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tehjrow

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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


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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.


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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!! :)

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    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
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