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

Hopeful New Guy Here


aluft

Recommended Posts

aluft Newbie

Hi all,

I just got out of the hospital yesterday after a colonoscopy mishap and the woman discharging me told me about this disease. She is 62, very Irish, and was just diagnosed 2 years ago with it and as i was talking to her, she just kinda looked at me like I was telling her story. I'm 52 and have had issues for too many years to even remember. After a lot of discussion and Q&A, she said i had classic symptoms.

My father spent years rubbing his stomach complaining of belly aches and how the doctors could never find anything wrong with him. I've had horrible visions over the last bunch of years remembering that because i've been doing the exact same thing. I've dreaded having to live a life of absolute misery.

My younger brother had a bowel resection because of diverticulitis when he was only 17.

Over the last 5 years I've been diagnosed with GERD, IBS, diverticulitis and Barrette's. My last 2 endoscopes have found polyps and I've been taking protonix twice a day to try to control the acid and thats not including all the chewable antiacids and alkaseltzer in between. Diarreha has become the norm for i couldn't tell you how many years.

I just had a colonoscopy and they found 2 polys and unfortunately, one of them was biopsied and 6 days later began to hemmorage. I just got out of a 6 day stay at the hospital after they spent 3 days trying to stop the bleeding.

However, none of these tests did a darn thing for the intensity of pain I've been experiencing over the last year in my abdomen. It's so bad now I can't eat and I just got back from my PCP with a script for hyoscyamin to alleviate some of the pain so I can eat.

I never heard of Celiac Disease until this woman told me about it yesterday and how since she's been on a gluten free diet for the last 2 years it's changed her life like night versus day.

I told my doctor about it and just went for the blood test for it today and I am also going to my GI doctor Wednesday and discuss a biopsy with him.

With polyps removed from my esophagas last year and getting the results of precancerious and major polyps in my colon today, I felt certain the intense pain in my guts was cancer eating me alive and I just broke down.

I have a glimmer of hope after talking to my doctor today that, according to him, most polyps are precancerious and I shouldn't jump to conclusions and give the Celiac tests a run for their money.

I think you all can understand my apprehension that after years of suffering, I surely thought I was doomed.

Thank God for the nurse that signed me out of the hospital and her encouragement. I feel like I have a chance. She printed out all this literature and information on Celiac and turned me on to this forum.

I'm sure noone wants any disease but if I have a choice between the lesser of evils, celiac or cancer....well...you know which way I want to go...and to imagine a life without all the reflux and burning and pain..

I'm not sure if this woman is active on this forum but if you are.."THANK YOU" for some hope.

Al


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



Celiac.com Sponsor (A8-M):



Cinnamon Apprentice

Oh my gosh, just try the diet. Don't even wait for the test results. Better health is waiting for you!!

happygirl Collaborator

Just wanted to welcome you to the board! I certainly hope that you find some answers.

Don't go gluten free until you have completed any testing that may occur. Even if you receive negative results, some still try the diet and see improvement.

The blood tests for Celiac are:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Best of luck!

mftnchn Explorer

Since it sounds like you are able to get the tests right away, I disagree with the previous poster. Once you start the diet, you cannot do any tests for celiac.

But as soon as you finish the tests---yes! Start going gluten-free, as this could very well be the answer you are looking for.

This forum is a wonderful source of information to help you make the adjustment. I'd start reading here so that you'll be prepared to make the adjustment. It will take awhile so just give yourself some time and be patient.

Please keep us posted!

larry mac Enthusiast

Hey Al,

You know it's never good when a post starts out with "I just got out of the hospital yesterday after a colonoscopy mishap"! :o

Seriously though, I hope it does turn out you have Celiac disease. When my doctor informed me of my diagnosis, he told me "of all the diseases I have to tell people they have, this one is the best. There's no operation or medicine needed. All you have to do is go on a gluten-free diet and you'll feel better."

And he was right!

So good luck. Don't go on the diet untill you are diagnosed.

best regards, lm

loco-ladi Contributor

Since you had the blood test already if I recall correctly you now have to make a choice...

#1) wait for the results then wait for the biopsy to have a confirmed diagnosis

#2) wait for the results screw the biopsy and start the diet and see how it goes

I couldn't talk my doctor even into the test... all he wanted to do was shovel acid reflux pills into me.... which by the way didnt help. The gluten-free diet did.

You need to decide from what you have read and seen and felt and done if you need a doctor to tell you this is your problem or not.

No matter what while you wait learn as much as you can because this is your body and your health and nobody will pay as much attention to it as YOU will. It matters so pay attention and do your research you might be amazed what you learn along the way.

kenlove Rising Star

I was 53 when they first figured it out in me. Blood tests were iffy and I kept having to talk the doc into doing more. Finally I demanded the other scope and sure enough, almost no vili left in the small intestine. Fast forward two years and I've seldom felt better. Stopped taking all the other medications too but just started to take some gluten free vitamins a few weeks ago which is a big energy burst. I've also had the colonoscopy and polups 6 years ago, given all the assorted meds and so on.

The only time i need tums or stonger is if I'm stupid and eat something spicey after 9 at night!

I also believe that being gluten free is good for you even if you dont have celiac. Someone on the forum a few weeks ago

told me that all the gluten a body needs is in 1/24 of a slice of bread. Try to get the tests and go gluten-free s soon as you can. You'll feel a world of difference in no time!

Ken

Hi all,

I just got out of the hospital yesterday after a colonoscopy mishap and the woman discharging me told me about this disease. She is 62, very Irish, and was just diagnosed 2 years ago with it and as i was talking to her, she just kinda looked at me like I was telling her story. I'm 52 and have had issues for too many years to even remember. After a lot of discussion and Q&A, she said i had classic symptoms.

My father spent years rubbing his stomach complaining of belly aches and how the doctors could never find anything wrong with him. I've had horrible visions over the last bunch of years remembering that because i've been doing the exact same thing. I've dreaded having to live a life of absolute misery.

My younger brother had a bowel resection because of diverticulitis when he was only 17.

Over the last 5 years I've been diagnosed with GERD, IBS, diverticulitis and Barrette's. My last 2 endoscopes have found polyps and I've been taking protonix twice a day to try to control the acid and thats not including all the chewable antiacids and alkaseltzer in between. Diarreha has become the norm for i couldn't tell you how many years.

I just had a colonoscopy and they found 2 polys and unfortunately, one of them was biopsied and 6 days later began to hemmorage. I just got out of a 6 day stay at the hospital after they spent 3 days trying to stop the bleeding.

However, none of these tests did a darn thing for the intensity of pain I've been experiencing over the last year in my abdomen. It's so bad now I can't eat and I just got back from my PCP with a script for hyoscyamin to alleviate some of the pain so I can eat.

I never heard of Celiac Disease until this woman told me about it yesterday and how since she's been on a gluten free diet for the last 2 years it's changed her life like night versus day.

I told my doctor about it and just went for the blood test for it today and I am also going to my GI doctor Wednesday and discuss a biopsy with him.

With polyps removed from my esophagas last year and getting the results of precancerious and major polyps in my colon today, I felt certain the intense pain in my guts was cancer eating me alive and I just broke down.

I have a glimmer of hope after talking to my doctor today that, according to him, most polyps are precancerious and I shouldn't jump to conclusions and give the Celiac tests a run for their money.

I think you all can understand my apprehension that after years of suffering, I surely thought I was doomed.

Thank God for the nurse that signed me out of the hospital and her encouragement. I feel like I have a chance. She printed out all this literature and information on Celiac and turned me on to this forum.

I'm sure noone wants any disease but if I have a choice between the lesser of evils, celiac or cancer....well...you know which way I want to go...and to imagine a life without all the reflux and burning and pain..

I'm not sure if this woman is active on this forum but if you are.."THANK YOU" for some hope.

Al


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



Celiac.com Sponsor (A8-M):



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. - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

    2. - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

      Supplements for those Diagnosed with Celiac Disease

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

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,349
    • Most Online (within 30 mins)
      7,748

    Sarah S
    Newest Member
    Sarah S
    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

    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      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
      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
      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 🤗
×
×
  • 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.