Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anger Management

travelthomas

Recommended Posts

travelthomas Apprentice
travelthomas
Posted

I thought it would be nice to start a topic that deals with how to channel all the anger and frustration of celiac disease.

I personally like writing letters to the Congress, celebrity TV host like Oprah, and the FDA.

Being I

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

My frustration is more aimed at manufacturers that think wheat has to be in everything. I mean, come on! Campbells does not need to use wheat as a thickener!

My anger is at people with celiac disease that expect everyone else to take responsibility for them. I just want to yell at them to read the labels themselves! You don't need a doctor's note to eat gluten-free! Quit complaining about the diet!

I did send an e-mail to Oprah. I never thought about writing to my political representatives. I do call companies and talk to them about their products. I also asked a farmer about field contamination.

Instead of getting angry, we need to get motivated. I don't see anyone advertising celiac disease on tv, so we need to tell people ourselves!

Guest aramgard
Guest aramgard
Posted

I guess I started out a little like Thomas. I really got angry about all of these so called medical professionals, not knowing and not caring about a problem that only requires a change in diet. I wrote letters, sent e-mails to Senators, Congressmen, the FDA, medical schools, the AMA. None of which did any good whatsoever. Then one day when I was in the doctors office, the nurse practitioner came in to the room and told me they had a nurse practitioner in training there and she wanted me to tell her all about Celiac disease. Then and there I discovered a little education really goes a long way. So I now have stopped being angry and every time I can corner a health professional, I get on my little soap box and educate. I think all of us go through a cycle of feelings about our disease. What does everyone else think??? Shirley

kejohe Apprentice
kejohe
Posted

I agree that the best way to channel our frustration is to educate the non-celiac world. For me, since I am not in the medical profession, I have little opportunity to speak with health care pros about the disease. However, I am in another industry very important to those with celiac and thats the food service industry. So for me, I try and educate as many restaurant professionals as possible.

In our defense, Dessa, roux (a mixture of wheat flour and oil) has been used as a thickener for soups and sauces since before the Bible was written. So it's understandable that some of the larger food manufacturers, like Campbell's still use it. It also has preservation and flavor benifits that you can't get with corn starch, arrowroot, or potato starch. I'm in the same boat you are as far as trying to make sure everything is gluten-free, so I'm not saying this is any kind of excuse, but it is a reason. Add to that the sheer enormity of the cost involving a change of one of their "classic" formulas/recipes, I can see why they have yet to switch to a gluten free product.

Anyway, it's all I can do to educate my peers in the restaurant industry, and I hope what I do helps people. It certainly makes me feel better.

:D

jaimek Enthusiast
jaimek
Posted

I am so glad this topic was started. I am having a very hard time taking my frustration/anger out in the right way. I believe it is affecting my personal relationships with friends and especially my boyfriend. I get so depressed and angry that I become this person that I am not and it really upsets me. I go through periods where I am fine and then it just all bottles up inside me and I can't help but cry. I find that it is so easy when I am at home eating all of my meals but I am at the age where all of my friends are getting married and I have all the engagement parties and bridal showers to go to and I feel like it is torture. I had my first experience at a bridal shower where I called ahead and told them about celiac. They were unaware of what it was and i had to answer a lot of questions but in the end they were going to make me a plain piece of chicken. well, at the party the waitress made the biggest deal about it and was so loud about my disease. I am not one who likes that much attention and I know she was only trying to help but it was embarrassing. Then I just had an engagement party and I did not call ahead and I lost it while sitting at the table. I just started crying. I was never a cryer before and the whole thing makes me so angry. I watched all of the appetizers go by that I couldn't have and it was eating me up inside. I really don't know what to do. I feel like I am just a hassle/problem to everyone.

travelthomas Apprentice
travelthomas
Posted
  • Author

Possibly I

whitelacegal Contributor
whitelacegal
Posted

I am really upset about the amount of doctors and nurses who do not understand this diease, everytime i tell them i have this they say so then you have a allergy to wheat? Its hard to explain this to people so they can really understand, i usually tell them to look it up in there medical books. being new im trying to cope with this the best i can by reading all the information i can on the diet and going on messege boards like this one to read how other people cope, i know i have a long road ahead of me!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

I was torn about whether or not to reply to this ... 'cause I'm not particularly angry about it. I'm far more "angry" about my knees being not-so-good, and the fact that I can never run as much as I'd like to.

There are so many ways around wheat. Maybe if I didn't cook and couldn't learn, I would feel more angry, but I CAN learn, so things can always get better. No one else who doesn't have the same problems we do can really understand how they affect us. My husband didn't entirely understand about my knees until his started showing the same problem. And they shouldn't understand. They can't. Just like we can't understand exactly what it means to live in their body.

Of course, I've been lucky. I haven't battled legions of disbelieving doctors (only my allergist expresses a lot of disbelief, and well... he can go deal; he's not the one treating me), and I haven't had legions of friends scoff at me. I treat it just like any other dietary restriction, and don't make a particularly large deal out of it. Maybe it's living in California, where we're so food conscious; I don't know. But some people have shellfish allergies, some people have peanut allergies, some people are strict vegetarians (for all sorts of reasons), some are on the Atkins diet, and some are gluten intolerant (me!). The level of "damage" done varies for these - but it can be MORE serious for those severely allergic to peanuts, and I won't discount the emotional pain that a truely strict vegetarian might experience finding out that he/she ate some meat. And I don't even think about if one person would suffer more or less pain from not sticking to the rules, because that line of thinking implies "one-up-man-ship", and who needs to "compete for the most pain".

I cried in the car on the way home from my orthopaedist appointment, where the doctor told me to never run again, and that I might need full knee replacements by the time I'm 50, but nothing else. (I soon found a better doctor.) I didn't cry finding out I was likely celiac, because the good outweighs the bad - it's something you can adapt to.

I see some people expressing anger that they have to adapt, that they can't be like everyone else. Well, in some manner or another (not necessarily food), everyone has to adapt to something in their lives. This is something we have to adapt to. It's just something that is. I know that I choose to follow a gluten-free diet because it's what my body needs, and it's hard to get mad for making intelligent choices. And it's hard to get mad at the ignorance of people who don't know any better. (Though it's REALLY HARD NOT to express shock when someone doesn't know that pasta is made from wheat! ;-) )

plantime Contributor
plantime
Posted

Kejohe, Since all of the companies come out with new soups all of the time to compete, can't they be radically different and do a gluten-free one? I "adapted" by making my own soup at home. I have "adapted" so much , that I am tired of trying. Even my poor little cat looks tired of adapting, and she only has to eat the food!(a touch of humor there, since my cat can't have gluten either!)

On a better note, the pastor at my church has a friend with celiac, so he is trying to support the best way he can. He signed me up for the fellowship committee so I can help others keep track and maybe learn about food problems. Of course, it means more work for me to do, but the more people that know about it, the easier it is for me. We just need to find ways to educate people. One-on-one works very slowly. How do we raise public awareness?

tarnalberry Community Regular
tarnalberry
Posted

lol... there's something to chalk up to "different perspective". I would never have thought of making homemade soup as "adapting". I did it before I was gluten-free too. But if you've lived your whole life buying soup, I could see how making it might seem like a big thing. (I thought enchilada sauce was a kinda big thing to make at home until I did it - and man is it easy!)

plantime Contributor
plantime
Posted

Maybe we need to learn to inject more humor into our lives! A real good laugh would sure do wonders for relieving the stress we all feel!

granny Rookie
granny
Posted
(I thought enchilada sauce was a kinda big thing to make at home until I did it - and man is it easy!)

I know this isn't the place, but would you put your recipe for home-made enchilada sauce in the recipe section? We've tried to make it but just never get it quiet right.

If you happen to have a recipe for beef stew seasoning or if someone else does, I'd love to have it also. Neither my husband or myself are good at spices and have always depended on mixes. Now that we're gluten-free, we're really missing some of our favorite things, like a good stew. I've challenged myself to make a recipe from the recipe section each day and we've really enjoyed the process and the foods.

All help is appreciated. Thanks, Granny

tarnalberry Community Regular
tarnalberry
Posted

granny, sure - no problem

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,192
    • Most Online (within 30 mins)
      7,748
    MariaV
    Newest Member
    MariaV
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...