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How Long Have You Been Diagnosed?


Noglutenformethanks

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Noglutenformethanks Newbie

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

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

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

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

GuyC Newbie

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

Gfreeatx Apprentice

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

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

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

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

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

I was diagnosed in 1997, aged two

cahill Collaborator

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

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

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

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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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