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
SueC
Posted

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
Guest vetnurse
Posted

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
Canadian Karen
Posted
  • Author

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
angel-jd1
Posted
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
Canadian Karen
Posted
  • Author

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
cmom
Posted

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
Canadian Karen
Posted
  • Author

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
jenvan
Posted

Ha ha Robin! On Demand ! :)

cdford Contributor
cdford
Posted

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

jenvan Collaborator
jenvan
Posted

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

westiepaws Apprentice
westiepaws
Posted

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
Guest BERNESES
Posted

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

Guest Viola
Guest Viola
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      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
      High DGP-A with normal IGA

      By rei.b · Posted

      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.
×
×
  • 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.