I have had three tests that indicate Caeliac disease.

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I have swithched to a gluten free diet. Why do i still get stomach pains. head ache and feel tired constantly?. I have been gluten free for four days.

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  • Posted

    Hi Cherie,

    it is still very early days at the moment. It's like anything that you exclude from your diet.  Your body goes through a period of detoxing.  This could even take a few months (although your symptoms won't be as bad as that all the time.). When I gave up gluten and wheat when diagnosed with coeliac disease, I started to improve after a week or two but then every few weeks I would have symptoms again, including vomiting.  Whether this was because my body was still detoxing or whether I'd inadvertently consumed some wheat or gluten I can't  be certain of, but it did get better! 

    Sometimes, when we first give up gluten and wheat, we are not always aware of things creeping into our diet which have it in, and this can delay your healing.  I would suggest you join Coeliac UK, they will help you through it and they have a food directory which will help you decide what is safe to eat and what isn't. 

    Also, some coeliacs, including myself, can not tolerate dairy and/or lactose. So that is worth looking into.  Try keeping a food diary for a while, that way you can find out if you are eating something you shouldn't as it's easier to find if you write everything down.

    Hope you start to feel better soon smile

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  • Posted

    Fiona is right - you'll start to feel better but it will take months for the damage to your gut to fully heal.  

    Also, you may have a report from your biopsy that indicates the extent of damage.  In my son's case, his villi were so damaged that the area that produces lactase enzymes wasn't there. He couldn't break down the sugar in milk/dairy. So, we partially avoided it and supplemented with lactaid tablets when he did drink milk, etc. (some cheeses are lactose-free like cheddar)

    I think we all make some mistakes at first, so be really careful with everything you eat and how it's prepared.  We just stopped eating out totally and then (once my older son was tested), we basically eliminated gluten at home so we can't cross-contaminate. 

    The last point that came to mind reading  your post was that you could have some vitamin deficiencies.  Have your dr. test you for the vitamins A, D, E & K plus B12.  I don't think it's routinely done, but it should be (I learned from a nutritionist for Schar).  Just a b12 deficit alone can give you bad headaches and fatigue, even without the CD or other problems.  

    Good luck and good health!

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    • Posted

      ps: After 4-6 months, my son could once again digest dairy - no more lactose intolerance. He just needed the time for his gut to heal. The villi do grow back if you successfully keep away from gluten.
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  • Posted

    Hi cherie, I agree with fiona in that a few days is not really long enough to feel the benefits of a gluten free diet. Myself, I have had very few symptoms but the biopsy detected coeliac disease so I don't think I'll ever feel the benfits but my gut will begin to heal itself, I expect.

    I did suffer extreme fatigue - the falling down can hardly move, very tired kind - that has gone since taking folic acid for 3months.

    It seems a very complex complaint in that we seem to have different/few symptoms..

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  • Posted

    Totally agree with everything above; give it some time - Dr said 6 mths to a year for my 7 year old and kids heal faster than adults. Hang in there
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  • Posted

    Thankyou to all of you for taking time out to reply to my question. I am new to all of this and have never had any issues before like this (lucky i guess). Im waiting for my biopsy which is set for July. I have to many red bolod cells, vitamin B12, and feel blah constantly, I guess im anamic too. I went into hospital with cronic stomach pains which were as bad as child birth. If this is what gluten does to your body then it can remain free from my diet forever.

     

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  • Posted

    I remember when I started my gluten free diet, I didn't think it was working well either for the first couples of week. Then I ate a piece of rye bread by "accident", and I can tell you that from that moment, I could Definitely feel the difference! The pain was atrocious. 

    You will start feeling better soon, without even realizing it! smile

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  • Posted

    Cherie, you say you are waiting for a biopsy in July? I'm confused, I thought you had already had one and had been diagnosed with coeliac disease? If you are being tested for coeliac disease you need to have been eating gluten for at least six weeks prior to a test or your body will not be making the antibodies so that coeliac disease can be diagnosed. Can you just clarify this for us? What were the tests you had to diagnose coeliacs? If it was a blood test you need to keep eating gluten until you have your biopsy.
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    • Posted

      Yikes, yes!  Fiona is right - see if you can get  your biopsy moved up and keep eating gluten in the meantime.  Otherwise you'll probably look "healthy" under the microscope and you won't get the findings to support a Coeliac diagnosis.
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  • Posted

    Hi I've been gluten free now for 2 months and I still get the sickness and stomach pains I also still get joint pains I have now got to have more blood test to check my iron levels where I still get a lot of bouts of tiredness I have been told by my doctor that is could take between 6 months to a year for me to start to feel better . I hope this helps
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