What To Look For In A Child Going Throug A Gluten Challenge?

[Mum in Norway]

My daughter is 2,5 years old. About 1,5 ago she started having strong reactions to gluten and dairy. She had diarrhea for weeks, lost her apetite, lost weight, was always sleepy and clingy and still never slept for more that two hours at a time, had stomaceaces, she stopped talking, stopped developing her motor skills, did not seek eyecontact etc. I took her to a health nurse (that in norway check up on little children to make sure the develope normaly for the first years). She arranged an appointment with a doctor who said she most likely had celiac, and told us to go to her GP for blood tests and a referral for an appointment with a specialist at the hospital. The GP testet, said test was fine and whatever was wrong would sort itself out. I still cut gluten and dairy from her diet, and two weeks later she had gaind lots of weight, her stool was fine, so was her appetite, she slept so much better, ate, talked, smiled and was HAPPY! I tryed giving her gluten again and she got ill. So I went back to the GP and told him this, and eventually he wrote the referral and sent it to the hospital. We never got an apointment, so this spring, after we mooved to a new place, I went to our new GP. He said she most likely has celiac and arranged an apointment at the hospital within weeks. There I talked to a doctor who wanted her to go on a gluten challange for 6 months! And only for him to prove that she does NOT have celiac. I said she would be very ill, and he said she could be amitted to hospital to controll the symptoms. I told him that was out of the question, that I would not put her throug that. I spoke with our GP again and we agreed to try a gluten challange, that we would stop at any momet if she got to ill, to see if she might have had somthing that she has grown out of or if not, to make it easyer to take new celiac tests. We also did this in january, the she got realy ill in just a few days. Now we have been at it for a little more than a week, and so far she seems fine! Well, almost. She has gotten ulcers under her tongue that are so painfull they keep her from eating, but they could just be from a cold, right? And also her scalp iches like crazy, most at night. But she has no rash or head lice. Are these just coincidenses or could they be reactions to gluten? She has never had these reactions before.

I feel this is all very colmplicated, and with doctors all having different opinions on what is- or isen't wrong with her, it feels like we're all just guessing. Anyone have a story similar to this?

(I'm sorry if spelling og grammar is bad, English is not my first language)

[pricklypear1971]

This board is full of people whose symptoms of glutening change over time. My symptoms, now that I'm gluten-free, have changed 3 times in a year.

Most people on a challenge find they are symptomatic, they just MAY be different than earlier symptoms. Her itchy scalp and tongue sores may be symptoms.

She may develop more classic symptoms as she goes along. She may develop new symptoms you'd never associate with gluten. Most of us, in retrospect, have had conditions that were caused or aggravated by gluten that we did not associate with gluten.

[lovegrov]

Mouth sores were one of my symptoms of gluten before I went gluten-free. Itchy scalp with no rash? Don't know. If she does have celiac, I expect you'll be seeing more symptoms soon.

BTW, if the sores are keeping her from eating, is that affecting the challenge?

richard

[Mum in Norway]

Mouth sores were one of my symptoms of gluten before I went gluten-free. Itchy scalp with no rash? Don't know. If she does have celiac, I expect you'll be seeing more symptoms soon.

BTW, if the sores are keeping her from eating, is that affecting the challenge?

richard

Yes, a little, but she has only had them for a few days. I'll be taking her to the doctor on monday to see if there is anything to be done about them, regarless of why she got them

[mommida]

When you are going through testing make sure the doctors are aware of Eosinophilic esophagitus (it appears Norwegian spelling is Eosinophilic Oesophagitis). There is now a known connection between Celiac and EoE. Gluten can be a trigger for EoE, and could explain why previous Celiac tests were negative. The symptoms for Celiac and EoE are surprising similar.

An Eosinophil is a very destructive white blood cell. (usually reserved to battle parasties) Once an eosinphil has been activated it stays active for 12 days. It can not discriminate from it's target and healthy tissue, so it destroys both.

I would keep a food journal to help track down food intolerances, reactions, symptoms, and activities.

If symptoms become to severe, seek medical treatment.