Gluten intolerance, coeliac, something completely different??

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Looking for some advice really...for going on a year now I have felt rubbish. It started just having to go to the loo more and extra wind but has progressed to a whole list of symptoms.

I suffer from periods of extreme fatigue, I have noticed a coloration between eating and this happening. At first I thought this was happening as my sugar levels were low but then after making notes of when i eat, when I have a tired period its more after I eat. I'm not even talking like 'oh, I feel sleepy, yawn', I actually struggle to keep my eyes open. Which is just plain embarrassing when at work and I'm sat at my desk looking like I'm slacking off catching 10. When it happens whilst I'm at home I end up just falling asleep for approx 20mins, mainly just cause I allow myself too as its less energy to just fall asleep instead of fighting to keep awake. I have mood swings like you wouldn't believe, increased irritability, acne like spots appearing over my shoulder and chest..which I have never had, spots yes on my face but never acne, weight gain & an extreme struggle to loose anything..infact I have only properly managed to loose a couple of pounds after months of healthy eating and dropping my calorie intake.

I have been to the doctors and have for many years been tested for problems with my thyroid as it is quite prominent in my neck...yet all tests have come back clear each time. This includes an ultra sound on my throat. I have also recently had blood tests and fasting blood tests which again came back all clear. From that I feel the doctors have just dismissed me, their tests have come back clear and that's that basically. I just feel like I'm loosing the battle. I just want to know what is wrong with me and get on the road to recovery!

After looking around online and looking at the patterns I am having my symptoms I am swaying towards a gluten intolerance/coeliac disease. Are they the same thing? Where do I go from here? Do I just cut it all out and see how I feel and then go back to the doctors with evidence? I wouldn't even know where to start! After looking at lists of can and cant have items I feel lost. Could it be something totally different?

I get it's not an easy thing to diagnose and everyone is different and bodies react differently to things but I'm just looking for any advice. Anyone? Feel like a total alien at the min when I cant understand what is happening with my own body!

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4 Replies

  • Posted

    If I were you I would go soon to my GP and request a blood test for Coeliac Disease. You could well have it, because I went through all that sleepiness and exhaustion. If the blood test is positive, I would then keep eating gluten until I have had an endoscopy. Knowing what I know now, I would ask the doctor for an urgent one, not so much because you are in mortal danger, but because if you cut out gluten at that stage, you stand to possibly get a 'negative' result from the endoscope, because your gut will have experienced some recovery of it's villi function. That's the reason you want to get one as quickly as possible. Have you had the iron levels in your blood looked at?  Mine were very low indeed. I actually lost a lot of weight before I was diagnosed too, so your weight gain is a bit of a curved ball for Coeliac but others on the forum may have had that, I don't know. Best of luck.
  • Posted

    In my experience, you need a blood test asap before going off gluten as MaggieBgood replied.  My iron levels were very low, also headache, brain fogginess etc.  I took years to get diagnosed because I was inclined to put on weight than losing it, which is not normal, but does occur.  If tests come back neg, you still could have an intolerance, but need to have the tests.  Also if it is coeliac, in NZ I get my flours, pastas + with a prescription, which drops the cost of buying them by nearly half, so well worth while knowing.
  • Posted

    Thanks guys, I am going to the docs as soon as just didnt know what to do in the mean time. I have been tested for iron levels too and have tried taking extra iron vitamins which didnt help. It's just so fustrating feeling like utter rubbish and the doctors not been able to do a great deal! 
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