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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,111
    • Most Online (within 30 mins)
      7,748

    DRogo
    Newest Member
    DRogo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wends
      Hi RMJ. I read your post. Sounds like you need a second opinion? Have you been advised by Dietitian or referred to one? There are protocols for treating patients that have ongoing celiac disease antibodies / histology. Particularly as you have nausea and pain. You probably already know about the gluten contamination elimination diet. It may be that you are super sensitive to even the allowed 20parts per million gluten in certified gluten free flours and products? An elimination of all grains for a time may be necessary? Especially oats if you currently include them? It’s worth noting that a minority of Celiacs have oat intolerance and T cell response similar to gluten (particularly carriers of high risk HLADQ2.5), and ongoing celiac damage to the gut can occur with oats. Even certified gluten free oats. If you are already super strict and careful about cross contamination, do you eat cheese or have any cow’s milk in your gluten free diet? It’s often overlooked, even by specialists and Celiac dietitians. But there are case study reports in children. There’s a study in adults showing mucosal reaction to casein in Celiacs, and quoted 50% of Celiacs react to casein similar to gliadin because of molecular mimicry. Then there was this letter to the editor following up a case that states, ”We conclude that given this novel information, pediatric, and possibly adult, celiac disease patients with suspected “refractory” celiac disease and no detectable gluten exposures, should be trialed on a combined CMP-GFD with close monitoring for disease activity resolution prior to consideration of more restrictive diets…” (Jericho H, Capone K, Verma R. Elimination of Cow’s Milk Protein and Gluten from the Diet Induces Gut Healing in “Refractory” Pediatric Celiac Patients. Ann Pediatr. 2021; 4(2): 1082.) CMP-GFD: cow’s milk protein-gluten free diet. Hope you figure it out.  
    • trents
      Welcome to the forum, @BlakeAlex! Is this the GI Reset product you are using?: https://inwellbio.com/wp-content/uploads/2023/08/GI-Reset_Info-Sheet.pdf There is a lot of weird stuff in that you could be reacting to. Personally, I would discontinue it as I doubt it's really doing you any good anyway. Getting to the point where you are truly eating gluten free consistently usually involves a significant learning curve as gluten is hidden in the food supply in many ways by manufacturers. For instance, would you ever expect to find it in soy sauce or Campbell's tomato soup? But it's there and a main ingredient. Getting rid of macro sources of gluten is relatively easy. Just cut out bread, cake and pasta. But avoiding the hidden sources and the cross contamination sources is much harder. I am including this article that might be of help to you as a new celiac in getting off to a good start:    Long-term undiagnosed celiac disease inevitable leads to nutritional deficiencies because of the damage done to the lining of the small bowel where almost all of the nutrition in our food normally is absorbed. We routinely recommend that newly diagnosed celiacs invest in some quality gluten-free vitamin and mineral supplements. And I'm talking about more than a multivitamin. We recommend a high potency B-complex, 5-10,000 IU of D3 daily, Magnesium glycinate, and zinc. I suspect your mouth and throat ulcers are nutritional deficiency related. Costco is a good place to get good quality gluten-free vitamin and mineral supplement products at a reasonable price. Are you on medications? May we ask your relative age?  
    • BlakeAlex
      Hello, I was recently diagnose with Celiac Disease and without realizing, I had every symptom on the list. Now I am moving as fast as I can to a total recovery. I thought I was doing well but I notice my ulcers on my tongue and throat and cough are starting to come back again.  Has anyone experience these symptoms? Also, I am incorporating GI Reset powder for a jump start to recovery.  Thanks in advance, Blake     
    • trents
      No. There is no damage done to the gut lining with NCGS.
    • MagsM
      Hi Trents, Thanks for the feedback. Yes, I do have concerns about NCGS. Would this show up if I did the endoscopy testing?
×
×
  • Create New...