Dude note: I’m overwhelmed with all of your emails asking for support. I mean that in both a good way and a bad way. I’m overwhelmed that you would feel comfortable reaching out to me. But I’m overwhelmed in the sense that I now have hundreds of emails awaiting a response. I can’t get to them all but I’ll do what I can. For now, let me take care of 20 of them in 4 days. Five emails per day for four days. Here’s part 1.
My 14 year old daughter applied for a three week program at the university of Rolla in Missouri last October. We just received notification last Thursday that she was accepted into the program. It is such an incredible honor, but now it is clouded by….oh crap, how are we going to make this possible for her? I called the school and they reassured me that the company that provides the food is able to work with all kinds of allergies. Then the next question was….is your cafeteria educated because gluten free food is no longer gluten free with cross-contamination…blah, blah, blah? He wasn’t sure but was pretty sure there were others with celiac that have no problems. I’m sure there are others with celiac. But at what point do I let go and trust? I am my daughters advocate. What questions do I need to ask? I told my daughter 3 1/2 years ago when she was diagnosed, that I didn’t want celiac to stop her from doing anything. But I am just about sick because I don’t know how to handle this. Do you have any advice for my husband and me? Thanks!
“At what point do I let go and trust?”
“I told my daughter…I didn’t want celiac to stop her from doing anything.”
I think you answered your own question. It’s an honor that she was accepted. Don’t let celiac stop you. Take precautions. Educate the school as much as humanly possible, even if it means paying them a visit in person so you can see the cafeteria with your own eyes and guide them in doing things the proper way. Make sure they understand the severity of celiac and if she get’s sick, it could ruin her entire 3 weeks.
And…since it’s only three weeks…is there an alternative besides the cafeteria? Do everything in your power to keep her safe, but let her go. She earned this. And so did you!
My 4 year old daughter is on day 4 of a gluten challenge in order to confirm Celiac Disease before she starts school in the fall. The school won’t accommodate her dietary needs, otherwise. Do you or any of your followers have any tips or advice to help her through this other than the classic, “never trust a fart” routine? She’s obviously in a lot of pain and her mood swings are off the charts, in addition to her tummy troubles. She’s already very small (borderline failure to thrive) and she’s got hardly any body fat, and I’m concerned that several more weeks of this could do more harm than it’s worth for the “official” diagnosis. Can you share this with your readers? Because I need all of the help, advice, tips & tricks, etc I can get to help get us through to the endoscopy. Is there any other way to officially confirm Celiac so that I don’t have to keep torturing her like this? Please help!
If I’m reading this correctly, your daughter has all of the celiac symptoms but has not been officially diagnosed and the school won’t accommodate her unless she has an actual diagnosis? Ugh…that’s a tough one. Assuming the school won’t change their policy, here are a few thoughts:
– I’ve been put under for every endoscopy I’ve had. Therefore, it’s an absolute painless procedure. If being awake during the endoscopy is your concern (it sure would be mine!!), find a doctor that will put her under.
– I can’t imagine having to poison your child…just awful. So sorry you gotta go thru this. The hope is to minimize the discomfort as much as possible.
– If it was me, I’d stick it out, but I know it’s a lot easier for me to say that sitting behind a keyboard. Can anyone else chime in here please?
I was diagnosed with celiac disease last week following the diagnosis of my younger sister. I have no symptoms but was told by my physician that I needed to be tested regardless. Unexpectedly blood work and EGD confirmed that I have to go gluten free for life. I am wondering, should I stop gluten cold turkey or gradually remove it from my diet over the next 6-12 months? I still have some regular bread, pasta and baking supplies in the pantry that I plan to finish over the next month. I am already replacing what is used with gluten free substitutes for these things. My GI specialist suggested that weaning myself off gluten might be easier than stopping cold turkey if I don’t have any noticeable symptoms after ingesting it, but that I needed to get serious about it before the end of the year.
So I got to wondering, what your thoughts are on this idea of weaning myself off gluten over the next several months. Would my immune system cope better with this approach, keeping me from experiencing symptoms in the long run? I am committed to a lifelong gluten free diet by the end of the year. I just think that just a few months of farewelling my gluten help with both my immune system and psychology. Let me know what you think. Should I wean myself off gluten or go cold turkey on this one?
Wow…your doctor sucks. You have an autoimmune disease where your body is attacked when you eat gluten. You got the celiac diagnosis so the doc must have seen some damage during the EGD. So the fact that you don’t have symptoms is TOTALLY IRRELEVANT. Keep eating gluten…keep damaging your intestines…risk long-term damage. Your call.
I was diagnosed with Celiac a few weeks ago and have been navigating these new waters with the help of websites like yours and several books as well as a nutritionist. One thing I’m struggling with is answering the question of why I have to take the cross-contamination issue so seriously. I am one of those sort of-silent celiacs, where I thought I had moderate IBS but was living with it for so long it became just part of my daily life. Now that I have Celiac and I am trying to take it as seriously as possible, especially because my Dr. says it was “very severe” in terms of villous atrophy at the time of my diagnosis. Many folks in my life (especially colleagues) are asking me why I need to call ahead at restaurants and avoid fries and any possibility of cross-contamination etc. etc. especially because I wasn’t “on my death bed” before. So my 2 questions are: 1) Do I really have to be this cautious? 2) What do I say to those who ask me why I need to be this cautious?
You weren’t on your death bed YET. I know you are asking for permission to NOT be careful. It won’t come from me. But I think you knew that already.
Did you see the new trailer for Deadpool 2? The main character says “Sorry I’m late. I was rounding up all the gluten in the world and launching it into space where it can’t not hurt us ever again.” I’m so sick of this.
I did see it. And I’ve had a lot of my fellow celiacs send it to me as well. Every time this happens (and yes…it keeps on happening), it’s the same cycle. I call it out. Some people get angry. Some people tell me to lighten up. Lather. Rinse. Repeat. There is no solution except for Hollywood to get a soul…and new material.