Child with celiac disease and ongoing symptoms

[Wibbli]

Hello all,

My 6 year old daughter was diagnosed as celiac in April this year following a year of heartburn which started after a bad stomach bug. With this bug (which started in Feb 2021) she had awful headaches, sickness, generalised pains, vomiting and stomach aches. 
After a year of back and forth to the GP, a blood test in April this year showed a TTGA of well over 200 so a biopsy was not required (my local hospital wrote to the childrens hospital in Bristol in UK and they said a biopsy was not needed due to high TTGA).

My daughter hasn’t had a headache since October 2021 but has recently had quite a few (30th August, 4th Sept and 9th Sept). She had covid back in the first week of August (2022) and only symptom was a headache. 

We are trying to be very careful with her food (my son is going for a biopsy as he had a TTGA of 49) so we have gluten in the house but I try to be extra vigilant with my daughter.

My question is this; can children / people with celiac disease still experience headaches when they cut out gluten? She was at a party last week and the party host had gluten free food but she ended up with awful stomach ache afterwards so I was worried there was gluten crumbs in contact with the food.

Her head pains are generally mild and are located above her right eyebrow, forehead or left temple and last a few minutes and are not severe. 
 

thank you. 

[trents]

1 hour ago, Wibbli said:

Hello all,

My 6 year old daughter was diagnosed as celiac in April this year following a year of heartburn which started after a bad stomach bug. With this bug (which started in Feb 2021) she had awful headaches, sickness, generalised pains, vomiting and stomach aches. 
After a year of back and forth to the GP, a blood test in April this year showed a TTGA of well over 200 so a biopsy was not required (my local hospital wrote to the childrens hospital in Bristol in UK and they said a biopsy was not needed due to high TTGA).

My daughter hasn’t had a headache since October 2021 but has recently had quite a few (30th August, 4th Sept and 9th Sept). She had covid back in the first week of August (2022) and only symptom was a headache. 

We are trying to be very careful with her food (my son is going for a biopsy as he had a TTGA of 49) so we have gluten in the house but I try to be extra vigilant with my daughter.

My question is this; can children / people with celiac disease still experience headaches when they cut out gluten? She was at a party last week and the party host had gluten free food but she ended up with awful stomach ache afterwards so I was worried there was gluten crumbs in contact with the food.

Her head pains are generally mild and are located above her right eyebrow, forehead or left temple and last a few minutes and are not severe. 
 

thank you. 

Welcome to he forum, Wibbli!

One thing you need to realize is that celiac disease generally doesn't occur in a vacuum, isolated from other medical problems. Celiac disease may not be the cause of these other problems but one presentation of a deeper immune system dysfunction that simultaneously creates other medical issues that present along with celiac disease and so not necessarily a response to gluten ingestion. It would be fair to say that whereas many medical problems reflect an impaired immune system, in some ways celiac disease is the opposite. That is, it reflects a hyper vigilant immune system that often, in time, generates other autoimmune medical issues. 

All that to say that if gluten is totally avoided you may see improvement in these other symptoms (such as headaches) but not total release. Gluten and celiac disease may only be a part of the immune system dysfunction puzzle but it is a piece you have much control over.

Headaches/migraines can also be triggered by many other things including a variety of foods and environmental agents. I suffer from them myself and I believe the cause of it is "histamine intolerance" in my case. This is another issue that is common to the celiac community. 

The other thing to look at is foods that mimic a celiac reaction. Most commonly, dairy and oats (even glute free oats). These two food contain proteins similar to gluten that generate that cause problems for many celiacs. About 50% of celiacs are going to have issues with dairy.

Edited September 9, 2022 by trents