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At What Age?
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17 posts in this topic

ive seen alot of messages here from people about the ages they were diagnosed with celiac.

couple questions...

- is it genetic?

- can someone develop it later in life (im 23 and was just diagnosed a few days ago), does this mean ive had it my whole life? up until a few months ago i never had any stomach or GI issues.

but reading some of your stories here have really calmed my nerves. when i first found out about celiac, i almost broke into tears. all my favorite foods were on the "Bad" list.

but seeing how some of you have moved on past this and are leading great healty lives, its given me alot of courage. thank you :)

-pete

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hey pete-

I am 23 too, and was diagnosed 6 weeks ago. Looking back, I think it was lurking in me since i was 14 ( I got some parasites traveling) and then it got a lot worse over the last year, but seamed "just a worse version of normal" and then I got the flu and all hell broke loose. I guess what I am saying, and I base this on reading this board and every book I can find, is that our bodies express this disease in a million different ways. My sister has it and never really had digestive problems. and she's 32! ( she just gets really dumb what she eats wheat.) I have heard other peope who didn't develop it unitl their 40's.

I know I have been going through a mourning process. I was fortunate to not really like bread or pasta, ever. but I still have moments oh, I can't ever have a powdered donut again. It IS a genetic disease that seams to be more common among women. what I have read says about a 3 to 1 ratio women to men. ( Won't you be a lucky guy at a support group meeting...)

good luck. I know as a newbie I have found this board to be a life line, and an incredibly valuable source of info. I hope you do to. Good luck finding foods you love. there's lots out there for us.

peace

Libby

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thx for the reply libby.

the age thing is what really bugs me. i mean... there was to be some kind of trigger. but im no scientist, so who knows.

well, good luck to you to. wishing only the best for you, and for the whole message board.

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Hi,

I wasn't diagnosed until the age of 61, I've had GI and neurological

symtoms which were attributed to gerd and allergies for about 10 years.

I really started getting really sick after what was supposed to be a one night stay

in the hospital for a simple left thyroidectomy for a benign tumor, turning into

four days in the ICU. I had a bronchospasm in the recovery room, my body filled up with fluid and I almost died. After that my mother had a slight stroke and I

brought her to my home for two years. The doctor thought the stress from

these things happening probably" triggered" the immune system to go on high

alert and I really began having bigtime problems. What I'm trying to say is that

it isn't a matter of " age ", I think it is the amount of stress we have in our lives,

and how we handle it..

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Welcome all of you newly diagnosed. I am 69 and was just diagnosed in June 2001. But I developed severe allergies around 11-12 and then dermatitis when I was 14-15. But in those days you were told "She will outgrow it". Then when I didn't outgrow it they said I needed a psychiatrist, because it was anxiety and I was a hypochondriac. Over the years I began to develop the gastric problems (among many other problems) but in Mar-Apr of 2001 I caught the GI flu from my grandchildren. I was so sick they wanted to put me in the hospital but I saw Danna Korn on TV with her son and decided to ask my doctor for Celiac testing. Lo and behold, a diagnosis--finally. Don't mess around about the diet, please stick to it religiously. That diet will save you a lifetime of problems and eventually heal many of your problems. Contragulations, you have passed the first stumbling block of your life--getting a diagnosis. Now it's up to you to follow through. If you need help, we are here to help. Shirley in San Diego

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Greetings to all. This is my first posting.

I'm 46, and was diagnosed about a month ago. My GE noticed "prominent villi" (he later stated that he should have said, "damaged") when he was looking around my gut, trying to figure out if my chronic heartburn was doing any longterm damage. He sent me for the blood tests, and they came back quite positive. He said, somewhat accusingly, "I don't know why you don't have symptoms. You should!" So, now I'm trying to change my diet, heck, my whole life (and that of my family) because of something the doctor noticed by chance? I tell my friends that I'm past the denial stage, and well into the anger stage now. :angry:

My mother, on the other hand, has had the classic symptoms all of my life. I spent much of my childhood trying to find bathrooms in a hurry for her, and standing guard outside while she made disgusting noises and smells in there. I'm trying to convince her to get tested, but she's resisting. I think she doesn't want to deal with the disruption to her eating habits, if she finds out she has it. One of the other ladies in the retirement community makes a big deal of having it, and talks incessantly about it, and she is afraid she'd have to be like that.

I can relate. Part of my job is taking committees out for nice meals (rough life!), and in the past month, the wheat issue has come up in every one of them. I don't want to talk about it, but I can't help talking about it. Anyone else? :( Add that to shellfish (and living on the coast) and nightshade (tomatoes, eggplant, bell peppers) allergies, and restaurant eating gets pretty challenging. I figured steak should be ok (so much for my semi-vegetarian preference), but the last one I got had a (wonderful) sauce on it. Guess there's no avoiding grilling the waiter (hmm, now there's a visual image.... ;) ).

Ok, that's enough whining for now. I do feel better, though. Thanks for being there.

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I have been told it is genetic and carried on the same chromosome as Diabetes.

A person can carry the celiac gene yet not develop the disease. It is not know what can trigger a person to develop Celiac Disease.

Some schools of though are attributing it to the increase of Grains in the human diet over years and that we now eat alot more than previous generations. I tend to agree with this.

Grace was diagnosed at 9 years but in hindsight (ahh a wonderful thing, LOL) I feel she has been Celiac since she was a baby.

I have had our whole family tested after Graces diagnosis and so far no-one else has Celiac disease. However I am mindful of the possible signs and will have myself and others in the family retestd as needed. Because one of us could develop it further down the track.

I hope this helps.

Wendy

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I believe gluten sensitivity accompanies us from birth. I am 25 years old, and have been diagnosed 2 yrs ago, but I have had stomach and bowel problems all my life; it's just that starting 3 years ago my situation shifted to an unbearable condition. The trigger I believe to be eating a lot at fast-food restaurants, very spicy and very sweet foods and lots of pretzels at university.

From what I read and heard from other Celiacs, the age of 20 is very susceptible of showing this disease in its true severity.

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I began having symptoms of Celiac at age 8, after living through an intolerably stressfull situation. Mine presented as Asthma, and it took years before I could learn all the foods to which I was allergic, and all the foods which would trigger the disease.

Now I'm 59, have a 10 month old grandson who was recently diagnosed Celiac, and my sister was also diagnosed just this week (Shirley, I haven't shared with you lately, but we are now testing as many family members as possible--hurray!).

My grandson and I are also allergic to all milk and dairy, and my list includes allergies to casein, whey, egg whites, and yeast (as well as butter, milk chocolate, and anything else containing milk derivatives).

I am so blessed to be at this stage of life. Being Celiac means I adhere to a strict, nutritious diet, and I am quite healthy now. My grandson is now taking his first steps walking, and I am able to be there to see him do it. The world is a good place to be. Best wishes. Welda

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Welda, I'm really glad you are getting everyone tested, I hope by Enterolab. I really don't trust the conventional blood tests and endoscopy. I have had another ear, sinus and chest infection. After 50 years of undiagnosed Celiac, I guess my immune system has taken a big hit. All the more reason for early testing and intervention in the form of a gluten free diet for life. I'll go vote today, even though it's raining and I feel bad because that is my ticket to gripe after the election. If you don't vote, don't gripe about the outcome is my motto. After voting, I will go home and collapse for the rest of the day. Your grandson is walking already? My gosh time really does fly. My great granddaughter is walking also and I'm thinking some of her reactions may indicate Celiac.

Shirley

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I was 81 when I was diagnosed with celiac disease!! I had been having "weird" symptoms for several (or more) years. Turns out I had the "silent" type. It wasn't until I became very anemic and had lost about 20 pounds that I was diagnosed. After my doctor had me take several diagnostic tests and blood tests, including an endoscopy, it was determined that the form of celiac disease I have is gluten ataxia. The endoscopy was the real determining factor. And so my problems are mainly neurological. Also, from what I read, it would take 6 months to a year to be free of symptoms on the gluten-free diet -- then later I read it could take 2 to 3 years. Well, after 14 months on the diet, I am happy to report that I am much improved, but not as much as I would like. Perhaps because of my age, it will take longer. But I definitely would not go off my diet for anything. The most annoying thing is that I can't eat out as much as I would like. On the other hand, I have learned how to bake a decent loaf of bread and can now whip up a pretty good apple pie and other goodies. So take heart -- there is a good life to be had with celiac disease.

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I am 29 and just found out I have celiac disease. It didn't really activate until last May 2003, when I went off a medication. I also had an emergency gall bladder removal because of gall stones in Jan 2002. In May 2003 I started getting diarrhea all the time, to the point I even had a couple of accidents, because it would come on so suddenly. Then I started to have stomach pains in the intestinal area. It felt like menstrual cramps, but I wasn't on a period. I broke out with DH twice since December, and that was when my doctor tested me for Celiac. At first we thought the diarrhea was from bile acids being dumped into my intestines, since I had my gall bladder removed. But once I got the rash, a lightbulb went off in my doctor's head.

I also have had depression off and on since my teens, and just felt crappy a lot. I also had problems with irritability. As a child I had a lot of nosebleeds, and some Celiacs are starting to wonder if it is related to celiac disease, as half of Celiacs polled on the Delphi forum voted that they had frequent nosebleeds as a child and teen. I think my birth mother may be a Celiac too, because she always gets stomach aches. (I am adopted.) I haven't called to tell her though.

I read that celiac disease usually activates in children when they are 2 yrs old, or as adults in the 30's and 40's, or it is maybe brought on by stress, surgery, or illness.

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Dear Shirley,

I hope this finds you feeling better. I agree with you about voting. I sent my ballot off by absentee vote about 10 days ago. Yes, Dakota is taking a few steps now. All the testing has been done by Enterolab, and my sister learned this week that she does have Celiac. Thanks for the reply, and I will picture you in good health! Welda

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Yes, it's in the genes!

Please see;

http://coeliac.info/suppboard/viewtopic.php?t=737

I was diagnosed only 3 years ago aged 57 but I had been ill for over 30 years.

It was thought recently (after research in Bristol UK on 7 year old children) that, because about 1 in 100 of their sample had blood tests which indicate celiac disease- the same as for adults, the condition may start in childhood but often is not diagnosed until we are adults.

http://coeliac.info/suppboard/viewtopic.php?t=941

My symptoms were anaemia, mouth ulcers, tiredness, thyroid problems.

I also found out I had osteopenia (low bone density) through a DEXA scan.

If you are recently diagnosed please see:

http://coeliac.info/suppboard/viewtopic.php?t=502

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I was diagnosed last year at 33. Been having progressively worse GI issues since my late 20s.

Looking back now to my early 20s there were plenty of signs of celiac disease especially when I drank beer-check that too much beer :D The symptoms(GI/constant colds/flus and fatigue) would come and go at first but eventually overwhelmed my system to the point where everything I ate would cause severe stomach pains and a constant need to have a BM.

I was too embarrassed to go see my Doc and tell him that I had trouble controlling my BM. So I waited till I was very sick, I thought I had a stomach virus(never heard of celiac disease). At first I was told I had Irritable Bowel <_< then 2 weeks later when I dropped 12 lbs he tested for celiac disease and here I am.

Now 34 33 lbs lighter,1/2 in shorter, and a nice case of ostiopenia. Paying the price for not seeing my Doc sooner although my GI said they probably wouldn't pick up on it until it got as bad as it did.

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Hi all!

I`m Stefania from Slovakia, I`m spending some time now in US. I`m very happy what I`m discovering now here included this excellent forums and all the products that exist in US!!!

I am on gluten-free diet since I was born! So pretty long time, now I`m 24! For me, it is the style of living and sometimes I`m happy that I am Celiac. YOu eat better and live better!

Take care,

Stef.

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Hi Everyone!

Yes, I can relate to the extreme exhaustion felt--and I was watching television last night with my mom, and saw a commercial for Altovis, which is supposed to treat extreme fatigue. It said that it didn't have any side effects, but the hope is that it doesn't contain any wheat proteins/stabilizers/starches/fillers. Have any of you heard of that? I'm going to a naturopathic doctor tonight, so he should be able to help me out in terms of vitamin supplements--I would suggest to a lot of people on this board to go down that route. Primary care physicians, with all their good intentions, just do not know what to do in cases of celiac disease, and I was even told yesterday by my primary care doctor that my symptoms, while they resemble celiac disease, are a mystery to him, because he doesn't know what to do from this point forward.

I have heard also that celiac disease is genetic, and I trust that, but I was diagnosed last summer at 22, and to my knowledge, no one in my family even has it. Looking back though, I was a wheat/oats/barley kind of pig--I used to eat 4-5 slices of bread, after I came home from high school, and made a huge portion of oatmeal, and in college, I craved the grains in beer, and couldn't stop at just 1 or 2 cans.. I overdid it a lot and had a case of alcohol poisoning when I was 18, and nearly died, and then, I ate pizza, and pasta and cakes/cookies as if it was going out of style. I also had mono when I was 20, and I never fully rested from that, because of course, I wanted to get all A's in my classes, and the mono wasn't going to slow me down..hehe. Do you think that maybe all of that craving for gluten predisposed my body to developing celiac disease? Maybe it just started to reject digesting it anymore? By the way, I am not Irish, but am a quarter Northern Italian, and I have heard that people of that descent are at risk as well.

Speaking of prednisone, when I was having mono, the doctor put me on that, but it made me itch everywhere, and I developed a rash on my chest and neck--any similar reactions if you were put on that? It might contain a wheat protein that wasn't aware of, but at the time, I wasn't exactly looking for that, because celiac disease wasn't even heard of to me then.

Anyway, those are just my experiences and thoughts--take care everyone, and I wish you all the best of luck! :)

--Julie in Ma.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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