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Sam81

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Everything posted by Sam81

  1. Sam81
    I was on dapsone for 15 years for bechets syndrome but stopped taking it 2 years ago when i fell pregnant and aven't gone back on it - over the last year I have become symptamatic of dh but dr's don't listen. Im not symptamatic of bechets though! Will certainly look up the ap! Am due to see a dietician who wants me to go back to eating a normal diet because...
  2. Sam81
    Hello, I have given up on Dr's or they have given up on me, I feel like a mental head case and am being prescribed anti-depressants. For 3 weeks now I ave been gluten-free, and minimal milk. Can anyone tell me how long it takes/should take to see/feel benefit? Hives have gone, nausia gone, pain, bloating and gas - gone - bowel habits are bordering...
  3. Sam81
    I have very similar symptoms to you. Dr's have given up on me claiming I too am a hypochondriac and prescribing me anti-depressants. I have just attempted the gluten free diet - 3 weeks now and it's helping. whatever it is - it's helping. Good luck and keep smiling... ...if you can.
  4. Sam81
    Everytime I plan and attempt it I get a glimmer of hope that dr's may test for it so I don't start it! I haven't a clue were to buy stuff in UK so it's taking a lot of time planning - I don't want to be eating salad forever. I'm also vegetarian so that's adds complications in terms of protein or lack of it as all vege stuff is loaded with gluten and wheat...
  5. Sam81
    Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial. They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives. Apparently Hives urticaria don't last more than 24 hours... Not what I've read. Also, they...
  6. Sam81
    Just looked art the coeliac site - annoying you can't get access to everything without a medical diagnosis - how unfair is that!
  7. Sam81
    Thank you, that's massively helpful...
  8. Sam81
    I've decided to go gluten free as I feel Dr's have failed me. I am based in the UK and am also Vegetarian, it feels like a massive task as I've no idea where to start looking. Supermarkets have less than an isle of gluten free products and it seems to be all cakes, biscuits etc. Can anyone point me in the right direction please?? Thank you...
  9. Sam81
    Thank you, that's very helpful. Meats are a no for me as I'm vege and all the vegetarian stuff is packed with wheat and gluten! I will spend this week planning and buying and as of 08.10.11 will be gluten free... Here goes...
  10. Sam81
    Does anyone recommend those self testing kits? I think it's for me too - Dr's have really made me begin believing it is all in my head - stressed induced etc etc... Regarding diet - where do I start in the UK? Where do I buy gluten-free food?? Is all gluten-free food wheat free as well or is that something else?? How long before I know if diet is...
  11. Sam81
    I guess. I just feel lost, I don't know where to start, I'm vegetarian as well. I know my extended family won't support the decision and see me as just a pain in the arse. Things are different here and with no diagnosis = no help.
  12. Sam81
    Update: Dermatology have incorrectly biopsied my rash (celiac DH) and also told me it is likely to be eczema or psoriasis - despite link to food - they can't answer that. Gastro app today told me I have to go on low residue diet as it's IBS I am suffering with, not Celiac - it's all in my head. I am to remove fibre from my diet then drink fibogel ...
  13. Sam81
    As expected - damn useless. Told it's IBS and it's common - i am to go on a "low residue" diet. The rash is nothing to do with it, I can't cure the abdominal pain, bloating and nausea as well as curing the bowel issues - only one of these can be sorted and I am to remove fibre from my diet but then take fibogel to help. For a stomach guy he was very concerned...
  14. Sam81
    Hi guys - wanting to vent really. Seeing Gastro Intestinal people for the first time tomorrow and already feeling negative about it. Any tips?? I have fresh rash, migraines, nausea, numbness/tingling in hands all apparent. I just know I'll be told acne, eczema, stress and poor circulation - coupled with IBS...
  15. Sam81
    Isn't hives an allergic reaction to something though?? I'm not even getting that far - just told its acne/psoriasis or eczema!
  16. Sam81
    Thanks - that was REALLY helpful. Unfortunately having checked most of the ingredients in the house I can't see anything labelled Iodine... Think I'll just stick to salad and fresh veg - might help me shed some pounds too... This site really is amazing and full of fabulously helpful people - a god send and a massive THANK YOU!!
  17. Sam81
    Thanks, will give it a go then. And Iodine is reducing the amount of salt in the diet? Things in the UK aren't named Iodine - just salt!
  18. Sam81
    I'd like to try these theories out but with stomach people (hopefully) wanting to do an endoscopy - will limiting iodine affect the result of a biopsy done on lower intestine?? If not I will attempt it immediately!! This rash is driving me nuts! Also I'm in a place where everything I try seems to be "excused" by Dr's as a coincidence!
  19. Sam81
    Will do. Consultant also said rash on my face is acne! Having looked at the biopsy sites today it actually looks like she's taken 2 biopsy's of the rash not one of clear skin so I don't hold much hope for a valid test. Was also told lot's of rashes respond well to Dapsone. Oh, well - feeling very deflated . Next appointment is beginning of October with...
  20. Sam81
    Ok, had dermatology app yesterday. Didn't see consultant first - saw registrar. She thought it looked like DH but didn't seem to know much so got consultant to look. He said it DIDN'T look like DH - some form of psoriasis or eczema, but basically took a biopsy to shut me up. The took one of clear skin (i think) and one of affected skin. I'm just...
  21. Sam81
    Ok, had dermatology app yesterday. Didn't see consultant first - saw registrar. She thought it looked like DH but didn't seem to know much so got consultant to look. He said it DIDN'T look like DH - some form of psoriasis or eczema, but basically took a biopsy to shut me up. The took one of clear skin (i think) and one of affected skin. I'm just hoping...
  22. Sam81
    It's 4 days to my LONG awaited appointment with a Dermatologist. I am determined to get a biopsy done on that day of my rash but am curious as to what they test it for? Is it the same as the blood test? (not that that has been done properly...). was just curious and am trying to soak up as much knowledge as possible as I really am fed up of being fobbed...
  23. Sam81

    ARCHIVED Iodine And Dh

    Sam81 posted a topic in Dermatitis Herpetiformis

    I am posting this in the DH section as IF I have celiac - it's DH. I've had NOTHING for breakfast except a cup of what I call "Posh Coffee" (sachets of flavoured coffee - my treat most mornings) and within 45mins to an hour my rash is full on and driving me insane. I know with some DH sufferers they need to limit Iodine which is in most Salt. Could my...
  24. Sam81
    Will do, dermatologist is 11 days away and counting...
  25. Sam81
    I am not gluten free yet as I've been told not to until skin biopsy and endoscopy, Im keeping a food diary purely to illustrate foods high in gluten and wheat are setting me off. Dapsone did seem to supress everything for me - I just thougt it was behcets - not DH. Rash did go though... Sorry Rosetapper23, - just realised you were replying to Fancy...
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