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At What Age Were You Diagnosed?


fisharefriendsnotfood

At What Age Were You (or Your Loved one) Diagnosed?  

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fisharefriendsnotfood Apprentice

I just wanted to make this poll because I fell like I'm one of the only ones who was diagnosed very young (2 years of age). Okay, Thanks!

-Jackie


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  • Replies 66
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Lisa Mentor
I just wanted to make this poll because I fell like I'm one of the only ones who was diagnosed very young (2 years of age). Okay, Thanks!

-Jackie

<{POST_SNAPBACK}>

Interested in seeing the results....good idea.

Lisa B.

fisharefriendsnotfood Apprentice
Interested in seeing the results....good idea.

Lisa B.

<{POST_SNAPBACK}>

Thanks.

-Jackie

Eliza13 Contributor
I just wanted to make this poll because I fell like I'm one of the only ones who was diagnosed very young (2 years of age). Okay, Thanks!

-Jackie

<{POST_SNAPBACK}>

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

KaitiUSA Enthusiast

I was diagnosed at 16...I am now 18

Carriefaith Enthusiast

I was 22.

ianm Apprentice

I was 36 and on the verge of losing everything. You are one of the lucky ones to have been diagnosed so young.


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ravenwoodglass Mentor
I just wanted to make this poll because I fell like I'm one of the only ones who was diagnosed very young (2 years of age). Okay, Thanks!

-Jackie

<{POST_SNAPBACK}>

Your so lucky. I was 45 and had been sick for 15 years, although the depression. DH and nuerological effects started when I was about 7. They couldn't figure out why I had poison ivy all year round. Duhhh. I went through years of very painful shots for that. I was almost totally disabled for the last 5 years before I was diagnosed. And I am not unusual :angry: .

2Boys4Me Enthusiast

My son was 5 (and 3/4) when he was diagnosed. So far, he's the only one in the family with it.

jerseyangel Proficient

I was 49 (still am) and have had problems for 20 years. They got a lot worse 2 yrs. ago.

Rachel--24 Collaborator

34 and like Ian...on the verge of losing everything. Back on track now.

jrom987 Apprentice

I am 46 and have had symptoms for years and years. I am sure that everyone thought I was a hypochondriac, even my family and doctors! In a weird way, I am glad they found something and now I can "cure" myself. I have so much to learn about being gluten-free but I am off to a good start and this place is such a God send! Thank you!

burdee Enthusiast

I'm 58, was diagnosed 18 months ago, but had accepted most of my symptoms as 'normal for me' UNTIL I experienced increasing excruciating abdominal pain after hemorrhoid surgery. That surgery was necessitated by chronic constipation which was due to casein intolerance which I suspected 50 years ago. <_<

BURDEE

MySuicidalTurtle Enthusiast

I was 17 when I was diagnosed.

celiac3270 Collaborator

Diagnosed at 13.

psawyer Proficient

I was 46 when given the diagnosis, but I had symptoms for years before that. I was an undiagnosed celiac for at least 5 years before that. Unexplained gastrointestinal problems since ange 15. Now I think I know what the cause was, but at the time the doctors had no clue.

jmarie Newbie

Diagnosed at 29 after 12 years of severe arthritis and anemia. At 17, they diagnosed me with "autoimmune disorder - unspecified", and they treated just symptoms for years. I assumed my stomach distress was psychosomatic/stress-related until it became so severe that I was vomiting after I ate anything. It would have been nice to be diagnosed earlier, but my gluten-free diet doesn't seem to be helping too much, either.

sonjaf Rookie

Diagnosed at 35, after having severe symptoms for 3 months. You are lucky you found out so young. I hate having to change my entire lifestyle at my age! :P

happygirl Collaborator

Diagnosed at age 23, right after I was married! Very sick for 10 months before diagnosis. But, had mild GI problems during college.

eherhold Newbie

Diagnosed at 37. Prior to that had problems since age 20 or so. More severe the last 5 (after my daughter was born).

Nicolette Rookie

Diagnosed this year, aged 33, after twenty-five years of symptoms.

Marjolein Newbie

I am now 39. I was diagnosed when I was 2 and the doctor said I was cured when I was 9. Was not realy healthy my whole life. Got sick during the hollidays 3 months ago and was diagnosed with.............celiac. So I am learning to eat gluten-free again.

Marjolein

FaithInScienceToo Contributor

I was 47, when I self - diagnosed in January '05, and when I was officially diagnosed in Feb 05 -

I went through 2 decades of severe problems.

I am SO happy for those that got diagnosed earlier in life :), and I am also SO happy that I finally found out what was 'wrong with me'...

Love, Gina

TheLibertarian Rookie

<_< I was diagnosed just recently at 25. I was really fortunate because I work in the health care industry and had access to software and dictionaries and reference materials I could research my own symptoms on. If I had'nt, I would never have gotten help.

All-time worst doctor story:Right after getting sick, I noticed my abdomen seemed swollen and large compared to the rest of me. I knew I had been too sick to excercize but I knew this was'nt right. When I brought it up at the doctor's office, she advised me to "do leg lifts."

elonwy Enthusiast

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

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    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
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