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

Do You Think Of Yourself As A "sick" Person?


frenchiemama

Recommended Posts

frenchiemama Collaborator

I don't. Apparently everyone else does, but not me.

My mom always tells me how worried she was when I was so sick before. I think to myself, "When was I sick? Sure I had this and that and the other, and then that again, and this, and more of the other, but I was never SICK." Of course, if I think about every symptom and weird illness I've had it certainly sounds like a sick person. Just not me.

My doctor made a comment to me not long ago about me having a chronic disease. I thought "Disease? Not me, I just have to eat gluten-free." Of course it is a disease, I guess it just doesn't feel like one because I actually feel much better since being diagnosed (I usually think of diseases going the other way).

I guess the concept of having a "disease" :ph34r: is really hard to for me to fit with the way I feel. I feel really good! I felt crappy before when I just "delicate" or had a "sensitive stomach", or when my DH was just a physical expression of all my emotional turmoil (sarcasm).

How about you?


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



Celiac.com Sponsor (A8-M):



skbird Contributor

I was just talking about this to someone the other day, but I was using the phrase "high maintenance." I was saying that I am not high maintenance, but in fact, I really am - I have to be. Since I don't have an official diagnosis, I don't relate it to being a disease, though it still is for me. I do have some other stuff going on that may turn out to be something more, and I hope that is not the case, but that would also classify as a "disease" and make me be "sick." But I don't see myself that way at all. I was watching something on tv last night with music and I got up off the futon and was dancing around the room, and then my husband came out and saw me and he started dancing with me, and I was thinking, "how could I have a disease?"

I think it's better to not see yourself as a sick person. That's how you get sick. I know there are times when we feel bad and can't avoid that label, but there are times we don't and those should be considered for what they are.

You go, girl! And I'll be right there with you!

Stephanie

Jnkmnky Collaborator

As a mom to a young celiac, I feel that my child is always on the verge of being sick. Just one stupid, I mean, *well meaning* person away from being sick. I do have a constant sense of his health being a swallow away from destroyed. No one's actually ever succeeded in making him sick, but I've been so vigilant that it would be a monumental task to get past my security systems and gluten him. I send laminated cards to his first day of school, tell every parent on the class list, tell the nurse, the lunch ladies, the principal, the teacher, go to lunch every day with him to make sure no kids are passing food over his meal...which is a VERY common thing to have happen. All the kids in his classes know he can't have gluten and are proud when they tell me they told the substitute teacher that he can't have the treat she's brought. My son is very vigilant as well, but the other children LOVE being empowered to assist. So, yes, I feel that my celiac disease kid is sick and has a disease, but we live mostly like he isn't and doesn't. ....The absurdity of living with a chronic condition I suppose!

tarnalberry Community Regular

I don't think of myself as a sick person, or a diseased person. I do - to a small extent - think of myself as broken, but it has nothing to do with the gluten-intolerance, and everything to do with the other conditions I have which stope me from doing things. With gluten intolerance, I can still eat - I have to pick what I eat more carefullly, but I can eat the vast majority of *foods* out there. (Not prepackaged, process *stuff*, but foods.) With the other conditions, there's just times when I can't do stuff, period. I know there are others on the board who have it much worse than I do, so I realize that "broken" is more a thought in comparison to what I want, than to anything that's really normal.

Guest nini

I guess because I was ill for so much of my life, it's hard for me to not see myself as a sick person. BUT, I know the longer I am gluten free, the healthier I get.

I can recall a time when I was taking oodles of prescriptions for a wide variety of conditions and then even more prescriptions for the side effects from the other prescriptions! It was awful. Now I am without all but 2 prescriptions and one of them is birth control! So yes I feel like a much healthier person now.

I refuse to see myself as a victim of this disease though. I am taking charge of it and making my life and my daughter's life so much better.

uclangel422 Apprentice

I thought of myself as sick for the first couple of weeks but then i started feeling better.

My mother thinks that i am sick. I acidentally got glutened two weeks ago and was getting frustrated that it was taking so long to get over it and she said "well you are sick, you have a disease, it takes time." I know she means well but it seemed so handicapping at the time.

kabowman Explorer

I don't see myself as sick, at least not because of the food issues. In fact, I usually feel healthier than I ever have before (except for some troubling problems which the docs can't quite figure out and all the tendonitis in my hand, wrists, legs, etc. and rotator cuff problems).

People at work sometimes make comments about my strange diet and how I am "sick" but when we go out to eat (at pre-selected resturaunts), I talk to the cook and get the best food of the bunch and everyone is wanting what I get, well, then it always is another story.

My docs keep runing lupus, lyme, thyroid, RA tests but they keep coming back negative. Even when my hands and shoulders hurt so much I am on drugs for the pain, I don't really think of myself as sick. Just kind of "broken" like tarnalberry, but never because of the food.

Our whole family is heathier because of our clean, healthy way we eat...


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Prior to diagnosis, I felt like a very sick person.

Now that I know have this "disease," but I have no symptoms, I don't consider myself sick at all. This is literally the healthiest I have ever been in my life (going back to right before I came out of my mom's womb. All my health problems have been corrected and though I techically have a disease, I don't feel like it.

I just thought of this, so this is on the spot: a person has a peanut allergy or someone is lactose intolerant--does that make them sick? Celiac is just gluten intolerance--and while we may be truly sick and doing damage when we get gluten, we're actually not sick if we follow this gluten-free diet.

Tiffany--sorry if you've said it before that I didn't read or don't remember, but what's broken?

pixiegirl Enthusiast

I feel just like celiac3270... I felt like a sick person before I knew what was wrong with me.. because I was sick, all the time. Now after 10 months of gluten-free I feel great, healthy. However when I do get accidently glutened I do feel sick (again because I react so severly to being glutened).

I think I'm as healthy as I've ever been too.

Susan

KaitiUSA Enthusiast

All growing up I felt healthy until a few years ago when the celiac symptoms started. I thought I was going to die and I felt really sick and thought I would never get better. Now, I feel healthy again and don't consider myself sick even though others may think that because I can't have certain things...but that's not my problem.

I agree with you celiac3270...and we can control this..we have our health in our hands.

Carriefaith Enthusiast

Last year I was sick, but I have improved a lot since my diagnosis in March /04. Now, I wouldn't consider myself sick, just fragile to the slightest amount of gluten or dairy.

cmom Contributor

Although I feel so much better since going gluten-free, there are still times I feel like I am sick. When I need to leave the house and am having bathroom issues, I sometimes feel like staying in the house forever, never going anywhere so I won't have to deal with worrying about making it to the next restroom. Overall though, I do feel more normal now that I am better.

Guest BERNESES

I don't think of myself as sick- just as someone who has a sensitive body. And Kaiti's right- the people that think of you as a sick person, that's their problem.

ianm Apprentice

I used to think of miself as sick and handicapped because of the chronic fatigue and brain fog. Now most people can't keep up with me. It is hard for most people to think of me as sick when they see how much weight I lost and how healthy I am today. The ones who don't get it are losers and have no place in my life.

sinceIwas3 Newbie

Most people look at me and think"She's full of (you no what)" I don't look like a sick person, and at this very second, I don't feel like a sick person! Now days I get on everything! But I still get up in the morning and go to work, and try to be positive :D

Rikki Tikki Explorer

I agree, I don't see myself as a sick person although others appear to see me that way at times. I think of myself as gluten challenged, or how about a recovering gluten person.

printmaker81 Rookie

A few months back, I was looking very much like a heroine addict- skinny, pale, dark circles under my eyes, bad hair and skin. Did I see myself as sick- YES, so did everyone else. Though I still don't feel very good, the circles and skin/hair have started improving (still skinny and pale more anemic looking than addict now). Now whenever I go out, it seems like I run into someone who tells me I look great. That goes a long way to make me feel not sick. Now that I'm on the right medications, I am feeling less sick everyday, but still have that fragile feeling Carrie mentioned.

Guest imsohungry

Like everyone else,

I rarely think of myself as a sick person...especially related to my Celiac dx. I feel better when I take care of myself by staying gluten-free...consequently, why label myself sick? I have multiple "disabilities"....but I HATE when people call me "sickly." I'm not sickly...I just have obstacles that some other people don't have.

Good night all. -Julie

mouse Enthusiast

Like everyone else, I also don't think of myself as a sick person. I find that mentally defeating and serves no purpose. In January of 2004 I WAS SICK and dying. I had already lost 50 pounds and looked like someone from a concentration camp. Every test I ORDERED came back negative. That last month I was living on 100 Lomotil (sp) a week and still could not keep anything in me longer then 30 minutes. Talk about brain fog, my brain was in outer space. My husband I would have settled for ANY kind of diagnosis. We just wanted to know why I was dying. The last week I became dehydrated and I went into the fetal position and prayed to die. Three days after I prayed to die, my GP thought of celiac disease. I have been recovering since then. I started to lose weight again a month ago. I have 6 more days to gain weight or I will have to go in for a Cat's scan or an MRI (I can't remember which). I am consuming 2500 calories a day and never thought I would see the day that I would try to gain weight :lol: If I have to do that and the test scan is pathetic, am I going to cry and think of myself as a sick person. NO, I will not. I don't feel sick. Exhausted, but not sick. At least I was able to flush (very appro) away about 90% of the pills I was taking. My husband says for every pound I lost - he found :lol: And I get a big charge drip drying someone elses small T-shirts (mine). After the throwing up and the bathroom trips get under control, then the thing we have to contend with is our minds. Do, I sometimes let it get to me - of course. But, I talk myself out of it super fast. If I don't my husband talks me out of it. Life is way to short to be sick or let celiac disease get in the way of living the lives we are physically able to, with all the other medical baggage we carry. Good Luck and Good Health to All of you.

Armetta

happygirl Collaborator

When people make comments about my being "sick," I am so proud to say, "I used to be very sick before I was diagnosed, but now, I am just as healthy (as long as I eat carefully) as you and anyone else."

Stoole Newbie

I don't think of myself as being sick. My physical symptoms were relatively mild for many years, so I didn't even think I was sick when I was sick. Total denial.

jenvan Collaborator

Hmm, this is an interesting question. For me, I think that internally, I do think of myself as somewhat fragile or maybe just not fully recovered...maybe not "sick", but I have seen little progress physically on the gluten-free diet yet, so I certainly can't say that I feel 'normal' or really healthy yet. With more energy, and less fibro-type pain, I wouldn't think that. I don't carry on or talk like I am sick, but inside there a bit of me that feels that way...in the moments when I get discouraged...

Ann1231 Enthusiast

I've never thought of myself as sick. tired, in pain, and frustrated, but never sick. I always knew as soon as I found out the problem, I'd start feeling better. That is true with celiac disease, not so much with ra and that's where my struggle has been. I still don't see myself as sick though.

ann

swittenauer Enthusiast

I guess my husband & I look at him as sick. Maybe because that it is early on & he has lost so much weight. We just got married 3 weeks ago & are having a reception this weekend so I'm sure people will talk then. At his family reunion last week they all kept saying how bad he looked. I think that some better phrasing could probably be used but I understand when people say he looks so sick or looks so bad. Someday he'll get his weight back though hopefully & we can move on. Gluten free of course.

scotia Newbie

Sick...no...warped...well...maybe... ;-)

It's definately a 'test' of character, but it's not 'debilitating' unless you let it be.

I'm sure most of us, having gone gluten-free, feel much better and 'healthier' than before.

I still do all the things I used to enjoy, before I got 'sick'...I eat much healthier, and exercise when I feel like it.

I also take naps when I feel tired too...don't be afraid to 'listen' to your body...only you know when it's out of kilter.

I've also had my dark days ( when first diagnosed and had a few setbacks, when depression set in, and I thought "I can't deal with this!!!..."

But you have to...and you do!!!

I believe having a good attitdude, about most things, a lot of which, has to do with being diagnosed as a Celiac, and I think of it as a Blessing now, rather than a curse, will get you through.

I can only speak for myself of course, and I hope and wish everyone on here the very best of health but it all starts...and ends with the individual.

When's the l;ast time you went to the veggie market and picked up some fresh fruit, bananas, strawberries, kiwi fruit, anything you like, then came home made a fruit salad, and sat outside in the sunshine and 'enjoyed' the feel of ths sun on your skin as you ate your face off...gluten-free and Good for you...it's a start right...???

If you feel like being daring, throw some 'Haggen Dazs' or 'Breyers' Vanilla ice cream on top...there, now you've got it.

Sick...Nah!!!...

Go on, you can do it...put a smile on your face.

Scotia

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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.