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Wondering if maybe I have coeliac

Posted , 4 users are following.

leigh74005
leigh74005

Hi all. I'll apologise before hand for the length of my post. Here goes.

For as long as I can remember, I've always had a nervous bowel. Would always manifest as loud noises and diarrhoea. I useually had no other symptoms that went alongside this apart from occasional acid reflux and heartburn. Last may, I started to get abdominal pains on the right hand side under my ribs. Docs thought it could be my gallbladder and sent me for an ultrasound. I got the ultrasound in June. No stones found. A couple of polyps but otherwise ok. Radiologist that done the us could not see my pancreas so she sent me for a ct of abdomen. I got this done the next week and It came back fine.

During June and July, the right abdominal pain started to shift to the centre and left upper abdomen. I began to feel week and tired. I was constantly hungry. Felt like I was not getting enough energy from my food. I was referred to a gastroenterologist in July. They took a load of blood tests from me. Coeliac blood test was included in these. They all came back normal. No other tests were done and I was discharged with a diagnosis of ibs.

I was not happy with being fobbed off as a lot of my systole didn't fit with ibs. I persued other potential causes of my symptoms such as chronic pancreatitis. Had faecal elastase sample sent to the labs. This was fine. Also, my blood work didn't lean towards pancreatitis. I paid privately to see an endocrinologist in October. He was good. I have an under active thyroid that I have known about for a long time. He said that people with under active thyroid have a strong chance of developing coeliac and that the blood tests miss a lot of people. This piqued my interest. He told me to go gluten free. I was hesitant to do this as if I was going to have any further tests, I would need to include gluten in my diet. I cleaned up my diet a little and cut down on gluten. During this time, I returned to my go and asked for another referral to a gastroenterologist. I seen the gastro in November. He again said that I have IBS but I convinced him to offer me an mrcp and an endoscopy. Had the mrcp done on December. This was entirely normal so no problems with bile ducts, pancreas or liver. Except a fatty liver and raised alt that I've known a list for 2 years. I've just had the endoscopy 2 weeks ago. He took samples from stomach and duodenum. Said I have gastritis and duodenitis but I return for my biopsy results and to discuss a colonoscopy next Monday. I'm hoping that they find coeliac in my biopsy. I know that sounds a little strange but for 9 months, I've been in daily discomfort and I just need a diagnosis so that I can get on with my life.

Here are my symptoms.

Constant tiredness.

Dry itchy skin and dry eyes that comes and goes

Very thirsty

Diarrhoea every Morning

Aching joints/muscles. Muscles get tired easily.

Abdominal pains mostly above belly button on both sides but feel it more on the left side. Sometimes twinges when I move in certain directions on left side only.

Headaches

Noisy bowels

Low vitamin D levels. Doc prescribed bit supplements

Beltching and lower gas a lot.

Bloating. Feel like a balloon being blown up and let down on left side of abdomen.

As you can see. Most of my symptoms fit for coeliac.

You guys have similar experiences of negative blood test but positive biopsy? I'm Interested to know how often this occurs.

Thanks for reading and apologies for the length

1 like, 15 replies

15 Replies

  • cherie48021
    cherie48021 leigh74005

    Posted

    It sounds like you have Caeliac. My symptons were not dis similar to your own. I had violent head aches and went hot and cold as one of my symptons. I went to the docs and found out after many blood tests i was lacking in vit d and B12. I was given vit d pills and injected every other day with vit b12. I had the laparoscapy and tge doc that did it said im typical of a Caeliac. I had nothing left in my intestine as gluten had destroyed it. It was confirmed i was Caeliac.Im now having probs with my back and am getting repeated bouts of Sciattica. Im booked in for a dextro scan 1st march to measure my bone density. They think i have osteoparosis caused by lack of vitamins. Hope this helps. Keep on to get ur diagnosis. x
    • leigh74005
      leigh74005 cherie48021

      Posted

      Glad to hear that you got a diagnosis. Was your diagnosis found by a blood test or by the endoscopy biopsy. Or was it positive on both blood and biopsy ?
  • lynda01728
    lynda01728 leigh74005

    Posted

    Ask for genetic testing. It's expensive and they don't want to do it but a lot of your symptoms fit the Coeliac picture. I had exactly the same situation and yet all tests coming back negative. I finally got a typical Coeliac rash all over my stomach and was offerd genetic testing which came back positive. The consultant said I am a 'text book case'.

    I'd gradually got sicker and sicker over many years. I couldn't see properly, poor balance, falling over, hyperventilating, aching joints,bloating, IBS,,,,,,,,,the list is endless. 

    I've been totally gluten free for 2 years and am now followinga FODMAP diet. I am at last starting to feel normal! It's a long journey but so worth it. You have to find out the truth.

    Good luck......don't give up. GPs are useless......no money to be made from Coeliacs (drug company incentives) insist on being referred to a gastroenterologist.

    Besy wishes

    Lyn

    • patricia_11100
      patricia_11100 lynda01728

      Posted

      I'm trying to figure out if I have celiac or gluten sensitivity . I had an endoscopy and it said I would have to go gluten free to see. Just wondering why people get tested for this since at the end of the day the only cure is to go gluten free. Just curious. Thank you

    • marg04364
      marg04364 patricia_11100

      Posted

      Why a medical diagnosis is important

      As coeliac disease is a serious medical condition with lifelong implications, a definitive diagnosis is essential. The gluten free diet is not a trivial undertaking and involves lifestyle changes and learning new skills such as reading and interpreting food labels. It should only be undertaken after the diagnosis of coeliac disease has been properly medically established.

      If a gluten free diet has already been adopted prior to diagnosis, the tests used to diagnose coeliac disease are unreliable, and can be falsely negative.

      By obtaining a proper diagnosis, you can be assured that your symptoms are caused by coeliac disease (and should therefore improve once the gluten free diet is established) and not by another more sinister condition.

      Additional benefits of diagnosis

      A strict gluten free diet has positive implications for health by reducing the long-term risks associated with coeliac disease. People who have been properly medically diagnosed are more likely to maintain the strictness required to remain healthy.

      In the future, it is likely that any potential non-dietary therapy for coeliac disease, such as a therapeutic vaccine, will only be available to those who have coeliac disease properly proven by biopsy.

      On diagnosis of coeliac disease, screening for complications and associated conditions such as osteoporosis or autoimmune diseases should occur. Being diagnosed appropriately will ensure this important medical assessment takes place.

      Immediate relatives should be screened for coeliac disease once a family member is diagnosed. A proper diagnosis will ensure this occurs.

  • patricia_11100
    patricia_11100 leigh74005

    Posted

    I have similar symptoms. When I had endoscopy it said on there that I could have celiac or gluten sensitivity but no one told me that. Had my gallbladder out but have never felt good since . I'm now goi g gluten free to see if that takes away the right side pain I have. If you have celiac you have to go completely gluten free. You can't just cut back. Good luck . It stinks not feeling good.

  • leigh74005
    leigh74005

    Posted

    Ah well. All my biopsys came back normal. Don't know what to do or where to turn now

    • marg04364
      marg04364 leigh74005

      Posted

      You said you had cut down on gluten. Maybe you were not having enough gluten in your diet before your gastroscopy? You could have the HLA DQ2/8 gene test. If negative then its not CD. If positive you would need to have another gastroscopy/biopsy but you need to be having at least 4 serves of gluten (equivalent to 4 slices of bread) a day for six weeks beforehand. Otherwise you could try just going completely gluten free and if you feel better..keep on that.
    • marg04364
      marg04364

      Posted

      Sorry it is not taken from the rash .. A dermatologist will take a small sample of skin from an area without the rash so it gives the right result.

      This skin sample is checked to see if you have the antibody called Immunoglobulin A (IgA).

  • leigh74005
    leigh74005

    Posted

    Do they routinely check for celiac when they take a biopsy. My gastro never said that they specifically checked for it.
    • marg04364
      marg04364 leigh74005

      Posted

      No they do not. This is one reason why it takes years for a diagnosis.
  • marg04364
    marg04364 leigh74005

    Posted

    You mention dry itchy skin.. it might be worth being tested for dermatitis herpetiformis.. this is a biopsy taken from your rash.. and normally done by a dermatologist so you need a referral from your dr. You would need to be eating gluten for 6 weeks prior.
    • leigh74005
      leigh74005 marg04364

      Posted

      Hi. I don't have a rash. I just get random itches all over. Some days it's really bad and some days it's hardly noticeable but there all the time.

    • marg04364
      marg04364 leigh74005

      Posted

      Hi again. it would b worth having a biopsy to check for DH still. You would need to b eating gluten beforehand. At least 4 serves a day for 6 weeks prior.

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