New To Celiac And Struggling, Need Some Advice.

[JennyD]

Hi, I am new to the forum and somewhat new to Celiac. I was diagnosed in January of this year. I’ve got a couple questions and some venting I need to do. I’m not sure where to start, with the feeling of isolation, or the feeling of having all the pressure on my shoulders with every meal when we travel/eat out while watching my dining companions get more and more frustrated with me, the anger that rears its ugly head from time to time, or the incredibly frustrating process of healing and learning to cope with and accept Celiac.

Don’t get me wrong, I am thankful for my diagnosis; I am now 28 and spent the last 20 years of my life ill with “mystery” symptoms that would come and go. Doctors never could figure out what was wrong with me and I was always dismissed and told I was fine when I was clearly not. I am really thankful to know what is actually going on now after years of struggling with feeling terrible, but it is still quite frustrating learning to cope and live again for both me and those around me.

I guess my questions are…

1. Does it get easier? I’m sure it does I am just having a hard time seeing a light at the end of this frustrating tunnel.
2. My boyfriend’s family is incredibly unsupportive and do not listen to me or read any of the material I give them about Celiac, it’s not that they don’t care; they just take the attitude of “we know better”. Any advice for dealing with people like this? We typically go there for holidays and they come by the house a few times a year.  Just this last week my boyfriend’s mother house sat for us while we were out of town, I gave her instructions on how and where to store her food along with more material and long long conversations about do’s and dont’s and why things are this way. When we got back I had wheat thins all over my counters, Oreos on top of a knife set (not sure how she managed this) and open containers of gluten-y food in my refrigerator… I was so upset and infuriated by the lack of consideration and I’m not sure how to approach this. I ended up sick for the better part of last week, I’m fairly certain that my hours of cleaning didn’t get rid of all the cc in my kitchen, I want to point this out to her but do so in a constructive way.
3. Does anyone have any tips on dealing with glutenings? I get terrible brain fog and fatigue; I’m essentially useless for about a week. As of now I do plenty of water and walks throughout the day to help with joint pain.
4. How do you all deal with impatient friends when eating out? We travel a lot and I pack as much as I can with me but inevitably we end up eating out at some point. We were in Vegas last week and the restaurant we were going to was booked so we had to change out plans. I had one of our party get quite impatient with me while I located another restaurant that I could eat at and feel safe about it. I am so over sensitive about this that I find I just get frustrated in these situations instead of being assertive, help lol…
5. I have a gluten eater in my household, so far we have been successful to avoid cc (minus when his mother threw it all over my kitchen), any extra advice on this topic is appreciated.
6. Any advice for the holidays? To this point I have been pre-cooking all my meals and bringing them with me on trips to families’ homes, I have not yet gone through a holiday season with Celiac however. I have family that wants to cook for me but that makes me incredibly nervous with some of them. How do you tell someone you don’t trust them to cook for you lol, this seems so… rude doesn’t it? At least it does to those who havent listened or read anything about Celiac.

I think this is It for now, thanks in advance for your all’s help. Just reading through others’ struggles and stories has been a huge help so far. Sorry for the novel lol.

[BlessedMommy]

First of all (((hugs))). Second of all, breathe! Everything will be okay! 

 

1) Yes, it gets easier. The gluten free diet gets easier with time and practice.

 

2) I wouldn't worry about educating someone if they don't want to be educated and don't care about your wishes. Just get a different house sitter who won't gluten your kitchen.

 

3) Unfortunately on glutenings, I don't know of any sure tricks to get through them. Mainly water, rest, and simple food. 

 

4) If you are going to an area and think that you'll eat out there, I would research as much as you can before hand about safe restaurant options and do as much of your homework ahead of time that you can.

 

5) Brush teeth and floss before kissing. Don't allow food anywhere other than the kitchen and make sure that things are cleaned up well. 

 

6) Always bring your own food. Take it from me, it's easier just to make a rule up front that others may not cook for you than to allow them to do so at first and change your mind later. Another option is to host gatherings at your own house and make the whole meal gluten free. Think of it this way, if you had a life threatening allergy to something would you want someone to cook for you? Most likely not, because any mistakes could be deadly. Most other people wouldn't want that responsibility anyway.

 

Celiac IS life threatening, but it will just kill you slowly rather than quickly. No need to feel rude or apologetic, just make an up front rule that others can't cook for you.

 

Hang in there! You can do it.

[Serielda]

Hey Jenny,

I am new as well, I was diagnosed in June, and trust me I understand fully the frustrations your experiencing. (Hugs).

I myself have lost friends who wanted to argue it was all in my head based off of idiots like kimmel, Fallon. And others. I politely told them it is what it is and if I can accept their annoyances of conditions they have , please understand. Guess what, two of them couldn't so well we are not speaking but I know who my real friends are. They are the ones who will have your back, I'm glad I have that small few. When I was diag'd my hubby went into over drive, bless his heart and mind. He informs everyone who comes over please no gluten in the house, most respect it that make the drive to come visit us from out of town. Poor hubs himself stated your not doing this alone, nor make you feel bad giving up your faves so I'm going gluten-free too. He has been beyond awesome. But accidents do happen. Rookie mistakes have happened because I'm new. The time it happened I went on a internet frenzy and found some helpful things. I use gluten-free ginger and or mint teas. Always check to ensure teas are not using barley as a preservative, I learned this from a few gluten free magazines the hubs picked up. Two I drink gluten free probiotics like Kevita or synergy gluten-free kombucha to start putting good probiotics back in. And water. I also have learned from people here this is a great network of others with tons of info.

On going out with friends, we've learned this as well to compromise

Ok if ya'll want to eat at x place I can't go, we'll catch up later for bowling/movie /etc.

alway plan ahead for food and crud. Go picnic has recently turned into a on the road/run plan b, there are threads on this.

I won't lie, at the start of this at the start of June I was crying, I'd been a vegan for a year and had given up already so much.(vegan as I don't trust all the hormones and junk injected in livestock and other health reasons), now I had to give up even more. But the next day I looked in the mirror and quoted Woody Harrelson from zombie land _up or shut up seri, it's gonna be a bumpy ride.

I look back now at that day and am realizing things, as to my fatigue, wild mood swings, unable to focus. I'm learning things before that used to confuse me or had no patience to do. It's happening slowly but it's happening. This animal was making my life horrible and making me feel like a shadow of my days in my early to mid 20's, being in upper 30's and scared of your body's tantrums at it not tolerating something's is not living. I even am setting goals to help keep me motivated. I keep a picture in my wallet and phone of the last time I got glutened as a reminder to myself when I feel woeful to remind me of it will get better, in that things can only go up from here.

Hi, I am new to the forum and somewhat new to Celiac. I was diagnosed in January of this year. I’ve got a couple questions and some venting I need to do. I’m not sure where to start, with the feeling of isolation, or the feeling of having all the pressure on my shoulders with every meal when we travel/eat out while watching my dining companions get more and more frustrated with me, the anger that rears its ugly head from time to time, or the incredibly frustrating process of healing and learning to cope with and accept Celiac.

Don’t get me wrong, I am thankful for my diagnosis; I am now 28 and spent the last 20 years of my life ill with “mystery” symptoms that would come and go. Doctors never could figure out what was wrong with me and I was always dismissed and told I was fine when I was clearly not. I am really thankful to know what is actually going on now after years of struggling with feeling terrible, but it is still quite frustrating learning to cope and live again for both me and those around me.

I guess my questions are…

• Does it get easier? I’m sure it does I am just having a hard time seeing a light at the end of this frustrating tunnel.
• My boyfriend’s family is incredibly unsupportive and do not listen to me or read any of the material I give them about Celiac, it’s not that they don’t care; they just take the attitude of “we know better”. Any advice for dealing with people like this? We typically go there for holidays and they come by the house a few times a year.  Just this last week my boyfriend’s mother house sat for us while we were out of town, I gave her instructions on how and where to store her food along with more material and long long conversations about do’s and dont’s and why things are this way. When we got back I had wheat thins all over my counters, Oreos on top of a knife set (not sure how she managed this) and open containers of gluten-y food in my refrigerator… I was so upset and infuriated by the lack of consideration and I’m not sure how to approach this. I ended up sick for the better part of last week, I’m fairly certain that my hours of cleaning didn’t get rid of all the cc in my kitchen, I want to point this out to her but do so in a constructive way.
• Does anyone have any tips on dealing with glutenings? I get terrible brain fog and fatigue; I’m essentially useless for about a week. As of now I do plenty of water and walks throughout the day to help with joint pain.
• How do you all deal with impatient friends when eating out? We travel a lot and I pack as much as I can with me but inevitably we end up eating out at some point. We were in Vegas last week and the restaurant we were going to was booked so we had to change out plans. I had one of our party get quite impatient with me while I located another restaurant that I could eat at and feel safe about it. I am so over sensitive about this that I find I just get frustrated in these situations instead of being assertive, help lol…
• I have a gluten eater in my household, so far we have been successful to avoid cc (minus when his mother threw it all over my kitchen), any extra advice on this topic is appreciated.
• Any advice for the holidays? To this point I have been pre-cooking all my meals and bringing them with me on trips to families’ homes, I have not yet gone through a holiday season with Celiac however. I have family that wants to cook for me but that makes me incredibly nervous with some of them. How do you tell someone you don’t trust them to cook for you lol, this seems so… rude doesn’t it? At least it does to those who havent listened or read anything about Celiac.

I think this is It for now, thanks in advance for your all’s help. Just reading through others’ struggles and stories has been a huge help so far. Sorry for the novel lol.

[icelandgirl]

Hi Jenny and (hugs),

I was diagnosed in January too. I think the diet gets easier for sure...I don't think about it that much anymore...kind of comes naturally now. Emotionally I still find this to be frustrating, but that's because despite being 100% gluten free I'm having issues.

People not being supportive is annoying for sure...I get that. I'm not sure that gets easier.

Welcome to the board and please keep posting. We can all learn from each other and support each other on here.

[JennyD]

I really appreciate all of your advice and motivating words, this really is very helpful. I think I need to get better at being assertive before I get into a situation and stop feeling like I need to accomidate folks lol. I know that sounds silly but this has been a huge adjustment for me. I will keep posting and again, I appreciate all the positive encouragement. This will get easier  

[nvsmom]

• Does it get easier? I’m sure it does I am just having a hard time seeing a light at the end of this frustrating tunnel.

Yes, it gets easier.  It takes a few months but it does.  Once you get a new core of recipes, brands and places to shop it becomes almost effortless.  The only time I balk a bit is when travelling and that is because I have 3 very picky young gluten-free eaters to accommodate; if it was just me, it would be easier

• My boyfriend’s family is incredibly unsupportive and do not listen to me or read any of the material I give them about Celiac, it’s not that they don’t care; they just take the attitude of “we know better”. Any advice for dealing with people like this? We typically go there for holidays and they come by the house a few times a year.  Just this last week my boyfriend’s mother house sat for us while we were out of town, I gave her instructions on how and where to store her food along with more material and long long conversations about do’s and dont’s and why things are this way. When we got back I had wheat thins all over my counters, Oreos on top of a knife set (not sure how she managed this) and open containers of gluten-y food in my refrigerator… I was so upset and infuriated by the lack of consideration and I’m not sure how to approach this. I ended up sick for the better part of last week, I’m fairly certain that my hours of cleaning didn’t get rid of all the cc in my kitchen, I want to point this out to her but do so in a constructive way.

That's tough. My MIL became understanding when my hubby had a talk with her about it.  She would do anything for him, for me it's not so much.  LOL  Have you boyfriend talk to her and show her how easy cooking gluten-free is.  Make great BBQs, roasts, meatballs, fish, rice, potatoes or whatever.  Stuff that is naturally gluten-free. Ice cream for dessert.  Stuff like that.  She'll learn and get better.

 

That being said, when you eat at her home, you better bring a dish or two to be helpful and to protect yourself.  Before dinner starts, ask to read labels to make sure it's safe, and beware of stuff like butter and sugar that will be contaminated... get your boyfriend to educate her on cc if you can.

• Does anyone have any tips on dealing with glutenings? I get terrible brain fog and fatigue; I’m essentially useless for about a week. As of now I do plenty of water and walks throughout the day to help with joint pain.

Rest and water.  L-glutamine is supposed to help with healing of the mucosal lining; it might e worth taking during the first year.

• How do you all deal with impatient friends when eating out? We travel a lot and I pack as much as I can with me but inevitably we end up eating out at some point. We were in Vegas last week and the restaurant we were going to was booked so we had to change out plans. I had one of our party get quite impatient with me while I located another restaurant that I could eat at and feel safe about it. I am so over sensitive about this that I find I just get frustrated in these situations instead of being assertive, help lol…

I'm very lucky in that most of my friends eat gluten-free or very low gluten so we have similar tastes.  Still, I rarely eat out. Part of that is fear (eating out isn't worth the risk to me) and the rest is laziness - I have three boys who are hard to take out (picky gluten-free eaters).

• I have a gluten eater in my household, so far we have been successful to avoid cc (minus when his mother threw it all over my kitchen), any extra advice on this topic is appreciated.

Did you actually get sick from your MIL or were you just offended by her thoughtlessness (I would have been too).  Usually if you keep cleaning surfaces clean, don't share toasters or scratched plastic or wood cooking tools, you should be fine.  As someone else said, brushing and rinsing teeth are important too.  

• Any advice for the holidays? To this point I have been pre-cooking all my meals and bringing them with me on trips to families’ homes, I have not yet gone through a holiday season with Celiac however. I have family that wants to cook for me but that makes me incredibly nervous with some of them. How do you tell someone you don’t trust them to cook for you lol, this seems so… rude doesn’t it? At least it does to those who havent listened or read anything about Celiac. 

Bring a few dishes.  Holidays will never be easy for you unless you go to another gluten-free home or have someone who eats mostly gluten-free and is willing to make the effort. Most people won't get how careful you need to be and it won't be safe.  You can ask ahead of time that the turkey not be stuffed, and quiz them on the seasoning and sauce choices, but most people won't realize that gluten is in soy sauce, worchestershire sauce, or even that malt vinegars are unsafe.  Bring a few dishes and then you can be sure you'll have food to eat.

 

On the bright side, you get to eat dishes that you want.  LOL

[DeborahG]

Hi, I am new to the forum and somewhat new to Celiac. I was diagnosed in January of this year. I’ve got a couple questions and some venting I need to do. I’m not sure where to start, with the feeling of isolation, or the feeling of having all the pressure on my shoulders with every meal when we travel/eat out while watching my dining companions get more and more frustrated with me, the anger that rears its ugly head from time to time, or the incredibly frustrating process of healing and learning to cope with and accept Celiac.

Don’t get me wrong, I am thankful for my diagnosis; I am now 28 and spent the last 20 years of my life ill with “mystery” symptoms that would come and go. Doctors never could figure out what was wrong with me and I was always dismissed and told I was fine when I was clearly not. I am really thankful to know what is actually going on now after years of struggling with feeling terrible, but it is still quite frustrating learning to cope and live again for both me and those around me.

I guess my questions are…

1. Does it get easier? I’m sure it does I am just having a hard time seeing a light at the end of this frustrating tunnel.
2. My boyfriend’s family is incredibly unsupportive and do not listen to me or read any of the material I give them about Celiac, it’s not that they don’t care; they just take the attitude of “we know better”. Any advice for dealing with people like this? We typically go there for holidays and they come by the house a few times a year.  Just this last week my boyfriend’s mother house sat for us while we were out of town, I gave her instructions on how and where to store her food along with more material and long long conversations about do’s and dont’s and why things are this way. When we got back I had wheat thins all over my counters, Oreos on top of a knife set (not sure how she managed this) and open containers of gluten-y food in my refrigerator… I was so upset and infuriated by the lack of consideration and I’m not sure how to approach this. I ended up sick for the better part of last week, I’m fairly certain that my hours of cleaning didn’t get rid of all the cc in my kitchen, I want to point this out to her but do so in a constructive way.
3. Does anyone have any tips on dealing with glutenings? I get terrible brain fog and fatigue; I’m essentially useless for about a week. As of now I do plenty of water and walks throughout the day to help with joint pain.
4. How do you all deal with impatient friends when eating out? We travel a lot and I pack as much as I can with me but inevitably we end up eating out at some point. We were in Vegas last week and the restaurant we were going to was booked so we had to change out plans. I had one of our party get quite impatient with me while I located another restaurant that I could eat at and feel safe about it. I am so over sensitive about this that I find I just get frustrated in these situations instead of being assertive, help lol…
5. I have a gluten eater in my household, so far we have been successful to avoid cc (minus when his mother threw it all over my kitchen), any extra advice on this topic is appreciated.
6. Any advice for the holidays? To this point I have been pre-cooking all my meals and bringing them with me on trips to families’ homes, I have not yet gone through a holiday season with Celiac however. I have family that wants to cook for me but that makes me incredibly nervous with some of them. How do you tell someone you don’t trust them to cook for you lol, this seems so… rude doesn’t it? At least it does to those who havent listened or read anything about Celiac.

I think this is It for now, thanks in advance for your all’s help. Just reading through others’ struggles and stories has been a huge help so far. Sorry for the novel lol.

I am facing many of the same situations and have many of the same questions as well.  I really am looking forward to any help in these areas as well.  I find myself brought to tears often although my immediate and extended family and friends are very supportive.  I have only ben gluten-free for six weeks now.  I am trying to organize stores, foods lists, cooking schedules never mind CC issues and the thought of purchasing all new kitchen utensils, dishes and everything.  I do want to know if washing items in the dishwasher negates any contamination issues?

[SMRI]

Your boyfriend needs to get on the same page and start helping you instead of tossing obstacles in your way to healing.  I was also diagnosed in June and was expecting a little push-back from my husband.  I have some family members that are Celiac and have been way over the top about dealing with their Celiac and he hasn't been the nicest person about that  LOL.  He said he would just go gluten-free at home, which he has, but he hasn't really looked into how to be gluten-free either.  He brought home some candy he thought I would like the other day--nice, but read the label--wheat was the second ingredient in both.  I asked him what he thought being gluten-free meant and he said "well, flours and stuff".  He'll catch on, eventually.

 

Extended family, there isn't much you can do there and it's really not worth trying if they aren't going to express interest in learning.  Bring your own food and call it good.  For the holiday season, either offer to host and make food or bring your own.  I've hosted most holidays at our house just because we have the space.  Generally I just buy everything and make it and others kick in part of the costs for the food, etc.  Since my sister and niece have been diagnosed, they have brought gluten-free versions of some of the foods--bread/rolls, etc. but pretty much everything else has been gluten-free naturally--turkey, mashed potatoes, etc.

 

When talking to my GI team and the nutritionists/dietitians, they said that as long as you can clean items, the will be safe and that washing dishes in the DW with other dishes that had gluten is fine unless your dishwasher is crappy and leaves food on your dishes.

 

We are going to go visit my in-laws tomorrow---she will have all kinds of food, none of which I'll be able to eat--I'll just bring stuff from home.  I'm not even sure they know I was diagnosed LOL.  Hubs usually calls them on his way home from work and he isn't the best about passing along info.  Holidays will be hard, mainly because everyone in Hub's family are such good cooks/bakers and I won't be able to eat any of it!!

 

I guess the main message is no one else can take responsibility for your food other than you and if you expect people to do that for you, it will only cause resentment on all sides.  My sister is one that expects everyone to make sure they have food for her and she will go as far as calling caterers for parties and such to make sure they offer something gluten-free--even if it ends up costing the host more money.  That is just too much in my book. Bring your own food and enjoy the company and knowing you won't be sick tomorrow.

[cyclinglady]

I am facing many of the same situations and have many of the same questions as well.  I really am looking forward to any help in these areas as well.  I find myself brought to tears often although my immediate and extended family and friends are very supportive.  I have only ben gluten-free for six weeks now.  I am trying to organize stores, foods lists, cooking schedules never mind CC issues and the thought of purchasing all new kitchen utensils, dishes and everything.  I do want to know if washing items in the dishwasher negates any contamination issues?

The dishwasher does a great job of cleaning gluton off of dishes. If hand washing, wash separately and use a dedicated Gluten free sponge or cloth.

[GF Lover]

KathyKat.  I made your Post a New Topic so replies you get will be relevent to your situation.

 

Find it here:  https://www.celiac.com/forums/topic/109328-diagnosed-but-not-gluten-free-yet/#entry930395