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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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About this blog

Giving voice to the blues.

Entries in this blog

Alright, I'm ready to get off the ride now. I had some dairy a few weeks back and reacted to it. I'm going on a trip and thought it would be a good idea to reintroduce some intolerant foods so that I might try the swanky hotel gluten-free food. *ouch!* It was around the same time my mom went on hospice and a few other potential disasters came in that day. Just as I was dealing with the hospice evaluation, the director at my mom's place said she wanted to move someone into my Mom's room (a roommate). That is not going to work while we are sharing memories, looking at pictures and the like. Wrong! In addition, my mom has been put on a puréed diet and I had to get involved because they were serving her puréed hamburger which disgusted her and she has more presence of mind than most of us even in her condition. She only weighs 100 lbs and once she starts refusing to eat, it's all over. Do I really have to go over all the NORMAL foods a person in her condition CAN eat like scrambled eggs, smoothies, oatmeal, mashed potatoes, soup, etc.?? My body is reacting from all of the stress. *argh*. I don't want to be sick for my mom! :*-(. I WANT TO BE FULLY PRESENT FOR HER.

Next, the trip: hubs is going on a business trip and spouses have been invited. Two of the people going I haven't seen in a few years. Six of them I've never met. So much has changed and I really have been living in a bubble recovering the best I can. I do not feel ready to face the world at this point.

I am taking travel cookware to cook in the hotel room and will join everyone for dinner and not eat. There are so many things I want to scream about and, since I'm too tired to actually scream, I'll just type it here:

1) I DONT WANT TO TALK ABOUT THIS! My husband wants me to listen to Wheat Belly to arm myself with facts. Can't he just keep speaking for me?? I'm tired, don't want the attention and now must give everyone an education? B-o-r-i-n-g!!

2) I DONT WANT TO LEAVE MY MOM! This one is very difficult for me. The closer I get to the time, the less I worry about something critical happening but you never know. Leaving her is tough and I don't want to do it AT ALL.

3) I'M TOO TIRED TO TRAVEL AND SOCIALIZE. If it was one night, I could pull it off, but three in a row + probably some activities during the day? I am not sure I'm going to get through this.

4) I DONT WANT TO SPEND MY TIME COOKING WHILE IN A SWANKY HOTEL. Well, I guess I'm spoiled but I'd really rather be served and pampered on this trip than spending my extra time cooking for myself.

5) I FEEL LIKE IM ON THE OUTSIDE LOOKING IN AND I HATE IT!! In the old days (the 90s before becoming ill) I loved doing things like this. Now I'm exhausted. Putting on a good face exhausts me. Cooking exhausts me, I'm way too tired to figure out my spiel. I want to enjoy this time away but its difficult for me to find what used to make me happy. I should be happy, right? Swanky hotel, nice people. It seems like there's an asterisk at the end of everything I used to enjoy and I'm sad/mad about it. I always enjoyed people and now I feel like I need to be armed with why I can't participate. I've always been inclusive and kind to people who don't quite fit in and now I'm one of them. (Actually, I was one of them as a child too.)

6) I BELIEVE I'LL BE A BAD AMBASSADOR OF MY FAMILY. It's always been so easy to socialize and enjoy others. It's how I was raised. I used to entertain with a song and laughter. Now I am in this weird world where I can't blend in or grease the wheels. I feel like the cog that won't comply. I REALLY HATE THIS. I FRIGGING HATE THIS. I'll probably figure out others don't require my entertainment to enjoy themselves. I just don't feel like I have much to contribute. What value do I offer to anyone else? That was my role.

Alright, I may have more later. It feels good to get this off my chest here. It's getting to the point where I have to put on a good face for everyone and I think I'll be limiting my ranting to here from now on.

You have no idea how grateful I am that this place exists. I feel so alone right now.
3-12: I eat two slices of a three cheese gluten-free pizza.
3-20/21: still paying for it daily with changing symptoms.

Even things I normally eat hurt. Argh

I feel like one of those squeeze toys where, when you squeeze the stomach, the eyes pop out.

Never again cow dairy. In time, I'll have some goat yogurt but never again cow cheese. "Said the Raven...".

Maybe it's stress compounding it too. The things I'm dealing with, worrying about. Who's stomach wouldn't be tied in knots?

I heard my husband say I was managing an autoimmune condition. Manage is right, like managing a petulant little bull. Gosh, I was really doing well and had to start pushing... Really thought I could reintroduce some intolerant foods so that I could eat easier at a restaurant! What was I thinking?

This must be one of those blessings in disguise. I can't afford to be glutened right now. Not going to eat in a restaurant now. Hmmm... Have to put my big girl pants on for several days of business/social gatherings around food. +energy!

Yep. That'll be a lot. Good reason to rest up. Penalty box just transformed into solace.

Tomorrow I sleep. Sleep and nourish.
This forum group is a godsend. I'm very comfortable here and wish I could speak up for myself better out in the real world. Things come up, people ask things of me that I cannot give because I don't look sick on the outside. Well, I look tons better after eliminating gluten but, you know, I look normal to others regardless. People make assumptions and a lot of them.

A caregiver of my Mom's asked me to come (and bring her) to his kid's birthday party on Saturday. I don't like to say "I'm sick" in front of my ailing mother. He really put me on the spot. I can't lift my mom and it's a lot of stress on me to get her out at all even when someone else does the heavy lifting. It's all I can do to make myself look decent and get over to see her. This creates confusion because I put on my happy face and everyone takes me at face value. When I leave, I'm exhausted.

I'm either resting or spending my energy on the house which seems to be falling apart or going to an appointment. I do not have the energy to see friends regularly and not much chance to add in fulfilling experiences which no doubt would help my outlook. I'm severely lacking in the food department as my husband is intolerant to a few things I can eat and prepare well. My mom is on hospice and it's all I can do to scream "LEAVE ME ALONE! I'm doing everything I frigging can!!!!".

I'm at the tail end of a bad reaction to dairy. I'm tired and depressed. I don't even know what to say to people and a big part of me feels stifled, resentful, unheard, misunderstood... My fault for not communicating but how does one communicate something like this especially while feeling ill? It is just talking in circles about it. I don't want to be that person who goes on and on about her ills (except here where it feels safe).

I guess I should be happy I can make myself look healthy and fresh but it seems to create more confusion and my mom insists that I stop wearing the same old thing. Argh!!!!
I wonder who else is fascinated by another person's weight loss journey whether it be a friend, somebody on TV or writing in a blog. The psychological journey these people go on in order to lose weight impresses me. There are many demons to fight. I loved the show "Ruby".

Well, even though I am coming from the opposite end of the spectrum (needing to gain weight) and plenty of people would roll their eyes at this juncture, I am finding myself on a journey not that different from those I've seen or read about. I used to wonder what it was like to face your own demons like that (even though I THOUGHT I hid nothing from myself bwahahahahah!). Now I know that I, too, won't survive if I continue with the bad habits of the past. Those things that served me well then are hurting me now. How did I end up here?!?!?!

Maybe I get it. I had to conserve energy and so being compliant and pleasing was the easier way to go on the road of survival. Now, it's this second-nature people-pleasing behavior that appears in a different costume everytime but still, there's the double-edged sword. I people-please and get glutened. The chickens have come home to roost. It's not just my diet that has to change anymore. My own behavior is appalling to me. It's as if there are all these remnants of me stacked up and then there's this little fighting me that must eat my own cocoon. The thing that kept me safe and warm. Mi casa...

Another pickle In my life is, when I'm healthy for a while, I get back in touch with people and the life I long for slowly begins to show up for me. People are calling me once a month just to talk or with hopes to get together, and *BLAM!* I'm sick. I'm talking once a month they call so I want to make the best of it. This is awful. It's like a Greek tragedy. Healthy long enough to take a glimpse of wellness & the sweet life then it's all taken away. Now I have a list of people to call back and I feel wretched. What I wanted becomes what I don't want. Now I want to just crawl back in my shell. No one wants to hear my bellyaching. Do I be authentic or pretend?? Do I need to discern who to tell and when to be cordial? Gosh, that seems a few rungs up the ladder.

I must master how to communicate with people. It takes a lot of effort and clarity (and practice). This is a process and there doesn't seem to be a quick fix. There's no getting around it. It is essential.


That is all.

I'm Sorry

I must apologize, in advance, for making such bluesy feelings public. Maybe it's a generational thing but I learned as a child that publicizing anything that looked close to "sour puss" just won't cut it. So I'm sorry for that. Maybe this is the start of becoming a genuine human being.

I'm sorry for being apathetic today. I was so active yesterday and it felt good to get so much accomplished. Maybe I should pat myself on the back for clearing this as a day of rest because I knew I would need it. Still, I'm sorry that I'm weak.

I'm sorry that once I get 30 days out from being glutened, I get some c%$#$amamie idea in my head that I don't really have a severe problem eating gluten and that it was possibly all in my head. It's not that I would EVER intentionally eat gluten, but I'm pretty sure it makes me more vulnerable to getting glutened. I am just recovered from eating gluten in a restaurant two weeks ago and I'm sorry for being an idiot for eating in a restaurant. That's how I feel. Like an idiot. Why would ANYONE eat in a restaurant if there was a risk of getting THIS SICK?!? It's so stupid. I'm so angry at myself. Disgusted, sad, depressed, apathetic, dog tired...

I'm sorry that I just get on a good routine and then get glutened. Pretty soon, expensive food sitting in my refrigerator has to be thrown out and I don't even know what I had been excited to make. It seems like everything goes out the window... keeping in touch with friends, cooking, finishing projects, having goals much less keeping them. I'm so sorry for all of that.

I'm sorry that I don't understand why someone can be so excited about a wrinkle cream. We're all going to die. Who cares? Most of all, I'm sorry that I feel unable to get excited about something that brings joy to others and that, right now, I seem to have an inability to even understand that joy.

I'm sorry that I didn't respond and thank the contributors on my last two topic postings. Life blew me away and then gluten. I was helped by every single person who posted and never said thank you. I have a happy gluten-free story and it's a short one but I'm sorry that I haven't shared it. I may only share my experiences moving forward. What I have been through the past ten years is horrifying and I'm not sure I can go back and write about it all. Who would want to read that much not to mention, it's mortifying.

Most of all, I'm sorry for being lonely and feeling sorry for myself. You'd think this is something within my control but it takes so much energy and I'm tired.