Food Allergy
twoasone1
member
**macaroni19**
twoasone1
member
in Food Allergy
Did you ever get a chance to ask your doctor about testing for an Eosinophilic Disorder? I was just thinking of you and wanted to check in. Let me know if you have any questions as well. My son has Eosinophilic Esophagitis.
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Re: **macaroni19**
Funny that you posted, I was just googling about eosinophils, infant colitis, etc... I gave DS pasta the last few days and he has done fine (so exciting). So today, I tried whole wheat bagel (never tested positive for celiac disease or gluten allergy) and he just screamed for the last hour. Just got him back down. I have been waiting for the allergist to call us back with some blood test results, but I am calling tomorrow to schedule an appt, this is just awful for him. He was truly in pain tonight and the only thing I can do is bounce, bicycle his legs, rub his tummy... Just waiting for round 2 to start.
I will definitely find you if we get referred to a pediatric gi. I have been wanting to go to one, but my pedi said if he there was something wrong, he wouldn't be gaining weight. I just don't believe that. I need to find out what is wrong with my son. I really think it is more than a food allergy. And the last week, he has started spitting up randomly. He hasn't done that in months! Not sure if that is related to his tummy issues, but it seems odd to me.
Can you tell me what the process to your diagnosis was like? What his symptoms are/were? I would love to hear everything you are willing to share! Thanks for thinking of me! Also, do I talk to the pedi or the allergist about an EOS disorder?
Oh no! I am sorry that he isn't tolerating the bagel and it made him hurt
My daughter was tested for EE and what they did was put her under in order to look at her upper and lower intestines and stomach with a scope and take samples from each in order to look for eosinophils. She, fortunately, tested negative.
I am sure twoasone will be able to give you much more insight, but I just wanted to share our story. We talked to the pedi and allergist about the EE testing. In fact, it was her dermatologist that suggested it.
It was a long process. We saw a Pedi g.i for ten months before getting a diagnoses. They tested him for everything under the sun. Eosinophilic Disorders can be hard to diagnose. The only way to know is to have a scope and biopsy of the digestive done. They then measure the level of Eosinophils present (if any). My sons levels were off the chart in his Esophagas where there shouldn't even be any. So he has Eosinophilic Esophagitis.
The symptoms are dysphagia, food impactations, vomiting, failure to thrive, constipation, food aversions, reflux that doesn't get better with normal treatment, bloody stools, stomach and chest pain, and difficulty sleeping.
We are just starting to add one food back in every six weeks. After the six weeks, he has another scope and biopsy done and that is how we know if the food is a safe food or not. We are trialing pears right now. People with EoE tend to have the biggest problems with proteins, so we are saving those for later in our trial process. For now, he gets Neocate Jr., mixed high calorie, in his feeding tube. It tastes horrible and that mixed with his horrible food aversions made a feeding tube neccessary for us. Not all kids with EoE need a feeding tube as there are different levels of severity. Unfortunately, my DS has a pretty severe form.
A GREAT site to check out for more information and to get a list of great doctors experienced with Eosinophilic Gastro Intestinal Disorders (EGID) is www.apfed.org. If I were you, I would insist that your pedi gives you a referral to a pedi g.i. At least then you could have peace of mind. Good luck!