Symptoms in 7 year old

[Mamaoffive]

Here is some backstory on my 7 year old- as a baby he was diagnosed with milk protein intolerance due to very mucus filled diapers along with blood in the stool. He was breastfed and then weaned at 1 and seemed to be able to tolerate dairy at that point. Since then he does still get mucus in the stool, frequent stomach aches, he is a very very slow weight gainer. He is 42lbs at 7 years old and in the 6th percentile. He is extremely picky and only has a few foods that he eats. 
My moms side of the family has a long history of not be able to eat wheat- noted in the family tree but I am not sure if anyone was ever diagnosed with celiac. My mom has been gluten free for around 10 years due to fibromyalgia, brain fog, and IBS, she also was never tested. 
At my sons well visit a few weeks ago the doctor ordered a “food sensitivities panel”. They called and said the only food that showed up wheat- and to remove it from his diet to see if it helps. 

I have not removed wheat yet because I called back and asked for a referral to see a pediatric GI. 
I am wondering if these food sensitivities tests are even reliable, and if you all think that he could possibly have celiac and is it worth seeing a GI over?

[trents]

1 hour ago, Mamaoffive said:

Here is some backstory on my 7 year old- as a baby he was diagnosed with milk protein intolerance due to very mucus filled diapers along with blood in the stool. He was breastfed and then weaned at 1 and seemed to be able to tolerate dairy at that point. Since then he does still get mucus in the stool, frequent stomach aches, he is a very very slow weight gainer. He is 42lbs at 7 years old and in the 6th percentile. He is extremely picky and only has a few foods that he eats. 
My moms side of the family has a long history of not be able to eat wheat- noted in the family tree but I am not sure if anyone was ever diagnosed with celiac. My mom has been gluten free for around 10 years due to fibromyalgia, brain fog, and IBS, she also was never tested. 
At my sons well visit a few weeks ago the doctor ordered a “food sensitivities panel”. They called and said the only food that showed up wheat- and to remove it from his diet to see if it helps. 

I have not removed wheat yet because I called back and asked for a referral to see a pediatric GI. 
I am wondering if these food sensitivities tests are even reliable, and if you all think that he could possibly have celiac and is it worth seeing a GI over?

I believe food sensitivity tests measuring reactions that happen in a different immune system pathway than is engaged by celiac disease. Celiac disease is not an allergy. It is an autoimmune condition and is diagnosed by measuring IGA antibodies. I could be wrong, but I think food sensitivity tests are just allergy tests and measure IGE antibodies rather than IGA antibodies.

Edited June 25, 2021 by trents

[Scott Adams]

Welcome to the forum! It's definitely important for your child to be screened for celiac disease using a blood test BEFORE he goes wheat or gluten-free. Now would be a great time to do that, and you may already know that celiac disease has a genetic component, so it's certainly possible that your mother has it and is self diagnosed. If your mother has it, you have an ~44% chance of also having it.

Food sensitivity testing, at least the type I tried (ALCAT), does not use IGE, but "The ALCAT test analyzes the white blood cell (leukocytes) responses to blood that is incubated with extracts of foods, molds, chemicals/food additives, antibiotics and preservatives, and the company claims that this process can identify food intolerance issues that can trigger inflammation in sensitive individuals."

 

[Posterboy]

11 hours ago, Mamaoffive said:

Here is some backstory on my 7 year old- as a baby he was diagnosed with milk protein intolerance due to very mucus filled diapers along with blood in the stool. He was breastfed and then weaned at 1 and seemed to be able to tolerate dairy at that point.

MamaOffive,

It could still be the Dairy (Most Likely Casein).....and not Lactose as is commonly believed...

Here are two article that might help you.

From not only a gluten issue but a Casein issue as as well...

And this article about what else including a Casein intolerance can cause Villous Atrophy...

Here is some of the original research on  the topic not suprisingly 15+ years old and the doctor's have not put the pieces together yet....

Entitled  "IgA anti-gliadin antibody immunoreactivity to food proteins" including Casein's in approx. 40 percent of Celiac's...

https://www.tandfonline.com/doi/full/10.1080/09540100400003204

Just read the abstract.....and what was surprising to me....not that Casein as Cow's Milk Protein aka CMP in the literature but that Goats' milk (thought to be more human like than's Cow's milk) is even higher in reactivity...

See also this recent pure research about this topic....Knitty Kitty first cited this work but it stuck with me...

Entitled "[Anti-tissue transglutaminase antibodies not related to gluten intake]" but from Cow's Milk Protein and more accurately Casein!!!

https://pubmed.ncbi.nlm.nih.gov/29555204/

And what they proved IMHO was quoting from their conclusion that Cows Milk Protein IE Casein can cause a Celiac to react to Cows Milk as if it (they casein) were gluten intstead...

"Conclusions: CMP ingestion after an exclusion diet can induce an increase in anti-tTG in some coeliac subjects. CMP can produce this immune response if there were no gluten transgressions. This response has also been observed in non-IgE mediated CMP allergy patients with the susceptibility haplotype HLA DQ2/DQ8."

And IMHO is why many people and children following  a strict gluten free diet can still have a reaction to Milk (again probably Casein) in their diet triggering a Cross Contamination like reaction....

When it would be best to completely REMOVE Casein from their diet too to see if the Cross Contamination issues don't also get better....at least for a "Season in Time" to see if they  are also reacting  to dairy products still in their diet on a gluten free diet....

3 to 6 months would probably be long enough to see if your son's health improves after going Dairy/Lactose/Casein Free....

In Short, MamaOffive your baby may not be as "over" his milk intolerance as you think....

I was your son too.....they told me I grew out of it around 5 years old (and is typically what you find quoted)....that we grow out of it by the time children are 5 years old....

Or is it really still causing problems and the doctor's don't realize it .....most (approx. 40 percent) don't ever grow out of their Casein Intolerance....and then go on to develop a Gluten Intolerance too?

I hope this is helpful but it is  not medical advice.

Posterboy,