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/when Were You First Diagnosed With Celiac?

revolverblue85

Recommended Posts

revolverblue85 Newbie
revolverblue85
Posted

I was literally just diagnosed this past Friday. After strong abdominal pains about once a month for the past year started occurring, MY WIFE :) made my stubborn butt go to the emergency room. After several hours there, blood tests, and an ultrasound they said I have peptic ulcer disease and I needed to change my diet up badly. They sent me to a Gastro specialist who confirmed it and asked if I'd like to have the endoscopy procedure done just to have documentation and know 100% it was just that. I agreed just in case something else was wrong. I came out of the procedure and my doctor informed me that I had several tiny ulcers that had healed and that they took a biopsy of something that he thought was just a bacteria that shouldn't be a problem to get rid of. A week later I got the call to come in for more blood work due to the fact that my results of the biopsy looked like possible Celiac disease. It was confirmed on Friday and now we are here.

Probably the hardest thing to ever happen to me considering I've given up soda, caffeine, alcohol, I don't eat my vegetables like I should. I am just thankful I went to the doctor that day for my stomach pains because I believe I've had this for years just never diagnosed. i am always fatigued no matter how much I sleep, and I always thought my chronic back and joint pains were from the brick laying.

Just needed to vent, thanks for listening and I know it will get better.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

I was literally just diagnosed this past Friday. After strong abdominal pains about once a month for the past year started occurring, MY WIFE :) made my stubborn butt go to the emergency room. After several hours there, blood tests, and an ultrasound they said I have peptic ulcer disease and I needed to change my diet up badly. They sent me to a Gastro specialist who confirmed it and asked if I'd like to have the endoscopy procedure done just to have documentation and know 100% it was just that. I agreed just in case something else was wrong. I came out of the procedure and my doctor informed me that I had several tiny ulcers that had healed and that they took a biopsy of something that he thought was just a bacteria that shouldn't be a problem to get rid of. A week later I got the call to come in for more blood work due to the fact that my results of the biopsy looked like possible Celiac disease. It was confirmed on Friday and now we are here.

Probably the hardest thing to ever happen to me considering I've given up soda, caffeine, alcohol, I don't eat my vegetables like I should. I am just thankful I went to the doctor that day for my stomach pains because I believe I've had this for years just never diagnosed. i am always fatigued no matter how much I sleep, and I always thought my chronic back and joint pains were from the brick laying.

Just needed to vent, thanks for listening and I know it will get better.

This is the perfect place to vent -- we all have a time or twelve ;)

Read as much as you can, ask questions or simply vent - we get it.

nvsmom Community Regular
nvsmom
Posted

That's great you've found the cause... I hope you have a speedy recovery.

Hang in there through the first couple of months. They are the toughest as many of us needed to learn new ways to eat, and those first two weeks can feel lousy if you hit withdrawl. It's worth it in the end if you stick it out. Good luck!

Adalaide Mentor
Adalaide
Posted

Much like you I had that BLAM! shocker when it wasn't even hinted at by doctors. I was having issues with my gallbladder and my insurance wouldn't cover what they called an elective surgery to have it removed. This led to repeat trips to the ER when the pain was so bad that narcotics wouldn't even touch it. Eventually blood tests showed that I my liver enzymes were out of control, hinting I had a stone blocking my duct and that I had to have emergency surgery. Within a few hours I was sans gallbladder but sure enough I had a stone that they couldn't get out and needed an ERCP that was scheduled for the following morning. A year later I still want to clock the sadist that decided that no matter the circumstances you MUST be laying on your stomach for that procedure. Anywho, a week later (which was actually a year ago today) I got my call saying gratz!!! you have celiac. <_< I was so unexcited then. Looking back, the string of events it took to get to diagnosis and seeing now that I was undiagnosed for 3 decades I can only be thankful for a GI that got in there and knew that my guts looked wrong.

It is true, getting started is rough but yes, hang in there. It gets easier and a year from now while you may not be all sunshine and rainbows, know that there is life out from under that rainy cloud. The best is that I no longer sleep 16-20 hours a day! I feel like a real human being again, which is quite splendiferous. You'll get there, just have patience.

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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,344
    • Most Online (within 30 mins)
      7,748
    Scottweath
    Newest Member
    Scottweath
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.