Introduction... and a question

[TheBajan]

Hello Everyone,

I want to take a minute to introduce myself and then ask a question. First, I have to admit that I am still reeling in shock about this. I went to my doctor in March for a normal checkup. I hadn't been there in a couple of years (I don’t really trust doctors and I hate taking meds). We will be losing our insurance at the end of this year so I thought it would be a good idea. That visit led to several other visits with various specialists and on May 2nd, I had an EDG and colonoscopy. I was diagnosed with Celiac. I'm ashamed to tell you what I thought about that. I can say I was in denial for a couple of weeks. Still, I started to look it up online while I waited for my follow-up visit.

On May 22nd, I posted this to my Facebook page….

Diet update: The last three weeks have been rough. In the early part of May I spent 8 days traveling as we welcomed my husband back home from a 14 month deployment in the middle east. Shortly after that, a family emergency took me away for a few more days and since my husband has been home, we are just now finally getting some time together. As far as my food choices, I've done pretty well considering all the curve balls I've dealt with but regarding weight loss, it's been only a couple of pounds. I'm continuing to meet MOST of my exercise goal on a daily basis. I'm doing surprisingly well staying away from the salt shaker. As most of you know, this all began after I went to the doctor on April 1rst and had a wakeup call regarding my health. Well, that doctor's visit has led to other doctor visits that have led to some surprising information. In the past week I've learned that I actually have Celiac Disease. I'm almost embarrassed to admit that my first reaction was shock to learn that Celiac Disease is a real thing. I've gone through a range of emotions about this and I've been doing a lot of Google research and writing a growing list of questions for my doctor. It really explains A LOT of the issues that I've dealt with my entire life. I just never realized they were anything but normal. For the most part, I am feeling relief to have a diagnosis so that I can know how to address it. However, yesterday, I found myself weeping. The reality hit me yesterday. As I've said before, carbs (pasta, bread, etc.) are my downfall. They are the comfort food I run to. In a sense, I feel like I'm mourning the loss of a dear friend. It also makes me sad because I know it means that it will be an inconvenience to my extended family and friends when we gather for meals or want to go out for dinner. When I decided to post about my dietary changes, I knew it would be a long, and uncomfortable journey. I didn't realize it would be intertwined with even more personal aspects of my life. This is me... staying committed to a decision that is waaaay outside of my comfort zone. I'm not sure if it's helping or not but for now I will keep posting. I am doing this because I need the accountability and at the same time, I hope that my transparency will help someone else who is reading this. If anyone reading this has Celiac Disease or any advice regarding resources, I would appreciate it. Have a great week!

Okay, fast forward a bit. Last Thursday I turned 50 years old. I also had that follow up appointment where they explained more about Celiac and ran a number of blood tests. We went to my son’s home and celebrated my birthday with an honest attempt from my daughter-in-law to accommodate my new dietary needs. Still, I found that everyone really didn’t understand (how could they? I don’t!).

I’m overwhelmed with how much there is to learn. What I should be doing, what I need to get rid of, how do I deal with cross-contamination in a kitchen that is not gluten free. One of my son’s is visiting with his family from Georgia and they want us to meet for breakfast tomorrow morning at Cracker Barrel. I’m so afraid to go because I know there isn’t going to be anything I can eat. I am afraid of being “that” person who makes the gathering awkward. To understand why, you have to know a bit more about me.

Six years ago I got fed up with being sick. I got fed up with being fat, depressed, always exhausted, always coughing, silently dealing with pain, always worried about incontinence. Six years ago I literally had to walk out of my son’s graduation ceremony due to a lack of “control”. I swore that would be the last time it ever happened. So, believing that all of my health issues where related to being overweight, I went on a diet for the first time in my life. Not a fad diet… I didn’t follow a rule book. I simply started to eat clean. I had no idea that ‘clean eating’ was a thing, it was just a starting point for me that made sense. Over the following two years, my ‘diet’ continued to evolve until I eventually became about 80% raw vegan. I lost 72 pounds! I had more energy than ever and most of my health issues all but disappeared. (BTW, I also have Lupus.)

It was during this period of time that I first heard of Celiac Disease. My mother told me about it. My mother had heard about some Hollywood star that had Celiac and decided that meant she had it also. My mother is like that, she always self-diagnoses whenever she learns about a new illness. Of course, she never actually got tested and only stuck to her gluten free diet for about 12 hours (if that). I let it go in one ear and out the other. I never even thought about it for a single second.

While I was on my diet of pretty much just whole foods, I didn’t actually attempt to eliminate gluten. That said, the process of clean eating drastically reduced gluten in my diet. Knowing what I do now, it all makes so much sense.

Reading through the posts on this forum and other websites, I am in awe at how much I see myself in your posts. I feel like I was born blind so I never knew what it was like to have vision… being sick was so normal that I had no reference frame of what it was like to be well.

So, back to my fear of being “that girl” at the restaurant. Two years after starting those dietary changes, my youngest son (17 at the time) really hit me in the heart. He was angry and said some things about me having too much focus on my diet and not enough on him. As a mother, it crushed me! And it ended my healthy journey. He apologized but the damage was done. Everything fell apart and I went completely back to all my old habits. Over the next few years, I gained all of the weight back and my health became worse than ever.

Sorry (I’m a bit long winded). My question is, should I go to breakfast and sit there sipping water or should I stay home? Either way, I’m going to be upsetting my son who doesn’t understand how serious this is. After all, for the past 50 years I’ve been eating gluten and I’m not dead so in his eyes, how serious can it really be?

One more thing… I am a serious introvert. I don’t like crowds of more than 4 or 5 people, even those people I love the most. Forums are great because I can be invisible. That’s part of what plays into this fear as well.

Thanks for listening. Any suggestions would be appreciated.

The Bajan

[cyclinglady]

I am so sorry that you have been sick (we've all been there!).  The good news is that you can really improve your health by strictly adhering to a gluten free diet.  

I went shopping today with a girlfriend, her daughter and my daughter.  Time was tight so we ate at Chick fil a.  I ordered a coffee (very good) with cream.  I drank while they ate and enjoyed the conversation.  No one had a issue with it.    I have explained how I need to be safe and my friends have adapted.  The goal was to have fun and shop.  Not to eat!  (BTW, I always pack gluten-free goodies and I ate at home before I left).  I know that I some folks eat out at Chick fil a  but I save risky behavior  for big things like vacations abroad or much nicer restaurants where I can talk to the head chef, or those recommended on "Find Me Gluten Free" with reviews made by a celiac.

My family was tougher.  Believe it or not, my Mom did not get it even after I gave her copies of my diagnosis.  But one day, I had a complete melt down and threatened to fly home.   I am a big girl (over 50) and I do not have to crap from anyone --- including my mother.  But, everyone settled down and now my family is on board.  

My hubby has been gluten-free for 15 years, so I knew the drill.  When I got my diagnosis, I made the house 100% gluten free.  My daughter?  Too bad.  She eats gluten free at home.  She gets her gluten fix at school and at restaurants.  Her friends often made her a PB&J sandwich, believe it or not!  I drop boxes of cake mixes, etc. at her friend's house so that they can bake.  She knows that she is a kid.  I rule.  Her Dad rules.  We are number one.  She's a kid.   She'll be leaving soon for college.  We love her so much but in the end, it's just her Dad and me (married 26 years).  

Our health comes first.  Without it, we wouldn't be able to work and maintain our current way of life.  

We have lots of parties.  Just had a big ice cream social with all our daughter's friends and families to kick off summer!   Not  a speck of gluten.  Same goes for all holidays which I usually host.  All gluten free.  Sometimes, we go to their house, so I bring gluten-free food for hubby and me.  It works.  

I can even stay at the family lake house.  I just watch and help prepare food.  I make sure that hubby and I eat first safely and then the rest of the family digs it.  No seconds for us.  I also keep a bin of pans and things that we use while we are there.  

But that's about me.  What about you? Only you can decide what's best for you.  Having celiac disease is hard at first, but it does get better.  Things become routine.  I would recommend a local celiac group and perhaps consider counseling for you.  Your family problems extend beyond gluten.    Maybe a family meeting can be made down the road.  Hand out celiac information.  If they disregard it, then you know where you stand.  Just because they are family does not mean you have to hang with them.  

I will mention that all your first-degree relatives should be tested even if they are symptom free.  I tested my kid and she's okay.  I pushed gluten on her daily for three months before testing.  I'll do it again in a year or so.  Wouldn't it be ironic if your son had celiac disease too?  

Welcome to the forum!  We are all here to support each other!  

P.S.  Check out our Newbie 101 thread under the "Coping" section for great tips!

 

[Jmg]

You've found a great forum, the advice and help I got here was, and is, so important. Especially when you know people around you don't understand both the practicalities and also the emotional toll. 

I've had many similar experiences, for instance:

 

While I was on my diet of pretty much just whole foods, I didn’t actually attempt to eliminate gluten. That said, the process of clean eating drastically reduced gluten in my diet. Knowing what I do now, it all makes so much sense.

 

Yup been there!

Your shock, grief etc. is natural. Focus on getting yourself well, the good news is you may find a lot of things improving that you would never have guessed were related to gluten or indeed diet.  Best of luck

 

[GFinDC]

Hi TheBajan,

Welcome to the forum!

Being gluten-free is a medical diet, so now your son will have to accept the change.  He may not understand it, but that's ok.  I doubt he would complain to a diabetic about their medical diet, or any other person's medical diet for that matter.  But people sometimes don't take celiac disease seriously, even though it is.  Maybe you can post a copy of your diagnosis on the refrigerator door to remind him, it's not all about him.  And it's a real thing.

I suggest calling the Cracker Barrel and explaining your situation.  Ask if you can bring your own food to eat there, since you have celiac disease.  Otherwise you'll have to eat somewhere else with your family.  They may have a gluten-free menu at some locations, but I don't know if it is safe to eat there.

Open Original Shared Link

Open Original Shared Link

You  can try searching the web for your city name and gluten, you may find other restaurants that do gluten-free.

[TheBajan]

It seems that I have caused a bit of confusion. Let me clarify. I have 5 sons and a daughter. All of them are grown and out of the house. My youngest son  (who made the hurtful comments) apologized almost immediately. He's actually the most compassionate about this. My son visiting from Georgia is a twin and the oldest. He is the one that wants to meet for breakfast. He's not being cruel, he just doesn't know better. I'm on my way to the restaurant now. Thank you for your kind words and suggestions. 

[frieze]

i am hazarding a guess the 17 year old wanted something from you but was not able to ask directly.  i don't mean a concrete "thing", necessarily, attention perhaps.  anyway, you need to get back to taking care of your self.  i suspect you have been a "caregiver" all your life.  there is a saying, "ain't nobody happy, if mama ain't happy"...

[TheBajan]

 

i am hazarding a guess the 17 year old wanted something from you but was not able to ask directly.  i don't mean a concrete "thing", necessarily, attention perhaps.  anyway, you need to get back to taking care of your self.  i suspect you have been a "caregiver" all your life.  there is a saying, "ain't nobody happy, if mama ain't happy"...

Frieze, you would be correct. He is now 21 but at 17 he was struggling (as 17 year olds do). He had a lot of anger issues with his father. Unfortunately, as I was the only one present, I became the scapegoat. He is a wonderful young man and truly one of my greatest allies. As a side, he and his father also have a great relationship.

You are also correct that I've always been, and I still am, a caregiver. Raising as many kids as I have, you pretty much have to be. They are all grown now. Yet, my mother has lived with us for the past three years. She's older and has a lot of her own medical issues. She's at that place in her life that she needs help so I'm here. My husband has almost 30 years in the military and our marriage has been filled with lots of extended deployments. During those times, it's been me taking care of things. When he gets back, it's bumpy for a while and just as we get the hang of being together again, it's time to do it all over again.

I've heard that saying. I'm not sure it applies to me. I often feel isolated. Either no one notices I'm unhappy, or they just see it as so normal that it doesn't matter. I'm truly hoping that I can figure out who I am and what being healed will bring about in my life. My emotions have been so turbulent, shock, relief, anger, confusion, regret, fear, embarrassment, even shame... so much I can't process it all. I lost my own identity years ago and I'm ready to come to life.

Thanks so much for your post.

[cyclinglady]

Thanks for clarifying.   I hope your breakfast went well!  

 

[TheBajan]

 

Thanks for clarifying.   I hope your breakfast went well!  

 

It was pretty much exactly what I feared. My husband and I arrived before my son so I dared to ask to speak to the manager. She assured me that she would let the cook know to take measures in preventing cc and showed me their gluten free menu. When it was time for everyone to order, I felt so awkward. I had to ask a few questions of the server and in the end I decided I didn't really trust any of the options. To make matters worse, the server was overly "compassionate" and kept going on about how terrible it must be for me. I wanted to just disappear. My family sat in stone silence as this transpired and once she left everyone simply pretended nothing had happened. God, I wish I hadn't gone.

 

[cyclinglady]

Oh, no!  I am so sorry!  Things will get better!  It just takes time to adjust.  

 

[Jmg]

 

It was pretty much exactly what I feared. My husband and I arrived before my son so I dared to ask to speak to the manager. She assured me that she would let the cook know to take measures in preventing cc and showed me their gluten free menu. When it was time for everyone to order, I felt so awkward. I had to ask a few questions of the server and in the end I decided I didn't really trust any of the options. To make matters worse, the server was overly "compassionate" and kept going on about how terrible it must be for me. I wanted to just disappear. My family sat in stone silence as this transpired and once she left everyone simply pretended nothing had happened. God, I wish I hadn't gone.

 

Well done for going. In your position I have in the past simply declined to go. So kudos to you for that. 

Congratulations also on asserting control over what you eat. You made your own judgment and backed it. That's really positive. If you were in doubt over their precautions you wouldn't have enjoyed the meal in any case as in the back of your mind you would be worrying. You will have to do this again in the future and it will get easier. 

Friends and family will become more accustomed to it over time. It's all new to them too and you need to make allowance for that. You can try and  lighten the mood with some humour next time. Say tell them that they'll have to move tables because you've seen a breadcrumb on the floor  When the server left it sounds like they were trying to put you at your ease, so take heart from that.

All of these encounters get easier on the tenth, twentieth time etc. Especially if you find venues you trust or chain restaurant meals you feel comfortable with. It can make ordering a lot easier because you don't have to worry about choice

[frieze]

 

It was pretty much exactly what I feared. My husband and I arrived before my son so I dared to ask to speak to the manager. She assured me that she would let the cook know to take measures in preventing cc and showed me their gluten free menu. When it was time for everyone to order, I felt so awkward. I had to ask a few questions of the server and in the end I decided I didn't really trust any of the options. To make matters worse, the server was overly "compassionate" and kept going on about how terrible it must be for me. I wanted to just disappear. My family sat in stone silence as this transpired and once she left everyone simply pretended nothing had happened. God, I wish I hadn't gone.

 

they likely did not say anything to protect your feelings.  

This is going to sound harsh, get over it.   you are WORTH the work.  you are worth your families respect.  BUT, you need to demand it, you are going to put them out of their comfort zone, so be it.  Yes, humor will help, but if you are the introvert/private sort, this will not come naturally either.  once you heal, your personality may become sl different.  your social skills may improve.  and at your age, are you premenopausal on top of the gluten issues?  

when i was young, i was in 4-H, doing my first defense on judging of cattle, there was noise outside, i indicated that i thought it was about me, and the judge, rudely i thought at the time, implied i was being rather silly, thinking that the world revolved around me. it proved to be a valuable, though uncomfortable lesson.   this is added to explain my get over it comment.

 

[squirmingitch]

You've been given some great advice!

I will only add that you couldn't EVER pay me enough to eat ANYTHING at Cracker Barrel!!!!! That is a place rife with flying gluten. Seriously! I don't care that they have any "gluten-free" items on the menu. I've never been in a Cracker Barrel that wasn't clogged with diners. They have to work FAST & FURIOUS to serve everyone. It's just not a place I would ever trust. They are way too busy in there.

[GFinDC]

Hi TheBajan,

That's always a good/wise option, just don't eat if you aren't sure it's safe.  Or bring an orange and a banana or some peanuts in your pocket to munch on.  Having celiac does give us an automatic license to pack a snack.  Sitting and staring at the other people while they eat and you fester is also kind of fun tho.  You can shoot them the eye-ball daggers of death. 

I've had good results eating gluten-free at Texas Roadhouse.  There is also PF Changs that has gluten-free food.  Many other chain restaurants have gluten-free food now also.

Celiac can be one of those somewhat inconvenient chronic, incurable diseases at times.  Other people have to face the reality at some point that these things exist.  And their not liking it or not wanting to deal with it is nothing compared to your own inconvenience and suffering.  They can adjust if they want to.

You are about the same age I was when I was diagnosed 9 years ago.  It took me years to feel a lot better.  Most of that recovery time was because of additional food intolerances that developed along the way.  And nutrient deficiencies I didn't know about or deal with for a while.   So it's not a condition that you want to treat lightly or let others treat like it doesn't matter.  Your good health depends on what you eat much more so than the average person.

Once you have been at the gluten-free diet for a while though, it isn't a hard thing to live with.  You can do just fine and have a fine time eating great food.  I live in a shared household with 2 GE's (gluten eaters) and do pretty ok.  I just have to keep an eye on things and rinse things before I use them.  No biggie.

Going gluten-free is a learning process, and it doesn't come overnight.  But you'll be fine in time.  Your family will live too, although they may be grouchy about it.  Really first degree relatives of a celiac should be tested for celiac themselves.  Since there is a genetic component to the condition, they may have inherited the genes and develop celiac at some point.

[TheBajan]

 

they likely did not say anything to protect your feelings.  

This is going to sound harsh, get over it.   you are WORTH the work.  you are worth your families respect.  BUT, you need to demand it, you are going to put them out of their comfort zone, so be it.  Yes, humor will help, but if you are the introvert/private sort, this will not come naturally either.  once you heal, your personality may become sl different.  your social skills may improve.  and at your age, are you premenopausal on top of the gluten issues?  

when i was young, i was in 4-H, doing my first defense on judging of cattle, there was noise outside, i indicated that i thought it was about me, and the judge, rudely i thought at the time, implied i was being rather silly, thinking that the world revolved around me. it proved to be a valuable, though uncomfortable lesson.   this is added to explain my get over it comment.

 

You're right, it does sound harsh. But again, you're right, I am worth it. You hit the nail on the head there. I have always struggled with a lack of self worth. I never want to put anyone out. I loathe being in the limelight. These are issues I am very aware of and while I don't see being an introvert as a personality disorder, I do see where my poor self image is hurting me and those around me. Thanks for the comments. Please know I appreciate them and take no offense. Also, yes, I do believe I am premenopausal.

Thanks to everyone who has taken the time to respond.

[Nikki2777]

I'm rushing to work, so I haven't had time to read every word here, but I feel so much for what you are going through I just wanted to add this:

Now is the time.

I'm  your age, and while I've never struggled with self-esteem issues (probably the opposite), I hate the limelight or drawing attention to myself. 

Now is the time - you and your health are too important to worry about what others think.  

Now is the time you say "**lls out.  I'm doing this"

So now I've gotten to the point where I say my bit in restaurants and too bad if others don't like it.  Or I eat a Kind bar and drink a glass of wine and realize that dining out is for chatting, not for food.   It's not my job to keep others from feeling awkward. My job is to value myself enough to take care of myself.

I had to insist certain families read some articles to understand the seriousness of this, that I couldn't cheat and yes, one crumb will make me sick. But beyond that, that is their problem.

Now is the time - don't live the second half of  your life cowering in fear for what others think.

I wish you the best on this journey.

 

 

 

[notme]

'cracker' barrel - you *are* new to this !!  lolz - nothing with cracker in the name is good for us lolz - what i do when i can't get around going somewhere that there is absolutely nothing i can eat:  eat before i go, order bottled water (or a glass of wine   )  and go chat.   nobody even blinks anymore (except the waitress sometimes haha)   my first family reunion post dx i brought my own food to eat and my brother in law (the skeptic) asked me what would happen if i ate gluten right now.  i was like: " nothing.  meaning, i won't drop to the floor in convulsions.  i won't have anaphylactic <however you spell it) shock.  i will spare you the bathroom details.  but in 24-48 hours i won't have the energy to get out of bed nor the fortitude to leave the house.  it will affect my whole body."   he just glared at me like i was a fraud, which pissed me off, so i told him another uncomfortable truth:  "nickelback sucks"  then we were both mad hahahaha

seriously:  my first restaurant visit with my in laws, my mil tried to feed me a cupcake (!) they have since chillaxed considerably.  as for my kids, one is a type 1 diabetic and the other has rhuemetoid arthritis (dx'd at age 12!)  so i just remind them that celiac and the g;f lifestyle is probably in their future so they better pay attention!!!  (diabetes and r.a., as well as thyroid issues walk hand in hand with celiac)  

we all understand.  we've all been there.  you can do this.  

welcome to the forum and to the best club you never wanted to join

ps - you think  *you *  were in denial??  that;s why my name is >notme"  lolz

[TheBajan]

 

'cracker' barrel - you *are* new to this !!  lolz - nothing with cracker in the name is good for us lolz - what i do when i can't get around going somewhere that there is absolutely nothing i can eat:  eat before i go, order bottled water (or a glass of wine   )  and go chat.   nobody even blinks anymore (except the waitress sometimes haha)   my first family reunion post dx i brought my own food to eat and my brother in law (the skeptic) asked me what would happen if i ate gluten right now.  i was like: " nothing.  meaning, i won't drop to the floor in convulsions.  i won't have anaphylactic <however you spell it) shock.  i will spare you the bathroom details.  but in 24-48 hours i won't have the energy to get out of bed nor the fortitude to leave the house.  it will affect my whole body."   he just glared at me like i was a fraud, which pissed me off, so i told him another uncomfortable truth:  "nickelback sucks"  then we were both mad hahahaha

seriously:  my first restaurant visit with my in laws, my mil tried to feed me a cupcake (!) they have since chillaxed considerably.  as for my kids, one is a type 1 diabetic and the other has rhuemetoid arthritis (dx'd at age 12!)  so i just remind them that celiac and the g;f lifestyle is probably in their future so they better pay attention!!!  (diabetes and r.a., as well as thyroid issues walk hand in hand with celiac)  

we all understand.  we've all been there.  you can do this.  

welcome to the forum and to the best club you never wanted to join

ps - you think  *you *  were in denial??  that;s why my name is >notme"  lolz

Hahahaha...  Thank you so much for the laugh. I never even thought about the name! Awesome reaction to your bil. On my birthday, my poor sweet daughter-in-law tried so hard to cater to me. I felt awful having to ask about ingredients. My other daughter-in-law (visiting from GA) got me a cupcake that was supposed to be gluten free. Unfortunately, it was not. I ate two bites of it. Not really knowing how to tell the difference between a gluten free cupcake and a regular one, I had no idea that it wasn't until I paid the price later on... and on... and on. She did have good intentions. I believe the bakery must have messed up the order.

I think this is the first time I've really been able to laugh about this. Thank You!!!

[squirmingitch]

Laughter is what will get you through this. That & an IRON resolve not to let ANYONE make you feel awkward about not eating something. I don't care if that is your own mother & she spent 14 hours preparing something especially for you. YOU are the ONLY gatekeeper to your good health. Stand your ground hon & stand tall & implacably. You are woman, hear you ROAR!

When next you are confronted with these awkward situations just envision yourself as Scarlett O'Hara standing up tall, narrowing her eyes, shaking her fist at the sky and saying, "As God is my witness, I'll never eat gluten again!" Be Scarlett.