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Sam81

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  1. So sorry for your frustrations!! One thing you need to know is the DH sufferers are the most sensitive to gluten. You need to be taking Dapsone to effectively deal with the rash. You'll need to have your blood checked every couple weeks to monitor but it's worth it. I only needed to take the med's for about 2 months and now only as needed if I accidently get glutened. I have been on the diet for 2 years now with DH and the rash comes and goes and really let's me know if I eat the wrong thing. Stay strong and be vigilent about reading labels. Get the "Is that Gluten Free?" app. It's also been a life saver. Let me know if you have any more DH questions. I completely understand!!!

    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 they're convinced it's IBS. Should I do that or remain on gluten-free? Sooooooo confused!


  2. 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 on normal. Rash on bottom is persistant, still some headaches/fogginess etc, and shortness of breath.

    Because some of the symptoms are still around I am beginning to doubt myself. If I were to overload on wheat and gluten at this point - could it fire a response clear enough for me to believe - one way or the other?

    Another question would be how long before all symptoms go??

    Thanks in advance for all your help...


  3. My first thought was that I had a food allergy but I didn't have typical symptoms. Either way, I did stop eating the bars that were causing me trouble. I had to because I ate them in the morning so they pretty much ruined my whole day. At my checkup the doc told me my sinuses were inflamed which was a surprise. I have post nasal drip, tinnitus, and ear congestion (that she didn't see), but not a runny/stuffy nose. She gave me Flonase but I haven't improved. I think the Flonase makes the tinnitus worse and I've mostly stopped taking it. The flesh in my nose is completely red. My reflux came back and even though I started Prilosec it didn't help. I've never had heartburn, just chest pain, reflux, and tight throat. I stopped taking the Prilosec a week ago because I was afraid it might contribute to malabsorption of vitamins/minerals if I was deficient.

    I've been doing a lot of research on Celiac disease and the connection with multiple sclerosis and it seems like I might be one who would have to eliminate dairy as well. I eat a lot of dairy. My mother has an appointment next week and I asked her to get the antibody panel for Celiac. She agreed. I'm in the middle of our "cheat weekend" right now so I'm eating a lot of gluten. I have to go back to low carb for my weight issues but I will probably still be eating some gluten and a lot of dairy. Maybe I could start eating the gluten bars before I go to sleep.

    My symptoms are so severe I will be dumbfounded if they find nothing unusual in the CBC/electrolyte panel. I already know if my periods get any worse I'm likely going to end up in the ER. I almost passed out, several times. I literally felt like I was bleeding to death. My problems could be caused by the copper IUD but it makes sense that having Celiac could have had an impact on a copper/zinc imbalance. It would also explain the parasthesia I was getting before the IUD, not to mention my entire life.

    When I was pregnant I kept telling the doctors I was having persistent pain under my ribs (left side). One doc said, "There's nothing there. That's just your intestines." So, I thought "doh, gas". After pregnancy I continued having the pain but it was on the right side (mostly). That's why they did a full abdominal ultrasound (normal). Now it's just extreme bloating and intermittent cramping, particularly in the upper abdominal area. It almost feels like I'm pregnant again.

    My brain fog is also extremely disturbing although it's slightly better when it's not that time of the month. I have it ALL the time in differing degrees of severity. It makes me want to crawl in the bed and close my eyes just to try to escape it.

    I'm constantly dehydrated. No amount of water helps. It just goes in and comes right back out. Before I thought of Celiac I assumed I might have an electrolyte imbalance so I also asked for a blood test for that. My hair falling out is freaking me out too. My scalp is dry/scaly and sometimes I have a weird burning/painful sensation. I have muscle tension in my neck/shoulders that also burns. It's the strangest thing.

    My mother truly believes something is wrong with me. She told me to listen to my instincts and don't let the docs ignore me. She used to tell me to get over it (lol)! I really hope she tries out the diet after her test. She supposedly has remitting/relapsing MS but I swear she seems worse every time I talk to her. I'm so afraid it's some kind of dementia that's getting worse. It will be so hard for her to do the diet because she is over the top crazy about bread. She once told me if that was all she could eat she'd be perfectly happy. =(

    I've been reading through threads here and everything seems to fit me so well. I ran across a post with a picture of a baby who had "allergy cheeks" and it looked just like my son. He often has those red/splotchy cheeks, particularly after eating. His breakfast, snacks and some of his "convenience" meals contain gluten. My end game plan before I ever heard of Celiac was to convert to a Paleo type diet for the whole family so I will only have to struggle with the dairy part. My son is too little to care and my husband has been doing low carb with me. I'm fairly certain if I had never started a low carb diet I would never have noticed the relationship between food and how I feel.

    It will probably be a while before I see the GI doc and neurologist, maybe a month. I will be checking in here though. =D

    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.:rolleyes:


  4. have you tried going gluten free to see if it helps?

    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. I'm being referred to an immunologist for akllergy to wheat. I'm going to ask for a rhematologist - even if i play on the behcets angle... ...been a while since they checked me out anyway...

    I just feel like bechets and lupos are not real - you can only manage them - not cure them... Does that make sense to anyone?

    I certainly dont mean to offend anyone by that statement - My family can't accept them. They laughed when I told them.


  5. And you aren't a head case.

    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 have done a RAST test for allergy to wheat... All because I stamped my feet. They now think I'm mental...


  6. Hi Sam, I'm in the UK also & my husband and son have coeliac disease. (although not veggies)

    It does feel like a massive task at first!!....but it really does get easier in time :)

    Concentrate less on the 'free from' aisle which is mainly alot of over processed sugars and carbs and think more of going back to basics. Natural foods, made from scratch.

    Jacket potatoes, salads, stir fry veg & rice, soups are all good starters .

    Alot of your time at first will be spent reading labels, but you get to know what's ok and what's not, cutting down on your shopping time.

    You might want to consider joining Coeliac UK http://www.coeliac.org.uk/ who supply members with a handbook with lists of 'safe' food products ( invaluble at first! )

    For specific UK brand questions this board is very helpful too http://members2.boar...com/glutenfree/

    There's loads of information here & lots of veggies who I'm sure would be happy to help you with ideas and recipes.

    Good luck!! :)

    Thank you, that's massively helpful... :)


  7. Give it a good three months or so. Go with as much whole food as you can, meats, chicken, eggs, rice, potatos, veggies, beans, fruits are all gluten free in their natural state. Gluten free food is going to be food without wheat, rye, barley or oats. Here in the states we have gluten free food in both grocery and in health food stores. You may want to ask in the products section where to find the best stuff in the UK.

    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...


  8. 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 working - should i allow a week, a month, a year... Such a massive thing!


  9. 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 (go figure). It's impossible to cure abdo pain, nausea and trapped wind as well as curing bowel issues - only one can be helped - I must decide which. He's refused to do endoscopy and will review in 4 months to change fibogel for something else if it hasn't helped.

    I left in tears, very down and sad tonight. No-one seems bothered with the "Hives" I get on my legs which as far as i've researched looks likely to be caused by an allergy to food. Dr's are happy to say mouth and throat ulcers are bechets related even though I have no other symptoms and no-one seems bothered about the tingling/numbness in my hands, the migraines/headaches, fatigue, irritability, rash, weight gain (despite regular exercise and eating healthily).

    Oh well...

    :(


  10. 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 with the bowel, refused to do an endoscopy will see me again in 4 months to change fibogel for something else if it doesn't work. Celiac (coeliac as it's called here) is all in my head.

    I'm devastated and feel lost and very down....:( Did I mention I feel like a head case??


  11. 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...


  12. Google "thyca" and read the diet guidelines.

    Thanks - that was REALLY helpful. :D 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!!


  13. No. Iodine takes away one ingredient needed for the rash to erupt. Don't know how it will work if you're still choking down gluten, though.

    Until you go gluten-free that rash is going to be bonkers, best guess. Try reducing iodine and see.

    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!


  14. Have you drastically reduced iodine and had positive results? I don't know of any other rash that responds to gluten/iodine withdrawal (if anyone does know of one I'd

    love to know). Iodine allergy responds to iodine... But that's easy to test for.

    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!


  15. Unfortunately that is probably typical of most dermatologists. The Registrar knows more about what DH can look like than the consultants or the Dermatologists do. It is very common to be told it is not DH. But then to have the gluten free diet clear it up. I lived with the damn rash scarring my face and 3 chiefs of Dermatology told me it is neurotic excoriation....caused by me. Yeah, caused by me....ON GLUTEN!!!

    I hope they did your biopsy right...and I hope you will let us know the results.

    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 Gastro people...


  16. 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 they test the right one for the right thing!


  17. 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 they test the right one for the right thing!


  18. 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 off!

    Thanks to all you wonderfully clever people!


  19. 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 coffee be sparking me off?? Here are the ingredients. I know some E numbers contain iodine and have tried investigating the E numbers in my coffee but I can't fine the stabilising ones anywhere! This list is gfor a Vanilla Latte but I also have Caramel and Mocha's - Ingredients for Vanilla are:

    Sugar

    Skimmed milk powder

    Hydrogenated Vegetable Oil

    Instant Coffee (10%)

    Dried Glucose Syrup

    Lactose-Whey Permeate

    Lactose

    Flavourings

    Thickener E466

    Milk Proteins

    Stabilisers (E340ii, E452i, E331iii)

    Salt

    Thank you to all you helpful people!! Please feel free to look at pictures of my rash in my other post titled "pictures of my rash" - funnily enough... :huh:

    Incase it's relevant I live in the UK.


  20. 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 Nancy!!