Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Age Of Diagnosis?


foodiegurl

Recommended Posts

Mrs. Smith Explorer
Looking back I'd say my symptoms started when I was 15 after I had a severe case of mono. I was just diagnosed though back in October. I'm 25 and very thankful I got my diagnosis now. Some of the stories on here from people who waited a life time for a diagnosis are bad enough to make me cry!

Diagnosed after a BAD episode at age 28. I think mine also started in teen years. I had terrible D after eating cream of wheat. Infertility and miscarraige were some signs and always gastro symptoms. In March of 2008 I started having muscle pain and tingling. All are improving 3mos gluten free. My Dad also has Diverticulitus and IBS. I wish he would get tested for Celiac, too.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 65
  • Created
  • Last Reply
Wenmin Enthusiast

Diagnosed at 41. Although I've suffered for the last 6-7 years. GI doctor could not find anything and kept telling me I had Acid Reflux. I was in for my annual OBGYN visit and was telling my doctor some of the symptoms I had. He suggested I go home and look up Sprue Disease on the web. The more I read the more I could see myself. Did some intensive research on the net for about 3-4 days. Then went to see a nutritionists. She recommended that I see a GI doctor in another larger city that specializes in Celiac.

I have never been back to my GI doctor. But, I have gone back to thank my OBGYN! HE WAS THRILLED!!!

princesskill Rookie

i was diagnosed over the last year between 25 and 26 years old. it was sort of by fluke, i have polycystic ovarian syndrome, and my reproductive endocrinologist saw that i was severly deficient in several vitamins and was anemic, between her and my GP we figured it out and tests confirmed.

ranger Enthusiast

I was 62 when self-diagnosed with celiac. Had been sick for nearly 2 years. Constant D., wieght loss, extreme lack of energy, many symptoms. I found this sight and tried gluten-free diet and felt much better. Went to Doc who took blood test (only 1 ) that showed up neg. for celiac. Of course I knew it would, because I had been on the gluten-free diet. Took the huge leap of making an appt. with Gastro guy. Went on gluten challenge for 3 weeks ( I was instructed to eat 1 piece of bread a day) for endo. Took 1 biopsy and declared neg. for celiac.. Of course, by this time, I was sick as a dog! And then I found out that he had used the blood test from the first Doc.! Went back on gluten-free diet, have gained 11 lbs., and can finally get awy from the bathroom! Growing up, I don't recall any health issues, and I was a healthy wheat-eating adult untill this. I did have a problem with panic attacks (controlled)and consantly cracked fingers, but dismissed those. By the way, my ears itched consantly! Wierd. But, I feel so much better now. Just started B-12 4 days ago, and can feel the difference. I don't like Doc.

ranger Enthusiast

Forgot to mention. Sister dx with celiac at age 12. Mother dx with chrons, but I think she was probably celiac. If they can't get it now, they probably goofed in the 70's.

ranger Enthusiast

Forgot to mention. Sister dx with celiac at age 12. Mother dx with chrons, but I think she was probably celiac. If they can't get it now, they probably goofed in the 70's.

Lollie Enthusiast

I was 32ish....


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyberprof Enthusiast

Age 48

I believe that I had first symptoms at 17. Started getting arthritis pain, and was tentatively diagnosed with Rheumatoid Arthritis. Had terrible stomach cramps (writhing on the floor) two-three times a week, mainly after eating big meals-- I thought it was stress or eating too much.

Other symptoms were frequent big D, depression, arthritis, anxiety, frequent mouth sores, early(quick) menopause.

~Laura

Glutenfreegirly Newbie

Hello my name is Rachel and I was 13 when I found out I had Celiac. I am a freshman and I have proudly been eating gluten free for two years. :rolleyes:

emcmaster Collaborator

21.

I had been sick for 2-1/2 years before that.

I feel fortunate that I wasn't sick for that long before I went gluten-free. Could have been a lot worse.

puggirl Apprentice

I was 27, in Aug, 08 is when I was diagnosed.. I've been gluten-free ever since... Except for acouple accidentel Glutens... But have gotten through it...

I've had Bad stomach problems since I can remember, young like 5-6yrs old.. I used to be a very nervous kid so I always had belly aches. I finally got FED-UP with the stomach pains I went to the doc and we figured this was my problem, and it seems to help for sure.. Every once in awhile I still get sick and have bad nights, but for the most part I've been better, I will find out more when I get a colonoscopy in a few weeks "Yeah Cant wait :rolleyes: "

mattathayde Apprentice

found out at 18 april 08(just a couple months before my 19th), i have had symptoms for years, probably all my life just never realized it. took a few months before i was trying to be 100% gluten-free but i did eat pretty gluten light and started to see some improvement, been trying to go 100% gluten-free since july of 08 (last gluten thing i can honestly remember eating know it had it was on july 4th my brothers girlfriend (who past away in aug from an aneurism) brought awesome cup cakes, looking back was well worth it).

i have been accidently glutening my self for a while though, stupid kellogs cornflake crubms i was using in a meatloaf recipe made with malt.

my mother had a wheat allergy when she was young and my dad has a sensitivity to wheat/gluten but neither have been check in any way for celiac disease yet.

only way i found out was an alternative medicine person we go to, my old doc said i had IBS and my current doc said theres no reason to do a test if gluten-free works for me the only thing the tests will do is tell us what we already know, raise insurance rates, and make me suffer a month of gluten

-matt

lenjac Newbie

I was 33 and kept complaining of reflux issues that the GI doctor would not agree with. Finally family practioner order the celiac blood panel. Felt soooo much better w/in 2 weeks! Have been gluten free for over 4 years.

To all the newbies, it gets easier as you go. But every accidental glutening seems harder to handle.

calgaryjill Newbie

Diagnosed in Nov 2002 at 48 but have never had gastric symptoms. Anemia was the red flag that got my Dr interested. Iron levels had been very low for many years even though I was peppy and had no troubles keeping up with the kids. I could pump the iron levels up with iron supplements but not sustain it. Even after being gluten-free for a year though my irons levels didn't recover and it was put down to my menstrual flow. Now that I'm done with that, iron levels are fine. Because I don't ever have a gastric reaction to gluten I sometimes sneak a taste of forbidden foods and don't worry too much when we travel although I do try to avoid gluten whenever and wherever I can. I know I'm tempting serious consequences but am willing to take that risk.

frecOregon Newbie

I was 46, but I'd had dangerously unpredictable digestion since college. One doctor told me I had irritable bowel--I said, "Isn't that just a medical term for we don't know what's wrong with you?" I gave up milk and that helped. I started eating bananas, rice, and eggs before any major event as they were the only foods that I knew didn't make me sick. A new young doctor referred me for a test when my reflux got so bad that I lost my voice for several months.

CMG Rookie

I was 43. First figured out that I did better on low-carb diet back when I was 30. At that point I had had many symptoms for 10 - 15 years. So, somewhere around 25 years of symptoms before figuring out that gluten is the culprit - including migraines, brain fog, vertigo, neuropathy, rheumatoid arthritis, possible sjorgrens syndrome, reflux and all the other digestive symptoms, and the list goes on.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      10

      Diagnosed Marsh stage 3C in January 2026

    2. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      10

      Diagnosed Marsh stage 3C in January 2026

    3. - Known1 replied to oceangirl's topic in Gluten-Free Foods, Products, Shopping & Medications
      21

      Lubriderm-gluten-free?

    4. - knitty kitty replied to oceangirl's topic in Gluten-Free Foods, Products, Shopping & Medications
      21

      Lubriderm-gluten-free?

    5. - Scott Adams replied to Olenaideole's topic in Gluten-Free Foods, Products, Shopping & Medications
      18

      What apps or tech tools help you manage celiac disease?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,423
    • Most Online (within 30 mins)
      7,748

    Jennie s
    Newest Member
    Jennie s
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Known1
      It looks like she has a couple of books that share "The Paleo Approach" in the title.  I ordered this one, as the other is a cookbook. The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body Thanks again for the info.
    • knitty kitty
      @Known1,  I understand you have had your B12, Folate B 9, and Vitamin D level checked.  However there are other B vitamins that are not routinely checked because blood tests for other B vitamins are terribly unreliable, expensive, or cumbersome to use frequently.  Results can take a long time to get back, delaying proper treatment and risking permanent damage.  It's easiest to supplement and look for health improvement. Blood tests can reflect how much of a certain vitamin was consumed in the past twenty-four to forty-eight hours.  Vitamins released by digestion is absorbed by villi, anemone like projections that increase the surface area of the small intestine, and then pass into the blood stream for distribution around the body.  A Marsh score of 3C indicates severe damage to the villi lining the small intestine.  Absorption of nutrients is definitely affected.   Blood tests don't reflect the amount of a vitamin  that is stored inside cells before being used.  You can have "normal" blood levels but have deficiency within cells of organs and tissues.  Tissues and organs will relinquish their stored vitamins into the blood stream in order to keep the brain and heart working while tissues and organs are depleted.   It's possible to have a localized deficiency of Thiamine B1 in different organs which cause the organ to malfunction.  Gastrointestinal Beriberi is caused by Thiamine deficiency in the gastrointestinal tract.  Gallbladder dysfunction, thyroid dysfunction, heart attack, and cognitive dysfunction can be caused by Thiamine deficiency.   Most of the B vitamins cannot be stored for very long, maybe six weeks. B12 can be stored for as long as a year in the liver.  So having "normal" B 12 levels does not mean all your other vitamins are "normal" as well.   Thiamine can be stored for eighteen days, however  Thiamine can be depleted within three days.  We have a greater metabolic demand for Thiamine when we're physically ill, emotionally stressed or are physically active (work out regularly) or work outdoors (or ride bikes).  Because most B vitamins can become low within a month or two under the best of circumstances, many newly diagnosed feel great on the gluten free diet at first.  After that, they seem to start going downhill.   The nutritional deficits start making themselves known.   Keep in mind that processed gluten free foods are not enriched nor fortified with vitamins and minerals to replace nutrients lost in processing like their gluten containing counterparts are.  You have to replace them yourself by taking supplements at least until the villi regrow and absorption improves. The eight B vitamins are water soluble.  They are easily lost if one has diarrhea or constipation or in those with a high Marsh score.  Because they are water soluble, the body can easily excrete excess through the kidneys.  Recommended Daily Amounts are based on experiments done on humans to find the minimum dose required to prevent disease.  Levels for optimal health are much higher.   Doctors are trained in medical learning institutions which are funded by pharmaceutical companies.  Requirements for nutritional education have been reduced to twenty class hours over the course of the seven years of medical school.   Three-day weekend seminars earn ten hours.  Vitamins cannot be patented as they are natural substances, so there is more profit for doctors to prescribe pharmaceuticals.  They are taught to cover symptoms with pharmaceutical bandaids.  They may not look for what caused symptoms to appear in the first place.   Doctors are taught nutritional deficiencies don't occur except in impoverished or drought stricken countries.  This is not accurate.  Nutritional deficiencies can occur if you eat a High Carbohydrate Diet, eat the Standard American Diet, and if you have malabsorption problems as occur with Celiac Disease.   You can check out my blog for the challenges I faced due to vitamin deficiencies that went unrecognized by doctors.   Talk to your doctor and new dietician about supplementing with vitamins, minerals and essential nutrients while your villi are healing.  My favorite Celiac book is The Paleo Approach by Dr. Sarah Ballantyne.  She explains the AutoImmune Protocol Diet.  It has been shown to reduce inflammation and promote healing in the gastrointestinal tract. Best wishes!
    • Known1
      Thanks, I had already sent you a direct message regarding bananas.  Maybe just reply to that?
    • knitty kitty
      @Known1, I'm sure you can find a shelter or community service group that would appreciate your lotion donation.   I've replied to the topic of your bloodwork as it relates to vitamins in your "Introduce Yourself" post so as not to high jack this thread.   Thanks
    • Scott Adams
      The comments requested are very limited in scope, and I don't think this shotgun approach would be helpful, but that is just my 2 cents, for what it's worth.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.