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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
fisharefriendsnotfood
Posted

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
Lisa
Posted
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
fisharefriendsnotfood
Posted
  • Author
Interested in seeing the results....good idea.

Lisa B.

<{POST_SNAPBACK}>

Thanks.

-Jackie

Eliza13 Contributor
Eliza13
Posted
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
KaitiUSA
Posted

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

Carriefaith Enthusiast
Carriefaith
Posted

I was 22.

ianm Apprentice
ianm
Posted

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
ravenwoodglass
Posted
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
2Boys4Me
Posted

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
jerseyangel
Posted

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

Rachel--24 Collaborator
Rachel--24
Posted

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

jrom987 Apprentice
jrom987
Posted

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
burdee
Posted

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
MySuicidalTurtle
Posted

I was 17 when I was diagnosed.

celiac3270 Collaborator
celiac3270
Posted

Diagnosed at 13.

psawyer Proficient
psawyer
Posted

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
jmarie
Posted

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
sonjaf
Posted

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
happygirl
Posted

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
eherhold
Posted

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
Nicolette
Posted

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

Marjolein Newbie
Marjolein
Posted

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
FaithInScienceToo
Posted

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
TheLibertarian
Posted

<_< 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
elonwy
Posted

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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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
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      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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