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How Long Have You Been Diagnosed?

Noglutenformethanks

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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. :)

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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.

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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?

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    • Mari
      My only proof

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      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
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      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
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