Here's the quick version: started with a 2 1/2 year old.
-Super low Vit. D (it was at 7 or something, normal low was 35) Sent to Endo.
-Endo does Celiac blood work. 122 tTG. Sends us to GI
-2 GI's (I wanted a second opinion) scoped- Scope is negative for Celiac. Dr. Fasano said we can go gluten-free and see what happens or scope every 6 months.
-Do genetics DQ 2.5 positive
-gluten-free July 4th 2009.
-tTG fall but don't ever hit normal except once. Went through and tested suspect foods and also found thyroid issues. That was in 2011.
-tTG's STILL not normal. Head to "The Celiac Dr."
-After dropping $3000 for the trip and all associated things, they say "Oh it's been 8 months since last tTG. Get a new one BUT send it to The Mayo Clinic.
-Send blood work to They Mayo
So how/why would labs be wrong for 4 YEARS? These were drawn at different places. Not sure who processed them all but I'm at a loss and totally confused. Were the first labs even right? Should we have even done any of this? Any insight is welcome or Thanks for letting me vent. I'm sure I'll get a call next week that they want a 6-8 week minimum challenge and a scope at the end of that. Not sure what I think. Just beyond frustrated!
Why do things have to take SO long and be SO freaking difficult when dealing with this kinds of "stuff"? It shouldn't take a week and a half to hear back from a Dr. or for blood tests to be gotten. I should't have to do all this work. I am obviously willing to do the work but should I really have to? And WHY am I doing it? I feel like I am just spinning in circles and for no apparent reason.
Do I just stop? Do I stop trying to figure this all out for my kid and just go with what we're doing? I just don't know what else to do or how to get people to listen. I use to think i was a really great advocate for my kid but lately I feel like I am making him go thorough things that no 7 year old should have to. I'm starting to think it is all in MY head and not even his.
Sorry. Just really REALLY having a rough time these past few weeks. Thanks for letting me vent. I can't to DH, can't to anyone really IRL cause none of them get even a little bit of it...
My son and I went to Boston a few weeks ago to see Dr. Fasano. Aside from Celiac disease he also has life threatening allergies to peanuts, tree nuts, dairy and egg. This was the first time flying for us and the first time being out of town without access to a kitchen for more than a day.
We had an AWESOME time!! I had some help (Thanks again Gemini!!! My Boston personal trip planner )
We stayed at the Wyndham near Mass General. There is a GIANT Whole Food right behind that you can get to through the back door of the hotel!!! Awesome!
I shipped a Pantry box from the A place that is always bleeped out on here for spamming
Eating out: I will say that my kid doesn't eat out often. Our expectations are pretty simple, get my kid food he'll eat that is SAFE and we're both happy! Simple whole foods with minimal processing is a-ok to us!
Ruth's Chris Steak House on School Street- Went for lunch. He had a roasted 1/2 chicken and steamed broccoli. He LOVED the crispy skin!! (like i said, simple is great and no reaction is even BETTER!)
Legal Seafood- Long Wharf- AMAZING! I emailed them several weeks prior. On a Friday night the manager called me and assured me they could 100% accommodate him, he entered the reservation himself and told me that he would make sure he was on duty when we came! Can you say AWESOME! I looked at the gluten-free menu and saw fries- I held my breath as I asked my allergy Mom questions.
DS had grilled shrimp, FRIES, corn on the cob and grapes. He was in absolute HEAVEN! He wolfed it down in no time at all! I asked if he wanted anything else, more shrimp! Now on the second order they brought it with some kind of sauce. I sent it back and the manager assured be it was gluten free. I said what about all the other allergens, they again assured me it was fine...... I wasn't willing to test it so I asked if I could kindly just have grilled shrimp again and they got it for us and again, DS had it eaten in a minute! He asked to go back the next day
The Dean's List at the Wydham in Blossom St.- This was where we stayed. When we were returning from a long day on the way to eat crackers and cereal in the room the chef was talking with someone so I figured what the heck, I'll ask. He assured me he could make DS some chicken and broccoli (see a theme here?? lol It's what he eats at home at least once a week so he was excited to be eating it out! lol). We went upstairs and washed up and then came down for dinner. He again ate everything and loved it!!!
So being a first letting others cook for him several days in a row, they all hit it out of the ballpark! He loved every minute of it and while I worried after each meal as I always do, we didn't have any issues!!! We had an awesome trip and he's still talking about it!!
DS is 7, dx at 3 1/2 and gluten-free since. He also has life threatening food allergies to dairy, egg, peanut, tree nuts, banana and blueberry. Hypo thyroid which is controlled with meds.
He is so think it's like skin literally draped over bones. His tTG's are also a bit over "normal" after finally getting them down after years. Not sure why, nothing has changed in what he eats or procedure at school/home.
We don't limit what he eats but he doesn't really ask for much. He gets his three meals, an after school snack and a snack before bed. Sometimes seconds of breakfast and sometimes dinner too. I just can't help but think I'm missing something because this can't be healthy.