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UKGail

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Everything posted by UKGail

  1. UKGail
    Hi, it sounds like you have answered your own question - you do seem to have gluten sensitivity. Although you may not think your reactions to taking up gluten again may be strong enough to worry about, you are just 18, just a couple of years younger than I was when I first had similar problems to you. I am now 47, and not having the ability to search and...
  2. UKGail
    A couple of things come to mind: You mentioned an upper GI - did they take any biopsies, or just have look around? Celiac is not usually apparent until tissue is examined under a microscope. Even if they did take biopsies, as you don't have antibodies, any villi damage is likely to be patchy, so they could easily have missed it. Soy or other intolerances...
  3. UKGail
    Get well soon. I guess at least you know now!
  4. UKGail
    Me too. I have negative blood tests, had a negative biopsy 2 years ago (after being gluten lite for a little while). Doc told me not to worry, I didn't have celiac, and I should eat a normal diet. I did, and my health continued to decline rapidly. I am now gluten free and am much better, but after 5 months my health is still nowhere near back to where...
  5. UKGail
    I agree with Richard. The most important thing is to stop meals becoming a battleground, as the emotion of the battle can easily overtake the need to eat. Give her a small meals, plus regular snacks. No options. No pleading if she ignores the lot, just take it away after a reasonable time has elapsed. While she is eating, if it just her, you need to be...
  6. UKGail
    Fascinating discussion here, and the article posted by AVR was very interesting too. A friend of mine is a leading liver doctor, who specialises in alcoholic liver disease. He insists that individuals have varying degrees of susceptibility to alcoholic liver disease. He has patients in end-stage disease who have consumed the same amount of alcohol as...
  7. UKGail
    Sorry, but I am with Strawberry Jam. This is exactly how I feel after exposure to gluten. My main, and first, symptoms are extreme fatigue, migraine and joint/muscle aches, plus my body thermometer seems to go dodgy for a day or two. However my reaction is fast, and gastro symptoms follow after 24 hrs (and are quite mild by the standards of this board)...
  8. UKGail
    I couldn't use these as hot gluten burns my sinuses, (I had chronic sinusitis which is only very slowly subsiding now I am gluten-free). If I don't get away from the smell sharpish I start to get "glutening" symptoms. I guess this might be a wheat allergy reaction, but I haven't been able to have any tests for this yet.
  9. UKGail
    My head starts to swim, eyes get blurry, and I can't think straight. Migraine then starts up round the base of my skull, spreading into my neck and shoulders. I ache all over and feel like I have the flu. Limbs feel like lead weights. Zero energy. Heartburn. Then grumbly abdominal pain. Nausea. Unable to eat. 24 hours later D starts, usually bright...
  10. UKGail
    What a rotten girl to so undermine your confidence when you are dealing with a big change in lifestyle. I too think you were just unlucky with her, and that there will be plenty more caring, sensitive girls out there. I have never been to India, but I have friends who are indian born and raised, and our family is a big fan of indian cuisine. Our friends...
  11. UKGail
    I find this thread quite interesting as I have suspected that my eyes are affected by gluten, but it is quite a subtle effect, not the major changes the OP describes. As I was getting sicker with Celiac, my eyes were also deteriorating, and I was also having trouble driving due to perception problems and difficulties concentrating. I had new stronger glasses...
  12. UKGail
    Great post - full of interesting stories! I gained about 30 lbs in the last year or two as my health declined, due to stopping exercising and constantly eating carby/gluteny foods to stave off nausea and hunger cravings. This switched to weight loss about a month before I went gluten free as the gastro symptoms kicked into high gear. The weight loss...
  13. UKGail
    Raven - like many other answers, I also thought thyroid issues and insufficient nutrition were most likely to be the root cause of your problems. If your main meal is often just a quick fix meal based on gluten-free bread or similar, then not only is it likely to be insufficient in healthy nutrients, but it might also be aggravating your delicate celiac...
  14. UKGail
    I have 2 (of 3)aunts on my Mother's side, one of which has also thyroid issues, the other had another nasty auto-immune disease which thankfully resolved prior to diagnosis, 2 cousins, one non-celiac cousin's child - all confirmed celiacs. There is also me - non confirmed celiac/severely intolerant, a gluten and lactose sensitive mother, a severely lactose...
  15. UKGail
    Hi, I'm also in the UK, and my GP was also not very alert to the non-classical symptoms. However there are many celiacs in my family which was a pretty strong clue. I only had vague non-specific abdominal pains, but I was suffering from migraines, which had gradually spread to my neck and shoulders (I always thought this was due to having been injured...
  16. UKGail
    I know of one celiac specialist who also thinks that long-standing celiac disease may result in sero-negativity. You might also find the following link about sero-negative celiac disease useful. It is not completely disheartening. There are some doctors who are thinking about this issue. Open Original Shared Link Prickly - my journey is pretty...
  17. UKGail
    Navigator has a good point about the scope being useful to rule out other things. I too have other symptoms which are still bothering me (which weren't a problem when I had my first scope 2 years ago), so I am now considering asking to see a gastro-enterologist again to have them checked out. This will inevitably mean a decision on whether to eat gluten...
  18. UKGail
    Unfortunately you need to be eating plenty of gluten for the biopsy. I had a biopsy 2 years ago, and was gluten-lite at the time because I instinctively felt better that way, after having been in hospital with nil by mouth for a while. The biopsy was negative and I'll never know if it was due to my gluten-lite diet or if my villi were resolutely intact...
  19. UKGail
    I have stood exactly in your shoes. I had known for about 10 years there was a risk of Celiac because of a family history of it, but had always tested negative, so I kept eating gluten. My health continued to go downhill pretty rapidly and my doc scared me by by saying he thought I might have a connective tissue disease and sent me to a lupus specialist...
  20. UKGail
    I was getting painful swollen hands and lower arms, and also throbbing patches of varicose veins in my legs this summer before I went gluten free. I don't get DH, but I was getting rashes with at least an element of photosensitivity this summer too. My doctor sent me to a rheumatologist, so it certainly can be an autoimmune thing, and that seemed...
  21. UKGail
    I completely understand. Its hard for anyone to understand unless they are walking in your shoes. Only after seeing me flat on my back after a quick visit to the bagel shop (for my daughter not for me) did my husband begin to think that maybe I wasn't being overly cautious about the dangers of airborne gluten, which seems to affect me, but doesn't affect...
  22. UKGail
    I have to admit that I get a bit annoyed about anyone, and especially doctors, being precious about whether someone is technically celiac or not. With a significant level of negative blood tests (10% in the experience of one celiac specialist), which are later confirmed by biopsy, and with the biopsy itself a bit of a crapshoot as it is acknowledged that...
  23. UKGail
    Our family is riddled with biopsy confirmed celiacs, but I am negative to the blood tests. My doc was more concerned about ruling out lupus or similar conditions than pursuing a biopsy, so I am already happily gluten free without biopsy confirmation, but I wouldn't neccessarily recommend this route. A leading coeliac specialist in the UK thinks that...
  24. UKGail
    me too. plus most of my team of middle-aged women also have one, all of us with no noticeable problems.
  25. UKGail
    Prickly, I think you are sadly probably right about getting complacent (or dumb). I started enjoying myself eating more gluten free baked goods and started slowly going downhill again. Then I got dumb and went to the bagel shop to get a toasted bagel for my daughter. Waiting in the bagel shop for 5 minutes got me good. I was ill for days, not well for...
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