20 Emails in 4 Days: Part IV (the final act)

child needs 504 plan for celiac

Dude note: Five emails per day for four days. Here’s part 4.

——-

I sit crying from cross contamination again. Hershey syrup made me sick. Most my co-workers don’t get it. My husband is dairy intolerant, he doesn’t fully get it. I have celiac, hashimotos and mthfr 677/1298. I love my coffee and sugar. I tried paleo but so limited. Paleo autoimmune protocol is crazy to follow. I limit gluten free breads and processed food. I get reactions from gluten, dairy, soy, oats, peanuts and eggs. I tried leaky diets and supplements. I get depressed a lot from exhaustion and cross contam. I can’t eat out safely. Alcohol makes me sick. My job is stressful working in labor and delivery as RN. I am SOS (sick of shit). What’s a burned out girl to do. Ready just to quit my job and go live in the woods.

There are times I feel like I’d like to join you.(I’d of course have to check with Mrs. Dude first.) Our life can be draining at times. Always playing the food police and sometimes just not healing. Beyond frustrating. My only advice to you is to keep looking for the culprit. It’s out there. And perhaps consider going on the AIP Diet for a month and see how it treats you. Yeah…I know…another program…total drag. But this one really seems to heal a lot of people and it’s helped me in the past.

Here are all of the details on the AIP Diet.

Hang tough. You got this.

Would you like to partner with the Good Morning Snore Solution and earn $25 per sale?

No.

We are interested in contributing an article to your site, glutendude.com. It will be relevant to your site’s topic and will include a few references to our client. Aside from the article contribution, we’ll also pay $100 per post through PayPal for your time and effort.

No!

Hi, we are Ultimate Performance Products, the makers of SPORTea®. SPORTea® is a 100% natural, gourmet, nutritious hot and iced tea beverage. We wanted to ask if you might consider our product in your upcoming subscription boxes?

NOOO! And I have subscription boxes??

Ok…I’m not including the above three come-ons as part of my 5 emails. Moving on.

My Daughter, who was diagnosed at 1.5 with Celiac Disease, started kindergarten this year. So far it has been okay. I didn’t want to step on any toes about a 504. I spoke with her teacher and the school nurse about a health care plan for her to try to limit or cut out cross contamination risk in the classroom. We have run into a couple of bumps along the way like substitutes teachers not following guidelines and just general laziness. I made a list of all the steps that needed to be followed to keep her as safe as possible. I told her teacher at the beginning of the year that I was happy to provide any kind of substitution she needed whether it be food or activity wise if she just gave me ample notice.

We have had a few issues with the teacher only making the kids use germ-x or not cleaning after in class parties. I have now had to call the nurse or teacher 3 times over not following the guidelines. I have now learned that the teacher is still not making the kids wash hands after eating and today my daughter was left out of a birthday party because I was not told about it. So now I am trying to take the steps of creating a 504 with the school and not just the health care plan we have now because it doesn’t seem to be doing us any good. So my question to you is, I have been reading drafts of other peoples 504’s but I have not seen any that specify hand washing for other kids after gluten activities or eating. Is it a thing you can ask for? I don’t think it will be needed as much when she gets older but for now it seems that some kids can’t keep their hands to themselves or out of their mouths so for health and wellness reasons it seems to be a reasonable thing to ask for at such a young age.

Thanks for taking the time to read my ramblings.

Can anybody out there tackle this please?? Not my area of knowledge (among many, many other things.)

When’s your beer coming to Hawaii?

I have a beer? (Yes…these are actual emails I get.)

I was told I had CD about 3 years ago, (1st blood tests, then endoscopy 2 more times and I still was not convinced). I was and still am in denial. I have been in the bakery business my entire life and I am an addict. I mean I really can’t go one day without some sort of bread or pastry. I am also a bakery snob and only like the real thing….every single GF product (breads especially) have been really bad and not satisfying. I don’t have the energy or the will to reformulate my favorites using GF flour etc. Now I am just wondering….if I just keep eating gluten, will I for sure get cancer? I have had so many family members die from that horrible disease that it really does scare me. Do you think they will ever find a cure for CD other than just not eating the good stuff? BTW…this is the 1st time I have ever contacted anyone about this. I have a doctor appointment for an annual physical tomorrow. My list of symptoms continues to grow, but like a drug addict…I can’t stop eating it. Do you know lots of cases that have died from the disease progressing to cancer? Can you share any statistics?

Sigh. We can eat plenty of good stuff. Meat, fish, veggies, fruit, etc. And there are some companies out there making great, healthy gluten-free food. Just wait until Jennifer Esposito launches her new brand and products this Spring. To. Die. For. AND will allow us to heal.

My point? If you are seeking permission to cheat, you’re not gonna find it here. And you don’t need me to provide statistics for you.

If “good stuff” is more important than your life, there is nothing I can offer to change you thinking.

Hello…I’ve been reading your blog since being diagnosed 3 months ago, been on a strict gluten free since and just accidentally glutened myself..I feel rubbish…and scared I’m just going to be ill forever. Before having my little girl two years ago I was an aerobics instructor with lots of energy. I’m struggling with feeling like a sick person…plus nobody seems to know how it feels…they think it’s just a case of not eating bread!? I’m happy to avoid gluten but want my health back…plus what do I do when glutened? I have a two year old and no help…I need it to pass ASAP! Love the blog btw.

To me, my health is almost always directly related to how I treat myself. Am I eating the right things? Am I getting enough sleep. Am I trying to meditate on a regular basis? Am I truly thankful for what I have and who I am? These things all add up. Be good to yourself. And play with different diets to see what works. I’ve given up dairy completely. I’ve done the Whole30 twice. I’ve done the AIP diet. All have made me feel tons better and taught me how I should be treating myself if I want to feel good. And by all means…stop eating gluten-free food. Click the link…you’ll see what I mean.

As for healing from being glutened, some amazing advice here.

And let’s end this mail bag on a happy note.

Hi Gluten Dude. My daughter Lillian was diagnosed with Celiac Disease at the age of 4. She just turned 10 and has been in remission for 2 years. We contacted you at the beginning of her diagnosis and you helped us tremendously. We just wanted to take the time to write and give you an update. Let you know that you are truly making a difference in the world. Lillian was just elected to be a Child Ambassador for Children’s Hospital Colorado!!! All the funds that she raise will go to the Celiac Center here in Denver, Co. I am attaching a link to her Ambassador Page hereto. I hope that you will enjoy reading her story and possibly share it among your followers. Thanks for being there for us when we needed it most.

Here is the link to her story folks. She is truly trying to help and is 60% of the way to her goal of raising $5,000. Anything you can donate would be awesome!!

Ok, that’s a wrap. 20 emails…in 4 days…in the bag.
Annnnnnnnnd SCENE!

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8 thoughts on “20 Emails in 4 Days: Part IV (the final act)”

  1. Betsy in Michigan

    Re: a 504 plan: Wrightslaw.com mights have some insight; it’s searchable. Very big go-to for Special ed concerns, but of course that includes 504’s, and some kids also have health issues like allergies. An allergy site might also have tips.

  2. If I’m not mistaken, Hershey’s chocolate syrup contains xanthan gum. I tend to avoid xanthan gum when I don’t know the food source that is fed to the xanthan gum bacteria. Wheat can actually be one of the food sources. I actually react to Bob’s Red Mill xanthan gum because the company feeds wheat to the bacteria that is used to produce their xanthan gum. There are some syrups that don’t contain xanthan gum, and Smucker’s has a good chocolate one. It’s their sundae syrup. Note that I do have a wheat allergy and actually don’t know whether or not I have celiac disease. Hope this helps.

    1. I am now staying away from Chocolate and eating more fermented stuff. Love Forager project. Cashewgurt with no sugar. no xanthan gum. They use Cassava root and Carob Seed. I feel good eating it. Great for smoothies too. There is one with high carbs too vanilla flavored too sweet but I have mixed it. Fermented veggies too. I take a probiotic. I got DH rash after eating Enjoy Life Chocolate chips. It might be cross contamination or it could be from eating spiral noodles made with rice and Quinoa. My rash hurts bad and in lots of bad places. Ouch !! I am doing better on quercetin complex. I also went off benadryl for sleep after more then 10 years taking it. It was cause a lot of fatigue and brain issues. I switched to 5 HTP and L-theanine. My fatigue is hugely better. I can exercise longer without feeling like crap the next day. I am considering microdosing other stuff to help depression and social anxiety. Over all I am doing better. My husband says I should write a book too lol.
      Thanks Dude and for everyone’s tips !

  3. “Lillian was just elected to be a Child Ambassador for Children’s Hospital Colorado!”
    RAD!

    “if I just keep eating gluten, will I for sure get cancer? I have had so many family members die from that horrible disease that it really does scare me.”
    This is SO annoying.

    Glad I don’t have a child in school with CD to deal with, it is hard enough keeping my me safe.

    Dude, you are amazing. I can’t want to go to HI for your beer 😉

  4. Anne from Orlando

    To the person who wrote “I sit crying,” I know your pain. So this is for you and for anyone who is new to CD or gluten sensitivity. My life changed when I began drinking Ancient Nutrition organic bone broth. There are other bone broths out there, but that’s the one I use, and it has been safe for me. Deciding to drink this was extraordinarily difficult for me to do because I am otherwise vegetarian. But once I did, it really helped. Bone broth heals the gut. Damaged guts are why newbie celiacs can’t handle a lot of other foods. I still don’t do dairy though. My advice to anyone trying to get well:
    — see a functional medicine physician (look up why) for non-GI issues because all Celiacs have non-GI issues, get
    tested for all defiencies (e.g., iron, Vitamin D, and hormonal defiencies as well).
    — get on the (gluten free) supplements your body needs, in the right amount, and the right combo
    — fill your diet with foods from the produce section. Home cooked, natural foods are best. Get a GF cookbook.
    — sauerkraut or kimchi are two great natural probiotics to help gut health
    — Read Dr. Alessio Fasano’s book Gluten Freedom
    — Don’t eat out at restaurants, or in other people’s home, bring your own food when going out with friends.
    Some still eat out. Too risky for me.
    — Have separate dip-in foods at home. Separate butter, separate peanut butter, etc.
    — Have a separate area for preparing your foods, separate toaster, etc. Don’t let your food touch gluten contaminated
    surfaces
    — READ ALL LABELS BEFORE BUYING. If I see “manufactured in a facility that also processes wheat…” I don’t buy it. If I’m
    unsure about whether it’s safe for me and I can’t find out for sure on the Internet, I don’t buy it.
    — Start keeping a list of all the foods that ARE SAFE FOR YOU, ones you personally buy. I take pictures and have them in
    a file on my phone. Then when my husband is out shopping and asks, do you need anything, I send the photo.
    — Hang in there. It’s going to get better.

  5. I had my son in public school for his kindergarten and first grade years. He did not have a 504 plan, but that’s because I felt he didn’t need one. He’s homeschooled now but not because of his celiac disease. Most of the schools now don’t allow food treats for birthdays but it sounds like yours still does. If I were you, I would leave a package of cookies at school with your child’s name on it so when there is a birthday treat, your child will have something to eat along with the kids. I’d also keep a snack stash just for your daughter at school so if there’s a class party or something like that, your child has something at the school and you don’t have to worry about her being excluded. My son’s teachers were always happy to do this.

    As for the hand washing thing, I’m not sure if you can ask other students to wash their hands after gluten activities, but you can always insist that your child wash hands before eating so at least you know it’s less likely she’ll get sick.

  6. Hmmm. The baker who doesn’t want to give up gluten should probably read my comment on your previous post. If they want to commit suicide in one of the slowest, longest, most painful ways I can imagine, keep eating gluten. Their health *will* continue to deteriorate every year of their life until they die or are so systemically and pervasively sick they might as well be dead. They also increase their risk of permanent neurological damage, ataxia, and dementia. And they increase their risk of developing another autoimmune disease. It’s not just cancer they need to worry about.

    I was always more the savory cook. I played with baking, but it was mostly main courses and sides I cooked and which my father started teaching me how to cook when I was 10. (He’s a scientist, but he did co-author a cookbook back in the 70s.) Savory dishes are much simpler to modify to be gluten free for the most part than baking. My wife, however, has always loved baking. When the younger kids and I were diagnosed, she took it as a challenge and learned how to make fantastic gluten free baked goods. My youngest daughter is definitely a baking snob, but only learned how to do it gluten free. Throughout high school, she would make birthday cakes or cupcakes of different sorts for her friends’ birthdays. Her friends loved her creations and gobbled them up. Better than most commercial products in flavor. And it also meant she could always join in the celebration without worry. And she loved baking and loved seeing friends enjoy her creations. Basically a win for everyone involved.

    And if the baker actually lets their body heal, perhaps they’ll discover the energy to develop their own gluten free recipes and adaptions.

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Who I am. And who I'm not.

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I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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