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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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

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

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact 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.