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. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

    3. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

    4. - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

    5. - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748

    4Nic8ion
    Newest Member
    4Nic8ion
    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

    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.