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grommet

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Everything posted by grommet

  1. grommet
    It could be gluten intolerance as opposed to celiac disease? At the moment as you know, the gold std for diagnosis of celiac disease is positive biopsy. but if this comes back negative, you are often not diagnosed with coeliac disease. So, what do you have? Far be it from me to put words into the OP's mouth but I think he was saying you would not be...
  2. grommet
    Another one here - gluten makes me very poorly - not just gastro symptoms. I had negative bloods and negative biopsy. Would I ever develop celiac disease - I don't know. Consultant not prepared to diagnose me with anything so am self diagnosed as gluten intolerant. 3 other members of my family are also ill from gluten so there is something genetic there....
  3. grommet
    It is crap that we have to eat what is making us ill to get a gold standard diagnosis, but you are setting yourself up for an inconclusive result if you go gluten-free now. Make the best of the time you have left to eat what you want when you want. KFC, Pizzas etc, cos you'll never have 'em again. I had been gluten-free for 2 years (not knowing anything...
  4. grommet
    Hi Jason, I only started being gluten intolerant in my late thirties/early forties. This was after a miscarriage, an ectopic pregnancy, an op to be sterilised i.e. a series of hospital visits. My brother only started after a bout of glandular fever. My mum started at age 65 - not sure of one particular trigger but she has been ill probably since her forties...
  5. grommet
    I'm without a diagnosis by the way ( I have had negative bloods (when gluten-free) and negative biopsy(7 weeks eating gluten after 2 years gluten-free). But, I have a terrible reaction (apart from the obivous gastro symptoms) when I eat gluten: joint pain, fatigue, anxiety, palpitations, twitchy legs, night sweats some of this seems to be an autoimmune...
  6. grommet
    sorry - I didn't mean to get at you personally. I hope it didn't come across like that. I was really trying to understand what a diagnosis (or not) means in the US. I'm sure you are very welcome on this group and will get lots of good advice.
  7. grommet
    I know that we all want a proper diagnosis so that we can confirm we are not going mad, but surely this is not just about what we call ourselves and whether we can join a forum. Having a Gold diagnosis of Coeliac within the UK means (possibly) follow up appointments with a nutritionist, follow up bone scans, follow-up vitamin injections, other members...
  8. grommet
    Oh - I agree, that's true. I was partly gluten-free and had negative bloods, I did the gluten challenge and had negative biopsy. I have now been gluten-free for 2 years, and would not do another challenge, so I'll never have another biopsy and will therefore never get a diagnosis. So I will never be diagnosed Coeliac by the gold standard. Gluten intolerant...
  9. grommet
    Yes - every symptom (apart from the migraines). There is a definite pattern when I've eaten gluten. The first indication that I've eaten gluten is twitchy legs. Then the burping then the feeling sick, then night sweats that night, sicknss and D the following morning, (when I can wake-up/get up because of the tiredness), then the brain fog and aching joints...
  10. grommet
    This used to confuse me - the "no autoimmune response ". I'm gluten intolerant (negative biopsy). I have no other autoimmune diseases causing a leaky gut, but I definitely have what I would call an autoimmune response. e.g. twitchy legs, nights sweats, brain fog, aching joints, depression, extreme fatigue, brain fog, sometimes migraine. I also have malabsorption...
  11. grommet
    You may want to have a look at this Open Original Shared Link. It's a link to a write up on SIBO and a few messages from a UK based Coeliac forum. Best Wishes in you endeavour to find out what is causing your problems.
  12. grommet
    Jenny you raise some interesting points. I don't have answers by the way - just further musings I've not been diagnosed with celiac disease (neg bloods neg biopsy). My Gastro did not recognise GI so I diagnosed it myself. wish I'd just gone gluten-free straightaway when i suspected it was that that was causing the problem. Any ho hum... However...
  13. grommet
    I think it is always surprising to people that even some symptoms they did not suspect were to do with gluten - go away when gluten-free. I'm glad the secondary issues are getting better. I could cope with eating gluten if its was only the sickness and D. It's everything else i find difficult, seriously affecting my quality of life, and ability to work...
  14. grommet
    Hi Trillian, I agree with Ravenwoodglass and lonewolf that I wouldn't be too quick to dismiss the fact that you cannot have malabsorption symptoms with gluten intolerance. I too am self diagnosed after having neg bloods and biopsy i.e. I respond when to the diet I've suffered joint pain, migraines, miscarriages, brain fog, depression for many years...
  15. grommet
    What - no comments? Perhaps you couldn't be bothered wading through the whole email. I particularly thought that the comment re "pathological or functional symptoms" is extremely interesting. Does eating gluten *just* cause Sickness and D, or does it cause problems to the immune system from a leaky gut? I think the distinction on this will be just...
  16. grommet
    This was recently posted on one of the UK boards. Some of you may find it interesting. There appears to be more than one type of “Non-Coeliac Gluten Sensitivity”. Most commonly an IBS-like, functional bowel disorder which causes symptoms which are dose related. These people feel better avoiding wheat but do not have to avoid all traces of gluten. But the...
  17. grommet
    I too had terrible night sweats and itching. Used to make myself bleed sometimes in the night with scratching my legs in my sleep. I too thought it was perimenopause along with other things that were happening. All gone now I'm gluten-free. (undiagnosed) A tiny tiny bit of cross contamination means its like taking a tranquiliser at night but any more...
  18. grommet
    Thanks for your reply. I was just interested how other people were getting on. Perhaps I should have posted in the "post-diagnosis" forum and see if I got a few more responses. Perhaps I should ask for bone checks. I used to have joint pain after eating gluten (like a flu ache joint pain) but I get other aches and pains now. Might be just my age but I...
  19. grommet
  20. grommet
    I know there are many on here who have had a negative biopsy and who think they are Gluten Intolerant and/or Celiac. Like me you know you have an immune response when eating Gluten and respond well to a gluten free diet . It's not really been a choice to go gluten free as eating the stuff makes you too ill. I just wondered how you now feel looking back...
  21. grommet
    I had mine awake - although becasue I'd been eating gluten for several weeks I was half asleep anyway. I didn't want to be groggy for the rest of the day, and wanted to get on with the rest of my life. Biopsy day was a sort of celebration day for me - the end of eating gluten. It's not pleasant but if you are good at relaxation techniques and can switch...
  22. grommet
    Just a thought on the nachos. It may be nothing to do with the corn itself. Although there may be no gluten IN the snack, the are often produced with other snacks in a non gluten-free environment. This cross contamination is enough to make me very ill.
  23. grommet
    Jay, There are a lot of us in the same situation. By the way I am in the UK too (post on a uk based board as well as this one). By "the same siutation" I mean that gluten causes us a problem but we have not been diagnosed wioth celiac disease because the biopsy was clear. The UK medical profession do not seem to accept that there is a broad spectrum...
  24. grommet
    I'm not disagreeing with anything you say by any means, and I'm not asking you to answer this but, what I can't fathom out is this. If we are defining coeliac by gluten-induced villi damage, then why does the villi damage make a difference? If you don't have celiac disease, and don't have villi damage, but still have gastro as well as neuro issues, malabsorption...
  25. grommet
    I too thought I had celiac disease. I had plenty of symptoms, sickness, diarrhoea, fatigue, aching bones, migraines, miscarriage, 3 other family members with similar symptoms that have been going on for years and years. Various diagnosis including IBS and Chronic Fatigue Syndrome. I have done an exclusion diet and know I react very strongly to the slightest...
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