Celiac Testing For A Toddler?

[natalie6691]

Hi,

I'm new to this forum, so I'm sorry if this is in the wrong place.

My daughter is 19 months old. She was diagnosed with a milk intolerance at 4 months old and was given prescription milk (Nutramigen). The 2 weeks after starting on her new milk, she improved a lot. Then we started weaning her and through her symptoms we discovered she reacted to wheat, soya, gluten, milk and berries.

The pead we saw said it was pointless having her blood tested for allergies because there is always a chance they can come back negative when we know she has a clear reaction. He also said you can have possitive results from allergies you don't have. We decided to keep going as we were and introducing specific foods at seperate times. The last type we tried was gluten 2 months ago and she reacted as normal. Reactions bring her eczema out all over her arms and leg (sometimes on her chest and neck), an upset tummy, nappy rash, runny and smelly nappies.

We've recently seen a new pead because we have moved area, and he mentioned the blood test. He also said there wasn't much point in the blood tests, but talked about a test to perform for celiac disease. He explained we would have to feed her gluten products for 3 months and then she'll be put under general anesthetic(sp) to have a biopsy of her gut taken.

Has anyone had this done? Please could you reply with some information about preopration, the procedure and recovery?

My partner and I don't know what to do for the best. We know she cannot have it done until at least she is 2 years old, so we still have a few months to think about it.

Part of my doesn't see the point. Why put her through all the pain and upset of eating gluten and then going into theatre when we know she reacts? The other part of me thinks we should just carry on as we are, introducing gluten in between introducing the other foods she is allergic to.

Thank you for reading and for any replies. Sorry if it doesn't make much sense.

[Jungle]

It seems like Dr's sometimes forget that although these tests are routine for them. It is our BABIES. And maybe we should start simpler. If she reacts on gluten then why would you mess with her system when she is so little.

3 months of her reacting seems like a lot of pain, and tears for something which you already know. She does react to gluten.

It seems like too much for such a little one. If after a few years (when she is bigger and can communicate well) they want to try and see if they can get a diagnosis then that is one thing. But it seems like torture to sign up a wee one for 3 months of eczema and and upset tummy, and diaper rashes to confirm what you already suspect.

[natalie6691]

Hi Jungle,

Thank you so much for the reply.

To be honest, I think you have summed up how I feel. She is a baby, and it's not fair on her to have this test without being able to understand what it is for and why. If it is something that she HAS to have, it woudld be a different matter but we can live without it, as we have done for months already.

I think my mind is pretty much made up now. We already have certain foods on prescription without having any tests, so as long as we can still have them (which reduces our weekly food shopping bill by around

[mommida]

It seems like you have made up your mind.

I will tell you about putting our daughter through the gluten challenge. She was about 15 months old and still in diapers/nappies. She ended up with a urinary track infection and was hospitalized for dehydration (3 days on an IV). The blood test was taken the day before she became so ill. She was too sick to do the endoscopy with biopsy. The results from the blod test came back as positive only in one of the panels the day we got home from the hospital.

She had the genetic test done on a gluten free diet and she was positive for both DQ2 and DQ8. Diagnosed "probable Celiac" because she did not have "gold standard" of tests when she was 17 months old.

Life was great on the gluten free diet until she was 6. Celiac-like symptoms started up and seemed worse and she was vomitting up to 5 times a day. She had the endoscopy with biopsy and was diagnosed with Eosinophilic Esophagitus.

There may still come a time for an endoscopy with biopsy in the future. For now you are your child's advocate. I wish I hadn't given her gluten for the blood tests. As it turned out it did make her too sick to have the endoscope, like I thought. At least you can request the genetic test. It is not a perfect test, but you do not have to consume gluten.