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

Bathroom Question (Maybe Tmi)


rami

Recommended Posts

rami Apprentice

So my 8.5 year old son has been gluten free after his celiac diagnosis for approximately 4 months. His most noticeable symptom is short stature. Since placing him on the gluten free diet my husband and I have been obsessive about his poop (apparently we need to get a life) and while he usually only poops once a day as opposed to the 4-5 times he used to go before the diet most of the time his poop still floats. Does this mean he is still not absorbing fat, vitamins, etc. and that his intestines are still damaged? We have a follow-up in two months, but I am now concerned that his levels will not have dropped and I will be devastated! This may be TMI, but both my husband and I had a complete celiac panel which were both negative and he said his poop floats most of the time as well, mine never does! Thanks for humoring me with my obsessive and gross questions!


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

When poo floats it means there is too much fat in your diet (if i remembered that right). But! it is good that he's not going the 4-5 times a day. Once a day is completely normal :)

GFreeMO Proficient

MIne floats after I have been glutened for a little while. I get pain d then c then mucus mucus mucus then they float.

Glad to hear that your little man is doing well otherwise. :)

Cara in Boston Enthusiast

Can't comment on the poop issue (no experience there) but just wanted to reassure you. My son's numbers were only slightly lower when he was re-tested after being on the diet for 6 months. This completely freaked me out since my number changed to normal within weeks. The doctor assured me that it was fine and that some people just take longer. It was clear the diet was helping him, even though the numbers didn't show much improvement. At his one year tests, everything came back normal. It just went a little slower than I expected.

Keep up the good work.

Cara

ButterflyChaser Enthusiast

The doctor assured me that it was fine and that some people just take longer. It was clear the diet was helping him, even though the numbers didn't show much improvement.

This is reassuring because I've been gluten-free for almost three months and still have a 4-5 times average. Granted, a great improvement over the 8-10 usual. Rami, several doctors have told me that up to 3 is normal for some people, so it may be that healing is closer than it seems?

mamaupupup Contributor

I see Dr. Harmon, GI/Celiac researcher and Nancee Jaffe, Registered Dietician at UCLA's Celiac Center. Poop shouldn't float. It floats due to malabsorption of fats. It is important to absorb fats. As the gut heals, usually fat malabsorption subsides and poop will start sinking :).

(One of my twin's poops floated. We are at 9 months gluten free and her poop now sinks. Other than going gluten-free, we didn't do anything--she just healed on her own.)

I have Celiac and my poop floats. I have been advised to take an ADEK to help with fat absorption. A REALLY good dietician will be helpful.

In the meantime, please tell your husband I never tested positive on my TTG but had a positive Celiac biopsy (and did a colonoscopy at the same time with a whopper: they removed a Sessile Serated Adenoma...probably saved my life). There is likely some reason his poop is floating. A great GI will dig deeper, so to speak.

AGH2010 Apprentice

Do you mind me asking which doctor you take your children to? I've tried 3 pediatric GI's in the LA area and haven't found anyone who seems particularly knowledgable about celiac. As a result I've been taking my daughter to see a pediatric celiac expert in San Diego but would obviously love to find someone closer.

As to the original post, I'm constantly worrying about my child's poop too. For awhile her poop was very pale and I had read that it was a bad sign but her GI always responds that color doesn't matter. Not sure how much I buy it.

I see Dr. Harmon, GI/Celiac researcher and Nancee Jaffe, Registered Dietician at UCLA's Celiac Center. Poop shouldn't float. It floats due to malabsorption of fats. It is important to absorb fats. As the gut heals, usually fat malabsorption subsides and poop will start sinking :).

(One of my twin's poops floated. We are at 9 months gluten free and her poop now sinks. Other than going gluten-free, we didn't do anything--she just healed on her own.)

I have Celiac and my poop floats. I have been advised to take an ADEK to help with fat absorption. A REALLY good dietician will be helpful.

In the meantime, please tell your husband I never tested positive on my TTG but had a positive Celiac biopsy (and did a colonoscopy at the same time with a whopper: they removed a Sessile Serated Adenoma...probably saved my life). There is likely some reason his poop is floating. A great GI will dig deeper, so to speak.


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

I see Dr. Harmon, GI/Celiac researcher and Nancee Jaffe, Registered Dietician at UCLA's Celiac Center. Poop shouldn't float. It floats due to malabsorption of fats. It is important to absorb fats. As the gut heals, usually fat malabsorption subsides and poop will start sinking :).

(One of my twin's poops floated. We are at 9 months gluten free and her poop now sinks. Other than going gluten-free, we didn't do anything--she just healed on her own.)

I have Celiac and my poop floats. I have been advised to take an ADEK to help with fat absorption. A REALLY good dietician will be helpful.

In the meantime, please tell your husband I never tested positive on my TTG but had a positive Celiac biopsy (and did a colonoscopy at the same time with a whopper: they removed a Sessile Serated Adenoma...probably saved my life). There is likely some reason his poop is floating. A great GI will dig deeper, so to speak.

Oh wow, i didn't know that. I used to have this issue for years. I only get it now if i eat something that is too fatty. Good sign then?

mamaupupup Contributor

:) @ shadowicewolf--probably! Maybe it's even good that your body knows how much too much fat is! We have an extremely low fat diet in our house b/c of all the heart disease in the family (both sides), so I know I have some gut work/healing still to do...it's all a process isn't it?

Also, I finally remembered in the middle of the night about the Bristol Stool Scale. Google it and you'll see the consistency our poops are supposed to be...

We homeschool (which means I get to randomly teach the kids what I think is relevant in addition to the three R's...) so I did a whole unit on "What our poop should look like and why." Hysterical and a life skill!!! Enjoy!

ButterflyChaser Enthusiast

I have just realized that Italians say "X floats like a poop" - X usually being a disagreeable person who always gets away with it. Like, of *course* poop floats.

Do you think that this saying is indicative of the incidence of celiac disease in the country? :lol:

mamaupupup Contributor

I didn't answer the kids GI question very well...sorry!

Here are my thoughts on peds/Celiac in the greater LA region:

- San Diego is supposed to be very very good, but I haven't been there

- Dr. Pietzak at Children's Hospital LA is excellent but she's there only 2x a month and it is incredibly difficult to get in

- Dr. Collins Open Original Shared Link is also very good (and has a strong relationship with Dr. Pietzak). We've seen her when Dr. Pietzak has been unavailable.

Hope that helps!

Bubba's Mom Enthusiast

The hormone(CCK) that tells the gallbladder to squeeze bile and the pancreas to release digestive enzymes comes from the villi in the small intestine. If the villi are damaged, he may not be making the hormone..or the signal may not be sent? Without the CCK signal the body has a hard time digesting all foods, but especially fats. This should improve as your son heals. If it doesn't, digestive enzymes and/or pacreatic enzymes can be taken.

I'd give it a bit more time. We each heal in our own time, and according to how much damage we had at DX. Your son's DX is still fairly recent.

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    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

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.