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

  • 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. Mmoc
      - Mmoc replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Blood tests low iGA 4 years later digestive issues

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to...
    3. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

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

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    4. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

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

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    5. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748
    LizzieE
    Newest Member
    LizzieE
    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

    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
×
×
  • 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.