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Bathroom Question (Maybe Tmi)


rami

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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!


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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.


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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.

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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