Baby potentially Gluten Free - what do you think?

[Minimacles]

Hello, my 1 year old has had long standing soft stools and silent reflux his whole life.
He has been dairy free since early on (a few months old) however he has always had loose stools, light browny orange in colour, very smelly and poos 3-4 times a day.

After 11 months of no improvement his dietian asked me to cut gluten from his diet. It is only day 3. So what do you guys think here... does this sound normal or am I missing something?

He wakes up and does a solid poo now which is miraculous for us but then his poos get steadily worse throughout the day. His midday poo is the same as always and then his last poo of the day has been worse than our baseline - looser and today contained some mucus.

So in some ways it looks really positive (if you ask me in the morning) and not at all positive (if you ask me in the evening)

[trents]

Welcome to the forum @Minimacles!

First, I think you need to give it more time.

Second, you need to check everything you are feeding him for hidden sources of gluten. Most people starting on the gluten free diet have a very impoverished idea of the myriad of places gluten is tucked into the food supply and are also unaware of cross contamination issues. So, if others in the family are still consuming gluten you need to be careful about using the same utensils others are eating with when you feed him.

Third, is there a history of celiac disease or gluten sensitivity in either your or his father's family tree? I would consider getting genetic testing done to see if your baby has the potential for developing celiac disease. 40% of the population have one or more of the genes but if you don't have any of them the chances are very small that you have celiac disease. But he could still have NCGS (Non Celiac Gluten Sensitivity). Celiac disease genetic testing can be ordered by a physician or you can buy home genetic test kits online for around $200 that use a cheek swab.

Fourth, it is not uncommon for celiacs to cross react to other food proteins that are similar in structure to gluten. The protein in dairy and oats is a common one but also eggs and corn and soy. So, you might look at eliminating some of these other foods. About 10% of celiacs react to the dairy protein casein and the oat protein avenin like they do the wheat/barley/rye protein gluten.

Fifth, you may need to get him tested for celiac blood antibodies but this would require putting him back on gluten for a period of weeks. Antibody testing is invalidated by a gluten free diet. 

Edited June 3 by trents

[Minimacles]

Thank you for replying so fast @trents

1. Valid

2. Oat milk maybe?

3. His sister has gluten intolerance until she was 9 months old. She is 3 now and is fine. Father has some bowel/digestive issues but hasn't pinpointed it to gluten yet.
Thank you for the advice re genetic testing, I did not know this and will get this done. Are the online kits a reliable method for the results?

4. I hear you, cutting out more at this stage seems overwhelming but I will keep it in mind

5. I ruled out blood tests as I believed they were often inaccurate for someone his age 

any thoughts on PPIs and gluten intolerance? 

[trents]

Oat milk would still have the protein avenin.

Has dad had blood antibody testing done for celiac disease?

It is partially true that blood antibody testing can yield inaccurate results on young children but they can also provide guidance. When they are done, a more extensive celiac panel should be ordered which would include: 1. Total IGA, DGP-IGA, and DGP-IGG and not just the TTG-IGA test. Young children's immune systems are immature and may not respond in the same way to threats as that of adults so a more extensive panel can catch what the TTG-IGA can miss. Running the total IGA test for children is especially important because they are often IGA deficient which can skew the TTG-IGA down toward the negative range.

Here is a primer for antibody testing: 

PPIs are among the most overused (along with antibiotics) medications in the world. They are designed for short term use, like 8 weeks. Yet, physicians will prescribe them and leave them in place indefinitely without monitoring. As hard as this is to believe, low stomach acid is often the culprit in acid reflux rather than excessive stomach acid. PPIs raise PH (lower acidity) and may mask the issue. I was on a PPI for years and it took me about a year to wean myself off of it. Today I don't struggle with GERD as a celiac any longer. 

But wait a minute. Is the oatmeal you are feeding him gluten free? Unless it has been certified to be gluten free it likely is cross contaminated with gluten containing grains. They are grown together, transported in the same trucks, stored in the same silos and processed on the same equipment.

[Minimacles]

Yes father has had blood test taken tTG-IgA.

My son has been on a high dose of PPIs for more than half his life. In saying this my daughter was also on them until 9 months of age and weaned off fine and reasonably fast. We are not having such luck with my son. I am wondering that if it really is that Gluten is a intolerance, that that is why we cant get off the PPIs, because he is still getting reflux due to the gluten. How long after going gluten free would you try wean off PPIs?

[Minimacles]

Sorry @trents

I missed the last comment re oatmeal. I havent been feeding him any oats directly. Just oat milk with his puffed rice

[trents]

8 hours ago, Minimacles said:

Sorry @trents

I missed the last comment re oatmeal. I havent been feeding him any oats directly. Just oat milk with his puffed rice

But the oat milk is made from oats which can be a grain product significantly cross contaminated with wheat/barley/rye. Really, you need to make sure that everything you feed him is free from cross contamination with gluten. Is the puffed rice cereal you feed him gluten free? Understand that the main ingredient can be gluten free but if wheat/barley/rye gets inadvertently mixed in growing practices, transportation, storage, or processing it is no longer gluten free. This can be important, especially for celiacs on the more sensitive end of the spectrum.

I have no input about how soon to begin weening him off the PPI after going gluten free. Just as soon as possible. PPIs mask the real problem. My concern is that you have lowered his gluten exposure but may not have eliminated it. This would extend to medications and oral hygiene products: