The Itch on the Celiac and the Allergist

As a college celiac, I've gotten a lot of weird advice. Mostly from naive fellow college students, coaxing, "Just eat a little gluten! Like one bite will really hurt you!" The advice from my allergist has to take the (gluten free) cake, though.

Summed up in two sentences? "Become an honorary Asian and eat a lot of rice! Rice is low gluten!" The sad part was, throughout my entire appointment, he was trying his best to be helpful. Still, by the time I walked out of his office, my mouth hurt from continually biting my tongue.

My new diet?
I've mentioned my challenges with possible food sensitivities in some of my past posts. Ever since the wisdom teeth saga (wisdom teeth out, infection in, antibiotic mouth wash in, hello allergic reaction!), I've been fighting a never-ending facial rash and itch. I thought my second dose of Prednisone had finally killed the insane need to scratch my off my skin. Until I arrived back home from Colorado, my red and itchy face staring back at me from the mirror.

In a way, I consider myself lucky with celiac disease. Although I'd never even heard of it - or gluten, for that matter - after only a few months of nausea, weight loss and acid reflux, a new name dominated my medical chart. Celiac stinks, but at least I can "fix" it. At least I have a name to curse when I'm hugging my stomach in bed after gluten snuck in my meal.

My kind of t-shirt...
This itching is a different kind of demon. It can't wreak the same physical damage as celiac disease, but mentally? The unknown "why" - Is it a remnant from the mouthwash allergic reaction? Is it something I'm eating? - is scraping away my sanity. When the rash reappeared after Prednisone #2, I lifted up my allergy appointment as the ultimate panacea. A couple tests, a new list of allergens to avoid and presto! Casey is back in business!

Except, it didn't work out that way. The blood tests (which only checked suspected allergens versus every food ingredient) mocked me with all negatives, and the only skin test reactant was flax seed. Even more frustrating than the lack of results, though? The lack of knowledge about celiac disease from my allergist. I'm not demonizing him in any way - he was polite and patiently gave us a mini biology lesson about allergic reactions, sensitivities and everything in between.

All the manners in the world can't entirely destroy my frustration, though. Thousands of people blindly eat gluten free, yet "gluten" is still a foreign language to doctors outside of the gastroenterology field.

Common reaction to the word "gluten"
On some level, I understand. As a writing major, I won't study math in great detail. In the same way, a specialized doctor shouldn't spend decades memorizing every page of general biology.

Except, in this case, celiac disease played a huge role in my allergy testing. He laughed off my flax seed results asking, "Who eats flax seeds on a daily basis?" How about all the celiacs who eat the gluten free products that often rely on flax meal? His biggest piece of advice was to eat "normal foods" rather than trying out "strange" alternative ingredients like chia seeds and quinoa. I wanted to scream - I would, if I could! Send celiac a memo for me!

Until then, I'll devour my chia seed, coconut flour pancakes!
As of yesterday, I am back on Prednisone and praying that the third time will be the (anti-itch) charm. And, the day I'm back from sweating it out with relatives in Texas, I'm starting an Elimination Diet to furrow out any food sensitivities for myself.

For now, I'll just keep eating (hoping that nothing I'm gorging on is triggering my histamine reaction) and keep dreaming.

I'm dreaming of a day when I'll find the diet best fit for my finicky body. I'm dreaming of the day when all types of doctors - and the common public in general - will understand celiac disease and the impact is plays on a person's body and behaviors. Finally, though, I'm dreaming of when my body and mind are back in tune.

Soon, I won't be like Mr. Snowman!
'Cause that is one itch that this celiac just has to scratch.


**This post is also found at RunningwithSpoon's link party! Yay!**

How easily were you diagnosed? Have you ever done an Elimination Diet? Any advice for this itchy celiac? Comment below!




Comments

  1. Sending all my love and best wishes Casey! You will get answer soon even if it feels so hard and difficult! I am always here for you! You'll get though this just like you have gotten through everything else because we Celiacs and allergy suffers are one strong bunch and we can make it though anything! XOXO

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    1. Thanks so much for the support, Rebecca! It's a pain in the butt, but I'm hopeful that it will soon just be an archived blog post stuck on the Internet! ;) And yep - us celiacs are pretty big bad asses ;)

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  2. Casey, God gave me you as a best friend for a reason! We are in this together. All the silly doctors, being crushed when we get our hopes up that we will finally have an answer, skin pricks and blood tests, and all the other madness that we get to deal with! Elimination diet is probably the way to go (it's what my naturopath has me doing now too). You aren't crazy just because a test doesn't show what the culprit is, and flaxseed is in freaking everything (remember, no flax or eggs for me right now!) so I feel your frustration on that one! ;) Hang in there!!

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    1. And I'm thanking God for that every day! Thanks for the motivation, Kendall, and you always know how to make me smile when I'm a little down. Stay awesome and I'll talk to you soon! Love ya' girl! :)

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  3. I feel your frustration. After I was diagnosed with gluten-sensitivity, I still had plenty of issues to figure out. 6 months after I went GF I started using mouth wash and it was back to the drawing board with plenty of tests. After everything came back negative I determined it had to be the mouth wash I was on. Bam! That solved the issues. Then a few years later after having LPR reflux and it not healing I decided to get IgG and IgA allergy testing done and found out I as allergic to a handful of other foods (eggs being the worst) after removing all of the foods I'm happy to say I am off all the stomach meds I took and started showing healing with my reflux. Stay positive girl!

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    1. Uh, that's so frustrating! I'm glad you found the culprits though and I'm definitely excited to one day be able to say the same thing! Thanks for the comment and for sharing your story, like always! :)

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  4. Hi! I recently found your blog, and I've really enjoy reading it!

    I don't know a lot about flax seed allergies (I'm sensitive to most seeds including flax/sesame/chia/etc but not so bad I have to worry about contamination), but this (super awesome and informative) blogger has a daughter with a flax allergy, and has posted about it:
    http://www.amazingandatopic.com/2013/05/flax-seed-allergy.html

    And I do have a lot of experience with elimination diets and weird allergies, if you have any questions! Have you tried swapping out your body/cleaning products like shampoo, dryer sheets, etc to see if that helps your skin?

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    1. Thanks so much for the comment and I'm glad you like it! I may take you up on your offer and I'll definitely check out the blog! I've tried swapping out some stuff, but I'll probably check it out more in depth when I get back home! I'll take any advice I can get! :)

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  5. Casey! I am so sorry you've got such an irritating itch :( Positive Vibes your way, and GASP your allergist sounds like an idiot...seriously, I can't believe how uneducated he/she was. Then again, I deal with things such as people telling me, "well the hot water or high heat will just kill the gluten" or "a little can't really hurt" so I understand <3
    As for the itch - for allergy testing, what about those prick tests?
    AND I agree with Gina, check your soaps/lotions/washing machine products. When I was in high school my legs were SO itchy for months for no known cause, I would scratch holes in my jeans from itching all day at school, what helped me was EUCERIN ITCH TREATMENT CALMING CREAM LOTION it wreaks like old people but is tingly and feels AMAZING on itchy skin :) here's a link! http://www.eucerinus.com/products/calm/eucerin-skin-calming-itch-relief-treatment.html

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    1. Haha thanks Amber for the support and the advice! Haha, and yep, we definitely hear some weird things from people trying to "help" us! I'll definitely check my stuff, just to be sure. Never know if there's some hidden weird ingredient bugging me out! And I will definitely check out the lotion! I'll take any help I can get! :D

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