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 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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    3. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,307
    • Most Online (within 30 mins)
      7,748

    Hcon74
    Newest Member
    Hcon74
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.