Question About Triggers

[kvanrens1]

So I have been in overdrive trying to learn as much as I can about gluten sensitivity and have a question about triggers.

My 8 year old daughter is adopted from China and has a whole lot of medical issues. Her lab results from Enterolab says that she is sensitive to Gluten, soy, egg, and casein and has DQ7 and DQ9 genes. Her blood test and biopsy are negative for celiac.

Her referral picture taken at six months old shows a healthy baby with chubby checks and alert eyes. We got a follow up picture when she was 10 months old and I really did not think it was the same baby. She was skin and bones (no more chubby checks) and her eyes did not have that same alertness. Of course by 10 months she was starting to eat solid food and she had chickpox as as an infant.

When we got her at 12 months old, she weighed less than 12 lbs. She definitely was malnourished but pretty common in international adoption. We took cheerios and snack crackers with us when we adopted her. And she ate a lot of them. When we brought her home she had an awful skin condition on her face (both checks looked like they had lots of small blisters). At the time, I chalked it up to a change in her diet (was it gluten?!) and change in everything in her life.

In August of last year, our house had substantial damage due to a storm and we had to move into a rental house. Within a week, she had painful small blisters all over her arms that itched like crazy and after they finally healed her skin was discolored.

Two pretty stressful events leading to a weird skin condition. I am just wondering if these stressful events could be considered "triggers" and led to these skin conditions (DH)?

Other medical issues:

Growth Hormone Deficient, Pancreatic Insufficiency (fat malabsorption), constipation, acid reflux, horrible stomach pain, mouth ulcers, severe lactose intolerance, and smelly flatulence.

All the dots from the past seven years are starting to connect. So stress can be considered a trigger right? Also, can gluten sensitivity be worse during stressful periods?

Thanks,

Kristy

[ravenwoodglass]

Celiac does usually require a trigger and an illness or severe stress can not only trigger celiac but contribute to excaberation of symptoms in those already symptomatic.

Even though she doesn't have either of the two genes considered in the US to be the main celiac associated genes she could still be celiac. Her DQ9 gene is the one I have a double dose of and it is considered a celiac associated gene in the Middle and Far East from my understanding and research.

False negatives are not uncommon especially in young children. You could get a celiac and DH knowledgeable dermatologist to biopsy next to any active lesions she has to look for DH, the skin form of celiac. A diagnosis of DH is a diagnosis of celiac even if all other testing is negative. Make sure the doctor knows that is what you are looking for as they need to be looking for it in the lab tests on the biopsy. If she is done with celiac related testing it is time to do a strict trial with the diet. Chances are it will help her a great deal.

[Skylark]

It is also possible to be celiac/gluten-intolerant from birth. In China she may have been getting rice gruel. You feed her wheat and out comes a rash. It does sound like the stress of moving might have triggered the second rash. Stress can trigger all sorts of medical conditions!

Have you taken her off gluten now that the testing is done? I sure hope it helps!

[mommida]

She made a full recovery after the illness with red cheeks?

Has tested showed the adrenals are functioning properly?

When you said testing was negative for Celiac, did that mean she had an endoscopy with biopsy?

Stress and any type of illness (most often associated to viral infection) can be triggers. Some say the cold virus can trigger Diebetes.

Leaky gut syndrome can wreak havok too.

[kvanrens1]

She has been on the medical testing roller coaster for 3 years and I am ready for her to get off. I feel like we have our answers - gluten sensitivity. Skylark, we are starting her on Gluten Free diet this weekend. I have so much hope that this will help her!!!

Kristy