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Hello world!

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9 years 11 months ago - 9 years 11 months ago #42359 by Keli
Hello world! was created by Keli
Hi everyone, I have been lurking for a few days now and decided to drop in. We found out our 6 year old son had ITP about a year ago and its been a year of learning and fear and relief and ups and downs.

When we first found out the doctor noticed in his blood tests that he had an allergy going on as well. I was worried because Celiac and gluten sensitivity runs in our family big time. My mom, my sister, and my niece all have it. So the first thing I wanted to do was test him for celiac. The blood test came back negative but it showed low to moderate allergies to a number of foods: wheat, peanut, walnut, egg, soy, cow milk, almonds, and egg. He always had an egg allergy and didn't eat eggs.

However, both his allergist and his pediatric hematologist told me that if he has never had a reaction to any of the foods (besides eggs) that they saw no need to eliminate it from his diet. I was relieved he didn't have celiac and believed them and we continued to eat peanut butter jelly sandwiches and milk as normal because he never had any immediate outward reaction. I feel like an idiot now. From what I have researched at this site and more, food allergies are extremely common in ITP and anything that aggravates the immune system or causes inflammation (even if its not outwardly on his body right away) can cause his body to attack his platelets even more aggressively. Most of this year he has not been over 30k platelets, except immediately following IVIG but they tank again so fast that its almost pointless. We have just started the rituximab and i hate that he is having to go through this.

Anyways to get to the point, yesterday I went through the pantry and threw almost everything away. Bought Rice milk, sunbutter (which he hates) and gluten free bread, (which i belatedly saw contained egg so i need to go back and get the egg free brand or make my own.)
My family thinks I've gone crazy and that I'm being paranoid but to me it makes perfect sense and I'm kicking myself for not doing it sooner. I am miffed that his allergist and doctor poo pooed any food allergy connection and seemed to dismiss it. I'm just wondering what anyone elses experience has been with food allergies and if I eliminate every allergen it can do nothing but help right?

It has been a relief to find this site and know there are other people who have gone through exactly what were going through and i just wanna give you all a big hug :)

Keli

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 11 months ago #42360 by Sandi
Replied by Sandi on topic Hello world!
Keli:

I do agree that if a person shows an allergy to something, it could cause a problem with the immune system. I also believe that many doctors are clueless about it. However, don't beat yourself up. ITP may have happened anyway, and changing his diet might not fix the problem. It could, so it surely won't hurt to try it. Changing his diet might also prevent something else from happening, or at least delay it. Good luck! I've tried gluten free and it's hard!
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