Advice For Testing A 14 Month Old

[New-Mum]

I posted this in the "coping" section, but perhaps this area may have additional advice.

My son is 14 months old. He has several food allergies; Dairy, Oats, Peanuts. He also reacts to wheat, (tested negative to a wheat allergy), it is assumed that this reaction may be due to cross contamination of oats into the wheat supply or possible celiac. That being said, do to his "Failure to Thrive" issue & how he has been reacting to wheat the doctors want to test him for celiac disease.

From what I have read you need to eat gluten in order not to have false negative results. The problem is that my ds is only 14 months old & due to getting sick in the past REFUSES to eat any wheat or grain products. He is very afraid of most foods & it is a fight to get him to eat foods that he doesn't trust. He keeps his lips tight together & if you can get a new food in him he makes himself sick. Now that we know about his allergies we do not force him to eat new foods, but slowly are encouraging him to eat new foods. That being said, there is no way that we will be able to get any form of wheat into him. And because wheat causes him pain, we are very concerned about trying to force him to eat it.

Our doctor is looking into this for us (they have no experience with this), but thought that someone here may have experience with this. Has anyone else experience this or how this could be handled? Do you have any advice for me about the testing?

[Ursa Major]

Testing for celiac disease is extremely unreliable in children under six at the best of times. There is no way your son would test positive, even if you manage to force him to eat wheat for a limited time. Damage needs time to build up, and young children usually don't test positive unless they are pretty much near death.

Really, you know that wheat hurts your son. He is right in refusing to eat foods that hurt him, I wished many people older than him (including adults) would be as smart. If it hurts you, don't eat it. Smart boy.

I say, forget about testing and an official diagnosis. You know he shouldn't have gluten (try taking all wheat, rye, oats, and barley and everything containing gluten out of his diet to see how he does), so don't give it to him.

Failure to thrive is the most common symptom of celiac disease in small children. Please take him off all gluten, dairy and soy and I bet he'll start growing and thriving within a month. If he does, you have your answer, as the diet is the only reliable test in children that young.

The reason for taking dairy out is, that it can hinder healing. You can try reintroducing it after three to six months to see how he does with it. If he reacts, then you know he shouldn't ever have it.

[Worriedtodeath]

We started this when my little girl was 12 months old. By 18 months it was decided we had to see a gi and do the scope to test for Celiac. Despite being on a heavy gluten diet for 96 days, she did not test positive either biopsy or blood. THe gluten challenge only worsened our daughter's problems. She is deficient in fat soluble vitamins to the point we are now concerned of soft bones and doing TONS of supplements to get those level ups. She is very very very very underweight and barely on the growth chart. She developed lactose/dairy protein problems and her sugar absorption levels were low to abnormal across the board. Developmental delays were huge and glaring. Emotionally she was a wreck and absolutely horrible child to be around. Before the gluten challenge she wasn't like this.

I finally said enough when the gi said just continue on the path we are on and we will see ya in a year. I pulled her complelety of of gluten, dairy a couple of weeks later and we still struggle. The diaherra cleared up very quickly but it returns with a vegance for so many reasons. Feed her watermelon and peanuts in the same 24 hours period, give her too many gluten free grain products (homemade I don't buy anything premade gluten free or not) , corn and squash together, the list goes on and on. I have to be very careful with her diet and make sure I feed her certain foods alone and avoid certain combinations because her gi tract is just that screwed up. It can't handle much and we balance food carefully around here.

Silver lining part is after 4 months, diaherra is rare, so I have finally managed the correct "balancing" act with her food. We know if she eats watermelon (her favorite fruit) don't feed her any grains,corn, peanuts, cahsews or beans for 2 days to make sure the watermelon is out of her system. And so on. She gained a total of 3 lbs and grew 1.5 inches during this time after NO growth since her 12 month visit. She just turned 2. So she is on the upswing. The delays are gone! and she is even catching up to being advanced like she used to be. And she is simply a delight to be around. The FTT has been reversed.

As to any advise..... honestly if they really feel it is caused by wheat, follow a strict fruit veggie simple meat diet for 2 months. Cut out everything and keep the diet as simple and non processed as possible. And then see how he does. IF he begins to grow, eats without problems then you have a far better answer than the drs can give. It's just doing a challenge at his age can leave you with far worse problems that create way more work and effort to clear up then just removing gluten to begin with and living without a dx. If you or he ever feels the need to have a dx, then address that when you come to it. After going thru it with mine, I would just live without gluten. WHen they leave home, they can upset their own tummies and decide for themselves. By that time, their tastebuds will be so unused to wheat, it won't taste as good as they think!

Stacie

[mommida]

You can try genetic testing to see if your child has any of the known Celiac genes. It won't be an "official" diagnoses, and will not be 98% accurate either. Long story but after Prometheus labs did the testing and we had questions, they feel any blood drawn test has at least a 30% error rate.

It is up to you how to proceed, but sounds like you know ingesting wheat is out the question. You, unfortunately, will have some accidental gluten in your life and can determine from those accidents if all rye, barley, and oats are an issue too.