improved plasma levels and decreased hepatic fat content; however, oral choline supplements are associated with poor compliance. More recently, investigators have evaluated intravenous administration of choline as a treatment for TPN-associated hepatic steatosis in patients with documented subnormal plasma free-choline levels. Initial results indicate that intravenous administration of choline may be an effective treatment for TPN-associated hepatic dysfunction." Essential nature of choline with implications for total parenteral nutrition E P Shronts 1

 

 

 

. Neocate is an animo acid formula , i ve just checked the ingredients and choline is not in the list.

One allergologist in my home country with experience in USA told me that he believes that neocate is caused him this issue with the liver so he asked me to give him rice milk for 3 weeks and to repeat the tests but he said that celiac its not possible . Next week we will have blood tests to see if there is any change in his liver enzymes . Neocate can cause  rickets, broken fractures, and hypophosphatemia . These disorders were linked to a lowering of phosphate levels after feeding with Neocate so its sure that its not safe in any case but it was our only option as its the only amino acid formula .

I was gluten and diary free for 1 year after i was diagnosed with Hashimoto .

[trents]

8 hours ago, Papafma said:

Thank you for the information.He was tested for Anti-gliadine IgG and it was negative Does this means that there is no chance of having Celiac ?He is not consuming diary and he is on neocate formula( amino acid formula).He eats gluten every day .Doctors believe that he has cystic fibrosis so i m waiting the results from the genetic test .My instinct says that its not cystic fibrosis and it’s something relevant to what he eats but maybe its because i prefer him to have celiac rather than CF 

I must not have communicated well in my first post but my intention was to say that I do not agree with your doctor. I think there is a very good chance your son does have celiac disease. I do not believe all the correct tests for celiac disease were done since he is an infant. For instance, no DGP antibody tests were run. Also, infants who actually do have celiac disease may not produce antibodies to celiac disease since their immune systems are immature.

If the doctors are done with celiac testing then I would try a gluten free diet and see if his symptoms improve.

[Papafma]

2 minutes ago, trents said:

I must not have communicated well in my first post but my intention was to say that I do not agree with your doctor. I think there is a very good chance your son does have celiac disease. I do not believe all the correct tests for celiac disease were done since he is an infant. For instance, no DGP antibody tests were run. Also, infants who actually do have celiac disease may not produce antibodies to celiac disease since their immune systems are immature.

If the doctors are done with celiac testing then I would try a gluten free diet and see if his symptoms improve.

I will ask his doctor to run a full test for Celiac and i hope he will agree. If not i will for sure try a gluten free diet .They are testing him for more than 5 months and still no diagnosis so i do believe he has celiac.

[Wheatwacked]

3 minutes ago, trents said:

infants who actually do have celiac disease may not produce antibodies to celiac disease since their immune systems are immature.

Dr Fine explained it well in article as a result of both parents having Celiac. Sorry but I've lost that article.

Early Diagnosis of Gluten Sensitivity: Before the Villi are Gone

Quote

On a final note, I would like to congratulate the expert staff at Celiac.com for their understanding of The Gluten Truth, i.e., that there is more to gluten-related illness than the just the 1% of gluten-sensitive individuals affected by celiac disease. Scott Adams and this website, having served the gluten-sensitive community since 1995, deserve a standing ovation. You may stand and clap now!  Thank you.  

 

 

[trents]

There is also the possibility that your son does not have celiac disease but does have NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease. NCGS and celaic disease share many of the same symptoms. There is no test for NCGS. Celiac disease must first be ruled out.

[trents]

1 hour ago, Papafma said:

I was gluten and diary free for 1 year after i was diagnosed with Hashimoto .

There is a strong correlation between Hashimoto and celiac disease. Have you yourself ever been tested for celiac disease?

[Papafma]

Just now, trents said:

There is a strong correlation between Hashimoto and celiac disease. Have you yourself ever been tested for celiac disease?

No never .I know that there is a correlation between hashimoto and celiac that s why i was eating gluten free for a year.

[trents]

5 minutes ago, Papafma said:

No never .I know that there is a correlation between hashimoto and celiac that s why i was eating gluten free for a year.

But after one year you went back to eating gluten?

Another option I would suggest is that you consider is getting genetic testing done for both you and your son. There are two genes (HQ2 and HQ8) that have been tied to the potential for developing celiac disease.

[Wheatwacked]

2 hours ago, Papafma said:

my home country with experience in USA

The USA is the last place to take advice on choline. We don't even put choline in TPN because no one makes it here and can't import it so people die in the hospitals from non alcoholic fatty liver disease.

Rice milk can make Thiamine (B1) deficiency worse. Liver, eggs, lean beef, milk are good sources.

Quote

Choline is an essential nutrient considered to be part of the B-family of vitamins. It is necessary for the structure and function of all cells in the body and is especially important during periods of rapid growth and development including good brain development... A recent analysis of the Adequate Intake (AI) for choline has shown that approximately 90% of Americans, including pregnant and breastfeeding women are well below the AI. When diet alone cannot meet choline needs, supplementation will be needed.  https://www.naturesone.com/blog/what-is-choline-is-it-important-for-me-my-baby/

 

Quote

 

https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

Table 3: Tolerable Upper Intake Levels (ULs) for Choline [2]

1–3 years1,000 mg

4–8 years1,000 mg

9–13 years2,000 mg

14–18 years3,000 mg

19+ years3,500 mg

 

 

[Papafma]

1 hour ago, trents said:

But after one year you went back to eating gluten?

Another option I would suggest is that you consider is getting genetic testing done for both you and your son. There are two genes (HQ2 and HQ8) that have been tied to the potential for developing celiac disease.

Yes i went back .Actually I don’t have any symptom but i know that gluten generally is not that good so I wanted to try a gluten free diet.

[Papafma]

1 hour ago, Wheatwacked said:

The USA is the last place to take advice on choline. We don't even put choline in TPN because no one makes it here and can't import it so people die in the hospitals from non alcoholic fatty liver disease.

Rice milk can make Thiamine (B1) deficiency worse. Liver, eggs, lean beef, milk are good sources.

 

 

He is on rice milk only for 3-4 weeks just to make sure that is not neocate the reason for elevated enzymes.Then we need to find an other formula/hypoallergenic .I don t want him to stay on rice milk because of arsenic .

[Wheatwacked]

It is because the neocate has no choline. Rice milk has 2.1 mg/100 mg. Rice milk nutrition facts and analysis per 100 g

[Papafma]

8 hours ago, Wheatwacked said:

It is because the neocate has no choline. Rice milk has 2.1 mg/100 mg. Rice milk nutrition facts and analysis per 100 g

Is there a blood test to check his choline levels?

[Wheatwacked]

Thus, plasma measurements likely do not accurately reflect tissue concentrations of choline. An alternative functional marker for choline deficiency is needed in a readily accessible tissue...At present, there is no definitive clinical test that can be used to identify persons who are choline deficient. Choline deficiency increases lymphocyte apoptosis and DNA damage in humans

[Papafma]

Hi again!!!So after stopping neocate we retested my son. Liver enzymes were decreased but not to the normal.That was back on March.In August he was tested again and they were again elevated (also lipase).Since February has loose poop and blood in his poop( not obvious but confirmed from stool test).

i m so lost…He is gaining weight,no tummy pain and his antibodies for celiac are negative.We have an appointment with a gastroenterologist in November.just to mention that he eats gluten but not a lot. I think they will ask for liver biopsy and endoscopy… 

any thoughts?

im so lost