Part 3~The Evils of Hidden Gluten

Happiest Monday my friends!

I’m doing a tiny series of posts about my first year living with Celiac Disease. The previous posts were: Part 1~The Symptoms & Part 2~The Spouse

Today, in part 3,  I want to say a few words about getting glutened, which is not an actual term unless you have Celiac Disease and then you (and your family) very quickly adopt it into your vernacular!

The first time I got glutened was only 6 weeks after I was diagnosed with Celiac Disease.  I was on vacation and went to a restaurant that promised to have gluten free menu items. (Tommy Bahama’s in Sand Destin Florida)

To say I was surprised is actually an understatement. Within 30 minutes of eating my last bite at Tommy Bahama’s,  my stomach roiled and it felt like a huge storm was brewing inside my gut.  Within an hour my stomach became distended and to tender to touch. The night was rough, I broke out in sweats, my head pounded and my joints ached…the kind of all over ache you feel when you have a high fever.

Oh, and my gut…for the love of pete…my entire torso, felt like someone was scraping it on the inside with a fire-hot rake.

The next morning I was confused and clumsy …more than normal, and overwhelmingly nauseated.

Still horribly achy and bone weary,  I was also so irritable, (who wouldn’t be) but this was way beyond any irritation I normally feel. My skin crawled and the least little thing sent anger all through me…you know the anger that makes your head feel like it’s about to blow off? My entire body felt electric…in a very bad way.

This lasted for three days before the symptoms lessened. It took three more days for the physical symptoms to go away completely (SIX DAYS in all!!!)  and I’m telling you…it took a couple of weeks before the brain fog lifted.

The Husband took immediate action that next mroning and got Pepto Bismol (which does a great job of coating your stomach so you can eat) and Aleve, which I took 1000 mg. a day, the dose I take for arthritis flare-ups per my Rheumatologist. (super helpful for the flu-like symptoms)

***don’t take that dosage without permission from your doctor***

We were completely taken by surprise and had no idea how to deal with the issue, I mean, WHY in blue-blaze didn’t my GI doctor tell me about what would happen if I accidentally got gluten????

I called her the moment I got home with lots of questions. Remember, I was on vacation with my family when it happened and one of my son-in-laws asked the question that was foremost in my own mind…

“You didn’t react to gluten this bad before you were diagnosed with Celiac Disease. Why is it so bad now?”

The doctor, who I love, spoke slowly like she was talking to a child…“sounds like your system may have a severe reaction if you get gluten, be very careful with your diet. I’d like for you to see the nutritionist as soon as possible and follow up with your Rheumatologist and let him know about the joint pain.”

When I got off the phone I loved her a little less.

In the coming months, this same thing happened over and over again. Most of the time it was after eating out at a “safe” restaurant but a couple of times it was after getting something at the grocery store with no typical gluten ingredients listed…but some sneaky ingredients like: natural flavoring.

(This is why I do most of my shopping at Publix and Whole Foods-they have Gluten-Free labels)

I kept two appointments with my Rheumatologist, who wanted me to go on more medicine for joint inflammation, but had no useful information about my body’s reaction to hidden gluten.

I saw the nutritionist, who also has Celiac Disease, but looked confused when I told her how often I was getting the violent reactions to hidden gluten or cross contamination...”I get glutened once or maybe twice a year” she told me. Leaving me to feel like a complete idiot who must be totally careless.

Finally I made an appointment with Dr. Cynthia Rudert who is a Board Certified Gastroenterologist in Atlanta, Georgia, specializing in Celiac Disease. (She is the Medical Advisor for the Celiac Disease Foundation and for the Gluten Intolerance Group. She is the Medical Director of the Gluten Sensitive Support Group of Atlanta and a member of the Celiac Standardization Group.)

In her practice she follows over 500 Celiacs. The woman has heard it all when it comes to Celiac or gluten sensitivity.

Insurance doesn’t cover Dr. Rudert. ‘Nuff said.

She spent over an hour with me, poking,  prodding, combing through my blood work and asking a hundred questions. Towards the end of our visit she told me that I was simply extremely sensitive to even trace amounts of gluten.

“For some people with Celiac, they get a trace and they have minimal reaction. Your body reacts violently. If you get a crumb, you’re going to need a week to get over it.”

Allllrighty then.

She went on to tell me that although many Celiacs have lesser reactions as their bodies heal there are some who’s reaction stays the same…or gets worse and she suspected that I was one of those unfortunate few.

Seriously?

Oh, and it turns out the The Husband’s solutions of Pepto Bismol and Aleve were a very good idea.

***

I have been glutened over the past 12 months more times than I can tell you, spending lots of days in bed. Feeling sick more often than I care to admit.

We limit our eating out (Poooooor Husband) and only go to about 3 restaurants. I read the servers the riot act each and every time I go. I didn’t always use the words: CELIAC DISEASE when ordering my food because I felt perhaps that was TMI! But these days I do…I tell them I have Celiac and I tell them I get horrendously sick if I get gluten…and I warn them that I WILL be back in immediately if I get sick. Does that sound like too much?

Well, here’s what pushed me to giving all that information to the strangers taking my food order…

A waiter at Ted’s Montana Grill, one of our 3 safe restaurants, told me a few months ago after I told him I had Celiac Disease…

“OH. I’m glad you told me that. I’ll note CELIAC DISEASE  for the kitchen because honestly most people come in here and order from the gluten-free menu then pick at the croutons from someone at the table’s plate. I guess they’re doing it to lose weight…but you get sick so I’ll be extra careful.”

He left me speechless.

And annoyed.

If you have Celiac Disease and go out to eat I would recommend you tell your server about the CD. Otherwise they may think you’re eating gluten free to lose weight and for some servers, they don’t take that so seriously, which inevitably lends itself to those of us with Celiac getting cross contamination when we eat out.  I’m sorry, but I’ll be glad when the gluten-free fad goes away.

***

The good news…

My reactions to getting glutened have lessened over the past 4 months! I thought it was because my body was healing and maybe that’s it, but my Rheumatologist told me he thought it was the Plaquenil he prescribed after he diagnosed me with Sjogren’s Syndrome. The Plaquenil calms down your immune system and my immune system is what causes all the reactions to hidden gluten or cross contamination.

Plaquenil isn’t protocol for Celiacs like it is for Sjogren’s Syndrome…but I wonder if it should be for those who have bad reactions to gluten…I’m not going off of it any time soon.

***

So that’s the story morning glory, on getting glutened when you’ve got Celiac Disease…I hope your day is wonderful ~ if you don’t have Celiac, thanks for hanging in with me for this little series!

xo