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

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
      128,188
    • Most Online (within 30 mins)
      7,748
    Kellik
    Newest Member
    Kellik
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • JuggaloDad
      My 16yr daughter was recently diagnosed

      By JuggaloDad · Posted

      Thank you Scott, it means a lot especially with the speed you responded.. In life I've learned that you got to be openminded and open to understand and adjust  .Thank you again I hope she will come around to the adjustment as it's not going away and it's for her own comfort and health in the long run....Thanks
    • Scott Adams
      My 16yr daughter was recently diagnosed

      By Scott Adams · Posted

      I’m so sorry to hear about the challenges you and your daughter are facing. A celiac diagnosis, especially during adolescence, can be overwhelming, and it’s understandable that she’s struggling with the lifestyle changes it requires. Coupled with the complexities of self-medication and signs of an eating disorder, this is undoubtedly a difficult time for your family. It’s great that you’re already engaged in therapies—this is a crucial step. For celiac disease, connecting with support groups (like those from the Celiac Disease Foundation) and working with a dietitian specializing in gluten-free diets can help ease the transition. For the emotional and mental health aspects, family therapy or support groups for parents of teens with similar struggles might provide additional tools and comfort. You’re doing the right thing by seeking help and information—stay patient and compassionate with both your daughter and yourself as you navigate this journey together.
    • JuggaloDad
      My 16yr daughter was recently diagnosed

      By JuggaloDad · Posted

      It is only the very start of this journey but it's actually been one of the hardest things we have had to deal with as parents.she started complaining about her stomach and after months and test after test the diagnosis came back as Celiac disease but while this was happening she has been self medicating with THC and also started making showing signs of a eating disorder, we are in therapies of all sorts in relation to these issues and well I'm just reaching out to find any and all information tools and knowledge as at 16 my daughter is fighting the change but it will be with her for a lifetime so I just trying to do all I can do ... If anyone can help with anything like anything mentioned please reach out to me.....thank you all for existing 
    • Wheatwacked
      Testing

      By Wheatwacked · Posted

      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
×
×
  • Create New...