After being sick for more than a year and ignoring Mrs. Dude’s plea to go see a doctor, I was finally diagnosed with celiac disease in September of 2007. You know…back in the days when nobody knew what gluten was and I was actually taken real seriously when I went out to eat. Ah…the good old days, but I digress.
The assumption I had was that I’d eat gluten-free and I’d start to feel better immediately. I’d done a bit of reading before my final diagnosis and to a tee, pretty much everyone said they noticed a difference right away. Why would it be any different for me?
So I went gluten-free the day of my diagnosis and I waited to feel better…and waited…and waited…and waited.
Immediate my a**. It took me over a year to truly begin to feel better…and that was only after I made some other diet changes (see below)
Why do I bring this up? Because I just received an email from a mom whose 6 year old daughter was recently diagnosed with celiac and everyone is getting frustrated because she is not feeling better on the gluten-free diet after a few weeks.
Here is her email to me:
I just came upon your blog by happenstance and I’m so glad I did. I have spent quite some time this afternoon (not doing what I’m suppose to be doing) and reading various blogs/rants on your site. I thank you first and foremost for your wit and sense of humor because at this time I really need it.
A little about myself: I am a mom of two beautiful girls, one of whom was just diagnosed with Celiac Disease. She is 6 and we are week 2 into this. Since Jan., she had been having all kinds of crazy symptoms and we ran the gamut of doctors appointments – all of which turned up nothing/normal results. Finally sent her to the GI unit at our local children’s hospital and tested positive on blood test for Celiac, and confirmed by biopsy during endoscopy.
We immediately began transitioning our household to gluten-free, found many replacements for her old staples, and found her attitude to be positive with feelings of relief that she had some answers herself. Now here we are week 2 and the reality has kicked in, both for her and for me. She is discouraged and frustrated and I feel like I am running out words of encouragement and she getting sick of hearing me talk.
Just wondering if you can offer an words of advice to her (sometimes coming from someone else is more effective), or resources specifically for kids her age, books (she loves to read)? Additionally, her chief complaint has been that she “feels sick in her throat.” We have been gluten free for 2 weeks now and she still says she feels sick in her throat.
As a parent I find myself making the mistake of wanting an immediate fix for her so she feels better. It’s hard to see your 6 yr old feel sick all the time. Is this normal to still feel sick for quite some time while being gluten free?
Thanks for any support you can give. I will keep reading your blog – it’s awesome!
Hey frustrated Mom. I think you’re awesome. Thanks for reaching out. Here are some pointers for you:
1) As I said above, everyone heals differently. There is no normal. Patience is a must. Not easy I know. You’ll get there.
2) You mentioned “replacement foods” for her old staples. I’m pretty sure every single celiac, including myself, does the same thing. They don’t want to give up what they are used to: bread, bagels, pizza, etc. My advice? Lay off the replacement foods until she begins to heal. When I stopped buying the gluten-free replacement foods is when I truly began to heal. Then when she does feel better, still use the replacement foods sparingly and make sure you buy from the companies who do it right.
3) Consider giving up dairy. Yeah I know…something else to sacrifice. Two or three years after my diagnosis, when I still wasn’t feeling great, Mrs. Dude implored me to try giving up dairy. What?? Yeah but…yeah but…yeah but. Cheese!!! I relented. And it made a huge difference. The lesson here is important: Mrs. Dude is always right and I am never right. I also eventually gave up most corn and soy. Something to consider.
4) Find a support group, either online or in person. I have a forum here that may be of some help. There are plenty of others in your shoes and it sure as heck beats going through this journey alone.
And to you, my 6 year old fellow celiac, you are even more awesome. I know this is not easy what you are going through. You’ve got a totally cool mom who loves you so much that she is reaching out to others to she how she can make your life the best it possibly can be. As you get older, you will realize how fortunate you are.
Although two weeks can feel like an eternity, especially when you are not feeling well, try your best to be patient. I promise, promise, promise you that you WILL begin to heal and you’ll be back to your self in no time. And if it’s ok with your mom, feel free to email me when you are having a hard time. I will be more than happy to be your celiac pen pal.
Hang in there. You’ve got an amazing celiac community behind you. We’re a pretty cool bunch.
Now talk to me Bruce…I’m waiting.