Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 At Onset Of Symptoms?


healthy1

Recommended Posts

healthy1 Newbie

Hi everyone,

I was wondering at what age did you start with symptoms? It seems that a lot of 5 year olds are newly diagnosed, I was 5 at start of symptoms and so were my 2 girls, it seems odd, but maybe just a coincidence? thanks for replies!


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



Celiac.com Sponsor (A8-M):



ROYAL BLUE Apprentice

My son is now 6, diagnosed in October 2003. He was diagnosed as Hypothyroid at 3 months, no known cause. He never slept, was losing weight and short stature and never had normal stools. At about 3 years I started asking questions about his distended abdomen, was told he just did not have the muscle tone yet. Oh ya, he was also diagnosed asthmatic at about 6 months of age. Finally this summer, I mentioned his abdomen to his endocrinologist, she immediatley said Celiacs . Things progressed from their.

Tracy

Guest eileen

I was 55 years old before celiac was discovered but none of my family has it or symtoms of the disease. :rolleyes:

gf4life Enthusiast

The earliest I can remember I had joint pain and inflamation since I was 4 years old, and the tummy troubles came and went all my life. I was 29 when I found some information on gluten intolerance and went looking for a doctor to run the tests. I finally got my diagnosis this year. I am 31 years old. No one else in my family has ever gotten diagnosed, but I am sure many of them have celiac disease. In all the dozens of doctors I have seen, not one of them ever mentioned Celiac Disease.<_<

Mariann

Guest aramgard

I started off with severe allergies to pollens when I was 11, then the dermatitis when I was about 13-14, by the time I was 15 I was covered with that itchy, burny, blistery rash which was open and weepy and would wake up glued to the sheets. At age 17 the dermatologists and allergists told my mother that she should take me to a psychiatrist, that this was anxiety. Around age 35 I developed occasional severe bouts of diarrhea, alternating with constipation. But it still took them until I was 67 to diagnose me and then I had to ask for the testing. If anyone out there thinks he or she may have this problem, don't hesitate ask for the tests and even if the tests are negative don't give up, it could still be Celiac. Shirley

MySuicidalTurtle Enthusiast

I started at around 4 with symptoms but they didn't know what it was until I was 17.

wclemens Newbie

My symptoms started at age 8, and I went to doctors and specialists for years, with no improvement. During my late 20s I tried an elimination diet and found that wheat, grains, milk, dairy, egg whites and yeast made my symptoms worse, but still was hospitalized several times after that, until in my 40s I learned to avoid those TOTALLY. In my 50s I learned I had Celiac and eliminated most processed, canned, or packaged foods, and finally stopped chocolate (duh--milk chocolate) and now feel great.

It is the maltodextrin, casein, whey, etc. or other additives that I have to watch out for now, and I always read labels VERY CAREFULLY. Going to restaurants is another pitfall, and will sometimes result in those old familiar feelings of aggravation, irritation, or depression when the kitchen adds some strange ingredient of which I am not aware. It makes eating at home more and more delightful. Welda


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



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
shelagh-e Newbie

I remember that I started exhibiting off-and-on symptoms in college (around 20 years old, that was 9 years ago).... I kept having a pain in my right side that would wax and wane, along with tons of other problems that the doctors never pieced together (most notably, living in a daze/fog/constant exhaustion, swollen glands in my neck for over a year and a half, mouth and tongue sore spots, sore throat, constant eye infections, hearing problems, anemia, abdominal bloating, and susceptibility to every cold that came through the workplace). I went undiagnosed until May, 2003, after two months of a GI crisis.

However, I also have dental problems since childhood, involving tooth enamel discoloration, that might be related to celiac disease.

Colette Newbie

My son started showing symptoms at 12 months. He was diagnosed (biopsy confirmed) about 7 weeks (10 lbs. lost) later. That was about 3 1/2 years ago.

Colette

Stephanie7297 Newbie

My son started showing symptoms when he was 18 months old (he basically stopped growing and stopped weight gain). At his 3 year well baby check up is when the doctor first mentioned Celiac's and wrote up the order to get his labs drawn. 2 out of 3 were positive (IGG were positive, TTGAB was negative). Ended up getting a bone age done at 3 years and 5 months had bone growth of 2 year 1 month old child. HGH, Thyroid, Liver, Pancreas all tested within normal limits. Biopsy done in Feb. 2003 showed long and intact villi AND patchy Inflammation (had spaghetti the night before). Started on gluten-free diet 2/2003. Shortly after starting gluten-free diet my son started Growing like a weed, and is now in the 15-25% for his age group on height and weight. And gluten-free he will remain.

Now my youngest son is short for his age but suffers from chronic reflux and Gastroparesis. He is having a EGD with Biopsy Tomorrow. Kinda wondering what it will show. He already had a IGG and IGA done (twice, but I only know the first set of results= IGA 19, IGG 28). But I will be sure to let you all know how that goes...Hope this helps...Steph :)

JsBaby-G Newbie

The earliest I remember symptoms were at the age of 5 or 6. However in the pictures of me at like 3 or 4 show a distended abdomen. I've been sick all my life and only diagnosed at 15. :huh:

  • 8 months later...
Smunkeemom Enthusiast

I don't think that there is a general age my grandfather was diagnosed at 78 and my daughter at like 12mo. I am really glad that they found out about my grandpa though. He had only been diagnosed for like 2 months when my daughter got sick. I think that if we hadn't mentioned that he had it they wouldn't have tested Annika and she would still be skinny and weak and sick. :( Thank God they found out what the deal was! She has gained all her weight back and is healthy again. :)

tarnalberry Community Regular

When I was 22 or so.

Guest Lindam

I've had tummy troubles for as long as I can remember. My first hospitalization was when I was 14. But I was just diagnosed this year with celiac disease and I'm 42.

Linda

darlindeb25 Collaborator
;) i have always had tummy problems, but i think they became worse during my 2nd pregnancy and i was 20 then--i do know i was much worse by the time i was 26 and it wasnt until i was 46 that i found out about celiac disease :blink :rolleyes: --i was diagnosed just as so many of us are with IBS or spastic colon and was told to reduce the stress in my life--just imagine ;) --with a husband who always put himself first and 5 small children, i was to reduce my stress, that was when they put me on xanax for panic attacks--i was diagnosed with panic attacks, anticipatory anxiety, and borderline agoraphobia--xanax 4 x's a day made me incapable of daily anything :blink :huh: , so they told me to only take it if needed for panic--which by the way only helped with a panic attack, not with everyday life--so they prescribed paxil instead--by the time i found out about celiacs i was taking 40mgs of paxil daily and barely getting by--after going gluten-free i weaned myself off of paxil and do not take anything now :D --rarely i do panic, but its only when my tummy is upset and my old insecurities pop up---i can tell while reading this forum that many of us went undiagnosed for years and years and suffered needlessly :(---deb
darlindeb25 Collaborator
;) i have always had tummy problems, but i think they became worse during my 2nd pregnancy and i was 20 then--i do know i was much worse by the time i was 26 and it wasnt until i was 46 that i found out about celiac disease :blink :rolleyes: --i was diagnosed just as so many of us are with IBS or spastic colon and was told to reduce the stress in my life--just imagine ;) --with a husband who always put himself first and 5 small children, i was to reduce my stress, that was when they put me on xanax for panic attacks--i was diagnosed with panic attacks, anticipatory anxiety, and borderline agoraphobia--xanax 4 x's a day made me incapable of daily anything :huh: , so they told me to only take it if needed for panic--which by the way only helped with a panic attack, not with everyday life--so they prescribed paxil instead--by the time i found out about celiacs i was taking 40mgs of paxil daily and barely getting by--after going gluten-free i weaned myself off of paxil and do not take anything now :D --rarely i do panic, but its only when my tummy is upset and my old insecurities pop up---i can tell while reading this forum that many of us went undiagnosed for years and years and suffered needlessly :(---deb
Guest ~wAvE WeT sAnD~

I started showing symptoms a month before my 21st birthday, so I was 21 when I was finally diagnosed. (Hint: my diagnosis month is three months after my birthday.) :P

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,362
    • Most Online (within 30 mins)
      7,748

    NAC
    Newest Member
    NAC
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...