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Taking The Coeliac Challenge

Cobalt

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Cobalt Newbie
Cobalt
Posted

Hi all

I am new here and trying to find some information about what i'm going through. I have had stomach problems for at least 12 years I had some tests initially but the GP decided it was IBS so I just got on with life. One of my 3 daughters has also suffered stomach and bowel problems, I have also suffered oter symptoms.

Joint Pain

Headache

Foggy head

Ashtma

Bloating

so when my father was diagnosed with coeliac last year I put 2 and 2 together. My GP gave me a blood test which came back negative for coeliac and after that would not discuss anything with me other than you have IBS go away and live with it. I discussed my daughters condition with another GP in the practice but was told it was perfectly normal for a 4 year old to have constant diarrhoea and stomach ache. Recently I moved house and transferred to a new GP I discussed it with him at registration he was worried and said this wasn't at all normal, he also said coeliac blood tests can come back as false negative or I could be Gluten intolerant. He has recommended that I do a gluten challenge as he says this is the easiest way to check whats going on.

Has anyone had a similar experience and do you have any advice.

Many Thanks

Pete

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mommida Enthusiast
mommida
Posted

If you plan on having any further medical tests you would need to continue eating gluten. The tests only find damage that eating gluten has done to the patient.

There is genetic testing, but that is not enough for most physicians to diagnose Celiac. (You already know your father has been diagnosed Celiac.)

So if you are ready to try the diet, remember official diagnoses will probably not be an option. (I must warn you some become more reactive to gluten after being gluten free and con not tolerate a gluten challenge for testing. A gluten challenge put my daughter in the hospital for dehydration.)

frieze Community Regular
frieze
Posted

Hi all

I am new here and trying to find some information about what i'm going through. I have had stomach problems for at least 12 years I had some tests initially but the GP decided it was IBS so I just got on with life. One of my 3 daughters has also suffered stomach and bowel problems, I have also suffered oter symptoms.

Joint Pain

Headache

Foggy head

Ashtma

Bloating

so when my father was diagnosed with coeliac last year I put 2 and 2 together. My GP gave me a blood test which came back negative for coeliac and after that would not discuss anything with me other than you have IBS go away and live with it. I discussed my daughters condition with another GP in the practice but was told it was perfectly normal for a 4 year old to have constant diarrhoea and stomach ache. Recently I moved house and transferred to a new GP I discussed it with him at registration he was worried and said this wasn't at all normal, he also said coeliac blood tests can come back as false negative or I could be Gluten intolerant. He has recommended that I do a gluten challenge as he says this is the easiest way to check whats going on.

Has anyone had a similar experience and do you have any advice.

Many Thanks

Pete

Your present doc sounds like a "keeper"! can you get the little one tested? and get the copies of your blood work from previous doc, asap.

nvsmom Community Regular
nvsmom
Posted

I have every symptom as you except for the asthma... and I was told as child that it was normal for me to have stomach aches and "C". <_< I'm glad you found a different doctor.

Instead of doing a celiac challenge (cutting gluten for a short time and then re-introducing it to see if you react) why don't you just go gluten-free for 3-6 months and see how you feel? You already know that you feel pretty badly while eating gluten (joint pain, headache, foggy head, asthma, bloating), just cut the gluten and observe and record how you feel better.

It is a good idea to give a gluten-free trial a few months. Some symptoms take days to improve where as others take months. It took 6 month of eating gluten-free before my arthritic like joint pain started to feel better; I'm not positive it was because of the gluten free diet, but I'm hoping it is.

Good luck... and ditto frieze, get your daughter tested if possible.

Cobalt Newbie
Cobalt
Posted
  • Author

Thanks for the advice, I have been doing quite a lot of reading so feel I am
now better equipped to talk to my doctor about testing.  Think I was put
off when my old doctor told me I tested negative for celiac, I am trying to get
hold of the actual blood results and hopefully that will give me some
indication.  I will definitely look at getting my daughter tested would be
a lot better for her in we found out early. 

 

Another question.  I have had swelling in one of my fingers at the top
joint over the past week, it came on suddenly and I have not injured the
finger.  It has now developed to hard lumps on the back of the joint and I
have very limited movement in the joint and a deep pain if I try to bend
it.  I have looked on the web and it looks and has the symptoms of
Heberden's nodes in osteoarthritis is this common in celiac disease or is it
likely unrelated.  I am 36 so seems early for arthritis.  I have
booked to see my doctor but can't get to see him before 6th March so just
trying to find out a bit in advance.

 

Thanks.
 

 

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