6 year old with symptoms

[Esmith]

Hi,

I'm new on here and wonder if anyone can help with what to ask gastroenterologist at my daughter's next appointment.

My daughter is 6 year old, she has always been slim (around 2nd to 9th percentile) but has now dropped to around.0.4 percentile for age. She has been complaining of abdominal pains, nausea and bloating on and off for almost 2 years. She was originally tested by blood test (negative) 2 years ago and referred to ent for large tonsils and probable sleep apnoea. She had sleep studies and they decided symptoms were not bad enough to remove tonsils. She was having a lot of tonsillitis but not for past 2 years.

She is eating more in the past 18 months than she has for many years and we are encouraging her to eat as much as possible, full fat milk, supper, lots of snacks, peanut butter, ice cream etc. She still fails to gain wait and has daily stomach pains, she is now complaining of dizziness for 6 weeks and no doctor can give us a cause. She was anemic 2 years ago but resolved with iron.

She saw a gastroenterologist 2 months ago who did further bloods which came back negative. I should say at this point my father, uncle and cousin have coeliac. The gastroenterologist has sent her back to ent for possible removal of tonsils. 

We do have a review appointment with gastroenterologist in 2 weeks. The paediatrician who monitors her weight wants to push for an endoscopy, should I push for this ( obviously don't want to put her through this unless I have to), should I try her on gluten free diet, what questions should I be asking the consultant? Anyone have this experience with a child?

Many thanks to anyone who can help

[Ennis-TX]

I would push for retesting the blood, and a endoscope with biopsy. Some celiacs, will not test positive on the blood test, and have to have the endoscope done and biopsy to confirm. With it in the family, all her symptoms I would say she probably has it or has Non Celiac Gluten Sensitivity. Keep her on gluten and get the full testing done and push for a endoscope.
Open Original Shared Link
For now to help your daughter out with the tummy issues, remove dairy for a week, also go easy or lay off the peanut butter and go with almond butter instead. Dairy is a very common issue with celiac, if she has the damaged vili then she is not digesting it properly as she will have enzyme issues. SO sort of a moot point eating it just causing more distress. Peanuts are a legume and hard to digest, almonds while also hard to digest are more nutrient dense then peanuts with more vitamins and minerals to benefit growth. Remove dairy and go with almond or cashew milk, they make some good ones with added protein, that might help her put on some weight. Pumpkin seed protein powder in smoothies or in coconut milk based yogurt to get some magnesium, iron, and zinc in there to build up more muscles will help. Try some digestive enzymes and upping her fat intake with avocado, almond butter, coconut milk soups, yogurt, smoothies. and snacking on more nuts and seeds. You can get more calories in with fats then carbs and they are better for building up the body. Good amount of leafy greens also with high vitamin A and K, and perhaps some vitamin D drops. These should cover nutrient issues and promote building up more.

[cyclinglady]

Exactly which celiac blood test were done?  Not all celiacs, especially small kids, test positive to the TTG.  Ask for the DGP and EMA instead.  

[Esmith]

Thanks, Ennis TX. Very useful post. I had thought Dairy may be an issue, but seems so hard to eliminate! She does take multivitamin with vitamin D but we do need to readdress her diet, funnily no one refered us to a dietician.

Thanks Cyclinglady, I don't know what bloods were tested as only got a letter to say negative blood tests. Will ask at her review appointment. I know basically he said if bloods were borderline would arrange endoscopy but if negative then not.

Thanks for the replies

[Ennis-TX]

26 minutes ago, Esmith said:

Thanks, Ennis TX. Very useful post. I had thought Dairy may be an issue, but seems so hard to eliminate! She does take multivitamin with vitamin D but we do need to readdress her diet, funnily no one refered us to a dietician.

Thanks Cyclinglady, I don't know what bloods were tested as only got a letter to say negative blood tests. Will ask at her review appointment. I know basically he said if bloods were borderline would arrange endoscopy but if negative then not.

Thanks for the replies

If you need help I can tell you subs for everything lol. Lactose intolerant for over a decade here and got a whey allergy later. I still eat vegan cheese daily, and drink and use almond/coconut/cashew/macadamia milk in everything. I even use coconut oil from nutiva that is butter flavored in my baked goods even in my bakery. New more calories? Try almond or other nut butters tons of them there, and remember to eat a varied diet with plenty of leafy greens etc. Simple stews, soups, etc are easy on the tummy with meats, veggies etc.
I do chef work and run a bakery all gluten, dairy, corn free....I can pretty much track you down anything and help you find substitutes. I am good at helping others find foods and cope with this.