Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

How does one cope?

wildwitchnz

By wildwitchnz
in Coping with Celiac Disease

 Share
Go to solution Solved by Scott Adams,

Recommended Posts

wildwitchnz Apprentice
wildwitchnz
Posted

How do y'all cope with the 'gluten poops' ? And the 'gluten farts' 🤭 sorry gross question but I had to ask. I have found that my number 2's have a very distinctive smell compared to normal number 2's, and it also looks different (yes I've looked lol) I don't know if anyone else has done this, but mine seems to have this greasy/oily kind of look to it, and it's pale and can sometimes look almost yellowish in colour, but the worst has got to be the foul smell, like, even I can't stand the smell and it's coming out of me lol and the wind is just as bad, the smell after passing wind(farting) is horrendous and just seems to linger for ages. I find this part of being 'glutenend' really embarrassing and in the beginning, I barely left my house. Now, I'm almost a year diagnosed and getting so much better at choosing the right food, but when those 'mistakes' happen, boy, I feel so sorry for everyone else in my household that has to deal with that smell 😐 

Has anyone found an air freshener or anything that helps to get rid of that smell fast? I'd be very keen to know of anything that would work! 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Were you diagnosed with celiac disease, and if so, how long have you been gluten-free? I ask because greasy floating stools are a common issue with the malabsorption that is cased by the flattened villi. It can take a year or two for your gut to fully heal.

wildwitchnz Apprentice
wildwitchnz
Posted
  • Author

I was only diagnosed in March 2021 so I'm still finding my way thru

  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

There may be ways to speed up gut healing, for example taking supplements like the amino acid glutamine and/or collagen. Just make sure they say "gluten-free" on their labels.

knitty kitty Grand Master
knitty kitty
Posted

My grandmother always said to light a match.  There was frequently a candle burning in her bathroom.

RMJ Mentor
RMJ
Posted

You could try a product like Poo-Pourri.  I haven’t used it but it gets good reviews. You spray in the toilet before use and it is supposed to create a film on the top of the water that traps the odor. It wouldn’t help with wind though.

Marimarston Rookie
Marimarston
Posted
On 11/4/2022 at 7:35 PM, wildwitchnz said:

How do y'all cope with the 'gluten poops' ? And the 'gluten farts' 🤭 sorry gross question but I had to ask. I have found that my number 2's have a very distinctive smell compared to normal number 2's, and it also looks different (yes I've looked lol) I don't know if anyone else has done this, but mine seems to have this greasy/oily kind of look to it, and it's pale and can sometimes look almost yellowish in colour, but the worst has got to be the foul smell, like, even I can't stand the smell and it's coming out of me lol and the wind is just as bad, the smell after passing wind(farting) is horrendous and just seems to linger for ages. I find this part of being 'glutenend' really embarrassing and in the beginning, I barely left my house. Now, I'm almost a year diagnosed and getting so much better at choosing the right food, but when those 'mistakes' happen, boy, I feel so sorry for everyone else in my household that has to deal with that smell 😐 

Has anyone found an air freshener or anything that helps to get rid of that smell fast? I'd be very keen to know of anything that would work! 

Oh dear I’ve been there! Yes, the oily/greasy residue is normal after gluten as is a very distinctive smell, at least it was to me. But this continued for quite a while into my GFD. I think it takes time for your bowels to settle down and heal after years of gluten damage. I used to fly regularly between New York and London, and it was a huge embarrassment on the flights! Eventually the smell gets so bad people can actually identify it’s coming from you from rows away! The most effective thing I found was striking a match in the bathroom after, or lighting a candle (doesn’t have to be fragranced) helps. Overnight, scattering some bicarbonate of soda in your loo can help suppress lingering smells. However, sadly none of these are an option on an aeroplane, so if you figure that one out, let me know! 

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

Celiac.com Sponsor (A8-M):


Rhonda Hildreth Newbie
Rhonda Hildreth
Posted

Try a product called MedChoice - a biological odor eliminator. I have a 2 ounce spray bottle and it is distributed by Owens and Minor, Mechanicsville, VA 23116. Made in USA. Also, there is a product called Medi-aire  by C.R. Bard, Inc. in Covington, GA 30014. Phone 1-800-526-4455.  These products should be available through medical supply stores. 

Ginger38 Rising Star
Ginger38
Posted
On 11/4/2022 at 3:35 PM, wildwitchnz said:

How do y'all cope with the 'gluten poops' ? And the 'gluten farts' 🤭 sorry gross question but I had to ask. I have found that my number 2's have a very distinctive smell compared to normal number 2's, and it also looks different (yes I've looked lol) I don't know if anyone else has done this, but mine seems to have this greasy/oily kind of look to it, and it's pale and can sometimes look almost yellowish in colour, but the worst has got to be the foul smell, like, even I can't stand the smell and it's coming out of me lol and the wind is just as bad, the smell after passing wind(farting) is horrendous and just seems to linger for ages. I find this part of being 'glutenend' really embarrassing and in the beginning, I barely left my house. Now, I'm almost a year diagnosed and getting so much better at choosing the right food, but when those 'mistakes' happen, boy, I feel so sorry for everyone else in my household that has to deal with that smell 😐 

Has anyone found an air freshener or anything that helps to get rid of that smell fast? I'd be very keen to know of anything that would work! 

Man I can totally relate to this!! For this reason when I go certain places , like my significant others house, I eat very little.. if anything. It’s embarrassing for sure and when I have to go I have to go and it’s very loud 😳 I have looked at my stools as well, and if gluten is involved they are just as you described. At one point into my gluten free diet I asked my mom what normal poo looks like bc mine was not normal To me but apparently what I was seeing was actually “normal” unfortunately that was short lived for me, I have really been messing up on my diet and not being careful enough 🤦🏼‍♀️ the smell is very bad…. Bad enough that my daughter calls it gluten poop. There are times she is like mom have you had gluten bc it smells like it 😳😂 I use candles and sprays but idk how much it helps. I tried that poo-pouri stuff once but I wasn’t that impressed for the price and to be honest sometimes I don’t have the extra time to spray before.  Also if I have really bad gas I take gas ex and I’ve done some yoga poses I found online to help relieve the trapped gas

Linda Hannibal Rookie
Linda Hannibal
Posted

I completely relate to this topic and have tried pre and probiotics. I find that bone broth has helped. Your gut is compromised because of Celiac and leaky gut. I developed an intolerance to soy which causes similar symptoms to a gluten exposure. Try the elimination diet and add foods back in and see if dairy or soys could also be the culprit. You could also getting exposure to gluten via cross contamination. My vitamin D is low and I get muscle spasms. Celiac is a pain in my derrière

Good luck

Lisa A. Pickering Newbie
Lisa A. Pickering
Posted

I'd ask your Dr. re: oily stools. Pancreas issues are sometimes related to that. Keep your fiber and fluids up daily.  Good Luck! 

wildwitchnz Apprentice
wildwitchnz
Posted
  • Author
3 hours ago, Linda Hannibal said:

I completely relate to this topic and have tried pre and probiotics. I find that bone broth has helped. Your gut is compromised because of Celiac and leaky gut. I developed an intolerance to soy which causes similar symptoms to a gluten exposure. Try the elimination diet and add foods back in and see if dairy or soys could also be the culprit. You could also getting exposure to gluten via cross contamination. My vitamin D is low and I get muscle spasms. Celiac is a pain in my derrière

Good luck

I am also lactose intolerant, and I  haven't had any dairy since being a small child and my mum found out and put me on soy milk. I try so very hard to eat exclusively on my own and I use a separate shelf/utensils/toaster/bread board etc it's so very frustrating 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,911
    • Most Online (within 30 mins)
      7,748
    Deborah anne
    Newest Member
    Deborah anne
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jack Common
      What should I do with these test results?

      By Jack Common · Posted

      My old results (almost a year ago) are: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months and after I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   I didn't have any symptoms now except tiredness but I think it's just work. I'm not IgA deficient as you can see so I don't need to do this Deamidated gliadin peptide IgG test. But I do because it's sometimes not in the normal range. What do you think this time? I think I don't have celiac disease. But this test... 
    • Wheatwacked
      Anyone else with very high HDL?

      By Wheatwacked · Posted

      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      Anyone else with very high HDL?

      By plumbago · Posted

      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Anyone else with very high HDL?

      By trents · Posted

      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
    • knitty kitty
      Anyone else with very high HDL?

      By knitty kitty · Posted

      Wow, @plumbago, Curiouser, and curioser... Have you been fasting?  Apparently HDL levels increase after fasting... https://ajcn.nutrition.org/article/S0002-9165(23)31185-7/abstract   I must say it, try taking some Thiamine.  Thiamine helps regulate lipoproteins... Thiamine helped lower HDL in this study whether they had diabetes or not. https://pmc.ncbi.nlm.nih.gov/articles/PMC3921172/#:~:text=Serum thiamine and its derivatives,supplementation (p %3D 0.009).
×
×
  • Create New...