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After diagnosis

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BusyBee96
BusyBee96

After nearly two years of symptoms and tests I have been given a diagnosis of coeliac disease (confirmed with a blood test and endoscopy) although it isn’t clear if all my symptoms stem from this. I haven’t really been advised of the process after diagnosis and having checked the NICE guidelines it only says a referral to a dietian. Can anybody help? 

0 likes, 4 replies

4 Replies

  • aya48093
    aya48093 BusyBee96

    Posted

    Hi!!

    There is no treatment. You just have to follow the gluten free diet strictly. Firt you have to eliminate the biggest sources of gluten: bread, pasta, pizza... And than stat reading labels od soy sauce, chocolates... almost everything.

    The problem is that adults usually have connected intolerances when starting with gluten free diet: lactose, dairy, sugar, fructose - so be vigilant about bloating, gases and similar symptoms. 

    What were your symptoms anyway? I stayed bloated until I didn’t eliminate all dairy and sugar too. I am finishing my second month on diet and I eliminated many symptoms, just reflux still persist :-(

    • BusyBee96
      BusyBee96 aya48093

      Posted

      Hi,

      Thanks we’re you referred to see gastro or just to see a dietician?

      I didn’t have any of the typical symptoms of coeliac. My symptoms are pain in my shoulder, numbness in one hand, pins and needles, loss of feeling in the hand, shingles twice and chicken pox all within 10 months, b12 deficiency and folate deficiency. 

      It was only my doctor opting to do a blood test while I was having others done that the diagnosis came.

    • aya48093
      aya48093 BusyBee96

      Posted

      Hi,

      I had blood test done by my doc. But she only did antibodies antigliadin IGA and the result was just below the limit. But I had also extremely low Vitamin D and ferritin. And bloating, constipation, heartburn, tingling in arms, tongue, blurred vision... Then I went to gastro who gave me medicine for reflux. 

      So, finally I spoke with one another gastro and he told me to quit all gluten. 

      According to my experience is much better to search on internet or read some good books about celiac than to search information from doctors. If you don’t have really good one who knows his field, than is better to find other sources. Ignorant doctors can mislead you.  So dietitian could be good option too. I would try them all, so that you can get as many information as possible. 

      But for following you diet and recovery it would be a must to have a good doc or gastro. Let him or her check also your Vitamin D as this is crucial with nerve damage. Many gastroenterologists follow their pacients recovery based on Vitamin D level.

      I wish you all the best!!! 

      Aya

  • FA54321
    FA54321 BusyBee96

    Posted

    Hi, usually after a biopsy and confirmation, you normally get to see a specialist (who will probably want you to have another endoscopy a year after you start a gluten free diet.  They normally give you yearly blood tests and every few years you should be offered a DEXA scan, to check your bone health, as Coeliac disease can cause osteoporosis.  The best advice I can offer you, is to contact Coeliac UK, they will give you a lot of advice and you normally get 6 months free membership following diagnosis. They will go into detail about preparing food, which will involve keeping a toaster only for yourself (i.e. you must not use a toaster that’s previously been used to toast gluten bread, you must not use porous chopping boards e.g. wooden, or wooden spoons as they can absorbe gluten into the wood). You need to wash surfaces down twice before preparing your food.  A lot of it is common sense,  it there may be things you haven’t thought about yourself.  They will also send you a food guide for this year, which contains a list of commercially prepared foods that are gluten free.  If you look them up on line, their phone number will be in their website. If you ever have any questions, their helpline will be there to support you. 

     

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