"younger" People And Celiac

[Teacher1958]

I may be wrong, but having read many posts, it seems to me that "younger" people have a lot more difficulty with this diagnosis. I am wondering if anyone else thinks this may be true.

I think that I would have been more negatively affected emotionally/psychologically if I'd been diagnosed 25 or 30 years ago. First of all, it would have affected my social life more. Secondly, it would have been much more difficult to locate gluten free foods while I was in college. Also, in my case, I would not have had an awarenness of the interconnection of all of my symptoms when I was much younger, so maybe I would not have been so relieved to be rid of them. On top of all of that, although I miss the foods I can't have, at least I had the chance to enjoy those foods for 49 years. Someone who gets the diagnosis at a younger age may regret having those experiences stolen from them. Anyhow, that's just my take. It may be different for other people.

[angel-jd1]

I may be wrong, but having read many posts, it seems to me that "younger" people have a lot more difficulty with this diagnosis. I am wondering if anyone else thinks this may be true.

I think that I would have been more negatively affected emotionally/psychologically if I'd been diagnosed 25 or 30 years ago. First of all, it would have affected my social life more. Secondly, it would have been much more difficult to locate gluten free foods while I was in college. Also, in my case, I would not have had an awarenness of the interconnection of all of my symptoms when I was much younger, so maybe I would not have been so relieved to be rid of them. On top of all of that, although I miss the foods I can't have, at least I had the chance to enjoy those foods for 49 years. Someone who gets the diagnosis at a younger age may regret having those experiences stolen from them. Anyhow, that's just my take. It may be different for other people.

I was diagnosed when I was 21 (I think). I thought I was dying. The throwing up, pain, brain fog, constant sleeping, couldn't go to class, hardly enough energy to shower, going to doctor after doctor and getting nothing, etc. I was SO relieved to get an answer to what was wrong that it wasn't hard for me. I adjusted just fine. It was a major life change, but I didn't care because it helped me to get my life back.

The age group that I believe would be the hardest would be teenagers. They rely sooooo much on their peers and peer opinions. It would be terribly easy at that age to goof up and not follow the diet. Teen years are filled with gluteny foods (pizza, doughnuts, sandwiches). There is always a pizza party and friends to pressure you to have a slice

-Jessica

[Phyllis28]

I was diagnosed at 20 in my junior year of college. My symptoms did not appear until I was 19. I was so happy not to be sick anymore. I had very little trouble adjusting. Staying gluten free was what I needed to do to stay heathy. I was lucky that I already lived in housing with a kitchen. I agree with Jessica (angel_jd1), it would have been much harder if I to have been diagnosed in Middle or High School.

[Guest j_mommy]

I was diagnosed in April and I'm 24. I was soooo relieved to finally know what's wrong with me! I work in teh medical field so maybe that is why I'm comfortable with it!?

I am happy I was diagnosed young! I know I get this from my Dad's side(Dad and Gma have same symptoms). I talked to my Gma about getting tested and she said she wouldn't. At her age I wouldn't either. She lived with it for this long and she doesn't want to change her diet!

I feel "blessed" that I found out now and didn't go on for years without knowing!

[Jestgar]

I was diagnosed at 20 in my junior year of college. My symptoms did not appear until I was 19. I was so happy not to be sick anymore.

I was wondering if it's easier to stick to the diet if you were really incapacitated by the disease, whatever your age.

[Guest j_mommy]

I wasn't incapaciated by the disease but I find it easy to stick to the diet...in that I mean I feel no need to cheat or to try someithing "just once". THe diet isn't the easiest thing in teh world but I don't want to get sick again!

I wish I had found out sooner!

[cruelshoes]

I was wondering if it's easier to stick to the diet if you were really incapacitated by the disease, whatever your age.

I believe this to be true for many people. Off and on, I spent a total of 4 years getting fed daily through an IV between the time my symptoms showed up at age 16 to when I was diagnosed at 34. By the time they figured it out I was near death. You couldn't pay me enough to eat gluten now.

I think it must be hard for the "silent celiacs" who don't have symptoms. It would be hard to stick to the gluten-free diet if I could not perceive that eating gluten was doing me harm.

[kbtoyssni]

I think the difficulty in sticking to the diet is more related to how sick you were before diagnosis and how well you react to the diet (i.e. how well you can correlate gluten with being sick in your mind), how supportive people around you are, and your general outlook on life rather than age.

I was diagnosed at age 23 (almost two years ago now). I was very, very sick (like dropping out of grad school, lying in bed all day sick). Going gluten-free gave me very quick positive results - it was 100% obvious to me and everyone around me that gluten was causing my problems. My parents and friends are fantastic about accommodating me and being supportive so being gluten-free is never a negative force in my life. It also helps that I am naturally an upbeat, positive person. To me, eating gluten-free isn't an inconvenience, being sick all the time and not being able to do what I want is.

That said, I think it would have been a lot harder to be gluten-free as a kid or even in college. Being 23 I was old enough to not care about what other people thought and be able to do the right thing for my body. I don't have the same desire to "fit in" as I did when I was a kid so the fact that I'm eating differently doesn't bother me. I'm also in a position where I can easily keep myself safe - I wouldn't have nearly that much control over my food if I still had to eat dorm food.

[confused]

I was 34 when i found out and I think I have been ok with it, i mourn casein more then i do the gluten. I love how i have more energy, Im no longer up in bed from 4 or 5 pm on, i hardly ate dinner with my family or watched tv with them. And now we do so much as a family that i will never cheat on this lifestyle.

My step son on the other hand is 13, and it has been so hard on him. He still cheats on the diet. He just want to be normal and that is so hard for him to do, at least in his eyes.

Now we are getting the little ones tested, if they come back positive ill get back to you on how it is for kids at a younger age.

Just from my experience tho it is a heck a lot easier for me then my stepson.

paula

[Eriella]

I was diagnosed in the middle of my junior year of college. While it is tough, it would have been a lot worse in high school and middle school. The rough part of getting diagnosed while you are in college is that not all colleges are equally accommodating. I know that had I known before I went to college, I would have gone to a school with more dining options and that didn't require a meal plan. However, I feel that as long as you have a great support system, it is doable.

[lfij]

it's pretty tough being diagnosed in college when everything revolves around pizza, beer, and other food like that though, you can't deny it. In high school you often still live at home and not in a dorm and can have mommy make you lunch and dinner, in college, you have to eat alone, and watch everyone else scarf down pizza and turn down dinner invites.

[Eriella]

it's pretty tough being diagnosed in college when everything revolves around pizza, beer, and other food like that though, you can't deny it. In high school you often still live at home and not in a dorm and can have mommy make you lunch and dinner, in college, you have to eat alone, and watch everyone else scarf down pizza and turn down dinner invites.

I completely agree! At least my local bar stocked Redbridge, otherwise it feels like I never get to do anything "normal". The really hard part for me is all of the social events, especially the school sponsored ones for my departments, where I get to watch people eat and answer questions about my health. And you are broke so you can't afford the expensive convenience foods, nor do you have the time to cook. Plus, when you are dxed at school your parents aren't used to cooking for you, which makes the first few nights at home rough (my favorite mom quote: "I got you whole wheat rolls because they didn't have any gluten free ones and I figured that these would be easier on your stomach"). However, it does get better, and I can't wait to graduate.

[celiac mom]

Having a son with celiac whose diagnosis was just before entering high school at the age of 14, it was tough. He didn't have any stomach pains, bowel problems, just being very skinny and just not growing. When he heard that by not eating gluten, he would grow, that was all he needed. He will never be a line backer, but at least now that he is 17, he is the right height, albeit still pretty skinny. It has been tough, but when he has eaten gluten, he now has very strong reactions. It sure is a test for everyone when they are faced with such a change in eating habits!

[gfgypsyqueen]

I think how sick you are before diagnosis relates to how easy the diet is to follow. I was diagnosed in my 30's and I was very sick, had constant Dr appts and nothing made me feel better. After going gluten-free, I know how much better I feel, so I have no problem with the diet, but the people around me are not as supportive as I would have hoped. I think spouses might have a hard time because they have to give up certain freedoms and foods "just because of your issues".

As for the young kids, I think they have a hard time at times because they just want to know why people rave about pizza so much, or for my kids PB&J sandwhiches. I think not knowing, having never tasted a food, is hard too.

[little d]

I think for me it would not having the "offical" diagnoses at 36, I am not that sick of a person like everybody else and I am very thankful for that. If I had discovered this in my 20's while partying with my friends and drinking the occational beer I'm a light weight when it comes to beer. I have at times been sick in the bathroom vomiting when no one else was afew hours during the night. Before I realized what was wrong or possibly wrong with me, the times that I did get sick I could never figure out why I was the only one who would get sick, I never went to the doctor to see because I would feel better after, I would go the the female doc and to the family doc when I needed but never addressed my issues with either doc. So I think that I have continued eating gluten I would be having D all the time like 3-4 time a week sometimes not all the time C would take over with the stringy stools. My Mom and sister are supportive of the diet at first I thought my mom would say its just in your head you know that I she had gallbladder surg and Grandma had her Gallbladder removed you need more water type of thing well she said all that except for its in your head. But I don't have the pain associatied with gallbladder so I know that I have the support, My husband well ok ya he supports me too. He just does not understand that much of it but he is trying.

Donna

[naomipoet]

Having a son with celiac whose diagnosis was just before entering high school at the age of 14, it was tough. He didn't have any stomach pains, bowel problems, just being very skinny and just not growing. When he heard that by not eating gluten, he would grow, that was all he needed. He will never be a line backer, but at least now that he is 17, he is the right height, albeit still pretty skinny. It has been tough, but when he has eaten gluten, he now has very strong reactions. It sure is a test for everyone when they are faced with such a change in eating habits!

My son was just diagnosed at age 14 as well (as part of his diabetes diagnosis, yuck!). He has no symptoms and is having a tough time making the switch to gluten-free foods. He has always been a bit small for his age. It's great to hear that your son is now the right height... my son has always been one of the smallest in his class. If you have any helpful hints, I'd love to hear them. We have not found a gluten-free bread that he likes...

[Generic]

I was diagnosed when I was 13 years old. I'm 32 now. It was difficult giving up pizza and those other yummy gluten filled foods. But I was so sick, I was willing to do so, if it made me not sick anymore. I was never tempted by friends or peer pressure. In fact no one ever tried to convince me to eat it. Other than when they would offer me something, because they had forgot I couldn't eat it.

I honestly don't think it was any harder as a teen as it would be being an adult. But I was one of the few that it was killing me, and I was in and out of the hospitals from it. It's second nature to me now. I was just like anyone else, you go through a grieving process, then you accept it and get on with your life.

[Teacher1958]

I believe this to be true for many people. Off and on, I spent a total of 4 years getting fed daily through an IV between the time my symptoms showed up at age 16 to when I was diagnosed at 34. By the time they figured it out I was near death. You couldn't pay me enough to eat gluten now.

That is just horrible. I can't even imagine. There must be many people out there who die and have never even been diagnosed. Very sad.

[flagbabyds]

i would have to say that i am very lucky to have been diagnosed before i can remember it. I don't remember gluten foods, thus i don't crave them. plus i grew up on the diet, and i know nothing but my diet. My celiac teen friends who were diagnosed in elementary/middle school say they wish they were diagnosed as young as i was. it's habit for me, and growing up with my parents telling me that i can't cheat, and stuff like that, it's worked into my brain. the thought of eating gluten makes me sick and feel horrible.

another advantage of growing up on the diet, is that all my friends take it seriously, i nearly died when i was a baby (within 3 weeks) and since I have been on the diet for 16 years, they understand that i can't cheat on it, and i need to follow it. But if i had been diagnosed in middle or high school, i think i could feel like people didn't take me seriously, because it would be a new thing.

this is my point of view, but i am VERY grateful of being diagnosed at such an early age.

[Adelle]

It was INSANELY hard for me. Adjusting to the diet was a breeze, but actually getting a DX was the hardest part. From ages 16-21 (7 years total) I saw 12 doctors. The ONLY testing I was able to get done was basic bloodwork. I was always severly anemic (eat more red meat, less ramen). I was "too young" to really know what was "wrong" with my OWN body. I was told many times that it was some kind of mental disorder. That all of my physical symptoms (loss of hunger, uncontrollable weight gain, narcolepsy, joint pain, heartburn, C & D alternately) were in my head. I honestly believe that if I werent a young woman I would have been at least taken seriously, which would have lead to SOME kind of diagnosis.

Once I did a dietary test, my doc said I was being "silly" (even after + bloodwork). At that point I was so sick I couldn't walk on my own , was having severe respiratory problems, my heart was beating super fast. Once I stopped eating gluten (1 year next month!!) It all went away. It was a long healing process, but within 1 week I felt better than I had in 1 year.

I have such a severe reaction (just CC and I have C&D 2 weeks, I can't walk for about a week, and I don't get energy back for nearly a month), I'll never eat enuf gluten to get a biopsy. But my current doc actually believes me. Dietary response is totally valid!!

Anyway, I was too sick to "enjoy" food and parties anyway. And I'm KNOWN for cooking amazing meals, so now people come hang out here!!

[prinsessa]

I found out I was gluten intolerant just last year (at 27). It was hard at first, but now I am used to it. I was never really that sick, but I feel much better being gluten-free. My kids were 3 and 8 when they went gluten free. DD cheated once at a party by eating cake. I kept asking her what was wrong because she had tons of gas and even had accidents in her pants (what you call "wet farts"). She finally admitted that she ate cake at her friends party (I wasn't there). Hopefully she learned her lesson. DS is too young to know the difference between gluten free and regular stuff. I hope by him growing up gluten free that he never misses anything he can't have. And the gluten free pizza we make is pretty good....tastes almost like the real thing.