Longest. Month. Ever.
I came into 2015 with a revived spirit and a new outlook on life. I was going to work smarter, spend more time with Mrs. Dude and the Dudettes and overall be more productive and less stressed. So what happened? I’m now on day 26 of being sick. Like…really sick.
So just for the records, my New Year starts February 1. January was my mulligan.
A few weeks ago, I wrote a blog post centered around an email I received from a 12-year-old with celiac disease. Her spirit and her attitude lifted my spirits and I thought she provided a great example of how we should all look at celiac disease.
Since then, I have been following a few celiac support groups on Facebook. I don’t comment at all…I just like to see what kind of issues my fellow celiacs are dealing with. Lots of great people with legit concerns but I swear, sometimes it’s like being at a “whiners” convention. Or better yet, a “I shouldn’t have taken the risk and eaten that, but I did and now I feel awful” convention.
Every so often, I’m tempted to pipe in and lend some celiac advice, but I remain an outsider instead.
I received another email I received last week from a 12-year-old celiac whose advice many on those support forums should heed. (Note to the person who berated me last week for labeling a child a celiac, instead of calling her a person WITH celiac disease. Lighten up…it’s just how I speak. Boy I get cranky when I’m sick.)
Anyway, the letter is beautifully written and another lesson to all of us adult celiacs how to tackle not only our disease, but life itself. Sometimes it sucks, but it is what it is.
I am 12 years old. I was diagnosed with Celiac in the second grade. I’m now in sixth grade. I have only gotten sick from gluten 5 times in the last 5-6 years. I sometimes wish that I wasn’t gluten free or really actually all the time. Because at parties and gatherings I have to bring all my food. And sometimes I get made fun of…a lot.
I know that people don’t understand Gluten but I mean I don’t understand why some people would try to put other people down because of something that they can’t control. In third grade this girl dared me to eat a roll at school (which wasn’t gluten free) i said no, then she asked why. So I told her it would make me sick. Then she literally tried to put that roll in my mouth.
In 5th grade I was at this place and we were all going to the pool and I asked this girl if I could swim with her and she was like no. The water isn’t gluten free. And she laughed in my face.
I think some people don’t know how hard it is. I mean I know it isn’t cancer but it sure is hard. I haven’t had this certain looking macaroni in like 3 years. But I’m okay with that.
So to all those little kids and adults out there who are sad or upset because other kids make fun of you or just because the fact of Gluten Free is sad already to you, just remember that God gave you this because he has a purpose for you. I hope all Gluten Free people have every meal as your best just because it’s special for you. 🙂 🙂 🙂
What a great kiddo! It can be really hard dealing with Celiac as an adult, but at least no one has ever tried to force a dinner roll down my mouth. It makes me really sad to hear how kids with Celiac deal with that kind of taunting regularly. Thanks, Dude, for being the voice of encouragement that all of us need so frequently!
My pleasure Meg.
as the father of a daughter with celiac (she is 6.5 and diagnosed at 3.5) i’m thankful for this post. I’m thinking more and more how her life will be impacted as she goes into grade school and beyond, dating, college, family life etc. I’ve yet to find much written on the social and psychological impact of celiac on children. Do any parents out there have any suggestions of things they read?
Having said this, my daughter does quite well so far and I know as she matures she will handle things differently (perhaps worse, perhaps better, we’ll see).
On another note, and i’ve asked this question before, there is a lot of emphasis on getting sick from being glutened. My daughter has NEVER gotten sick from gluten, prior to her diagnosis or since (from any potential cross contamination, she’s never ever intentionally eaten gluten). Now maybe she doesn’t get sick because she was diagnosed so early, or, as I understand it, a majority of celiac don’t have those outward symptoms. My question is this: why is there such an emphasis on getting sick, which surely is terrible, but not much mention at all of the damage to the intestine that lasts, i think, long past the initial feelings of sickness.
Meaning, the impact of getting unintentionally glutened lasts well beyond the outward symptoms. I’ve not heard from one doctor how long the villi take to recuperate after a glutening. I think that is because they simply don’t know.
I think it varies from patient to patient. But you’re right…the emphasis should be on long term damage, not just stomach aches, etc. My best to you and your family.
If I need to give a quick explanation — and I don’t want to say that I’ll get sick (when I don’t really, although I do get some symptoms from cross-contamination) — I say that it will damage the lining of my intestine which stops me absorbing essential vitamins and minerals leading to problems such as osteoporosis, and can cause malignancies. Usually if you mention some things that they consider ‘real’ diseases this keeps them quiet. I might add severe abdominal pain and dizziness, since I’ve had these in worse episodes.
If they start suggesting I might have ‘just a little bit’ then I say that my body only has to detect the mere presence of gluten (perhaps in a crumb) to produce the antibodies that cause the damage – it is not about the quantity of gluten. I don’t know precisely how correct this is (I believe I do get more severe reactions with greater quantities of gluten – not that this happens very often but I’ve had a few mishaps over 8 years of diagnosis) and, you’re right, I don’t believe that the medical professions know all of the details of it either.
Thank you very much for sharing that. My 11 year old and I were recently diagnosed and I know she has a hard time with other children not understanding why she needs to eat gluten free. I will be showing her this. BTW, I call her a celiac, I didn’t know there was proper wording.
Anyway, I hope you are feeling better and Happy 11 Months ( year doesn’t apply)
Fantastic letter with a great message! I really enjoy your blog.
I too belong to the groups on FB and rarely post… it has become a whining platform for many and I do hold myself back from commenting on many of the absurd postings IE: Is this Gluten free? When the ingredients posted clearly say “May contain Wheat!”
Ok, there’s my rant done!
Yep…I see those posts all the time. Drives me batty.
“I mean I know it isn’t cancer but it sure is hard.”
Wow, such wisdom from a 12-year-old.
Thanks for sharing!! Awesome letter from such a young person. I cant imagine being a child and having to deal with the social issues with gluten. Bravo to this youn person for being so strong!! I am one of the asymptomatic celiac’s that was recently found by chance. But, it is what it is and I have to do what is necessary to keep me healthy. I did get some useful information from one of the FB sites about an app called shopwell. It has helped me find things that have “hidden” gluten.
you’ve been sick for 26 days? Thought it was just me! Mine is a convergence of things I do believe – drips of gluten from some cereal, carrageenan in a different brand of almond milk (I didn’t read the label and assumed it was carrageenan free like Silk), chocolate cross-reaction kind of thing, back strain (from Googling probably) and just too much stressing the whole system. But I’m on the mend hopefully. Hope you are too!
Crying. But thanks for sharing. Sometimes we all need reminders that everyone carries something in this life.
To the twelve year old girl, I would like to say that we are the “canaries in the coal mine.” At a GIG meeting several years ago, Dr. Peter Glidden told me “You don’t have bad genes. No one can digest the gluten in wheat, rye, barley or oats.” It took a lot of education to understand that. Dr. Fasano says that every human, when they eat wheat, barley or rye, gets I creased intestinal permeability for 4 or 5 hours. A study in Italy of non-celiac gluten sensitivity shows that people with that condition get autoimmune diseases and nutritional deficiencies too. Dr. Kenneth Fine says that, just based on one gene locus, HLA-DQ, only 1% of Americans don’t have vulnerability to gluten. There are 100 known other gene locations that affect gluten sensitivity. Dr. Tom O’Bryan says that 40-50% of people with the “celiac genes” DQ2 and DQ8 have non-celiac gluten sensitivity. Dr. Marios Hadjivassiliou says that not only DQ2 and DQ8 are gluten ataxia genes, but so are DQ5 and DQ6. Some researchers think DQ7 and DQ9 give some risk for celiac. There is only DQ2 through DQ9, so that leaves only DQ4 that is not suspect as of yet. But wait! There’s more: wheat germ agglutennin is bad for everyone. It can cross everyone’s blood/ brain barrier and causes damage in the brain. It attaches to your joints and causes damage there. Wheat gluten is comprised of two categories of proteins: glutelins and prolamins. Researchers have found that there are 5 more categories of proteins that celiacs react to. They are just getting started, as there are over 23,000 proteins in wheat. Dr. Theron Randolph said that wheat is the beginning of all addiction. Dr. Aristo Vojdani says there is no such thing as a gluten-free diet without being dairy-free as well, because the proteins are so similar. Gluten and casein peptides attach to the opiate receptors in our brains. They are addictive drugs. That’s why the glutenoids hassle you for being gluten-free, just like drunk alcoholics hassle you and don’t trust you at parties and in bars, unless you are sharing their impairment.
What a nice sentiment. My wonderful husband tells me that I am special and require premium fuel like a Ferrari. 🙂 This kind of love and support is why he’s still my best friend after 14 years. If having Celiac can be a blessing in anyway, I would have to say that I have found who my true friends are, and have become more sympathetic and less apt to make snap judgements about people. That “lazy” person you see could be suffering from an illness that takes away their energy (we all understand that). That childless couple may really want kids but can’t have them. That picky eater may be one of us! And the other bonus is that now I have real motivation to eat a vegan diet (and my husband supports it) and have discovered many delicious foods and recipes I would never have tried anyway. It is not always easy to look at the positive side but there is always one. To your health, my friends!
Phenomenal insight Cindy. Love it.
GluteDude,
I totally enjoy your every blog.
When I was first diagnosed, someone told me, “You are NOT Celiac. You are a child of God who HAS Celiac.” I honestly tried describing myself that way – for about 3 months.
HOWEVER:
***Every time I eat foods that are not on the buffet at a pot luck gathering, people chime in with all sorts of stories about people who have every known disease under the sun as if I still need help with my diagnosis.
***People with the best intentions will explain every ingredient in their dish because I “should be” able to eat what they brought.
***Someone with some distant relative thrice removed on their grandmothers mothers side had a strange pain somewhere or other and “could that be Celiac”?
***People have no trouble asking the most intimate questions out of morbid curiosity. Sometimes I wait until their mouths are full and really explain the actual answers (think about your poop blog topic).
***I have explained cross contamination until my teeth are tired. Literally – my teeth went to sleep.
***I just tell everyone that I simply am not hungry!
I nearly died from Celiac. Have had 6 blood transfusions just because of Celiac. So when I need to, I just tell people it really can kill. Those who lose interest were just in need of entertainment. I ignore them and patiently educate the others.
I decided that for many people unfamiliar with it, I am the picture of celiac disease.
Until we gain as much understanding as other chronic diseases, I really AM CELIAC!
I am gonna just have to BE Celiac while I continue to educate others.
And I totally agree with Daniel… the emphasis should not be on searching for symptoms from gluten. The intestinal damage can occur without any outward symptoms. Depending on which part is damaged, nutritional deficiencies can take a long time to become evident.