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Possible Coeliac but not sure what to do

Posted , 4 users are following.

linda1807
linda1807

Hi, I'll try to keep this as short as possible.

I was diagnosed with IBS approx 20 years ago, Narcolepsy and Fibro shortly after.

For years now I have suffered with digestive issues assuming it was IBS such as constipation/diarrhea, severe bloating, severe stomach pain etc and other symptoms I assumed was Fibro such as joint pain, fatigue, brain fog, numb legs/arms, reflux etc etc.

I've always known that wheat products make me bloat and feel ill but I recently had an attack that lasted months and my depression plummetted - I was barely able to get out of bed let alone function.

So I decided to cut out gluten a few weeks ago and the results were amazing. My stomach deflated, the pain went in my stomach, no reflux, the depression lifted, I had energy and my joint pain is finally going.

Brilliant! I guessed I have an intolerance to gluten so the remedy was obvious!

I then decided to find out what the skin rash was I kept getting on the sides of my fingers - ainful blisters that were filled with water, itched like mad and would take weeks to clear up.

As it turns out this skin rash is dermatitis Herpetiforus which indicates I could actually have Coeliac disease sad

Well as it turns out I've lapsed over the last couple of days as I was away and ate Gluten products - I am now in immense pain and bloated and really tired.

So now I would like to get tested for Coeliac but as I've taken Gluten out of my diet for weeks I have to do this Gluten eating for a few weeks apparantly in order for any test to be accurate.

The thought of doing this is making me feel really low, I could cry. I know I should have got tested initially but the thought of going back to feeling like this day in, day out like I have for the last several years is just too much to bare - even for a few weeks.

I'm wondering what the benefits are of getting a diagnosis as I know there's no cure other than eating gluten free - I don't need a diagnosis for that?

I'm sorry this is longer than I said it would be, I'm just really anxious about this. My doctor is rubbish anyway so I avoid going wherever possible but I may have to try new Narcolepsy meds if I am Coeliac positive (this will be beyond the scope of my doc and I live rural in scotland - no specialists within 100 miles).

Basically have any of you suspected Coeliac but chose to go it alone?

Were any of you in the same position as me having cut gluten out but decided to reintroduce for the tests?

1 like, 4 replies

4 Replies

  • lynda01728
    lynda01728 linda1807

    Posted

    Phew, this is all sounding a bit familiar right down to useless GP and my name is Lynda!

    After years of ill health and then around menopause all symptoms increased dramatically plus some new ones including dermatitis hepiformis my GP diagnosed depression and put me on meds. I got worse!

    Like you , I gave up gluten and I ended up seeing a gastroenterlogist. I had genetic testing which came back positive and because of my myriad of symptoms the consultant said I am 'a text book case of coeliac' and he confirmed diagnosis.

    This has not been good enough for my GP who still treats me as if i'm making up the symptoms but I barely go near the surgery now partly because 1 ear on I am very much better and partly because they are a waste of time and I can thank them for nothing.

    I have had to research a lot myself and be proactive in my recovery. I have had various setbacks along the way and still not totally there but so much better than I was.

    I also was suspected of having fibromyalgia but it seems to be more to do with the acidity in my body and a tablespoon of apple cider vinegar in water every day has helped immensley.

    I can only tolerate very small amounts of gluten free grains and not oats at all. I am also lactose intollerant. Yes, it is hard but it is worth it. At my worst I thought I was dying and when your GP just says you are depressed when you are actually ill it really doesn't help!

    I hope you get sorted soon and are on the road to recovery from this misunderstood and largely ignored illness. 

    Lastly, it is very important that you get diagnosis as Coeliac has lots of other health implications that are not associated with intollerance. The Coleliac Society is very helpful.

    Best wishes

    Lyn smile   

  • linda1807
    linda1807

    Posted

    You sound as cheesed off as I have been Lynda. I went about depression a few years ago but he made me feel worse than when I went in, it started my dislike of doctors. He admits he doesn't even understand the Narcolepsy I have sad and told me once that my daughters curved spines were nothing to worry about. Luckily I got a second opinion as they were both bad and one had to have rods fused to her spine top to bottom.

    It's really bad when we have to self diagnose isn't it.

    I have found through research that CD can in turn make you lactose intolerant and I've always believed I was LI anyway - I drink Almond milk instead.

    I am glad to hear that you have largely figured out your condition and got a diagnosis - hopefully you will eventually be pain free if not symptom free.

  • natcann
    natcann linda1807

    Posted

    Hi there

    Your history is so familiar to me. I was diagnosed eventually in 1998 but was ill for the previous few years. I also had joint and muscle pain and brain fogs. My family actually called them 'mum's fogs' and I had to go to bed until they passed. I still get fogs if I eat gluten by mistake . In fact it is the first sign that I have slipped up, although it is rare these days.I was diagnosed with M.E at first but luckily changed GP's when I moved and he tested me for CD. It was such a relief to find that I had a condition that I could control with diet after years of taking . (unnecessary)medication.I was interested in your Narcolepsy because I hadn't come across that as a diagnosis , but before I was diagnosed and went GF  I would fall asleep at the drop of a hat. On one occasion I was in a restaurent with my husband and daughter and I dropped off in the middle of lunch.It was a such a nightmare all those years ago but I felt normal pretty quickly after going GF.

    I do think it is important for you to be diagnosed because there can be other things that you may be lacking. For example they did a bone density test on me and found that I was osteopenic which can be the forerunner to osteoporosis  and is common with CD. I now have to take calcium and Vit D.There are other bits and bobs which your GP should keep and eye on if you do have CD. Good luck with it all. Let us know how you get on.

  • youngatheart1
    youngatheart1 linda1807

    Posted

    Oh my god, I have just come back from the walk in centre as I refused to see my GP again to be told there is nothing wrong, walk in centre GP said classic case of coeliac disease, have diverticular which was diagnosed last November and told to eat beige diet, bread, potatoes etc, I have been going to gp almost weekly since and told IBS, gerd etc etc, have spent so much money on tablets that do not work, now I know why. Unfortunately walk jn centre cannot authorise bloods test so need to get my GP to do them which should be fun. You cannot believe how happy this potential diagnosis makes me as beginning to drive family mad with constant illnesses. Now just need to see what I can and can't eat to see if it makes a difference. Have a great day
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