Jump to content
  • 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

Does Anyone Get Angry At Having This Illness?


sillyyak

Recommended Posts

lonewolf Collaborator

I am thankful that I found a way to live my life without horrid medications. I'm supposed to be in a wheelchair, crippled with arthritis, so I'm REALLY happy that instead I can teach PE, coach basketball and run triathlons. I was in constant pain and couldn't even take care of my kids by myself almost 10 years ago when I discovered I had food allergies. After eliminating my allergens I started getting better immediately. (It still took a year before I was fully better.)

The only thing that makes me angry is that I was told that my allergies would go away over time if I avoided those foods - this was wrong. I was told that the super high positive reaction to gluten on the ELISA test was a false positive and not to worry too much as long as I avoided wheat. That was not the case and I have endured ongoing, mostly minor problems which I am 100% sure are because of the small amounts of gluten I continued to eat. I was told in one day to eliminate wheat, eggs, soy, dairy, several kinds of beans, tomatoes, potatoes, peppers and a few other vegetables and was given NO HELP WHATSOEVER for how to eat. I had no internet at the time, hadn't heard of Celiac Disease and didn't know a single person who was on a restricted diet. I almost developed an eating disorder because I was so afraid to eat anything. I lost so much weight that people started whispering about me and some people came right out and asked if I had cancer or anorexia. I would have loved to have known about this website back then!

On the flip side, I have made EVERY mistake a cook can make while trying to cook and bake without wheat and other allergens. So I laugh along with people who post stories about flops in the kitchen since I have made more than my share of gooey, gross, inedible food. I wish I would have written down all the funny (looking back) mistakes I made.

I try to focus my energy on the positive and how I can help others. My husband's cousin just found out she has celiac disease and I don't want to overwhelm her with help, but I feel good that at least I can encourage her. A lady at church also has celiac disease and I have been able to help her by giving advice and even made the food for her at a luncheon she gave so everyone could eat the same food. A little girl at my school has celiac disease and I bought her some Kinnikinnick "K-Toos" for Christmas. She has never tasted an Oreo, so she is thrilled. I am aware that my children might have problems later in life, so I can be here to help make sure they don't get as sick as I did.

I do understand why people would be angry. I have been there. I miss the social aspects of eating out and going to people's houses without taking my own food, but it is a SMALL price to pay for good health. When I start to feel sorry for myself I take out my handicapped parking permit, long since expired now, and thank God that I found an alternative.

Liz


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



Celiac.com Sponsor (A8-M):



Guest CD_Surviver

i am not nessarily angry that i have the disease but when i hve gluten it makes me angry. just recently i have found that when i have gluten i get extreamlly angry for no reason at all. i hate and now for that reason and 0thers i stay away from gluten because it has started to destroy friendships i have.

Lauren

hippiegirl Newbie
I am finding myself very angry at having this disease and not being able to eat normal junk food, etc. Does anyone have a similar experience? I get so angry I get depressed. It is very frustrating

I find candy bars a good junk food, and I also made the best apple cinnimon muffins the other day, to die for (believe it or not), also chips, are another good junk food, and also found out how much I like watermelon. It is sweet and takes care of my cravings for sweet stuff.

MACE Rookie

I DO NOT GET ANGRY AT HAVING THIS DISEASE. WHAT MAKES ME ANGRY IS THAT IT TOOK SO LONG TO FIND THE PROBLEM. DO I MISS SOME OF THE FOODS I USE TO EAT OH YES. THEN I BREAK DOWN AND EAT SOMETHING AND THAT IS IT. DO NOT DO IT AGAIN ONCE I SEE WHAT IT HAS DONE TO ME ALL OVER AGAIN. GUESS I AM A SLOW LEARNING THAT I HAD TO KEEP TRYING SOMETHING AFTER A FEW WEEKS JUST TO SEE IF I WOULD HAVE A PROBLEM. NOW I DO NOT WANT THAT STUFF. I DO MESS UP AT TIMES AND EAT SOMETHING I SHOULD NOT SINCE I AM STILL LEARNING EVERYTHING THAT DOES HAVE GLUTEN IN IT, HIDDEN THINGS.

Lovinglife Rookie

Yes, anger is definitely a natural, even beautiful part of the process of acceptance. Also, as many have said, it's also important for us to be grateful for the diseases that we DO NOT have, for the life that some of us can still LIVE. Right now I'm suffering with a lot of muscles and joint pains and stiffness and being gluten-free is hardly annoying or upsetting. Rather, it is freeing because I am almost FORCED to eat better. I will pray that we all embrace our emotions so that we can transcend them.

CeliaCruz Rookie
i am not nessarily angry that i have the disease but when i hve gluten it makes me angry. just recently i have found that when i have gluten i get extreamlly angry for no reason at all.

Same here. In theory, I'm "angry" that I have this disease. I hate the inconvenience and social conflict that it causes. I'm mad that I wasn't diagnosed earlier by the highly respected doctors who treated me. I'm pissed off that there isn't a pill I can take that will make this all go away. Yada yada yada.

On the other hand, my general mood is just so much more stable these days since I went off gluten that I don't actually *GET* angry. Back when I ate gluten, I was so irritable. I would get pissed off about things that were comparatively minor. Anti-depressants helped take the edge off, but not that much. Now, I'm too mellow to get that upset about it.

cadillacjack Newbie
I am finding myself very angry at having this disease and not being able to eat normal junk food, etc. Does anyone have a similar experience? I get so angry I get depressed. It is very frustrating

Why get angry it doesn't do any good. think of this as a chance to improve your life and make positive changes. It was easy to eat all that junk food but it takes strength as an individual to eat for your health so as to feel better. If you search it out you will find a better junk food. So enjoy and move on with your new life. Been doing this for 30 years and loving it.


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



Celiac.com Sponsor (A8-M):



frustratedneicey Apprentice

I'm joining in with the group of angrys!! I don't think it is the disease itself that makes me so angry. Believe me, I was really sick for years. I think what makes me angry is the limited choices of food, and the cost. Yes, I could cook long meals from scratch, (and I love to cook) but I also have MS and my fatique just zaps all my energy from me. I get bored with food, and it doesn't help when everyone around you is yumming it up over the awesome pie or pizza their eating.

I just wish there was more of out there for us. I really think that it is pretty lousy that as many people that have this disease, there is not a bigger selection.

But most of all, I think that if we just lived in a world where people were more considerate of others around them and their needs, it would make it so much easier to bare. The support of loved ones, and even of co-workers, etc, would make this a much easier thing to deal with. I remember when my mom used to diet to lose weight, you couldn't bring one treat in the house, but where is that support when I need it? Not there. And this is way more important than some fad diet! So, as I said, I don't think having this disease makes me angry, (though my other disease does), or the diet, I think it is the "slap in the face" I get from people all the time.

  • 7 months later...
floridanative Community Regular

I'm not angry and consider my swift diagnosis a true blessing. But I'm angry that my Mother was 'stolen' from us for almost 20 years due to undisgnosed Celiac. DH could not believe the woman my Mother was when he met her, was the same person who raised me. She was so negative, so scared of life really, she was simply not the Mother I knew. My sister I discussed it and wondered where our 'real' Mother went. I chalked it up to her being married to my dad who is rather negative himself. In the end, after 18 years of being told she had Lupus when she didn't to her having her gallbladder removed (that will make you well - NOT!) to finally recently being told she had IBS, almost all her problems were being caused by Celiac. Now the fog is slowly lifting but I fear that some of the damage won't be undone. Certainly her thyroid disease and arthritis are not going away completely but hopefully they'll get better. Hopefully her mood will continue to improve and her outlook on life will get better. I guess time will tell. She's only been gluten free for five months.....plus she's still married to my dad. :lol:

taz sharratt Enthusiast
I am finding myself very angry at having this disease and not being able to eat normal junk food, etc. Does anyone have a similar experience? I get so angry I get depressed. It is very frustrating

damn straight i am :angry: P****D off i cant eat my sons birthday cake with him :rolleyes::rolleyes:

emcmaster Collaborator

Actually, for the most part, I feel blessed. I suffered for years despite seeing dozens of specialists a year who didn't diagnose me. The fact that avoiding certain foods can actually make me feel like a normal person seems a small price to pay.

On the other hand, I'm currently frustrated because I'm not feeling so good and I'm pretty sure I haven't been glutened. I'm hoping that I can figure out whatever it is that isn't agreeing with me soon so I can cut it out of my diet.

I imagine the degree of anger or bliss about this disease has to do with the severity and particular symptoms you have.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.