21 Months Old And Confused About Next Steps

[Seton]

Hi everyone, first post here and I will sincerely try to be brief

My son is 21 months, still breastfeeding, on a gluten, dairy and oat free diet. I went gluten and dairy free when he was 2 months old as he was having intestinal issues. We have been gluten "free" ever since, but I have never concerned myself with cross contamination. He is on the small side and grows very slowly, but he IS growing. The following is a summary of unusual events in his life:

Reflux from 3wks of age until elimination of dairy and gluten. Returns when mistakes occur and he or I consume milk products.

Torticollis diagnosed at 5 months. Physical therapy to correct

Two seizure like episodes at 6 months. Neurologist and ped determine it is Sandifers syndrome from the reflux (episodes occurred shortly after I consumed dairy)

Heart murmur detected at 12 months.

Anemia suspected at 12 months but can't confirm due to lab error.

Oat and pear allergy diagnosed at 15 months.

Severe tooth decay within weeks of first tooth eruption.

Severe Anemia confirmed at 19 months and cardiologist believes heart murmur is caused by anemia.

I am looking for advice about how to proceed. I strongly suspect celiacs but wouldn't we have been able to avoid all of these effects since we have been gluten-free almost since birth? Or is it truly possible the trace contamination is enough to trigger this damage to his gut in such a short time? At thanksgiving he was given a corn muffin by a well intentioned relative and he had absolutely no reaction to it. That was the first time since he was 7 months that he knowingly had gluten. When he had barley at 7 months he screamed in agony for an hour, so I was shocked that he did not react.

I'm just questioning everything! My gut says celiac, but does that align with the picture I have outlined? His doctor is willing to test for celiacs (mainly because i am asking) but I'm not sure I should add it to his diet.

Thanks for any advice you can give!!

[Ollie's Mom]

Hi there,

Unfortunately, I don't have much advice for you, but I did want to have some sort of reply for you.

In my experience, the "mommy instinct" is usually on to something. Whether or not I think your LO has celiac, I can't answer, however.

I do have a friend (now in her 30's) who has severe difficulty with dairy proteins (gets rashes, acne, congestion, nausea, vomiting, D, migraines, etc, the list goes on and on). She has to avoid even trace amounts of dairy (even if something is processed in a facility that also processes milk products). She also has some minor discomfort if she consumes gluten (a bit of blaoting, maybe some D) but does not have celiac. She can get away with picking croutons off a salad or having small amounts of soy sauce, for example, whereas I cannot.

I guess what I'm getting at is that yes, trace amounts of something can cause problems for some people, but the foods that affect them can be very different. So for your son, he may not do well with gluten, but it might not be something that needs to be totally eliminated. It might be dairy. Or something else. Or maybe it is gluten.

Given his history of severe reactions to dairy, I'd personally be looking to eliminate all possible sources of dairy cross contamination first. Was there dairy in the corn muffin? Did someone put butter in the muffin tin so the muffins wouldn't stick?

If you suspect dairy may be the bigger culprit, a bit of a gluten challenge may not be a bad idea. But I wouldn't totally rely on blood tests or biopsies to rule out celiac in your little guy, since testing is so unreliable in young children, especially if they have been consuming gluten for only a short period.

I'm sorry I couldn't be of more help.

Good luck!

[mommida]

You have to be working with a pediatric gastroenterologist. With the "reflux", close symptoms to Celiac, and food (protein) "triggers" it does sound like Eosinophilic Esophagitus. (There is a connection between the 2 and my daughter has both.)

Has a hernia been completely ruled out?

My kids also had missing tooth enamel, which makes them cavity prone.

[Seton]

Thank you for your responses!

Ollie's Mom, we are super careful about milk products because our older daughter also has a dairy allergy. The corn muffin was prepared by a severely dairy allergic family member so I am confident it did not have any dairy. You raise a good point though and maybe I am overlooking some trace amounts. Thank you!

Mommida, thank you for your suggestions. They really strike a chord with me because we have not ruled out either. My daughter had similar symptoms to my son when she was young and we did have a barium X-ray and upper endoscopy which did not show a hernia or the EE. The doc and I jumped to food allergies since that was my daughters history and we did not rule out the other options. So maybe it's worth pursuing now. The problem I have with that is that he is no longer unhappy or in pain...he is a happy happy kid ever since we eliminated his food triggers. So I think that is the crux of the issue for me...he is happy and not affected in personality, but still seems to be having lingering health effects that make me question things.

Thank you both! I hope to find answers soon.