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

Endoscopy Results

Guest ~wAvE WeT sAnD~

By Guest ~wAvE WeT sAnD~
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Hey gluten-free friends!!!

Here's the update:

My GI's head nurse called this morning and told me my biopsy was negative. Since I tested positive for Gliadin antibodies, I still consider myself a Celiac.

My family had the date of their bloodwork changed so they wouldn't have to drive as far as I did for mine. They went to our family doctor yesterday, and when the nurse took the vials, she said, "I know a guy at our church who can't take communion wafers." Ding ding ding! :o (tell her what she's won, Johnny ) :lol:

This particular nurse and most of the others aren't familiar with the disease--they've never seen celiac disease patients, but the thing is with them and most people I talk to is that they know gluten-free people, but they don't realize that for a lot of them it's more than "can't eat bread and pasta" or "can't take communion wafers". I just pray to God that they'll learn, in and this case, they should, since we've been patients for 13 years. I'm sure he's familiar, but the nurses need some help. Oh well.

I have a thyroid test on 8/13 (Fri.) I'll keep you posted!!

Thank you, and lots of

:wub: ,

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

Celiac.com Sponsor (A8-M):


Alexolua Explorer
Alexolua
Posted

Thanks for the update. Too bad you were negative, since you wanted the "gold stanard" proof, right? Glad you sound in good spirits though. =)

Since I tested positive for Gliadin antibodies, I still consider myself a Celiac.

Even if you didn't have the Gliadin, you've been feeling better, if I remember correctly? So another sign of Celiac.

As for the nurses, if you have the patience.. teach 'em! LOL

Dwight Senne Rookie
Dwight Senne
Posted

Jill,

Loved the "tell her what she's won, Johnny" comment! :D

As for your biopsy, how many samples were taken? From what parts of the small intestine? Who did the pathology? There are hundreds (maybe even thousands) of people running around who have had biopsies botched by either inept gastroenterologists (because they didn't take enough biopsies or took them from the wrong places) or inept pathologists (because they don't know how to properly diagnose celiac from the biopsy slide).

At the very least, you may want to have your slides sent somewhere else for a second opinion. I would recommend the Celiac Center at the University of Maryland.

woots Newbie
woots
Posted

i am told from the professor in england that carried out the biopsi on my daugther that you should still be eating gluten containing food right up to the biopsi. he says that is because your bod will gradually heal and the Villi will grow back and give a negative result, meaning that your blood will say one thing but the biopsi will say another.

dont know whether that helps and hope that everything goes well for you.

mark wootton

England

GEF Explorer
GEF
Posted

Hi Jill!

Glad to hear that you got your results back so quickly! In the celiac arena... having negative results can be a good & a bad thing.... as I'm sure you know. In regards to education about gluten intol / celiac, could you imagine if they just replace those IBS ads with celiac ones?? I want a bumper sticker....

As always, it's a pleasure to read your posts!

Gretchen

burdee Enthusiast
burdee
Posted

Hey Jill: I LOVE your sense of humor. :lol: We all need more of that to get us through those frustrating experiences with the medical profession. <_<

BURDEE

lovegrov Collaborator
lovegrov
Posted

Dr. Fassano (sp?) at the University of Maryland is no longer reading slides unless you are a patient at the center. I think word got out that he would do this and he started getting so many requests he became overwhelmed.

richard

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

Celiac.com Sponsor (A8-M):


Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Hey, everybody!!!

Thanks for all the replies...my humor is a part of who I am, and after the "doctor experience", you have to laugh at some of the antics of the medical profession. It's amazing--many people know what celiac disease is, but like the song, it's strictly "eyes without a face"-so many symptoms, but what the heck is it?

My thyroid test is tomorrow!

Beat the Wheat!!!!,

Dwight Senne Rookie
Dwight Senne
Posted

Good info, Richard. Thanks for the update on that! I'm pretty sure the University of Chicago will check your slides for you. Also, the Univ. of Iowa will do them too - I checked with them once for my mom, and I think it was around $150.

Alexolua Explorer
Alexolua
Posted
Beat the Wheat!!!!,

LOL Jill, I like that.

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Haha thanks. I was originally going to write a book about my college experience, but now I'm going to write one about celiac disease experiences to promote awareness. I think "Beat the Wheat" is a great title :D

Actually, now that I'm thinking of it....I'm adding it to my signature!!!

Alexolua Explorer
Alexolua
Posted

Why not write one about dealing with Celiac as a College student? You can combine it! Or you could write on about celiac disease, then one about the college experience and having celiac disease. Just some ideas.

That would make a nice book title, though could distract some people into thinking gluten is only in wheat, don't ya think? Or maybe not, thinking out loud (well not too loud, since I'm typing). =)

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Good idea!!!! I'll format the title as "Beat the Wheat (barley, rye, oats, and malt)" ;)

Alexolua Explorer
Alexolua
Posted

Ya know.. that actually still sounds good.

And how bout for a college book, you could do, "Celiacs Can Get Drunk Too!"

LOL.. I dunno, being silly. =P

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

AHAHAHAHAHAHAHAHAHA!

The first time I vomited, I was drinking. I wasn't even drunk, it was the malt that killed me. Although 99 Apples is not something youshould drink a lot of when you're petite (I had Smirnoff too--that'll do it).

Alexolua Explorer
Alexolua
Posted

Hmmm.. how bout, "Drinking and Throwing Up: The Celiac Way" ?

LOL.. dun mind. But if you use it, I want credit! =P

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Ahaha! You crack me up!

I'll write that when I sign your copy of my book--that is, when my @$$ gets started on writing it.

Alexolua Explorer
Alexolua
Posted

So do I need to glue you back together since I cracked you'd up? =P

LOL, I know what you mean! I've had this idea for a book, for almost 3 years now.. and ugh, just need to get going! Even it it turns out sucky, better to try. =)

celiac3270 Collaborator
celiac3270
Posted

Yeah......I've always thought (or rather, since diagnosis thought) that it would be really cool to write a book on celiac disease.........I'm not going to try anything for a few years, but it sounds like a cool idea.

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Alexolua--

Bust out the glue!!!!!

:lol:

Alexolua Explorer
Alexolua
Posted
I'm not going to try anything for a few years (writing a book), but it sounds like a cool idea.

celiac3270, I wouldn't be surprised if you were able to do one now.. since you seem so intelligent and hard working on these boards! =)

LOL Jill.. lemme find the glue for ya. =P

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. Scott Adams
      0

      When Gluten-Free Food Is Unavailable: A Child's Struggle Highlights the Hidden Risks for People with Celiac Disease

    2. Churley
      - 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.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    3. 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...
    4. 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...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,347
    • Most Online (within 30 mins)
      7,748
    Carla Mort
    Newest Member
    Carla Mort
    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

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

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • 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 
×
×
  • 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.