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Age Of Diagnosis?

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I am curious what everyone's age here was at diagnosis. Whenever I heard of someone having Celiac before, I assumed they knew since they were babies. So, imagine my surprise when I found out at 36.

Now, I know better.

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I developed celiac skin issues, DH and neurological issues at about 5. I was not diagnosed until I was 46 and had been very ill for 15 years. My DS showed impact from infancy, he dropped from the 65th percentile at birth to -10 at a year, he was diagnosed after I was when he was 19. My DD showed celiac symptoms starting at around 11 she was diagnosed at about age 15.

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My entire life showed pointers, that I had it, but it wasn't until depression anxiety drastic weight loss and a change of doctors who was educated in celiac, that I was diagnosed, at age 47.

I would have had answers and cures to ailments I had suffered my entire life, had a doctor bothered to look at celiac as my problem. It is interesting that so many are diagnosed so late in life, when there were so many indicators earlier on.

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I was only 2 1/2 months shy of 36 at time of diagnosis.

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Self diagnosed in my mid- late 40's after forcing the neurologist's office to give me copies of some test results. Had also been doing very intensive internet research after reading a random comment on a unrelated board about how somebody's sister's sjogren's always flared up after she blew her diet. Hit the google and never looked back.

I had previously had an alleged "rheumatologist" tell me I didn't have my sjogren's nor my cervical spinal arthritis while looking at my x- rays (they're not all incompetent here in this state, just most of them....) that I had been diagnosed with while around in my late twenties. I think my encounter with that pair of loons, who referred patients to each other, plus the previous HMO doctor who told me it was all in my head, really woke me up out of accepting anything as gospel from the medical profession. I have a documented history of certain medical problems, including neurological, spinal stenosis, arthritis, and kidney, this sort of behavior from doctors is just plain weird. Get copies of your medical tests and keep them. I was fortunate that the physicians I had seen in previous decades were not so bizarre and merely said the cause was unknown, as opposed to denying there was an actual disease process going on. I was, in retrospect, lucky they told me to not try to drug this thing into oblivion. I see the people on heavy duty, long term medications and they aren't having a good time long term, lives full of complications and side effects and disability. The diet change for me has worked out better in that I am much more shockingly functional now than 10 years ago.

The one spondylitis board still has a remnant section devoted to diet and achieving remission from the disease, but they just don't "get" that the no or low starch diet, which was based on the Specific Carbohydrate Diet (SCD) that has its own discussion thread on this site, works as a gluten free diet that is also avoiding some other starchy foods associated with intolerances, as some have problems with legumes, the nightshade family, or other grains. The main section of it went to pharmaceutical funding a few years ago, and the moderators have not been kind to people who dare cross post in the general section and suggest that a gluten free diet, at least for some people with spinal arthritis may be helpful. I am very sure many who have haphazard results with the low starch just need to tweak it to go gluten free, and then they'd have all good days. They're all about the anti tumor necrosis factor drugs now. Those drugs make one more vulnerable to infections and certain kinds of cancer. They may be wonder drugs for the rheumatoid arthritics, but they should not be, just in my opinion only, pushed on gluten intolerant people instead of considering alternatives.

I don't think all spondylitis type arthritis is caused by diet. But I don't trust the pharmaceutical industry on this topic. They have a business agenda. It doesn't include my eating a salad for lunch and then posting on the internet this makes me feel better.

But... but... you didn't get tested. So ? It's not like I didn't try, I just gave up and stopped eating the stuff that made me sick and stopped groveling for medical confirmation. My PCP tested me by bloodwork last year (didn't tell me beforehand, and since it was then 5 years off of the gluten, of course I am not going to show much antibodies) when he also ran a thyroid test and the medical office then calls me up and chirps at me "good news, you're not celiac !" Well, uh, :blink:duh. Never claimed to be. I'm gluten intolerant.

(In retrospect I was showing symptoms in my late teens. So it only took me about 30 years to get sick enough to figure it out.)

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Various signs for most of my life including Gastro problems back in high school. Spent three decades running the gamut of tests for everything else. Finally thought we had the answer with a diagnosis of rheumatoid arthritis 5 years ago. Wife finally put the pieces of the puzzle together this past November and I got my formal diagnosis this February at age 48. Have gone paleo and now not only is my gut healing but my RA is slowly fading away!

Chuck

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Self diagnosed in my mid- late 40's after forcing the neurologist's office to give me copies of some test results. Had also been doing very intensive internet research after reading a random comment on a unrelated board about how somebody's sister's sjogren's always flared up after she blew her diet. Hit the google and never looked back.

I had previously had an alleged "rheumatologist" tell me I didn't have my sjogren's nor my cervical spinal arthritis while looking at my x- rays (they're not all incompetent here in this state, just most of them....) that I had been diagnosed with while around in my late twenties. I think my encounter with that pair of loons, who referred patients to each other, plus the previous HMO doctor who told me it was all in my head, really woke me up out of accepting anything as gospel from the medical profession. I have a documented history of certain medical problems, including neurological, spinal stenosis, arthritis, and kidney, this sort of behavior from doctors is just plain weird. Get copies of your medical tests and keep them. I was fortunate that the physicians I had seen in previous decades were not so bizarre and merely said the cause was unknown, as opposed to denying there was an actual disease process going on. I was, in retrospect, lucky they told me to not try to drug this thing into oblivion. I see the people on heavy duty, long term medications and they aren't having a good time long term, lives full of complications and side effects and disability. The diet change for me has worked out better in that I am much more shockingly functional now than 10 years ago.

The one spondylitis board still has a remnant section devoted to diet and achieving remission from the disease, but they just don't "get" that the no or low starch diet, which was based on the Specific Carbohydrate Diet (SCD) that has its own discussion thread on this site, works as a gluten free diet that is also avoiding some other starchy foods associated with intolerances, as some have problems with legumes, the nightshade family, or other grains. The main section of it went to pharmaceutical funding a few years ago, and the moderators have not been kind to people who dare cross post in the general section and suggest that a gluten free diet, at least for some people with spinal arthritis may be helpful. I am very sure many who have haphazard results with the low starch just need to tweak it to go gluten free, and then they'd have all good days. They're all about the anti tumor necrosis factor drugs now. Those drugs make one more vulnerable to infections and certain kinds of cancer. They may be wonder drugs for the rheumatoid arthritics, but they should not be, just in my opinion only, pushed on gluten intolerant people instead of considering alternatives.

I don't think all spondylitis type arthritis is caused by diet. But I don't trust the pharmaceutical industry on this topic. They have a business agenda. It doesn't include my eating a salad for lunch and then posting on the internet this makes me feel better.

But... but... you didn't get tested. So ? It's not like I didn't try, I just gave up and stopped eating the stuff that made me sick and stopped groveling for medical confirmation. My PCP tested me by bloodwork last year (didn't tell me beforehand, and since it was then 5 years off of the gluten, of course I am not going to show much antibodies) when he also ran a thyroid test and the medical office then calls me up and chirps at me "good news, you're not celiac !" Well, uh, :blink:duh. Never claimed to be. I'm gluten intolerant.

(In retrospect I was showing symptoms in my late teens. So it only took me about 30 years to get sick enough to figure it out.)

Takala, do you have ankylosing spondylitis? If so, are you able to mostlycontrol it gluten free? I first started the gluten free diet after our house builder told me that this back problem was caused by AS and he absolutely refused to touch gluten.

Unfortunately I have not been able to control my PsA with diet and have had to finally resort to taking a TNF inhibitor after nothing else would work any longer for me and I was tired of the pain and not being able to use my hands. My rheumatologist told me I am not more likely to get infections but that I do I need to hop on them right away if I do get any because they can be more severe on this medication. There is a strong familial inheritance of various cancers in my family, so the threat of a few more...what the hey!

Like you, I took way too long to figure things out--mid-sixties. Of course, I had been through quite a few physicians by then!

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I figured it out all by myself at age 55. And like I told my husband just this morning, it's not like I never went to a doctor. I have had a lifetime of symptoms starting with indigestion as an infant.

At the time I figured it out, I had two doctor's appointments scheduled 3 months out. I didn't know enough at the time to call and insist on immediate bloodwork, and by the time my apointments rolled around, I had been gluten-free for three months and no way in heck was going to do a gluten challenge.

BTW, I did go to a GI doc last year and he didn't give a rip about telling me anything, just wanted to do procedures. That's were the real money is, obviously.

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I am curious what everyone's age here was at diagnosis. Whenever I heard of someone having Celiac before, I assumed they knew since they were babies. So, imagine my surprise when I found out at 36.

Now, I know better.

I was 26 when I was 'officially' diagnosed; 24/25 when my symptoms first appeared. I imagine many doctors share your thinking that celiac is a pediatric disease, in fact, my GI told me that he only studied celiac during pediatric rotations. He also said that this thinking is rapidly changing, as they are diagnosing many more adults, who often are not displaying the classic symptoms.

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I was 23. Diagnosed right before my 24th birthday. I had very severe symptoms for 4 years prior to diagnosis and then 8 years of moderate to bad symptoms. So, approx 12 years of active symptoms.

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I can control it with this. That and I have a routine I learned in physical therapy. The damage is done, but at least I'm not creating new damage. Well, unless I do something sort of brash, stupid, and fun. And I don't flare much anymore, unless I either ingest gluten or in the fall, when the weather starts getting really crummy when the rainy season comes on and the days get very short. Or if I physically over exert myself too much, I might need to just go to bed sooner and sleep it off. It's like my body needs a reset. Sometimes I can do this with a nap, also.

People's pain tolerance varies. I had to learn to ignore pain. I seem to be ultra sensitive to many drugs and I can't tolerate them well. I can't take muscle relaxants, I can't tolerate what is considered therapeutic doses of NSAIDS. And then there's allergies. As an example, I had minor surgery this fall and the physician wanted to prescribe me 800 mg of ibuprofen afterwards- that's four ibuprofens at a time, several times a day. No. no. no. No way. I'd be laid out violently dizzy and my kidneys would bleed. Told him I would take it as needed- didn't need it. Didn't need the other painkiller either. I recovered much faster from the surgery than anybody expected, and was told that was probably because I wasn't on anything beforehand, which was interesting.

I've only had a very few times where this has bothered my hands. Just about everywhere else, but not the hands, for which I am very thankful. Rib cartilage pain is nasty. I don't miss that. I don't miss having a lower backache all the time. I worry about my hips eventually giving out, but I'll just have to see what happens.

Because I am on nothing prescription for the arthritis most doctors make the mistake of thinking I don't have it, unless they see a scan report, since they can't comprehend this. Part of this is the new nomadism in our society. Even if I go to the same medical practice and ask for the same doctor there is a good chance the doctor will not be available or has moved after awhile, and they really seem to vary in listening skills. (as in, I'm also the wrong sex to have this, and they can't get over the stereotype) Part of this is that I may have exercised and walked around before the trip so I can pass for normal and drive the car. Part of this is that companies keep changing medical insurance yearly, and thus you have different doctors on these plans all the time.

I read the pharmaceutical studies (the "fine print" ) of these different disease modifying drugs and concluded I , for myself, did not want to risk those side effects, especially since I believe I fall into the category of which these drugs don't have that high a probability of a good outcome. But the point is moot, since I no longer have any desire to seek out a doctor who would believe that I have the disease anyway, if you hit enough lemons you get soured. Can't take drugs to damage myself further, to prove I need the other drugs anyway. The current PCP actually believes I have something wrong with my c- spine, and that's thrilling enough.

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I was diagnosed in Nov 2005 at the age of 57 after 3 months of Chronic Vomiting and Diarrhoea.

.

I lost 56 pounds in 3 months, I actually thought I had Cancer.

.

Now I've put back all the weight + a lot more, I have a large pot belly

which is being investigated medically, because it developed over about 10 months.

.

Had an X-Ray, going for an Ultrasound on the 9th.

They want to eliminate, fluid, a fatty mass or a growth!!

.

Fingers crossed.

Best Regards,

David

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I was 20, had mild symptoms starting at 17 that got much worse around 19/20. It took a whole summer worth of visiting different doctors to finally crack it, and, out of frustration, having done some internet research myself through the Merck Manual, I was actually the one who first suggested Celiac.

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58 years old. Thought I was healthy as a horse, and proud of it! I got sick one evening about a year ago. Took about 6 months to figure it out. One of the things that was hard for me, was accepting that I was born with it! I may have had a few indicators, but nothing that would indicate celiac to someone that knew nothing of celiac. ( I had my gall bladder removed about 5 years ago, don't think it was bad...now.) I have very itchy ears ( 15 years) and 6 months into this, am beginning to think they itch due to gluten. When all the other sysmptoms appeared, my ears stopped itching. Going gluten free, except for the screw-ups, the other symptoms have dissappeared, but now my ears are itching again. Does anyone else have itchy ears? Also, after going gluten free, if I get into gluten, I have a couple fingers that get real rough and crack, this I am sure is DH. I know this happens after being glutened...now I am trying to figure out if my ears "have a pattern" as well. The more I learn about celiac, I "see" that my family is riddled with it.

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.....

.

Fingers crossed.

Best Regards,

David

I'll cross my fingers for you too. :)

I was 51 but I've had digestion/C issues for 35 years and although I didn't go to doctors often I did see them. My secondary symptoms were migraines, then boils, anxiety attacks and then ultimately, at 49 years old, after a tick bite resulted in pain traveling around my body for two years my digestion collapsed/exploded. I lost 40 pounds in about four months, couldn't eat, was having tingling, numbness and walking like I was drunk.

I didn't get anywhere with my GP but was fortunate to see a gastro after about a year and a half of having various test that didn't show anything. The gastro mentioned celiac and once I did the research I went gluten free.

At the same time that I was ill two of my brothers were also very ill with the same symptoms: dramatic weight loss and an inability to eat. One was subsequently diagnosed with celiac by endoscopy and the other went gluten free. I also found out that my youngest sister had been diagnosed with celiac several years before, unfortunately she was under the impression that her main problem was IBS and all her doctor told her about celiac was to avoid wheat. My brothers were 48 and 49 and my sister was in her early 30's but was diagnosed with IBS in her 20's.

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I am curious what everyone's age here was at diagnosis. Whenever I heard of someone having Celiac before, I assumed they knew since they were babies. So, imagine my surprise when I found out at 36.

Now, I know better.

I was just diagnosed last week, thru blood test & biopsy at age 53. This was after I asked for the tests by reading up on my symptoms on the web. My gastro doc says I have a "mild" case, whatever that means!! I haven't started eliminating gluten yet, as we just returned from vacation and I'm trying to find a nutritionist familiar with celiac. ;)

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I was just diagnosed last week, thru blood test & biopsy at age 53. This was after I asked for the tests by reading up on my symptoms on the web. My gastro doc says I have a "mild" case, whatever that means!! I haven't started eliminating gluten yet, as we just returned from vacation and I'm trying to find a nutritionist familiar with celiac. ;)

Hi. :)

Good for you for doing the research! I am thinking a "mild' case may mean the damage to your villi may be minimal but being mildly celiac is like being mildly pregnant. :lol:

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Looking back I have had problems since I was little but just got used to my "nervous" stomach. I was actually diagnosed on October 15, 2008. I consider this day my "new" birthday. I was sick for 12 years. I am 49.

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I was diagnosed with positive bloodwork at 48 but have had digestive issues since I was 11 and had seen numerous Gastros who diagnosed IBS and colitis. (Also, I was a very "colicky" baby...) Got EXTREMELY ill after salmonella poisoning and never got better- thought it was cancer. Lost much weight (thin already), mucho pain and over 26 exciting symptoms later a new gastro asked if I'd been tested for Celiac.

Yip, they need to teach the old docs a bit more about this disease... My brother's having tons of digestive issues right now and I keep telling him to insist on a Celiac panel but his doc won't do it even though he told him his sister is diagnosed. It's enough to make you wanna... do something bad!

Take care,

lisa

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I had subtle symptoms all my life, and got hit with the big ones one day when I was 19, started losing wieght, nutrition, cholesterol, everything plummeted and my family was FREAKED. Me too, it's very scary to feel like you're dying. And this only lasted six months, so the severity of the illness is apparent. I read in a book about people who can't eat wheat, figured hey why not, stopped eating wheat, and stopped having my 'episodes' (where I passed out spontaneously). Took another year to find out about gluten, and after having been gluten free for a while, the first time I got glutened I got the DH rash, so we know it's Celiac. Never got formally diagnosed. I told my doctor I stopped eating the food that bothered me and I'm better now, and he said "Good, never eat it again." I love that man, even if he didn't figure it out for me!

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I was 46 years old when I was diagnosed, after 20+ years of intense symptoms and the inability to get past 105 lbs, at 5' 4" tall. I hit the wall

and became deathly ill after consuming some nice hot cross buns over Easter of 2005. I have 3 other autoimmune diseases as a result of being

misdiagnosed all those years, which is inexcusable considering I looked like a textbook Celiac. I am still trying to figure out why doctors go out of their way to

NOT test for Celiac today. :huh:

Every single one of my siblings and both my parents have active symptoms, both gastric and neurological. I carry a double DQ-2 gene, so it is on both sides of the family. However, all the rest of them are in denial so currently, I am the healthiest member of the family. You'd think that would convince them that wheat is bad!

It's interesting that many of us here were diagnosed in their mid to late 40's and up. So it must be true....that's about the age where you fall apart! :lol:

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