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fairydust81 added a topic in Celiac Disease - Coping WithI'd Expect This From A Non-Coeliac - But Not A Fellow Coeliac!Having only just being diagnosed I'm still trying to come to terms with things and preparing for a gluten-free lifestyle after my skin biopsy on the 14th.
All the people I work with and my family have been great, really supportive, asking lots of questions and looking round the supermarket for food they can prepare for me when I go and visit them - at barbecues etc.
A woman I have never met, who works with my husband, was discussing coeliac with him last night during their shift, apparently she has coeliacs disease. He was telling her about my symptoms and how I'd been diagnosed and she said that I must be making it up, apparently there is no way that my rash is anything to do with coeliacs - there is no such thing associated with it! This is from a woman with coeliacs - she is also very lucky in that most shifts she works she is able to go and eat in McDonalds - as yet I have not found a single thing in McDonalds that I can eat that is gluten free - yet she has absolutely no reaction - I know I shouldn't judge her but she has really upset me - my husband basically told her that she must be more medically trained then than my GP, rheumatologist and dermatologist!!!
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fairydust81 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsPositive Coeliac BloodsSo I'm guessing then that the likelihood is I do have coeliac and this awful 11year old rash is the associated DH?
Found out today (unofficially as I work in the building where the labs are based) that my coeliac bloods are highly positive :-(
Feeling somewhat elated that after 11 years I have an aswer but then downhearted that after my biopsy in two weeks I'm facing a huge lifestyle change with regards to what I eat, how I cook etc....scary
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fairydust81 added a topic in Celiac Disease - Coping WithHaving A Bad Time (Very Bad Flare/reaction)Hi everyone,
Since joining this forum a few days ago I've found it to be so so helpful. Lots of information and guidance and helpful advice.
Well my RAST results (wheat allergy) and coeliac antibody panel test results are slowly starting to filter through. Only one that's on the system so far is anti-IgA which was 1.7 but at present there are no reference ranges so I have no idea what that means at the moment. None of the others were there before I left work so I'll ask again tomorrow. Just getting so impatient and I want to know if my bloods have shown anything or not. I kind of hope they do so I know it's not just in my head.
I feel awful today, extremely tired, in the grips of a bad headache which I've had since the weekend (after I binged on gluten/wheat containing products in an effort to show the doctor on Monday exactly what happens when I do eat the stuff)....skin rash is just awful and has now started to appear on my face, arms are painful around the blisters and as one patch heals another patch starts to form (aaaaaaaaahgh and they're so itchy!!), I do find piriton (in the UK, maybe called something else in the US) slightly helps with the itching...I just feel like my head is being squashed and my chest (I have had asthma since I was a baby) is playing me up making me feel quite breathless....I'm dying to cut out gluten but I know I can't yet until I've had the skin biopsy on the 14th...Just worried that nothing will show up....
I am wondering now if lactose intolerance is linked? When I was a baby I was lactose intolerant and spent my first couple of years on soya milk, something I did grow out of and drinking cows milk etc doesn't make me sick (at least I don't think it does????)
This has just been going on for 11 years (that I can remember) and I have had enough now, I hate going back to the doctors asking if it could be this, or that, but this time I am convinced that this is coeliacs with the typical rash DH - everything fits and all my symptoms all fit together to form one large answer - it's just took 11 years to piece everything together (especially as I've had other medical issues such as endometriosis)
Sorry for such a long post, I feel completely drained and am lay on the bed with my kitty and my laptop trying to get rid of this headache - I'm taking hydroxychloroquine for the arthritis and I've taken tramadol and paracetamol but still the headache persists :angry:
Thanks for all the support you've given me so far - I'm so thankful to know I'm not alone and I'll feel so much better once I know for sure...
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fairydust81 added a topic in Dermatitis HerpetiformisNot Yet Diagnosed But Gp 99% Sure I Have Dh & CoeliacI'm new here so still navigating my way around the boards. I have been suffering with my skin for 11 years (along with other symptoms) and have had many diagnoses including eczema, latex allergy etc.
My skin is at the worst it's ever been and the intense, painful itching is driving me mad. My GP looked at the rash and said he thinks it's linked with Coeliac but still isnt sure, I've had bloods taken today to test for wheat intolerance and coeliac antibodies.
Anyway I've attached a couple of piccies of my rash (as it is today) and when I have my skin biopsy done on the 14th July I'll be showing these photos to the dermatologist (as you can guarantee my skin will look less angry when I go), does this rash look like a typical DH type rash?:
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fairydust81 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsPlease Help - So Many QuestionsHi everyone,
I'm new here and found this site after googling for more information. I have not yet been diagnosed with Coeliac disease however it's looking more and more likely that this is what I have. I'm off to the Docs in the morning with my food and symptom diary with a plan of having my bloods done.
Basically here's a little about me:
I'm 29 and from what I can recall I've probably been suffering with symptoms since I was around 18. However, this has been masked by the onset of severe endometriosis from the age of 13 - as a result of this condition i have had many laparoscopies and two years ago underwent a total hysterectomy with removal of my ovaries. During the hysterectomy the gynae noted that my bowel was attached to my abdominal wall and was in a mess, and if I had further problems I was to see a gastroenterologist - I;ve never really thought about my symptoms as being related until recently and suddenly it all makes sense and is all fitting together.
My symptoms started off really mild, irritating itchy rash on my arms, legs and scalp that was at first was diagnosed as scabies, then I was told it was eczema, then I was told it could be to do with my arthritis (I was diagnosed with a rare form of arthritis in January this year) and i have tried so many treatments all to no avail. I have always suffered with my bowels, spasming and cramping pains (truly horrible), bloating, constipation interlinked with diarrhoea. bad trapped wind and indigestion. Also suffer with headaches.
Just recently the intense itching is driving me insane, the rash is like clusters of red blisters which when scratched ooze a clear liquid, just horrible. It almost feels like I have tiny little creatures crawling all over me - at the moment my arms, shoulders, neck, scalp, back and legs are insanely itchy and I doing my best not to scratch them. i have so many scars on my arms from where I've scratched this rash in the past.
So the reason for posting is firstly what can I use to stop this itching, at least so I can get some sleep? I have not slept now for 48 hours due to this horrible itching and this in turn is making my headache all the worse.
I have been examining my diary and the one thing that stands out is whenever I eat anything containing gluten, bread, pasta, cakes, biscuits (even things I didn't think contained gluten), my symptoms worsen. So this is where I'm up to, I spoke to a pathologist I work with and he thinks it sounds like the gluten is causing it and it could be coeliac, hence why I'm off to the docs tomorrow. I have family members who've been diagnosed with coeliac so it's in the family.
I think after suffering with this horrible rash and bowel problems for 11 years that there has to be more to it, especially as nonw of the treatments are working.
What shall I expect at this stage? if it is coeliac I'm just not sure how I can cope with a gluten-free diet, I was looking at the ingredients lists on the food items in my cupboards and roughly 75% of it contains gluten, or MAY contain gluten, or was produced in a gluten containing factory etc... it's just such a daunting prospect.
I shouldn't worry so much, especially as I've not yet had the tests done, but I feel 90% sure that this is what is wrong with me. I guess I'm just preparing for the worse.
Anyway, ranted enough now, any helpful information from others in a similar situation would be really useful xx
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