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

Positive


tehjrow

Recommended Posts

tehjrow Rookie

I got my upper endoscopy results yesterday, I have Celiac disease.

My story:

I'm 28 years old and all my life I've had a sickness that is both hard to explain and embarrassing. The earliest memory I have of my life was at my 5th birthday party, cowering in the bathroom while my friends waited for me to come out. At about 18 years old I discovered IBS and the symptoms fit, I knew that's what I had. Learning that IBS not only had no cure, but no one knew its actual cause was devastating. How can I live the rest of my life like this? Now on to the embarrassing part. When people asked me


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

I know this sounds strange when you just got a diagnosis for a lifelong disease, but it sounds like congratulations are in order. I hope going gluten free resolves all your problems and sets your life back to normal.

By the way, doctors don't tell folks this, but a lot of newly diagnosed celiacs are also sensitive to milk (lactose and/or casein). We usually recommend you watch for reactions to dairy at first. Lots of people do better both gluten and casein free until things settle down and your gut heals. It took me about nine months to be able to tolerate casein again.

Good luck, and I hope all your IBS resolves. Mine did. :)

brendab Contributor

I had to respond simply because I also would have "attacks" when I was in a stressful situation and I can count on having one with anything new or doctors appts, etc. I have had several occassions of being in public when it hits and leaving shopping carts in the middle of the store to high-tail it to the toilet not knowing if I was going to make it or not. I thought this was normal! Up until this week, I honestly did!

I want to say that I am happy for you that you finally have the correct diagnosis and that going gluten-free will help you!

precious831 Contributor

I got my upper endoscopy results yesterday, I have Celiac disease.

My story:

I'm 28 years old and all my life I've had a sickness that is both hard to explain and embarrassing. The earliest memory I have of my life was at my 5th birthday party, cowering in the bathroom while my friends waited for me to come out. At about 18 years old I discovered IBS and the symptoms fit, I knew that's what I had. Learning that IBS not only had no cure, but no one knew its actual cause was devastating. How can I live the rest of my life like this? Now on to the embarrassing part. When people asked me

kayo Explorer

Congratulations are definitely in order. Isn't the validation awesome?

Skylark brings up a good point about dairy and I would add soy to that as well. Even some of the gluten-free grains (quinoa, buckwheat, etc.) can be hard to digest in the beginning as you're healing.

The experience you describe:

I
Looking for answers Contributor

I guess I'll say congrats too. Getting an official diagnosis is rare. Your life will certaintly get better from here and you'll be spared years of more agony. BTW, give your wife a hug from all of us for her support. :rolleyes: She sounds like a blessing to have in your corner. I love that she's already jumped in and made you gluten-free bread.

tehjrow Rookie

Thank you for your replies and support. I am going to stay away from dairy ( i have for a long time already ). Over the weekend I went to Williamson Brothers BBQ. They didn't have a gluten free menu so I took a chance. Guess I learned to not take a chance anymore. Their BBQ beans have gluten. No more chances for me, time to take control.


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



Celiac.com Sponsor (A8-M):



frieze Community Regular

do you write for a living? I could "feel" the pain, frustation, sadness....almost painfully so.

tehjrow Rookie

do you write for a living? I could "feel" the pain, frustation, sadness....almost painfully so.

Thanks!

I don't write, I think that's the longest thing i've ever written haha. It's easy to write a few pages with 28 years of stuff to write about.

tehjrow Rookie

YaY I found a gluten free store a few miles away from my house!

  • 4 weeks later...
tehjrow Rookie

Well it's been a little over a month and I feel great. At first it was rough, the first 2 weeks I think my body didn't know what was happening, but now I feel better, better than I've ever felt in my life.

I also find that things affect me differently. It only takes about 3 ciders to get me drunk. Also pills affect me differently. My Dr had given me valium for my fear of flying. I used to take 3 and not really feel much. Now I take 1 and am out of it the entire flight.

On the downside, now I'm adding divorce to my list. Ah life, how you hate me so.

Jestgar Rising Star

On the downside, now I'm adding divorce to my list. Ah life, how you hate me so.

I have found that a year or so after the event has passed, divorce turns out to be a very good thing.

ravenwoodglass Mentor

Well it's been a little over a month and I feel great. At first it was rough, the first 2 weeks I think my body didn't know what was happening, but now I feel better, better than I've ever felt in my life.

I also find that things affect me differently. It only takes about 3 ciders to get me drunk. Also pills affect me differently. My Dr had given me valium for my fear of flying. I used to take 3 and not really feel much. Now I take 1 and am out of it the entire flight.

On the downside, now I'm adding divorce to my list. Ah life, how you hate me so.

Glad your feeling better. Once your body starts absorbing things properly it is not unusual to have to adjust doses of your meds.

I'm sorry about the divorce issue. I just went through that myself. I did find once all was said and done and the final papers were in my hands that it was like a huge rock had been lifted off me. You'll get through it.

bincongo Contributor

Well it's been a little over a month and I feel great. At first it was rough, the first 2 weeks I think my body didn't know what was happening, but now I feel better, better than I've ever felt in my life.

I also find that things affect me differently. It only takes about 3 ciders to get me drunk. Also pills affect me differently. My Dr had given me valium for my fear of flying. I used to take 3 and not really feel much. Now I take 1 and am out of it the entire flight.

On the downside, now I'm adding divorce to my list. Ah life, how you hate me so.

Divorce isn't always the answer. Maybe you or her will like the new you which usually includes a more possitive outlook on life. So many of us can relate to your story, not always quite as bad symptoms. I was afraid of flying because they don't let you go to the bathroom anytime you want too. Not sure if that was your reason but it can be "real" for a lot of us.

Skylark Collaborator

Well it's been a little over a month and I feel great. At first it was rough, the first 2 weeks I think my body didn't know what was happening, but now I feel better, better than I've ever felt in my life.

I also find that things affect me differently. It only takes about 3 ciders to get me drunk. Also pills affect me differently. My Dr had given me valium for my fear of flying. I used to take 3 and not really feel much. Now I take 1 and am out of it the entire flight.

On the downside, now I'm adding divorce to my list. Ah life, how you hate me so.

I'm so glad you're feeling better. Interesting what happens when you actually absorb alcohol and drugs, isn't it? You must have had a lot of damage.

Sorry about the divorce. Not all marriages weather the dramatic recovery of health and emotional state after a celiac diagnosis. I had a broken engagement within three months of getting really well. The guy I was engaged to was a caregiver, and suddenly he had nothing to look after.

  • 1 year later...
tehjrow Rookie

Well, it's been almost a year and a half since I wrote that. Here are some updates:

I... Feel... Amazing...

I used to lay in bed when I was sick and wonder what normal people felt like. Wonder how it felt to not be afraid of living. I'm now one of those normal people I used to dream about. I did end up getting a divorce, but it was for the best. Had a rough few months there, but i'm a COMPLETELY different person now.

Since going gluten free I lost 75lbs, feel amazing and can eat dairy again! I've done some traveling and even enrolled in college! Things I could never do before. I'm also becoming a some what decent cook. It's so odd going from hating food to absolutely loving it. I LOVE to cook and eat, I almost feel a "high" after I eat now.

Anyway, if I have one piece of advice for someone who's not sure what's wrong with them.... GET TESTED! It's hard, I know, but you can be one of those normal people you dream about too.

Roda Rising Star

Well, it's been almost a year and a half since I wrote that. Here are some updates:

I... Feel... Amazing...

I used to lay in bed when I was sick and wonder what normal people felt like. Wonder how it felt to not be afraid of living. I'm now one of those normal people I used to dream about. I did end up getting a divorce, but it was for the best. Had a rough few months there, but i'm a COMPLETELY different person now.

Since going gluten free I lost 75lbs, feel amazing and can eat dairy again! I've done some traveling and even enrolled in college! Things I could never do before. I'm also becoming a some what decent cook. It's so odd going from hating food to absolutely loving it. I LOVE to cook and eat, I almost feel a "high" after I eat now.

Anyway, if I have one piece of advice for someone who's not sure what's wrong with them.... GET TESTED! It's hard, I know, but you can be one of those normal people you dream about too.

AWW, what a great update. I'm so glad you are happy and healthy now!! :)

Archived

This topic is now archived and is closed to further replies.

  • 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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    2. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    3. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

    5. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,463
    • Most Online (within 30 mins)
      7,748

    The Yellow Rose
    Newest Member
    The Yellow Rose
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
    • knitty kitty
      What exactly are you taking from doterra? 
×
×
  • 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.