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

This Is Disgusting.....


Canadian Karen

Recommended Posts

SueC Explorer

You are an inspiration to those of us that know this too is our destiny.....

Please keep us informed of any do's and DONT"S that only come with experience! :D

Hang in there... less that 48 hours to go!!!!

Sue


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



Celiac.com Sponsor (A8-M):



Guest vetnurse

Oh Karen I can relate, imagine how happy I was when I went for my bloods for celiac, I also had to get the stuff for giardia tests etc., the girl looks at me with a straight face, lol, and tells me she needs 4 stool samples one from every time I went, which I thought to myself, Oh no problem I am always going! here is the catch, the stool cannot touch the water, oh I said, how can I arrange this now, she tells me to line the toilet with either saran or aluminum foil :huh: and go on that, I thought oh sure, lol. Picture this you are now half asleep running to your kitchen to pull foil from the draw, to line the toilet, only to sit on the foil (lined it to tight) for the foil to break and the stool, well it hits the water :o O I can relate, took me forever to finish the test! Hang in there ;)

Canadian Karen Community Regular

I can remember getting samples for that too. I resorted to disposable aluminum pie plates that I would hold while I did the deed!!! It worked!

Karen

angel-jd1 Community Regular
Okay, I had my follow-up with my GI specialist down at St. Mike's in Toronto. He is sending me to an immunologist to see if he can figure me out..... He did mention something about maybe an enzyme syndrome (I forgot the name of it) that he said is quite rare, but wanted to look into it further....... He did a few more blood tests. But here is the worst part: He wants to measure the fat content of my bowel movements for 48 hours (normally, it is 72 hours but he said since I go so often, 48 hours will suffice for me.....). I have to basically poop into a paint can (yes, you read correctly, a paint can.....) I went down to the lab in the hospital and they actually give you a paint can to collect all your bowel movements!!! Actually, they gave me two, due to the number of bowel movements I have in the span of one day...... All I have to say is: THIS IS THE MOST VILE THING I HAVE EVER HAD TO DO!!!! It is so unfair to have to put my family through this! I have basically told them that the downstairs bathroom is OFF LIMITS for two days, and Terry and the four kids have to put up with sharing one bathroom for the next two days!!!! I will be sooooo glad when this is over!! Add on top of that the fact that my back is killing me and you can just imagine (sorry for the visual, lol!) me trying to get down onto a paint can on the floor without toppling over!!!! I am having nightmares about falling over and knocking the can over!!!!

Wish me luck that I will get through the next two days without losing my sanity!!!

Hugs,

Karen

I had to collect my poo also, but just one sample. I totally feel your pain. It is the most degrating event ever!!

The lab DID give me a little bucket that attached to the inside of the toilet to collect the stuffs though. You might try asking for one of those.

Funny thing is, after they gave me all of my "equipment" for the sample collection, they stuck it in this hazardous waste plastic bag :P and I had to walk out of their office with it, down the hall, ride in the elevator (with people staring at me) then walk across a huge parking lot!!! THEN had to bring the poo back in that bag the next day doing the trip all over again!! I sure got some wierdo looks. :lol:

What we won't do for a solid diagnosis :D

-Jessica

Canadian Karen Community Regular

Okay, I am getting the hang of this even though it is DISGUSTING!!!

I only wish I had kept the little toddler cushioned potty seat (you know the ones that you put over your own toilet so their little bums won't fall through the big hole??). After my twin boys were trained, I threw it out - now I could sure use it! The bones in my behind are getting sore from sitting right on the rim of the paint can!!!! Sorry for the visual, guys...........

This too shall pass.............

Karen

cmom Contributor

You guys crack me up!! I remember when they were still trying to figure out what was wrong with me. I had to take a stool sample to the hospital lab. She asked me when I "obtained" it and when I told her she said "Oh, we can't use that; it's been too long." Then I said, "Well, I can give you another one right now." She said, "Can you go at will or what?" I said, "sure can!" Needless to say, they still got their specimen! :)

Canadian Karen Community Regular

Way to show 'em Robin!!!!

Hey, some people can burp at will, well, we Celiacs can............ you know........

;)

Karen


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator

Ha ha Robin! On Demand ! :)

cdford Contributor

I had to do it for a five yr old. It was more trouble than holding him still for a barium enema!

jenvan Collaborator

wow Donna--that would be a hard job !! :unsure:

westiepaws Apprentice

No physician should reaquire his/her patient to undergo any process or procedure that he/she has not experienced personally. I mean, hey -- how many of these M.D.s ever pooped into a paint can, much less gave chemo or radiation a whirl, or get regular colonoscopies, etc., themselves?!

westiepaws

Guest BERNESES

Bingo - I'd love to see both my GI's put in Karen's paint can!

Guest Viola

Still ... I think it's easier doing it myself than to try and get a five year old to do it :o You deserve a medal for that one Donna! :D

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. - 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • 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
      @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
      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
      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
      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
×
×
  • 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.