What do I have?

Posted , 6 users are following.

Hello

I've posted in a few different discussion groups now as I have no idea what's going on.

Just after Christmas I started having diarrhoea. That hasn't stopped. I've had chronic diarrhoea since. I also get lighter coloured stools and stools that are fatty and have bubbles coming from them. I've been to the docs so many times and they said it's ibs. They ran bloods just before the diarrhoea started as I was feeling so tired and all normal. I begged my GP for tests last week as I'm so fed up and I feel exhausted all the time. She did a blood test for my pancreas as I've been worried it's that and that came back normal. I did a stool test too last week for inflammation. She said I know it'll be fine and then referred me for counselling for my anxiety. So yesterday my stool results came back and my level is 90. The receptionist rang me and said I need to arrange a phone consultation with my GP but it's not urgent so it'll be Monday.

My symptoms are

Chronic diarrhoea

Yellow /pale and sometimes fatty stools

Bloated

Nausea

Noisy stomach

Pains all over my tummy and back but not awful pain.

Tired

Dizzy

Weakness, especially in my arms and legs

Acid reflux

I ate lots of bread yesterday at a party. Way more bread than I would usually eat and today I woke up and felt so sick. I had a normal bowel movement then I passed a fatty very pale stool! I find when I have these stools I feel very sick before I pass them.

I'm waiting on the doc to ring me today as I can't wait until monday. I still stress if it's my pancreas, liver or gallbladder as they haven't been checked out with a scan. They just keep saying it's ibs so I feel like a pest when I go back to them. I had the celiac blood test but that was negative. The GP did say its very unreliable. Is the only test the endoscopy? I've had one years ago and I truelly don't think I can do that again .

Sorry for the lengthy message. It's been a long and tiring time

Sarah

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  • Posted

    Have you been tested for Coeliac’s disease? My symptoms were far less than that and they tested me. Mine came back negative but I still cut out gluten because it doesn’t agree with me. Apparently the biopsy is the most accurate rather than the blood test, but I just had the blood test. You can still have gluten sensitivity even if you’ve not got coeliacs. Did you have any of these symptoms before Christmas or did they just suddenly come on? 
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    • Posted

      Hello

      I had the blood test and they came back normal but my GP said it's not always reliable. It came on after a very stressful even when my dad took ill. That's why they blamed my anxiety abs ibs for so long. The GP said it won't be ibs as my stool test came back high for inflammation. I'm being referred to the gastro.

      Can you become sensitive ot celiac if it doesn't run in your family??

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    • Posted

      Coeliac disease can strike anyone at any time, it doesn't depend on others in the family suffering from it.  I spent most of my life being able to eat anything put in front of me with no problems, but was diagnosed with coeliac disease when I was in my late 70s!  The diagnosis came after going through an endoscopy session for other reasons.  The apparent symptoms can vary from not particularly noticeable to quite extreme. I had previously been diagnosed with anaemia and prescribed iron tablets to deal with the problem.  I now understand that this is sometimes the only symptom of coeliac and now that I have been gluten-free for some time my iron levels are back to normal without medication.  The reason for going into this detail is to emphasise that the only positive way of diagnosing coeliac disease is through endoscopy tests, simply looking at symptoms is sometimes not sufficient.

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    • Posted

      Thank you for that info.

      I think I'll have to have the endoscopy. Really do hate that procedure. I had low iron about 7 years ago and they had no idea why. Was on iron tablets for 5 years. When I came off the tablets it's stayed around 70. I have also had low b12 several times.

      The last bloods I had before this started were all good but I spoke to the doc today and he's getting another one sorted. They haven't really wanted to give me tests as they have just blamed my anxiety and IBS. Least they will take me seriously now. Thanks for the reply. Think it will be a few weeks before I see the gastro

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  • Posted

    It could be any number of things, including Coeliac disease, or food intolerances. You need to get your doctor to be thorough with his tests. If it turns out to be food intolerance or IBS, the low FODMAP diet is really helpful. To be tested for coei9disesse, you need to be eating gluten for at least 6 weeks prior to the tests.
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    • Posted

      I'm still eating gluten. Not going to stop until I know what it is. Going to have more bloods soon. Its more the fatty stools and paler stools that concern me.

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    • Posted

      I notice you have had problems with low iron, that too can be Coeliac disease;  If your doctor has checked your pancreas, and all was well, it could be a food intolerance. Stools are more yellowish when the food goes through your digestive system too quickly, and your body doesn’t get what it needs from your food. It could still be Coeliac disease or a food intolerance. If it’s not Coeliac then I would definitely try the lowFODMAP diet. 

      Please bear in mind that a blood test alone for Coeliac disease is not that reliable. You can get what is known as a false negative, so you would still need an endoscopy with biopsies to get a proper diagnosis. For more information on this, contact Coeliac UK, they will help and advise you (they actually advise doctors).

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    • Posted

      It was a blood test to check my pancreas. I've not had a scan. I don't have pains in the pancreas area.

      Yes years ago when my iron first went down they offered me the endoscope but I refused as I'd had one years before for reflux and I hated it so didn't want it again. They never did know why my iron went low. I suffer with low b12 too on and off. They just diagnosed me with ibs when I've had bowel problems in the past. Never have I had diarrhoea like this and for so long.

      Thank you for the advice. I have bloods on Monday to check my vitamins and blood count. I'm so washed out and drained. It's making me depressed as I can't control my bowels anymore and I worry about eating too much as I'll be on the loo the next morning.

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  • Posted

    Has the doctor ever checked for pernicious anaemia? The symptoms can be similar to IBS - especially with regard to your bowel problems? 
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  • Posted

    definitely time to see the gastroenterologist and get the endoscopy and biopsy done.  even if you are told you do not have Coeliac disease, I would go on a gluten free diet and follow a healthy life style, alcohol causes inflammation when consumed to excess, so does cigarette smoking.  exercise helps with stress and anxiety.

    best wishes to you!

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    • Posted

      Hi, It could turn out to be Coeliac disease if Sarah hasn’t had an endoscopy already, but for this, you must be eating gluten for at least 6 weeks prior to the endoscopy otherwise the antibodies will not be present that show the Coeliac disease up (it’s an autoimmune disease). After having the test results back, then it’s safe to give up eating gluten and wheat if it’s confirmed. I don;t think it’s wise for anyone to give up eating gluten until all the tests have been done, otherwise it may get missed.
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    • Posted

      you are correct indeed as I have gone through it as well.  actually my biopsy from the endoscopy and one out of two blood tests (i wish i could remember the specific details) came back positive for gluten intolerance.  

      i had not known then about the fact that one has to keep eating gluten until tested.  i did not suggest that anyone give up gluten prior to the endoscopy but rather only after.  i did suggest that if one continues to have digestive pain, bloating issues, even if one has received negative results, to give up gluten and see how it goes.  Coeliac disease is complex and there is a lot to learn on how to manage it.  It is good to seek professional nutritional advice or do research on exactly what is gluten and in what foods it will be found.  also one must not forget to follow a healthy life style; it's not easy.

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  • Posted

    definitely time to see the gastroenterologist and get the endoscopy and biopsy done.  even if you are told you do not have Coeliac disease, I would go on a gluten free diet and follow a healthy life style, alcohol causes inflammation when consumed to excess, so does cigarette smoking.  exercise helps with stress and anxiety.

    best wishes to you!

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