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Post Diagnosis, Recovery & Treatment of Celiac Disease

Discussions related to the recovery process after you've been diagnosed.


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  • Posts

    • StaciField
      I am so scared of going to my doctor because she didn’t give me any information on my condition just saying remove gluten. I have a number of things that relate to coeliac disease but the doctor never picked up on it years ago when I was questioning my health.
    • StaciField
      I was diagnosed with coeliac disease about 8 months ago. I have been on a gluten free diet since then but I am still struggling with symptoms.  My bones hurt all over my body, my hips and elbows especially. My arms are tingling a lot and feeling numb.
    • trents
      Welcome to the forum, @StaciField! That is a question for a dental professional. But let's get some background info from you in relation to things we are more qualified to give input about. Have you been diagnosed with celiac disease? If so, are you consistent in gluten free eating?  If you haven't been checked for celiac disease, you certainly should be as mineral depletion of the bones is a common symptom of the condition. Celiac disease results in vitamin and mineral malabsorption.
    • StaciField
      I had an ex ray yesterday and I was told that my bones in my jaw were broken and falling away. I have 2 front bottom teeth that are wiggling and I have to take them out. I am so scared of this as I have more broken teeth that I’m wanting removed. If I have them removed would I be able to get false teeth if I have a bone problem?? 
    • trents
      Welcome to the forum, @ShRa! First of all, celiac disease is not a food allergy. It is an autoimmune disorder. That is, the ingestion of gluten triggers the body's immune system to attack it's own tissues, primarily the tissues that line the small intestine. This causes inflammation. This inflammation produces certain antibodies that can be detected by serum testing. Over time, the inflammation damages the lining of the small intestine and compromises the efficiency of nutrient absorption since the small intestine (aka, small bowel) is the part of the intestinal track where essentially all of the nutrition in the food we eat is absorbed. Gluten is a protein found in three grains: wheat, barley and rye. In people with celiac disease, the immune system mistakes gluten as an invader. Two factors have to be present to develop active celiac disease. The first is the genetic potential. Two genes (and their variants), HLA-DQ2 and HLA-DQ8, have been tied to celiac disease. About 40% of the population has 1 or both of these genes but only about 1% of the population develops active celiac disease. That means there is a second factor that must come into play to turn the genes on such that they become active in producing celiac disease. This second factor is not well understood but it is thought to involve some kind of stress event. For example, a viral infection or other acute illness or even prolonged psychological/emotional distress. Apparently, for most with the genetic potential for celiac disease, this never happens. Your son has been diagnosed as a celiac via serum antibody testing. Normally, there is a second stage of testing involving an endoscopy with biopsy of the small bowel lining to microscopically check for damage. This second stage procedure is considered the gold standard of celiac disease diagnosis but is sometimes dispensed with if the serum antibody scores are quite high. Your son's tTG Ab-IGA score apparently qualifies for this in your PCP's opinion. The "normal" IGA (aka, "total IGA") score simply means he is not IGA deficient and is not a test for celiac disease per se. In the case of IGA deficiency, the tTG Ab-IGA score can present as a false negative. Since his total IGA is normal this is not an issue. The other celiac antibody test done was the Gliadin DGP Ab IgA and it was normal. Do not be concerned that one antibody test was high positive and the other was normal. This is typical. The tTG Ab-IGA is the most important one and the one test most ordered by doctors when checking for celiac disease. One concern I have going forward is the instruction from your PCP to have your son stop eating gluten before he sees the specialist. If the specialist wants to do an endoscopy with biopsy and a good amount of time elapses before that procedure happens, going gluten free now might allow for enough healing of the small bowel lining to invalidate the biopsy results. Kids heal fast! I would consider holding off on going gluten free unless your son's health is clearly in immediate danger by not doing so. I am linking two articles that might be helpful in. One is an overview of celiac serum antibody testing. The other is a primer for getting a handle on eating gluten free.  
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