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

How Long Have You Been Diagnosed?

Noglutenformethanks

Recommended Posts

Noglutenformethanks Newbie
Noglutenformethanks
Posted

Hey everyone,

I am 23 and I have been diagnosed since I was 4...MUCH longer than most people have ever even heard about Celiac disease. I find a lot of times I have knows about the disease longer than my doctors have. I feel there is still soo much learning that needs to be done about Celiac disease, but I am just glad it is finally gaining more awareness. You cant imagine what it was like as a kid in 1990s...there was NO gluten free food except one bread company, Ener G. Anyways I am just glad we have made the progress we have, as a kid no one knew what it was and I just did the best I could. A lot of times I still just ate whatever I wanted. I just hate that there is still so much they dont understand about the disease. Why is it that people can test negative for the disease, and yet if they stop eating it they feel 100% better. Why do some people get affected by it more than others, What causes it to go dorment. Hope we figure it out soon, but I am just soo pleased with the progress I can actually tell someone I have celiac disease and that i cant eat gluten now and people actually know what I am talking about. AND BETTY CROCKER and Bisquick are on board I LOVE IT. I am soo happy that my kids will be able to have more options than I did. So to all of you that have just found out in the past couple years I am glad you will finally start feeling better. But just remember it is much better now than it use to be. :)

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

Celiac.com Sponsor (A8-M):


Odysseus Newbie
Odysseus
Posted

I was diagnosed over 3 weeks ago. By myself. I am 40 and my doctors think I'm crazy. I didnt go looking to figure out what was wrong with me I just stumbled upon this no gluten diet from reserarching info for a friend that has cancer. Yeah, I can't imagine what it would be like to know you have celiac disease and there is pretty much no info or companies making things to eat.

srall Contributor
srall
Posted

I was also self-diagnosed. I'd been sick for two years, and honestly having stomach issues for many years, and I did a diet detox. My girlfriend suggested I try eliminating gluten and dairy for the month as well because she'd detected a dairy intolerance when she did her detox. I'm so glad I listened. Everything turned around within a few weeks. By the time I got to the doctor I had been off gluten for 8 weeks. She told me to do a celiac test I'd have to load up on gluten for 8 weeks. Well, I was in her office in the first place because I re-introduced (by accident) gluten to my diet and became very very very sick. So I thought if one creamy soup could make me this sick, no way am I eating gluten for two months. I'll be dead. Having so many gluten free products certainly helped the transition but now I find that I'm only eating whole foods anyway. My daughter however does rely on Udi's bread and Lara bars. (We diagnosed her too...with some help from her pedi).

Ripcord Newbie
Ripcord
Posted

I was diagnosed in 1977 when I was 16. I'm still not over it.

GuyC Newbie
GuyC
Posted

I was diagnosed 6 months ago. I'm making progress...about 80% of the way there.

Gfreeatx Apprentice
Gfreeatx
Posted

August 2010 for me! Coping much better with the changes and feeling alot better. I had no gastro issues really, but had been diagnosed with a neurological condition that effected my heart six years ago. Was completely shocked to find out all of my symptoms were really triggered by undiagnosed Celiac Disease.

Mahee Newbie
Mahee
Posted

I was officially diagnosed in March of this year, but had been told around X-mas that I probably had it. I feel some differences since going gluten-free, but I know that I have a long way to go.

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

Celiac.com Sponsor (A8-M):


jenngolightly Contributor
jenngolightly
Posted

I was diagnosed with Celiac 3.5 years ago. However, I never felt completely well even on a gluten-free diet, so I went on an elimination diet and last year I found out I had a tree-nut allergy and corn-intolerance... now I feel really great.

cahill Collaborator
cahill
Posted

I can remember having problems as early as 12 years old.

I remember when I was 17, the weekend before I got married, I had a rash on my arms,a rash that I now know was DH.

I diagnosed my self in Oct of 2009,

I was just "officially " diagnosed by my GI doc 10 days ago on April 18th.

I will have my 55 birthday this fall.

sb2178 Enthusiast
sb2178
Posted

May/June 2010, with testing starting in March 2010. Clear symptoms appeared Jan/Feb of 2010 but other issues had been very mildly present.

Diagnosed, medically, but sort of fuzzily (i.e. we think... oh, wait, maybe not? but..yes, okay... let's just call it non-celiac gluten sensitivity before you end up underweight). Genetic testing later revealed DQ8 (hetero).

jolie.fleur.peu Newbie
jolie.fleur.peu
Posted

I was diagnosed in 1997, aged two

cahill Collaborator
cahill
Posted

I am in the US, I wonder if in some countrys there is more of an awareness of celiacs disease then the US ,, because , IMHO, our doctors are not to up on celiacs disease at all :ph34r:

c-topher sean Newbie
c-topher sean
Posted

noglutenforme,

i was diagnosed by a man at UNC Chapel Hill Hospital in North Carolina which everyone i know, knows the college because of the tar hills basketball and football... I know it because a man by the name of Doctor Ulshin finally gave me a chance at life. i was diagnosed when i was 18 months old by the doctor and am now 23. he was the only one in the state at the time who would go through the long haul to prove to my parents what was wrong with me, and also that their new baby boy would make it out alive. hospitals from Hope Mills, NC Fayetteville, NC and Fort Brag(home of the 82nd airborne) would not admit me due to how young i was and how very sick i was. no one in the hospitals around my home town did not think i would make it, couldnt prove what was wrong with me so in turn dis-aloud my mother and father to seek treatment and help for me after 12 months of age. but this man at UNC Hospital was the only one who was whiling to help me and one of the only ones understanding at the time in my area of Celiac Sprue...in 1988 no less... everyday im able to thank the doctor who diagnosed me by staying Gluten-Free in every aspect of my life. i owe him my life and i dont even think he knows it. and everyday that goes by and i stay completely gluten free is my thanks to him for saving my life.

kareng Grand Master
kareng
Posted

i was diagnosed by a man at UNC Chapel Hill Hospital in North Carolina which everyone i know, knows the college because of the tar hills basketball and football... I know it because a man by the name of Doctor Ulshin finally gave me a chance at life. i was diagnosed when i was 18 months old by the doctor and am now 23. he was the only one in the state at the time who would go through the long haul to prove to my parents what was wrong with me, and also that their new baby boy would make it out alive. hospitals from Hope Mills, NC Fayetteville, NC and Fort Brag(home of the 82nd airborne) would not admit me due to how young i was and how very sick i was. no one in the hospitals around my home town did not think i would make it, couldnt prove what was wrong with me so in turn dis-aloud my mother and father to seek treatment and help for me after 12 months of age. but this man at UNC Hospital was the only one who was whiling to help me and one of the only ones understanding at the time in my area of Celiac Sprue...in 1988 no less... everyday im able to thank the doctor who diagnosed me by staying Gluten-Free in every aspect of my life. i owe him my life and i dont even think he knows it. and everyday that goes by and i stay completely gluten free is my thanks to him for saving my life.

You could use the Internet to see if he is still a doctor practicing somewhere. Then send him a note. He would really like to hear from you. Tell him how you are doing.

smc Rookie
smc
Posted

I was diagnosed almost 2 years ago. I am 45. I started with bladder issues {mild I.C. flairups} about 6 years ago . I have had migraines on and off throughout the years but started with severe bloating and stomach pain 2 years prior to diagnosis. My doctor brushed off the symptoms as GERD and kept throwing various antacids at me which made the symptoms worse. Finally after a switch in doctors I was sent to a wonderful Gastro who tests all of his patients for celiac. Biopsy and bloodwork confirmed it. The ironic thing is that I found out my original doctor's father had celiac yet he never connected the symptoms?! At least if we have to have this it is a good time with all the great gluten free products out there and the growing awareness. Has anyone eles undergone abdominal cat scans and ultrasounds like me prior to diagnosis?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.