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    1. - cristiana replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Potential diagnosis

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      Potential diagnosis

    3. - cristiana replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Potential diagnosis

    4. - knitty kitty replied to Neat1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Maybe celiac, maybe just ncgs?

    5. - trents replied to matts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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    • cristiana
      Hi @matts Yes.... it's a mystery to me why we are holding onto that 'o'.   I expect it won't be there in 100 years! I think you are very wise to go back to your GP to chat through your options.   If you would like to know one way or another, he or she may be happy for you to see a gastroenterologist through the NHS.   If not, and you would still like to know and can afford it, you could do what my friend did,  She went direct to a consultant at our local private hospital to have an endoscopy.  Her situation was different from yours in that she did not test positive, but she did have gastric symptoms.  Her Dad was a coeliac and she wanted to be sure she wasn't one of a small number of coeliacs that don't ever test positive in the blood test, but do have villous damage in their gut. I do hope things work out well for you - perhaps drop by and give us an update sometime! Cristiana 
    • matts
      Hi Cristiana, You’re spot on, I am from the UK!  In terms of eating gluten prior to the blood test, I only had a week in between requesting and having it done but I think it would be accurate in terms of how much I’d eaten, I have two slices of toast most mornings and gluten included in most other meals throughout the day. Thank you for the article, as you said with the family history it is probably correct that it should be investigated further. I’ll contact my GP on Monday and ask for further investigation, as you said I know they aren’t massively over the normal limit but must be a ‘normal’ range for a reason and if it’s come back above it then it needs looking at!  I’ll continue my diet as is for now so then if I do have further tests then they should be accurate results. Thanks again, Matt  
    • cristiana
      Hi @matts Welcome to the forum. I'm a coeliac living in the UK.  I have a hunch you may be posting from the UK because of the way you spell 'coeliac.'  Our American friends, quite sensibly in my opinion, drop the 'o'! Anyway, if so the UK, 'satisfactory' blood tests mean as follow: 'Satisfactory. Take no action - This means that the doctor has looked at the results and deemed it to be very close to the normal range for the test and the result is not concerning. Some patients have consistently abnormal results that are 'normal' to them.'  Source: https://www.nrmc.nhs.uk/test-results#:~:text=Satisfactory.,are 'normal' to them. Now,  I have annual/biannual blood tests and get a few blood tests that consistently hover just above normal limits, and they come back with that typed next to them.  The doctors can look back at my records and see that the readings are normal for me. However, under your particular circumstances I would definitely request to be sent to a gastroenterologist.  Because although your GP considers your blood tests are satisfactory, i.e. just outside normal limits, they ARE nevertheless outside normal limits and you do have a first degree relative with Coeliac Disease.  I am no doctor but I would say this gives sufficient grounds for investigation, especially if you have been experiencing any gastric symptoms,  or seemingly unrelated things like headaches, tingling extremities, or tiredness - the symptoms of coeliac disease vary enormously from individual to individual. Also, may I ask you, have you been consuming gluten with most meals in the past few weeks prior to your blood test?  For a positive blood test,  coeliacs need to consume the equivalent of about 2-3 slices of gluten containing bread a day over a six to eight week period.  Because if you don't eat much gluten, you may not be reacting much.  Bear in mind that if you do go forward for further blood tests or an endoscopy, you will need to keep eating gluten. If it turns out you are a coeliac, in the UK a coeliac diagnosis will entitle you to all sorts of important NHS health monitoring and support, which in the long-term even if you are feeling well now, could be very beneficial to your health.   One other reason it would be good to know one way or another, is because if you turn out to be a coeliac, you will need to take the diet extremely seriously.  It can at times be a bit restricting, as you mother I am sure will tell you.  And gluten free substitutes can be expensive - my gluten-free pasta, my gluten-free chocolate biscuits, my gluten-free bread adds pounds to my weekly shop!! Cristiana      
    • knitty kitty
      @Neat1, I so glad you're going to try Thiamine!   Do let us know how it goes.   Benfotiamine is the form of Thiamine that may be very helpful to you.  Benfotiamine has been shown to promote healing in the intestines.  Be sure to take a B Complex because all eight B's work together.  Try to get a minimum of 300 mg a day of Benfotiamine.  Higher doses are needed to correct low thiamine.  Add a magnesium supplement.  Ask your doctor to check your Vitamin D level, which is frequently low in celiac disease.   Diamine Oxidase (DAO) supplements are digestive enzymes that may help until you start making sufficient amounts yourself with supplemented B vitamins. Chronic sinus infections are common in Celiac Disease.  
    • trents
      For the doctor to say the results of the test were "satisfactory" is rather odd. By that did he mean he didn't think you have celiac disease.? I mean, the result of the test is positive for celiac disease. Or, did he mean that it was satisfactory in the sense of agreeing with your symptoms and family history as indicating celiac disease? It was a rather ambiguous remark in my opinion.
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