Jump to content

  • 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):

Toddler On Gluten For 5 Weeks, Symptoms Not As Expected

brendab

Recommended Posts

brendab Contributor
brendab
Posted

Ok, it's been a few weeks since I posted here about my 2 year old with what SEEMED like some pretty convincing Celiac symptoms so I made an appointment for him with Celiac specialist whom he will be visiting on Monday. Finally! We waited 5 weeks and during that 5 weeks my husband and I decided we'd feed him gluten but were scared at first. Well, he didn't react with his usual symptoms of exposure of: unformed/mushy/foamy poop that smelled like mothballs burned his skin and was full of undigested food. Oh, and it was usually yellow and enormous in amount! He's also had black poop, gray poop and blood marbled poop. Sometimes it would float. Sometimes it would seem sandy and hard to wipe off. Oh and ONCE he had 3 strange blisters on his scrotum but I've not seen them since.

NOW he mostly has harder poop, in small balls and sometimes black or very dark. Once in awhile I will see a streak of blood but that could be from the constipation he seems to be having now. No gray or yellow/frothy poop. Every once in awhile it will float but rarely. He sometimes will get a rash from it. He now has emotional issues where he'd melt down unreasonably whereas before he would be rather cool about things, he cannot handle anymore. Other than that, it's nothing. What gives? The textbook stuff happened if it was an accident and now that I intentionally give it to him in large amounts those harsh symptoms seem to be gone! Gaah!

Anyway, Monday will be interesting...........what are we to expect that first visit? I am assuming a blood test but with only 5 weeks exposure and no previous exposure (except accidental) during his entire 2 years of life, will they really find anything?

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

I hope your doctor helps you to figure this all out. It is so hard to see your child sick. It seems very confusing.

BRUMI1968 Collaborator
BRUMI1968
Posted

Hi there. Just wanted to say that I had celiac as a kid (and still do, obviously) and my main symptom was always constipation, to the point of having blood in my stools frequently. Ug. I wish my parents had figured it out, and I'm so happy to hear you're on the right path! (Me? Diagnosed at 37 years old!)

Sherri

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi there. Just wanted to say that I had celiac as a kid (and still do, obviously) and my main symptom was always constipation, to the point of having blood in my stools frequently. Ug. I wish my parents had figured it out, and I'm so happy to hear you're on the right path! (Me? Diagnosed at 37 years old!)

Sherri

Myself also. As a child I always had what my Mom called 'rabbit poops' small dry and as one doctor put it 'the worst hemmies he had ever seen in a child'. I was also covered in blisters which they said was 'poison ivy' in my blood stream. The emotional issues you are seeing can also be part of the celiac picture.

I hope you get some answers soon as the poor little guy sounds very uncomfortable.

mommida Enthusiast
mommida
Posted

Well I would expect the blood test. Be prepared to share his symptoms, growth chart, and any type of food journal with the symptoms afterward.

You will now have to go with the doctor's "usual suspects" list and what type of testing can rule these things in or out.

You may go home with a stool sampling test kit. (The things we do for our kids!)

To really find out what is going on, will probably require scoping. Build the relationship to be able to trust this doctor, or find a different one. It is a trillion times harder handing your baby over to a doctor.

Let us know how it goes.

brendab Contributor
brendab
Posted
  • Author

Thank you everybody, I just second guess myself constantly. I just wonder why the accidental exposures are so much worse than the intentional exposures with MUCH more gluten? It's very strange.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you everybody, I just second guess myself constantly. I just wonder why the accidental exposures are so much worse than the intentional exposures with MUCH more gluten? It's very strange.

I think it is because the accidental exposure causes a sudden spike in the antibodies. It sounds like his body is trying to compensate for the regular gluten exposure by trying to draw as much as it can from his food. Hence the constipation rather than the D that you were seeing with only occasional exposure.

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

Celiac.com Sponsor (A8-M):


brendab Contributor
brendab
Posted
  • Author

I think it is because the accidental exposure causes a sudden spike in the antibodies. It sounds like his body is trying to compensate for the regular gluten exposure by trying to draw as much as it can from his food. Hence the constipation rather than the D that you were seeing with only occasional exposure.

Now that may be the case! I'm very interested to know what the doc says on Monday.

Skylark Collaborator
Skylark
Posted

I think it is because the accidental exposure causes a sudden spike in the antibodies. It sounds like his body is trying to compensate for the regular gluten exposure by trying to draw as much as it can from his food. Hence the constipation rather than the D that you were seeing with only occasional exposure.

I think gluten is such an immunologic insult to celiacs that our whole immune system gets suppressed. As Raven says, when you take away gluten the immune system normalizes some and then you get big antibody spikes. Interesting idea about why the constipation appears. I was wondering if it was damage and overall poor intestinal mobility.

ravenwoodglass Mentor
ravenwoodglass
Posted

I think gluten is such an immunologic insult to celiacs that our whole immune system gets suppressed. As Raven says, when you take away gluten the immune system normalizes some and then you get big antibody spikes. Interesting idea about why the constipation appears. I was wondering if it was damage and overall poor intestinal mobility.

That could be it also. I wonder if it might have something to do with damage to the nerves in the intestine causing the poor motility? It could have a combination of factors also. It seems quite a few of us have C for a bit when the disease first strikes. I had heavy nerve impact as a child, we know this from the loss of reflexes in my lower extremeties and the ataxia and the mood and learning problems. My peds always told my mother that the C was just my normal pattern, at least until I started getting impactions. So much still to be learned about this disease.

brendab Contributor
brendab
Posted
  • Author

We just got back from the GI's today and they took a ton of blood from him today :( I told her about the black poops and the red blood in the poops and she told me that with celiacs that doesn't happen but she'd test for it anyway. She doesn't think he has Celiacs but eosinophilic colitis so I don't know what to think anymore. I'm suppose to collect his movements for the next 3 days, take them to the lab and then meet back with the Dr. in 10 days to review testing results of both the poop and blood and go from there. She said to keep him on the gluten until we have results.

kpryan Apprentice
kpryan
Posted

I recently just went back on gluten myself after 2.5 of being gluten free. And I am experiencing the same symptoms as your son! I expected much worse, but have the same poop characteristics LOL...

I am having an endoscopy in 2 weeks... But it is very confusing.... Good luck to you and your son!!!

Ok, it's been a few weeks since I posted here about my 2 year old with what SEEMED like some pretty convincing Celiac symptoms so I made an appointment for him with Celiac specialist whom he will be visiting on Monday. Finally! We waited 5 weeks and during that 5 weeks my husband and I decided we'd feed him gluten but were scared at first. Well, he didn't react with his usual symptoms of exposure of: unformed/mushy/foamy poop that smelled like mothballs burned his skin and was full of undigested food. Oh, and it was usually yellow and enormous in amount! He's also had black poop, gray poop and blood marbled poop. Sometimes it would float. Sometimes it would seem sandy and hard to wipe off. Oh and ONCE he had 3 strange blisters on his scrotum but I've not seen them since.

NOW he mostly has harder poop, in small balls and sometimes black or very dark. Once in awhile I will see a streak of blood but that could be from the constipation he seems to be having now. No gray or yellow/frothy poop. Every once in awhile it will float but rarely. He sometimes will get a rash from it. He now has emotional issues where he'd melt down unreasonably whereas before he would be rather cool about things, he cannot handle anymore. Other than that, it's nothing. What gives? The textbook stuff happened if it was an accident and now that I intentionally give it to him in large amounts those harsh symptoms seem to be gone! Gaah!

Anyway, Monday will be interesting...........what are we to expect that first visit? I am assuming a blood test but with only 5 weeks exposure and no previous exposure (except accidental) during his entire 2 years of life, will they really find anything?

  • 1 year later...
lilyandbensmom Newbie
lilyandbensmom
Posted

We just got back from the GI's today and they took a ton of blood from him today :( I told her about the black poops and the red blood in the poops and she told me that with celiacs that doesn't happen but she'd test for it anyway. She doesn't think he has Celiacs but eosinophilic colitis so I don't know what to think anymore. I'm suppose to collect his movements for the next 3 days, take them to the lab and then meet back with the Dr. in 10 days to review testing results of both the poop and blood and go from there. She said to keep him on the gluten until we have results.

It's been a long time since this post... but what was the diagnosis and how are things?

Archived

This topic is now archived and is closed to further replies.

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

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...