At What Age Were You Diagnosed?

[Guest Viola]

It's nice to see that quite a few of us are voting. I hope it keeps up. It's interesting to see the results.

[Rachel--24]

Diagnosed at 27 after years of minor naggling health issues and one year of really bad health. Interestingly enough, my bad symptoms developed after I quit smoking ( diff thread). Seems like theres alot of us here in that age range.

Elonwy

<{POST_SNAPBACK}>

Elonwy,

My symptoms came on the same month I quit somking too. I'm pretty sure there is a link...read something about it before. Where is the thread??

[elonwy]

I searched for cigarette at one point ( trying to find out if zig-zag is gluten-free, still have the occasional puff, and I'm a roll-your-own gal.) and they were talking about case studies that showed smoking delayed onset or at least symptoms of Celiac ( not that its a fair trade at all). If you Google smoking and Celiac it comes up with some really interesting articles on the subject.

Elonwy

[elonwy]

Oh heres the quote from this site, just found it:

https://www.celiac.com/st_prod.html?p_prodid=1021

-E

[fisharefriendsnotfood]

Thanks everyone for posting! I'm very excited about this poll and I'm happy everyone else is too!

-Jackie

[GC1]

Self-diagnosed (with help from old Cherokee man) in July at age 48... still trying to get over the anger of not learning sooner. But as many know; those over 40 had little chance of hearing of Celiac or similar from conventional medicine... especially for the majority of us not lucky enough to be exposed to 'alternative' health care, which has been so attacked from as far back as the early part of the [20th] century.

~~~~~~~~~~~~~~~~~~~~~~

Interesting tid-bit:

"As I see it, the wise thing for the medical profession to do is get right into and man every great health movement. Man health departments, tuberculosis societies, child and infant welfare societies, housing societies, etc. The future of the profession depends on keeping matters, so that when the public mind thinks of these things, it automatically thinks of physicians and not of sociologists or sanitary engineers (his name for Natural Hygienists). The profession cannot afford to have these places occupied by other than medical men". ---Dr. W. A. Evans (Commissioner of Health --- Chicago) Remarks appeared: JAMA (Journal of the American Medical Association) Sept.16, 1911

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Great poll!

GC

[lilupstategirl]

17yrs old i was diagnosed

[WRowland]

Self-diagnosed this year at 52, thanks to Dr. Fine's Enterolab.

I was probably activated at 30 by a life-threatening pregnancy. Developed multiple severe food allergies, anemia, lost two inches in height, and semi-disabled for three years. Self-diagnosed allergies after 30 months of antibiotics for "sinutsitis". (I had done RAST testing for an allergist, duh!) Sub-cutanous allergy testing was like being hit with bullets.

Gave up yeast baked goods, but not pasta, at that time, and many foods I was reacting to. Many elimination diets over the years. Gradually moved rice and beans to the center of the diet, and gave up dairy about ten years ago. Lots of listening to my body's reaction to food. So nearly gluten free for years, but mildly symptomatic at times.

But all three children had EGDs before age 20 for GI symptoms. Then my 22 year old daughter had a car accident and hasn't been able to eat right since. Lost 25 lbs involuntarily, severe drop in hemoglobin, lives with nausea, vomiting, pain, etc. anytime she eats (pizza probably), migraines,etc. She had EGD but was biopsy negative. Meantime she's starving. Sound familiar? So I started researching. Remembered a Gastroenterologist I worked with saying that the Irish had a lot of sub-clinical celiac.

Then I found Dr. Fine and had myself tested-the works-even though I was already mostly gluten free. Fortunately, results say I am not active at this time. Still went all the way gluten-free. Had to start the family screening process somewhere. Needed to know how aggressively I needed to lobby for gluten-free prescription meds.

Now we are waiting on tenderhooks for gene results for my husband and daughter. The step-children are next, and my father and my brother's family of five.

[Matilda]

...

[Rachel--24]

Good luck Matilda!

I think cigarettes make me feel worse because my immune system just cant handle the toxins anymore. Same way I cant tolerate lots of things right now...like aspartame and perfumes.

[Guest nini]

I was 34 when I was diagnosed. Sick pretty much all my life but it seemed to get much worse after several miscarriages and a life threatening pregnancy. My daughter subsequently was diagnosed at age 3.

[kevsmom]

Oh boy....are you ever lucky.  I learned this year at 29, after many medical complications.

<{POST_SNAPBACK}>

I was diagnosed this year at age 46. I had a lot of the same symptoms as you (plus some). Even with my family history, I wasn't tested for 3 years. I don't know why I didn't insist...Yes I do, I didn't want it to be positive.

-amenorhea (I went a whole year once)

-high prolactin levels

-swollen ankles

-some reflux

-depression (most of my life)

-father had Ulcerative Colitis and a Iliostomy 25 years ago (undiagnosed Celiac?)

-brother has had Celiac for 10 years

-occasional daily bouts of diarrhea that would last up to 3 months

[codetalker]

I as DX'd as a baby at Johns Hopkins. At that time, they thought the condition was temporary. The DX was "celiac baby". At about age 3 or 4, I was put back on an unrestricted diet. My parents did not want me to be a picky eater and use celiac disease as an excuse not to eat things I did not like, so they never told me.

Symptoms started coming back in my early 20's. By my early 40's, they were severe. Doctors said it was stress and/or IBS. With the help of the Internet, I DX'd myself and started the diet.

So, I was DX'd twice.

Chuck

[Idahogirl]

I was diagnosed with DH at age 19 (had it since childhood). Ignorant doctor never mentioned celiac. After researching and putting the two together, was finally diagnosed by gastrointenologist after begging my dermatologist for a referral. Can't remember for sure, I think I was 22.

[JUDI42MIL]

I was 45 when dxed. Had it my whole life though Im sure. I spent my life being told I was bulemic, or anerexic, in and out of doctor offices and hospitals.

I vomited after every meal practically for 30 years-- Still amazed no one ever tested me for this before. My mom also has it-- dxed at 65..... one daughter has been dxed with it at age 18..

[Mamaw4]

I was just diagnosed, at 51. I have had a lifetime of iron deficiency and depression. Finally I hope an answer has been found! I am still undergoing testing, I just hadd a capsule endoscopy this past week to determine the extent of damage. I am doing to my best with the diet changes....it is still pretty confusing and the social situations are starting to come up..explaining to people without boring them to death

[newo ikkin]

I was diagnosed a few weeks before I turned 15.

[skoki-mom]

I was 35, almost 36 when I was diagnosed the end of August. Who knows, I might have gone my whole life and never known I had it if my sister hadn't fallen on the ice last winter and broken her hip! I haven't been sick a day in my life with it. Guess I'm lucky.

[lindalee]

I as DX'd as a baby at Johns Hopkins. At that time, they thought the condition was temporary. The DX was "celiac baby". At about age 3 or 4, I was put back on an unrestricted diet. My parents did not want me to be a picky eater and use celiac disease as an excuse not to eat things I did not like, so they never told me.

Symptoms started coming back in my early 20's. By my early 40's, they were severe. Doctors said it was stress and/or IBS. With the help of the Internet, I DX'd myself and started the diet.

So, I was DX'd twice.

Chuck

I was also diagnosed as a baby at Johns Hopkins at 15 months. They told my parents to keep me on the diet for 2 years. I thought I had outgrown it until Feb. 06. when I dx'd myself and started the diet. How are you doing now? Have you had any complications due to being off the diet so long?

[Debbie65]

I was also diagnosed as a baby at Johns Hopkins at 15 months. They told my parents to keep me on the diet for 2 years. I thought I had outgrown it until Feb. 06. when I dx'd myself and started the diet. How are you doing now? Have you had any complications due to being off the diet so long?

I was also diagnosed as a baby at Oakbank hospital in Glasgow or was that where I went to recuperate - not sure but I´m a silly cow who put herself through years of hell between the ages of 18 and 40 by rejecting the diet. Been gluten-free now for almost 2 months and some days I feel almost human again.

[lindalee]

Wow, I wonder how many of this group are baby celiac's that have been off the diet until recently. How are you feeling? I am so much better than I wqas last year when I got sick. My celiac symptoms came of full blast then. Fatigue, depressed, rashes....I couldn't figure it out until I suspected the gluten. Thank God! I have been on this site so much now my shoulders are tired - ha, ha, Have you been back to the dr? I haven't. Anyway, I am so excited to know I am not by myself. Take care

[kbtoyssni]

I was 23 when I got diagnosed. I've had mild symptoms for about eight years with things getting really bad about a year before diagnosis.

[AndreaB]

Just diagnosed this year through enterolab. I'm 39. My infant son started the ball rolling with his eczema (see sig). I had no obvious symptoms.

[Debbie65]

Wow, I wonder how many of this group are baby celiac's that have been off the diet until recently. How are you feeling? I am so much better than I wqas last year when I got sick. My celiac symptoms came of full blast then. Fatigue, depressed, rashes....I couldn't figure it out until I suspected the gluten. Thank God! I have been on this site so much now my shoulders are tired - ha, ha, Have you been back to the dr? I haven't. Anyway, I am so excited to know I am not by myself. Take care

I have good days and bad days but the first thing to go was the constant need to hold in gas in public - sorry to be gross but I´m very glad that I don´t have to laeve the room all the time to fart anymore - can´t believe I wrote that I´m not quite into discussing the gross aspects of this disease yet.

Actually, my friend is getting married after a whirlwind romance and she went away for a romantic weekend. They went for a curry and she said the "mood was spoiled cos she had to keep making excuses to leave the room to let rip. I was horrified that she even considers marrying some she can´t fart in front of but maybe that´s another - You know your coeliac if......

Sorry I´m off the point and being flippent, I´m feeling better all the time and I did go back to the doc in my 20s, was biopsied and had a negative result so was diagnosed as having IBS and given medication that didn´t help. The negative result was of course like a lisence for me to have gluten overload which is problably why I was so ill when I found this forum and read that negative biopsies are useless, especially when I´d already had 3 as a child to diagnose me in the first place but we live and learn.

And yes, it´s good to know we´re not alone.

[lindalee]

Debbie, I am so glad you joined. So many have so many results from various tests - I do plan to go and make sure my blood levels look ok. Also I have been eliminating dairy and soy and most corn just in case. I still feel like I eat all the time. Guess the empty feeling will go away after a while. I don't think I am underweight though- 5'3 - 108. Also I am trying not to eat sugar. Wishing you good health...