So you've noticed by now the "Part 1" in the title of this post, if not look up a bit. There it is.
I'll begin by saying that we don't have all of our answers just yet. The pathology reports that will tell us the number of mast cells present will not be finished until the end of this week. So hopefully by Friday we will have that news and a clearer, more conclusive picture of what is going on. Until then we do know some things, not everything, but some things.
1 - It is an allergic reaction.
2 - Our GI doctor is proceeding with the diagnosis of Allergic Colitis.
3 - The allergic reaction is most likely to soy. Not totally surprising given the fact that 40% of people with a milk/dairy allergy also have an allergy to soy. Stella falls into that statistic.
4 - Removing soy from her diet, along with the inclusion of a hypoallergenic (and expensive) toddler formula will get rid of the symptoms and colitis.
That's about it. We have always suspected that it was some kind of allergy-related issue, now we have some proof. Colitis is not fun, but as far as colitis goes, allergic colitis is one of the lesser forms, mainly because it is reversible once the allergens are removed. Soy. Crap. She's been on soy milk for months (since we learned of the milk protein allergy) and recently (yesterday) developed a love of tofu. Oh well. Just something else she can't have.
Excluding a whole other food source from her diet is not something we were looking forward to, but is a relatively easy fix. However, in our brief research, we have found that soy is present in a lot more than you think. The animal crackers we just bought for her to snack on because they don't have milk? Yep, soy. Crisco and vegetable oil, used instead of butter? Yep, soy. Fast foods (not that we eat a lot of it)? Yep, soy. So, the task ahead of us isn't an easy one. Luckily we have been more adept at reading labels and enjoy researching so the learning curve shouldn't be too severe.
On a related note, and one I'd been meaning to blog about, we have decided to go (mostly) vegetarian for the month of June. I have always wanted to but Amy has been a holdout until recently. So far it has been great and we have been enjoying lots of new meatless meals. I say mostly because we do allow meat on one day a week, sort of like a "cheat" day on a diet; just to ease in. The boys haven't been as big of fans as Amy and I but we have tried our best to expose them to new foods while still making things available to them, like meats, so they can be happy. Stella, though, has thoroughly enjoyed it. She loved fruits and veggies so this was right up her alley. Now, it looks like we may be eating like this a lot more often once June has passed. Eating healthy isn't so bad and it's a helluva lot easier when you are also eating that way to ensure a family member's allergies are taken into consideration. So future for that looks bright.
The one catch to today's news is that it isn't final. Mastocytosis isn't totally ruled out yet. That will be made more clear, hopefully, with the remaining pathology reports later this week. Also, since it is such a rare disease and one that is very individual, there aren't super clear lines as to what numbers and levels should be in patients. So, the reports may lead to more questions and/or tests rather than answers. Hopefully not, but we will see.
For now I remain positive. We have answers, they may not be clear, but we have them. HE has at least given us some peace of mind while we wait for the other results. Thanks again for the continued thoughts and prayers while we brave yet another fun medical adventure. Keep them coming and I will, of course, update once we know more.
All is well, with a few answers, in Drosche Land.