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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. 

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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!

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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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    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
    • knitty kitty
      Hello, @Hannah24 Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.   Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease.  Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies. The DNA test would be helpful.
    • trents
      We do hear of cases of remission but they generally eventually revert back. I wouldn't push your luck.
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