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CDInSanDiego

Living With Celiac Disease - Stop Being a Victim

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I have had Celiac disease for five years, and have been on the same learning curve that many people on this forum have been on. It is a challenge to start, but once you find your way to navigating how to manage it, it just becomes a part of your lifestyle.

One aspect that I have not been able to figure out, and the reason I put this forum under "Coping with Celiac Disease", is the victim mindset that seems to be so pervasive in these forums. I am sure I am not the only one who one out there who feels that this "woe-is-me" mindset is detrimental to the public perception of those of us who have the disease.

When I am at a friend's house, or when I eat out at a restaurant, I consider myself to be a representative of the Celiac community, and as a result, I do not cope with Celiac Disease. I live with it. I manage it. I work with the people who will be providing me with food to keep me safe. I trust them to take on that task, and I present myself in a way that they would want to take pride in keeping me safe. I have not been disappointed.

I have never inspected a kitchen at a restaurant, and my friends know that I will need to read labels to decipher information they would miss. But my friends are willing to come on this learning curve with me because they care about me. 

 I believe that approach is everything and if I approach wait staff in a way that respects them and takes care of my needs, then I make it easier for the next person with Celiac to take care of their needs. How do you manage living with Celiac disease? What are your strategies for being a good representative of this community? I feel that together, we can approach living with this disease in a constructive manner and change the tenor of the conversation.

Take care all,

Rob

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There is definitely an element of "coping" that takes place once someone is diagnosed, and it varies greatly from person to person. There is a lot to learn, and there is a lot of stress that many people experience when they have to make huge lifestyle changes. I don't believe that the term "coping" in any way implies "victim." Learning to cope is a normal process after diagnosis, and this forum was set up to make that process easier by allowing others to share info, vent, etc.

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13 hours ago, CDInSanDiego said:

I am sure I am not the only one who one out there who feels that this "woe-is-me" mindset is detrimental to the public perception of those of us who have the disease.

You nailed it CDInSanDiego!

I'll quote you the next time my kids complain.

My husband was diagnosed with celiac in the late 1960s as a very sick young child. It was considered a rare childhood illness and he was crippled by eating gluten. He still feels very sorry for himself that he has been one of the very few who has had to be gluten free since that time when options were extremely limited and the "woe-is-me" mindset still lingers. So much so that he (along with our PCP) repeatedly refused to test our 10 children for it (since they didn't have the same extreme symptoms) so they could at least enjoy the gluten items he never could and avoid the social isolation that comes with the diagnosis.

I started to research more on the Internet about celiac disease. Earlier this year, I decided to take charge when he was away and got them tested. 8 out of our 10 were diagnosed and so the household is now totally gluten-free.

Needless to say, my husband often talked about how he felt sorry for himself (in front of the kids) being celiac yet insisted that the rest of us use regular (wheat) flour in the house to save money and so that the kids could enjoy regular gluten-filled treats and therefore he wouldn't 'burden' us with his health condition. He hates the term 'celiac disease' and much prefers to it to be referred to as 'celiac'. 

His attitude about all of this has definitely had a detrimental effect on not only our children's health but also their perception of life with the disease (which they are slowly overcoming, almost entirely thanks to my efforts 😂).

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I have mixed perspectives with Celiac, like mentioned above the term "Celiac Disease" comes off with a negative feeling. I call it celiac and refer to it as a "Genetic Condition" people here will hear "disease" and run for the hills and treat you like a leper.

I was adopted.....lived with a gluten family...."Victim" is a great way to describe it early on. My own family could not go gluten free and were so set in their gluten ways using it everywhere.....there were crumbs all over the place, gluten milk from cereal spilled on the couch, flour used for shaking pork chops, saltines mixed in burger and meat loafs, gravy made with fresh flour, flour flour flour......I was sick at least 2 days week to the point of not leaving a bed. The fog and confusion along with other issues had me going randomly bouts of violent outburst. I had gluten ataxia to top it off and the brain damage and nerve damage is going to be life long disability....imagine not being able to do complex math, or do a learned skill like computer programing cause stuff just makes no sense and can even rearrange on you (brain damage)

BUT IT DID improve my life, my parents while old and set in their ways (50s-60s), could not change but could give me good advice. Take advantage of my disease and skills I was left with to find my place in life. My father said god gave you this not a punishment but as a guiding light.

I built out my own apartment, complete with a almost 400sqft kitchen, used my cooking skills to start a small cottage home bakery, and cooking for people that required gluten free out of my 100% gluten free kitchen. My diet and my bakery evolved with my other health issues, corn free and dairy free for allergy reasons, and another AI issue had me remove sugars, carbs, starches, and grains. So a paleo bakery and chef lines. This has gone great for 5 years til now.

I will admit right now life is shoving some really BS in my face with a new baker in town......long story. Short version a gluten baker is doing gluten freeish. Most my customers where health fad gluten free not medical. This lady is doing stuff cheaper and extremely charismatic. Claiming 40 years experience and that here parents were pastry chefs.....sorta overshadows the Celiac in his late 20s and long hair that has to live this way.
But again I am trying to find the light in this....maybe it is time to focus on my dream job of running a gluten free paleo based food truck.....


 

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14 hours ago, Scott Adams said:

There is definitely an element of "coping" that takes place once someone is diagnosed, and it varies greatly from person to person. There is a lot to learn, and there is a lot of stress that many people experience when they have to make huge lifestyle changes. I don't believe that the term "coping" in any way implies "victim." Learning to cope is a normal process after diagnosis, and this forum was set up to make that process easier by allowing others to share info, vent, etc.

Hello Scott,

Thank you for your reply. I agree with what you say about coping, and I do not feel that coping implies "victim". What I have seen in posts on this site and in my interaction with other people who have Celiac disease, is a victim mindset that influences how they view themselves and the world at large. I believe this comes from the fact that the community does not focus on how to manage and live with the disease as much as they react to having the disease.

When people with Celiac approach each situation as a victim, they diminish their control in managing the disease. The end result is that person manages their needs badly with friends and/or wait staff, or they don't manage it and impact their own health.

My goal with this forum is to hear from other people who take control in managing their disease. I know there are some things I have learned that work well for me, and I am looking forward to sharing those as well. 

Take care.

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4 hours ago, HannahBick said:

You nailed it CDInSanDiego!

I'll quote you the next time my kids complain.

My husband was diagnosed with celiac in the late 1960s as a very sick young child. It was considered a rare childhood illness and he was crippled by eating gluten. He still feels very sorry for himself that he has been one of the very few who has had to be gluten free since that time when options were extremely limited and the "woe-is-me" mindset still lingers. So much so that he (along with our PCP) repeatedly refused to test our 10 children for it (since they didn't have the same extreme symptoms) so they could at least enjoy the gluten items he never could and avoid the social isolation that comes with the diagnosis.

I started to research more on the Internet about celiac disease. Earlier this year, I decided to take charge when he was away and got them tested. 8 out of our 10 were diagnosed and so the household is now totally gluten-free.

Needless to say, my husband often talked about how he felt sorry for himself (in front of the kids) being celiac yet insisted that the rest of us use regular (wheat) flour in the house to save money and so that the kids could enjoy regular gluten-filled treats and therefore he wouldn't 'burden' us with his health condition. He hates the term 'celiac disease' and much prefers to it to be referred to as 'celiac'. 

His attitude about all of this has definitely had a detrimental effect on not only our children's health but also their perception of life with the disease (which they are slowly overcoming, almost entirely thanks to my efforts 😂).

Hello Hannah,

I could not imagine what your husband went through during that time period. My body took a shift five years ago and I was diagnosed within seven months from having the first symptoms. I was also diagnosed when there were more options (not to mention, gluten-reduced beer) :-).

I am glad to hear that you kids are diagnosed and everyone knows what they need to manage. 

I look forward to hearing how you and your family live with Celiac disease.

Take care.

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14 hours ago, CDInSanDiego said:

My body took a shift five years ago and I was diagnosed within seven months from having the first symptoms.

My husband would argue that you are lucky to have been diagnosed later in life!

Did you have absolutely no symptoms prior to that? A lot of people I’ve talked to in the celiac support group say they had mild, inapparent symptoms throughout their lives but at some point their health took a dive and problems became very apparent. I suspect my husband is homozygous for the HLA-DQ2.5 gene because all of the kids are heterozygous for it and I have none of the celiac genes. He wasn’t happy that I did what I did, but more recently we had some counseling over a few other issues and a LOT about his past was revealed during the sessions.

Needless to say, I have cleaned the house and we are all gluten free. My husband and kids are slowly coming to terms with our new lifestyle. They’ll get there. 

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I have to agree with you. After I was diagnosed I quit eating gluten immediately, never looked back, and I don’t expect anyone to feel sorry for me. You’re right about how it just becomes second nature. I hate when I am invited to a potluck or when we have a carry-in lunch at work and people worry about what I’ll eat. I always bring a dish to share. I prefer to just bring my own because I know it’s safe. And the learning curve is so huge with this, I don’t expect my friends or family to accommodate me. My MIL tries so hard, but her kitchen is messy, I have seen her prepare things in a way that I know dishes could be contaminated. So I just don’t say anything and do my best with her. 

I haven’t ever really felt sorry for myself. I guess it’s because I have a family full of AI disorders. I have an aunt and an uncle who have T1 diabetes. My mom had primary biliary cholangitis and had a liver transplant when I was 9. My step sister has lupus. My cousin has some sort of crazy AI issue that is causing hives so bad that her throat closed. And none of these people have a simple fix for their conditions. Some of them don’t even know what triggers their symptoms. I have 3 aunts and uncles with Celiac, and my son has it too. My aunt and I were talking yesterday about how lucky we are to have Celiac. We aren’t dependent on big pharma for a solution. We know what makes us sick and we know how to avoid it. If I have to have an AI issue I’m glad it’s this.

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You have put that very well.  I have been living with Celiac disease for over 15 years.  When my son and I were diagnosed gluten-free food was almost unheard of or was crap.  I ate a lot of rice cakes in the beginning.  While this is what we have to face everyday we don't have to complain daily.  My friends and family are very understanding of my diet requirements.  They will apologize if one of the dishes they are serving isn't gluten-free and my response is always "don't worry about it, there are other things to eat".  I do know of some people who are fanatics about the possibility of perhaps a bit of gluten sneaking into their food.  You need to live your life.   

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Thank you Cindy,

I agree with your approach. For myself, I do not want to have an undue focus placed on me, or even worse, be "that guy". 

Thank you for your reply.

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On 7/21/2018 at 9:53 PM, HannahBick said:

My husband would argue that you are lucky to have been diagnosed later in life!

Did you have absolutely no symptoms prior to that? A lot of people I’ve talked to in the celiac support group say they had mild, inapparent symptoms throughout their lives but at some point their health took a dive and problems became very apparent. I suspect my husband is homozygous for the HLA-DQ2.5 gene because all of the kids are heterozygous for it and I have none of the celiac genes. He wasn’t happy that I did what I did, but more recently we had some counseling over a few other issues and a LOT about his past was revealed during the sessions.

Needless to say, I have cleaned the house and we are all gluten free. My husband and kids are slowly coming to terms with our new lifestyle. They’ll get there. 

Hi Hannah,

Yes, I had 44 years of eating good bread before my body took a shift. I was hiking and had an encounter with a mountain lion that shook me up (my nutritionist confirmed this is possible). I started feeling lethargic and sick for no reason. After two weeks, I went to the doctor and he did a blood panel. I was looking for irritable bowel syndrome and did not think it could be celiac. 

After the fasting blood test, I took myself out for a bagel sandwich. By the time I was done, I felt brain fog and ill. I called my doctor and told him to put me down for a gluten antibody test. When that came back positive, we moved to a Gastroenterologist,  three months of eating gluten again (it took me through Thanksgiving :-)), an endoscopy and a couple of weeks later, I had my diagnosis. 

I feel fortunate that I worked with my doctor to get on the path for a correct diagnosis. Since then, I have developed a lot of approaches to living with this disease, and have counseled people who have been diagnosed. There is a lot to share, and I look forward to sharing and learning with people in this thread.

Take care. 

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Fbmb,

Wow, your family as a lot going on in the GI department.

I have read in other places about friend's not taking people seriously, but people laugh at what they don't understand because it makes them uncomfortable.

I have found that a fun way to bring friends into the fold is to get together and cook with them. That way I can educate them while we are both creating a dish together, and they can understand my needs. We have friends whose homes we dine in frequently and they stock tamari  in their kitchens and have learned how to look for ice cream that does not have wheat. I'll even get phone calls from them while they are in the supermarket asking about ingredient lists for two products they have in front of them.  I feel so loved when I receive these calls because they are making an effort to take care of me, but it does not give me the feeling of being singled out in the group. They know they don't expect for them to accommodate me but I think it is great for friends to care for you. Plus, they are really proud when they get it right. I think the key is to be honest, because I will not eat anything that would ruin my day, regardless of who made it or purchased it. Those instances are just another opportunity to educate them.

Take care.

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    • @MikeMacKay Last I checked, the dream bar uses gluten-free rice crisp cereal (no barley malt). It does contain a lot of milk ingredients, which might upset your stomach if you have issues with lactose/dairy. You could be ultra sensitive (I am and can't eat most processed gluten-free foods), but I think this product is relatively safe, being that it is sealed and certified. Are you also getting drinks at Starbucks? If so, that would be my first worry. Though many of the drinks they serve are devoid of gluten ingredients, the place is CC nightmare. This is especially true of anything that is not black coffee, since they use the same blenders, frothers etc. If you sit around and watch a coffee place for a bit, you'll probably see some stuff that you won't like - dumping equipment in the sink (full of crumbs) then only rinsing quickly, using rags lying on the crumby counter to wipe down spouts/clean equipment, storing cups/lids below where baked goods are prepared etc. Some independent coffee places even use pasta to stir coffee (WTF). To be fair, Starbucks acknowledges that nothing other than pre-packaged stuff is guaranteed to be gluten-free. I'm not saying this to make you paranoid, just some food for thought on ways that otherwise safe-seeming orders (eg. drinks) could go wrong. To be clear, I do sometimes get coffee/packaged snacks when traveling, but I take a close look at what's happening behind the counter before I do so. If the coffee prep station is far away from the baked goods/bagel prep, I feel much better about it.
    • My family is British/Irish, so I was doomed 😂. Every meal involved some sort of bread/baked good side. RIP cultural event participation. The closest I could get to an answer on relative severity of reactions between the different grains was that the different HLA genes result in the immune system recognizing different parts of the proteins. So, I suppose, depending on which HLA genes a person has, their system may bind more strongly to certain grains in the gluten umbrella. From my limited understanding of the studies I read, it did seem to support the idea that there are sub-types of celiacs. I would think there are also implications about enzymatic-based therapies (ie. enzyme might not render the proteins unrecognizable for some HLA types, especially less common ones). I myself am DQ2.2 homozygous, which is one of the less common genetic combinations (in Northern Europe, at least). Most of the research is done on people who are 2.5/X, or cell cultures derived from people with this genetic combination. I wonder what nuances we might be missing because of this limitation.
    • Does anyone else have trouble eating Starbucks Marshmallow Dream Bar? As I understand from previous posts I've seen about this product, thrye used to include barley malt in the rice krispie itself. However, this Dream Bar is considered gluten free, and is even certified NSF. I also can't see anything in it that should give me a reaction.  However, it seems to in terms of gassiness, and itching.  Is it possible it could be considered another ingredient?     
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