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No Longer The Lone Ranger In My Family

mamabear

By mamabear
in Coping with Celiac Disease

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mamabear Explorer
mamabear
Posted

Been a busy couple of weeks and have missed the Forum, but I wanted to share that my brother's daughter has just been diagnosed with celiac disease. All of my remaining first line relatives have been tested, including my brother, and they have all been negative. This just goes to show the unpredictability of this condition, genetically speaking! I would imagine had my Mother still been living, that she would have been positive. One of my 2 daughters tested negative, and the other hasn't chosen to be tested yet. At least I had a zillion references for my niece starting from Day 1......so maybe it won't be as hard a learning curve for her. Of course, I also directed her here!

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Susan-in-NC Rookie
Susan-in-NC
Posted

In my family, three siblings can't be bothered. One is waiting for better health insurance coverage before she gets tested, has requested that the son in the military get tested, niece is waiting for better coverage. I believe that with the recent changes in ins. laws, that if covered by ins, and testing positive, they cannot be disallowed for coverage at a later date if continious coverage is kept. Both my children have been tested this week and we are waiting for the results. HOWEVER, did inform my Co. HR dept of Dx per manager's request. They were not very friendly and supportive. Makes me wonder what is down the road.

Susan

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    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Welcome to the forum, @WildFlower1! The reason you are seeing conflicting results when you research the length of time recommended for doing the "gluten challenge" is that the guidelines have recently been under revision. So there are two components: 1. amount of daily gluten consumption and 2. duration of that amount of daily gluten consumption Recently, the guidelines have been under revision because the medical community was sensing the previous standards were too relaxed, particularly in the daily amount of recommended gluten consumption. The more recent guidelines seem to be calling for higher amounts of daily gluten consumption over (perhaps) as shorter period of time. So, it is becoming a daily minimum of 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks. Personally, I would recommend that amount of consumption be extended from two weeks to four weeks to ensure valid testing. Your Immunoglobulin IgA at 1.25. Was that within normal range? If that one is low, you are IgA deficient and other IgA test results cannot be trusted. But regardless of whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, a gluten free diet. What would you do different if you had a more confident differential diagnosis? And there are other reasons for the development of osteopenia/osteoporosis that you probably should explore. Are you on any serious supplementation for D3 and magnesium?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      The results of my blood tests after 4 weeks: *Tissue Transglutaminase Ab IgA —->   “<0.5 NEGATIVE” *Immunoglobulin IgA —-> “1.25” *Deamidated Gliadin peptide Ab IgG —-> “<0.5 NEGATIVE”    
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Hi there, I have been scouring the forums, medical journals, celiac websites, speaking to my doctor and there seems to be a contradiction in the exact amount of time one must do the gluten challenge for a blood test. Let me please express my gratitude for taking your time to help! I will try and keep this short. In a nutshell, I am positive genetically for celiac. Previously for many years 10+ I have been on a strict gluten free diet. At a very young age, I had infertility, hair loss, low iron, stomach problems, neurological symptoms, continued low bone density etc. etc. all the symptoms that line up with celiac.  I could never get an “official diagnosis” because I was not eating gluten for years.   Recently, I had a bone density scan, and was shocked at the results. I am young and my low bone density is continuously lowering. This lead me  to seriously consider doing the celiac blood test to confirm if I actually have celiac. Years ago, I had an endoscopy and they did a biopsy saying it was negative for celiac - but I had been on a gluten free diet for years. Now, I asked my doctor if I can start the gluten challenge and get this over with. My doctor said two weeks then get the blood test. I have been having 2-3 pieces of bread daily. After four weeks of doing this, I went for the bloodwork - it came back negative for celiac. I am continuing to eat bread daily, it has now been over 6 weeks. I am not able to get an endoscopy. Please, from your experience how long really must I eat bread daily to ensure I do not get a false negative blood test for celiac? I have read up to 12 weeks. One doctor advised this is foolish to even do this gluten challenge as I am damaging my body. My other doctor said 2 weeks eat it, but it showed negative. But with my recent continuous lowering of bone density I personally need to rule celiac out.   Thank you VERY much for your help, I truly appreciate it!!
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    • Scott Adams
      Conflicting results

      By Scott Adams · Posted

      It's possible he's in the early stages of celiac disease, and it has been caught before villi damage. The blood test results so far do indicate possible celiac disease, as well as his strong family history of celiac disease. If his symptoms get better on a gluten-free diet this would be another strong indication. Personally I think it's definitely better to proceed on the safe side and go gluten-free, rather than to risk severe villi damage and all that comes with it.
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