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Silent Celiac


Deades

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Deades Contributor

I was very surprised to have been told June 1 I had celiac disease.  My doctor thought I had a bleeding ulcer because my ferritin was low along with my red blood count.  He scheduled a scope and about a week later came the call.  Very surprised.  I have no physical symptoms.  I have been following gluten free diet since June 1.  My question is:. Will I experience physical symptoms after being  gluten free.  Also, I understand there are stages of celiac, which I don't know what stage I am at.  I have always been anemic and developed osteoporosis at age 50.  I am currently 58 so I may have had this for a long time.  Does anyone know if my anemia or osteoporosis will be corrected.  Basically how long does it take for your intestines to heal.  Thank you for your time.


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GF-Cheetah Cub Contributor

" My question is:. Will I experience physical symptoms after being  gluten free. "

I can only give you an input on the above question.   My daughter is a silent celiac.   She was diagnosed with blood test and endoscopy 3 years ago at the age of 10.   She is now 13, and she is still a silent celiac. 

When she was first diagnosed, I was told that after going gluten free for a while, she might develop physical symptoms, but that is not our case.   So, it probably vary from person to person. 

Victoria1234 Experienced

I'm sure it does vary. Beforehand I had terrible abdominal pains, C and dh. For about 2 years a crumb would bring it back. Now, basically nothing suggests a glutening except for a bit of a bathroom issue, and even that is something that just happens from time to time. That's one reason I have to be uber careful as I don't have a good signal!

cyclinglady Grand Master
2 hours ago, Deades said:

I was very surprised to have been told June 1 I had celiac disease.  My doctor thought I had a bleeding ulcer because my ferritin was low along with my red blood count.  He scheduled a scope and about a week later came the call.  Very surprised.  I have no physical symptoms.  I have been following gluten free diet since June 1.  My question is:. Will I experience physical symptoms after being  gluten free.  Also, I understand there are stages of celiac, which I don't know what stage I am at.  I have always been anemic and developed osteoporosis at age 50.  I am currently 58 so I may have had this for a long time.  Does anyone know if my anemia or osteoporosis will be corrected.  Basically how long does it take for your intestines to heal.  Thank you for your time.

Hi!  

Anemia was my only known symptom I had at the time my GI screened me for celiac disease.  I went in for a routine colonoscopy since I had hit the 50+ club.  Three months later, I suffered from some fractures and go my osteoporosis diagnosis.  

My anemia resolve swiftly (months) on the gluten free diet.  I also have a genetic anemia, which for years  (all my life probably) masked the anemia caused by low iron storage.   Unfortunately, my osteoporosis has remained steady.  At my age 55, building bone is tough.  I do not take any medications, but exercise a lot and eat a varied and mostly non-processed diet.  No more fractures!  

In my personal case, gluten exposure now has caused GI symptoms, plus other issues.  Weird, but true.  

Healing can take months or years.  It varies because we are all different.  But based on members input, it is a good year or longer.  

Welcome!  

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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? 
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      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.
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      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. 
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