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

Ok, I Gotta Ask This...


JerryK

Recommended Posts

JerryK Community Regular

One of my main problems with docs has been I don't look sick. As a man they expect you to be big and strong. I've watched my HMO treat myself and my wife differently. We can have the same flu bug...she'll come out with three different medications. They'll pat me on the head and tell me to drink plenty of fluids.

Doctor's wonder why men don't go to them often enough...this is part of it.

So, I've gotta ask this question. Can you tell if someone is Celiac just by looking at them? I mean aside from someone wasting away, or disintegrating teeth, like I have, you can't really tell right? I just worry that my doc is going to take one look at this guy and say..."no way can you be sick" and it's out the door.

Thoughts?


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

No, many celiacs don't look sick at all. Some look skinny. Some look undernourished. But many do not look sick.

As for you and your wife going out of the same doctor's office with different results (if it's a different doctor, you can't compare - it's the doctor doing the treating, not *strictly* the HMO), then you have to compare your approaches with the doctor. Same thing happens with my husband and I, but there are two primary differences - I have asthma (underlying medical condition means that respiratory infections are treated significantly differently in me), and I am much pushier. :-) It's unfortunate that we have to learn how to approach our doctors, but it's like any other relationship; we need to learn how to work with our doctors. It'll get easier over time as you become familiar with your doctor. (This is why I HATE the HMO systems that _force_ you to take whatever doctor is availabe, rather than letting you have a primary. You'll get crappier health care that way.)

CarlaB Enthusiast

Here's what I look like! See my healthy teeth? I like the fact we don't look sickly ... in fact, I don't consider myself to be sick! I am healthy unless I eat gluten. Others get hangovers from alcohol, I get them from crumbs! :lol:

penguin Community Regular

See? I look pudgy and healthy, also! My main problem is that I'm so effin' pale, but I think that's as much from my brother taking all of the pigment genes and leaving none for me as much as anything else.

One thing people do tell me a lot is that I look like I've lost weight. Although I am overweight, I do not take this as a compliment, especially since I've been the same weight for a long time. It think it's because my face looks more gaunt or something.

MySuicidalTurtle Enthusiast

Some Celiacs do look sick but a lot don't.

KaitiUSA Enthusiast

Many look normal and many don't even get symptoms.

CarlaB Enthusiast

I know what you mean, Chelsea, about looking gaunt. I saw my Atlanta friends for spring break after being gluten free for four months. They thought my face looked totally different, less gaunt.

I have had this my whole life. I remember my stomach and fatigue being so bad 20 years ago that I couldn't work. That lasted a few months. I didn't look bad until last summer. I think the difference was that this time I was sick for a few years rather than a few months. It's funny how it would come and go. I mean, I always had a problem stomach, but being really ill would come and go over the years. Several times I ended up in the hospital with dehydration, even with no d. It must have had to do with poor absorption.


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Noone payed any attention to my complaints the first 2 years of feeling sick because of the fact that I appeared to be healthy. I finally started losing weight and then finally got some concern....often if you look fine on the outside your complaints wont be recognized. If your wife got the attention she needed she's lucky. I always got sent out with a recommendation to see the the phsychiatrist or a script for antidepressants. :angry:

Carriefaith Enthusiast

Before I was diagnosed and about 6 months on the gluten-free diet I looked sick, and I was very thin. I look fine now after I gained my weight back :)

Ursa Major Collaborator

I looked sickly as a child and teenager, but looked well after that. And I was gaining weight, had rosy skin (too rosy, I think), and refused to act sick (when my foot was so bad, I'd rather stop and pretend to look at something in a store window, than limp). So, when people would ask me how I was, and I dared say 'not very well', they didn't really believe me (including doctors). One former friend even got really angry with me, insisting that since I looked well, I must be well (well, she became a 'former' friend that moment, because anybody who calls me a liar to my face isn't my friend. My true friends know that I never lie).

Only last summer, for six months I looked terrible, because I was awfully sick.

Guest nini

many Celiacs don't have obvious symptoms at all and don't look sick at all, also, once we are on the gluten-free diet, we can look lots and lots healthier!

Lisa Mentor

I apparently looked sick. Now I have people comming up to me saying how much better I look. I know that everyone thought that I was anorexic. Too bad they didn't tell me when I looked sick, they just told each other. :blink:

carriecraig Enthusiast

My hair thinned, I was pale, and I looked like I was 3 months pregnant all of the time, so I would say I definitely look different then I do now. I've been gluten-free for almost a year, and my hair and nails are healthy, my color is back, and I've lost 10+ lbs.

Clark Bent as Stupor-Man Contributor

Although some celiacs do look sick, I think many of us don't, which is one of the reason it's harder to get doctors to understand the seriousness of the situation. It also contributes to people questioning your health concerns and thinking you're a hypochondriac. It's better than the alternative though cause I would rather have people question me than look noticeably sick.

Deej Newbie

I've been told (and I think it's right) that I have looked ill my entire life. Gaunt, pale, bags under the eyes (gosh what a picture that paints! :lol: ) and was suspected of having anorexia nervosa on more than one occasion. My experience has been that I have been dismissed, despite the fact that I look ill, as a hypochondriac. Thus all the misdiagnoses.

As for you being treated less carefully than your wife, my lexperience has been the opposite . My late husband, bless his heart, once shouted at a doctor that if HE had turned up in the doctor's office week after week after week in so much pain and so obviously ill someone would have diagnosed and treated him years ago.

It's sad whenever any of us is dismissed and I'm sorry to read about your experience.

I try to be hopeful that the next generation of Celiac's, both genders, will be diagnosed in a timely and humane fashion. I guess that's what we probably all hope for.

jerseyangel Proficient

I never looked sick, although I almost never felt well. In the year before I was finally diagnosed (last year), I began to lose weight, was terribly pale, had bruises all over my arms, and my hair was thinning to the point where you could see my scalp in a few places.

CarlaB Enthusiast

Oh, yea, I forgot all about the bruising ... I had so many one time that I looked like I had been in an automobile accident! I now usually have one or two at any given time, though I never know where I've gotten them from. I remember one time having 11 on my arms, and not having any idea where they came from. Funny, I always thought that was normal!

ravenwoodglass Mentor
See? I look pudgy and healthy, also! My main problem is that I'm so effin' pale, but I think that's as much from my brother taking all of the pigment genes and leaving none for me as much as anything else.

ChelsE off topic but are you a 'night and day twin'? My brother and I were, him blonde and light skin blue eyes, me very dark with green eyes. We used to joke they got our legs mixed, he had nice girly ones I had sticks. And I don't think you look pudgy, jsut healthy :)

penguin Community Regular
ChelsE off topic but are you a 'night and day twin'? My brother and I were, him blonde and light skin blue eyes, me very dark with green eyes. We used to joke they got our legs mixed, he had nice girly ones I had sticks. And I don't think you look pudgy, jsut healthy :)

Thanks :) It's a flattering picture. I used to be about 50 lbs heavier, and most of the time I still feel heavy, really heavy.

My brother and sister are from a different marriage, but my brother is definitely dark. He looks mexican, greek, or italian depending on who he's with. He took all of the native american color from the gene pool, but I got all the brains :P . Both my brother and sister tan very nicely, but my sister freckles. I don't know about my dad, but from what I saw in pictures, he wasn't very pale.

My brother HAS night and day twins. His twin girls don't even look related! One has straight blonde hair, blue eyes, fair skin, and the other has curly dark hair, brown eyes, and dark skin. It's remarkable. The funny thing is my sister's kids are the same way. Two dark, one white. Wierd!

aikiducky Apprentice

No-one thought I looked sick before I went gluten free, but now, 19 months gluten free, people have started to comment how well I look! So apparently I didn't exactly look that healthy before, but it was subtle.

I'm pale, too, but this spring I've put more colour on than before. I think it might be a sign that my vitamin levels have improved.

Pauliina

Fiddle-Faddle Community Regular

At 30 pounds overweight, and with rosy cheeks (too rosy--it's rosacea), nobody thought I was sick either. I didn't think I was sick until I had that horrible rash--my stomach issues were mild enough to be easily ignored.

But when I dropped 10 pounds without even trying after going gluten-free-I definitely looked a lot healthier.

About you and your wife going to the doctor with the same virus--I'd say you were the one who got proper health care, not your wife. 3 different meds for a stomach virus? Come on!

tiffjake Enthusiast
See? I look pudgy and healthy, also! My main problem is that I'm so effin' pale, but I think that's as much from my brother taking all of the pigment genes and leaving none for me as much as anything else.

One thing people do tell me a lot is that I look like I've lost weight. Although I am overweight, I do not take this as a compliment, especially since I've been the same weight for a long time. It think it's because my face looks more gaunt or something.

Double ditto (and people say that about me too, cause I dont look bloated anymore-in the face-from the gluten)

SylvanArrow Newbie
One of my main problems with docs has been I don't look sick. As a man they expect you to be big and strong. I've watched my HMO treat myself and my wife differently. We can have the same flu bug...she'll come out with three different medications. They'll pat me on the head and tell me to drink plenty of fluids.

Doctor's wonder why men don't go to them often enough...this is part of it.

So, I've gotta ask this question. Can you tell if someone is Celiac just by looking at them? I mean aside from someone wasting away, or disintegrating teeth, like I have, you can't really tell right? I just worry that my doc is going to take one look at this guy and say..."no way can you be sick" and it's out the door.

Thoughts?

Despite having noticable symptoms of malabsorption (i.e. vertical ridges on my fingernails), I was never sickly looking. I'm a gym bunny, and I even won a local power lifting competition. ;) Ultimately, it was GI problems that drove me to a doctor (first a lame-O one who said take drugs and you'll be fine and finally one who thought to have my tested for food allergies), otherwise I might never have known.

CarlaB Enthusiast

I didn't know that's what the vertical ridges were from ... interesting.

Ursa Major Collaborator

Hey, I have those vertical ridges, too! I wonder if they'll go away?

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)

    • There are no registered users currently online
  • 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.