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Poop ?


JacobsMom

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JacobsMom Contributor

I think my life revolves around POOP..LOL We have been to the gastro 2 times and both times Jacob's bloodwork has come back great the Gastro says...Says keep up the diet things look great...My ?? is thou if his levels are down then why is his diapers still a mess sometimes...I mean there are days where they are nicely formed and look normal but then the next day it is a mess again...Could that be he is getting Gluten that day?? We are scheduled to go back to the Gastro on the 13th and I am going to ask...

We are trying to potty train him and it is hard b/c I am scared to put big boy underwear on him b/c you know that would be horrible!!! I just wish it would get to whatever normal will be...IS NORMAL a valid word with us Celiac people..haha

Thanks everyone!!!


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Carriefaith Enthusiast

If his boodwork comes back great than he may have another allergy or intolerance. Dairy, soy, eggs, and nuts are fairly common.

Guest taweavmo3

I was wondering the same thing myself, and posted this ?? a while back. My daughter has been gluten-free for 6 months, and her stools aren't quite normal either. She has had a few more formed stools lately, so I think she is finally beginning to heal. But, she still has occasional stools that look like they did pre diagnosis (but they don't smell as horrible, thank goodness!) I have no idea what her antibody levels are, we haven't been back for our scheduled follow up yet.....our pedi GI is next to impossible to get an appt. with.

If your son's numbers look good, sounds like you are on the right track. Maybe in more time, healing will occur and normalcy will resume! I thought those "poop gazing" days were supposed to end with infancy........but I guess for us celiac parents, they never really end do they?

Oh, and potty training has been interesting for us too. Emmie has done great, but in the beginning, she had a few poopy accidents. It really scared her the first time, so I put potty training on the backburner. We tried again this month, and so far, so good. But, when she says she has to poo.......we RUN to the potty, b/c she can't hold it for one second!

e&j0304 Enthusiast

I have also been wondering about this. My daughter has been gluten-free for a little over a month now and she still has stools that are like they were pre-gluten-free diet. I am trying to figure out if she's still getting some gluten somehow. I guess I am not really sure what normal is anymore, but her stools are somewhat like pudding in consistency and they often have undigested food in them. Sorry, I'm sure that's way too much info for you all! Her stools have gotten better, I think, but they are not what I really thought they would be by now.

On the up side, all of her other symptoms have pretty much disappeared and she is doing SO well. I guess I can handle the poop thing if she's doing so well with everything else!

Shannon

Ella 2 1/2 years gluten-free since Aug 3rd 2005

CMWeaver Apprentice

My 4 year old daughters were diagnosed last December (9 months ago now). Long story short, we were gluten-free right away but with one of them, it took a good 4 months for the poop to be "regular". I knew she wasn't getting gluten. I kept food diaries, etc. However, nothing was showing a reaction to something else such as dairy etc.

I didn't know it until about 5 months into it but I called the GI and asked the nurse to read the pathology report from her biopsy. It said she had complete villi destruction. Basically she had severe damage to her intestines. I guess what I learned from this is that for us.....with that much damage, it took her that long before the poop situation was fine. During that time though, we had imconsistent bowel movements. Just when things were fine, she'd have a loose one and I'd be scratching my head trying to think of what she got into.

Something I can say is that despite the inconsistentcy, she gained weight very quickly and now 9 months later, we are 10 lbs heavier! So have faith!

Christine

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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