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Possible Celiac


dalek100

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cyclinglady Grand Master
18 hours ago, dalek100 said:

Hi, 

Thank you to everyone for continuing to help me. I cannot thank the people on this forum enough. 

Through the post today, I received my report from my colonoscopy. It says "There was a lot of solid faeces in left colon despite taking full prep. Note elevated tTg - Celiac Disease."

I was wondering does this mean that they have diagnosed it as Celiac? Is it normal for the bowel preparation to not work as well? 

Thank you for everyone's help on this forum. 

I would take this as "celiac disease is suspected".  Yes.  Slow GI transit can be a result of celiac disease.  This happened to me too as I mentioned previously on my Sunday post (see above).  I can be possible to diagnose celiac disease from a colonoscopy if the GI was able to reach and enter the small intestine, but I do not think it is the norm.  My celiac disease was based on biopsies from the small intestine via endoscopy.  My colonoscopy biopsies just were screened for colon cancer.  


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dalek100 Apprentice

Thank you for your help. I have had a few colonoscopy procedures done before and the bowel preparation started working near enough immediately. This time it made me feel awful and took a long time to work its way through. Can Celiac cause constipation as well as the opposite as my bowel habits have changed a lot and prior to the bowel preparation some hard stools caused bleeding. I also was wondering is it still possible for the TTG-IGA to be positive but the EMA not? My appointment to see the specialist isn't until 24th April so feel like I have such a huge wait and so worried about still being none the wiser or any chance of getting back to normality again as I am underweight as well. 

Thank you for all your help and support and do hope I am not a nuisance on here. 

dalek100 Apprentice

Hi again,

I was also wondering whether having the bowel preparation will have lowered the TTG level at all?

Thank you for everything.

 

cyclinglady Grand Master
39 minutes ago, dalek100 said:

Hi again,

I was also wondering whether having the bowel preparation will have lowered the TTG level at all?

Thank you for everything.

 

No, the TTG antibodies are measured in the blood.  Yes, it is possible to have a negative EMA.  It is possible to be negative on ALL the celiac antibodies tests.   A celiac diagnosis can be confirmed with biopsies of the small intestine (looking for villi damage).  Constipation can be a symptom of celiac disease.  

I know it is hard to wait.  I waited for seven weeks before my endoscopy due to work constraints.  I took the time to eat all my old yummy favorite gluten-filled foods.  I knew in my heart that celiac disease was an issue for me once I got past the denial stages.  I was only anemic, but looking back, there were little signs.  Amazing how the body can adapt and continue to function.  

  • 2 months later...
Victoria1234 Experienced
On 3/24/2017 at 10:21 AM, cyclinglady said:

No, the TTG antibodies are measured in the blood.  Yes, it is possible to have a negative EMA.  It is possible to be negative on ALL the celiac antibodies tests.   A celiac diagnosis can be confirmed with biopsies of the small intestine (looking for villi damage).  Constipation can be a symptom of celiac disease.  

I know it is hard to wait.  I waited for seven weeks before my endoscopy due to work constraints.  I took the time to eat all my old yummy favorite gluten-filled foods.  I knew in my heart that celiac disease was an issue for me once I got past the denial stages.  I was only anemic, but looking back, there were little signs.  Amazing how the body can adapt and continue to function.  

I've still got slow transit time, and have to work pretty hard to be regular. My last colonoscopy my doc complained about things not being very cleaned out. I had a horrible time with the prep. Thought everyone did till I spoke to my husband about his experience, and he's had a bunch of them. I have my big 50 colonoscopy coming up in December... any tips or tricks on making the prep more pleasant or work better so the doc doesn't yell at me again? (He almost stopped the procedure. I was pretty out of it but I do remember the angry tone of his voice.)

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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