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
Thanks for sharing this Robin. Like so many other things, if you don’t have it, then you don’t know what the other person goes through.
You said it so well!!!! Am reposting on my wall.
xoxo xoxo xoxo
We took my mom who also thrives on a gluten free diet, to a restaurant knowing she’d have to eat a salad of some sort. But when she asked the server if they had a gluten free salad dressing he thought about it and then said “no.” Mom wanted it anyway and it came with the rest of our food, and the server said no one could suggest a dressing for him. The salad sat there the longest time as she picked at it, but without a little oil or vinegar at least, it was pretty bland. Finally the server came over to her and said “I apologize, the kitchen wasn’t any help in suggesting a gluten free dressing, so I went to our website and downloaded the info. It took awhile, but we do have three dressings that are gluten free.”
Small victories… but I’m hopeful this will be the standard in years to come…
Hi Vicky, When I eat out with my mom she orders her salad plain, with a cruet of olive oil and a lemon on the side, and dresses it herself.
I can’t imagine how hard this has been and continues to be. 🙁 Glad you can help others though. 🙂
we’ve gone gluten-free by choice, and have no reactions when eating it, but i have found an increased concern about going to restaurants because i can’t always know what’s in everything. i am learning to enjoy the process of cooking, but there are still days i’d just like to order a pizza!
thanks for sharing, dearheart! i miss you! off wed and thurs this week if you’d like to try to get together.
So sorry that you have such a severe reaction!
I have a relative and a friend with Celiac disease and can’t imagine why someone would want to eat gluten free if they didn’t have to! It’s not harmful to one without gluten intolerance.
I am so very sorry you had to have such a reaction. When I was told I had this(I am a big bread person) I was so upset but tried to not eat any gluten. It lasted about 2 weeks and I went back to eating all of the Healthy wheat products we have always heard about. That was a big no no!!!! It has been much better since I have stayed true to the diet but I am very lucky that your reaction is not what I got. People who don’t have Celiac think it is easy to find things to eat out or even at home but it is very hard you MUST become a label reader and it take forever to find things that will work for you. Must say that it is Great that you have a family that supports you with this. Blessings, Sandy
Thank you for writing this. My 8 yo daughter has CD and it’s hard for me to know how she feels when she gets gluten. We are currently doing the elimination diet to see if she has any secondary tolerances (already confirmed dairy) since we could tell something else was bothering her. Your description of being hateful after you get gluten fits her to the T!! Does that feeling come and go over the 6 days? or is it constant? Thanks again for the glimpse into her world.
Thought you might find this article interesting with regards to Celiac and Restaurants…
http://online.wsj.com/article/SB10001424052702303768104577460464180837748.html?mod=WSJ_hpp_LEFTTopStories
Annette, thank you Honey! xo
Hi Robin, I have a relative with now-proven CD who didn’t know it for many years. But she was perceptive enough to know that there were many things she couldn’t have, including most canned goods. She still avoids anything that says ‘natural flavorings’ or even ‘spices’ on the label. CD is not the only issue, there are other food sensitivities. I try only to take her to restaurants where I can call ahead and speak with the chef about potential meals for her. That pretty much excludes chain and lower-end restaurants. Interesting that you also have the Sjogren’s. I have heard that undiagnosed and untreated CD can lead to the development of other autoimmune disorders over time, and I wouldn’t doubt it based on what I’ve seen.
Hi, I just finished reading about your ‘first year.’ I, too, had one like that. My reaction, however, tends to be more anaphylactic – resulting in rounds of steroids. It was a rough year. But I learned something about eating out: Threaten to die! I’m serious. If you say this: “I have a serious allergy to gluten {and then instruct them on how your food needs to be prepared}. Then say, “This is a matter of life and death; I’d really hate to die in your restaurant today.”
I’ve not gotten ‘glutened’ in a restaurant since….
Leslie…now there’s one way to get the staff to pay attention!!! 🙂 xo
I was devastated when I found out my very favorite Asian sauces I use when cooking at home were not gf. (You wouldn’t think hoisin, oyster, or soy sauce could be so dangerous, huh?) Now I’m on a quest to re-create those flavors using tamari.
I’ll be grateful if you continue this in future. Many people will be benefited from your writing.
In restaurants you must also ask for plastic utensils. All silverware is washed together and from some of the utensils I have seen they are NOT clean. I have even asked for an extra glass of water and washed the silverware. Talk about looks!!! I have also had waiters ask if this is because of Celiac or if this is just a dietary choice. I always tell them CD. If most restaurants took the time they would realize how easy it is to cook Gluten Free. Even gravies can be tasty GF. All it takes is a little time and commitment.
Good idea Wendellyn! xo (I always mention Celiac Disease too !)
Hello! Glad to hear that Plaquenil helped with Celiac, along with other symptoms. I was prescribed it by my rheumatologist as well (for a different auto immune condition) and am having problems finding a brand that is truly gluten free. Do you mind sharing what brand you take/took?
I’m also very concerned about side effects, since the side effects of Plaquenil are very similar to my gluten reactions (very nasty GI stuff.) I know that everyone reacts differently, but do you mind sharing if you experienced GI side effects when on Plaquenil?
Thanks, from another Celiac 🙂
Amanda, I’ve had no adverse reactions to Plaquenil- I did have to start getting my RX from Walgreens who gets their Plaquenil from a distributor that doesn’t add any gluten…Do you have a Walgreens Pharmacy near you? My bottle says: mfg: Zydus (I hope this helps) xo