I'm being told by some people that it could be a psycological thing- that because I think the gluten will make me ill- it does?
But! I'm 3 and a half weeks on a gluten diet and my skin feels like paper, I'm sporadically itchy- mostly scalp, legs, stomach and chest.
My hands, knees and elbows are so dry and I have little red dots scattered on my legs (step-mum says shaving/hormnoes) and my chest and back (hormones apparently). Oh, and that leaves my face and lips- the picture says it all- apparently that is hormones too- acne. But surprisingly, I didn't have acne on my gluten-free diet which lead me through my most 'hormonal' years. I just want to burry my head and I'm so sore.
Related? My last blood test for coeliac was negative- just to add that to the boiling pot. And relax, rant over- sorry guys!
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Abby
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It' hard to find proper advise and care- my GP will not refer me to a specailist with positive test. That's a good point raised- I may pay for a dietician or something, if I cannot get referred to anyone.
Sadly the medical profession are not terrific when it comes to coeliac disease. I was diagnosed for years as miscellaneous infections, stress, etc when it was, in fact coeliac disease.
I won't repeat my diagnosis story it's on my profile but suffice to say I had big rows with doctors and eventually went private.
However, and this is something I have mentioned on other postings - it depends what your motivation for diagnosis is. If you are suffering classic coeliac symptoms which disappear when you go gluten (and other common allergens) free there are not many other ailments which have these triggers. If you have other pain/discomfort/blood in stools, etc then you must pursue proper diagnosis. If its peace of mind, personal choice but for me the testing was too high a price to pay for that when I knew what I had anyway.
If its to get prescription gluten free, well word of warning availability will drop across primary care trusts. They are under budgetary pressures and the South East led the way in slashing amounts available, quality on offer and choice. Others are watching and will follow. They've experienced big drops in costs as coeliacs go and buy their own food...
I have had no other benefit, I know more about coeliac disease than my local GP and the dietician could not offer any advice as I had a good balanced diet. Only outcome for being officially diagnosed is that I can't get life insurance so getting a new mortgage would be fun! Fortunately, I am of the age where this is not an issue, but if you are young, think carefully as insurers are quite shy of taking on coeliacs.
In terms of approach, food diary is a good idea as Tony said, you will start to see patterns. Next step on if you are unsure is a basic, pure diet avoiding common allergens like milk, shellfish, gluten, eggs. Have meat, veg, fruit, rice. Get your system stable then start reintroducing suspect foods and monitor reactions. If you get no reaction add this to the diet and pick another one, etc.
Good luck and ask questions there are many here in a similar boat who will be happy to help.
I have started the food diary, I guess it is a matter of 'you knowing your own body best'. Rather annoying, but it's good to know I'm not in the boat alone. Not that I'd wish coeliacs upon anyone! But just to know things can go wrong and be worked out- I've just got to find out what works for me- not test results.
Sorry to hear things are a bit miserable for you at the mo. Your symptoms (all the skin stuff) sounds exactly what I had before I was diagnosed. Had years of docs telling me it was eczema and saying, try this cream and that cream, and nothing made it go away. Eventually, I moved house and ended up with a great GP willing to refer me for food allergy tests (I was insistent it was being caused by something I ate). Low and behold, coeliac diagnosis. Am now GF and rash free for the first time in about five years!
Do some reading around dermatitis herpeformitis - still not sure if this is what I had, or if was eczema caused by eating gluten as they are linked - but I think it is. My consultant (immunology) was involved with writing the NICE guidelines for coeliacs and even he was surprised to hear my main symptoms were skin (did have secondary stomach issues, but only realised when piecing things together after diagnosis).
My advice would be if you are getting nowhere with your Dr, go see a new one. Be persistent and clear about what you want, and hopefully they will refer you appropriately. Ask for a referral to the allergy clinic for food tests and make sure you eat high-gluten foods like granary bread to make sure your levels will be as easy as possible to detect.
Hi Abby, I am so sorry for you. You do sound as though you could have Dermatitis Herpetiformis - it was my original diagnosis after years of skin problems. I didn't have anything on my chest/stomach, but a lot on my back, forehead, feet, elbows and knuckles. The spots/rash eventually progressed over the entire sides of my legs and burnt with pain. If you can see a dermatologist they could do a skin biopsy to get a diagnosis. Whoever has asked you to do the gluten challenge should be able to prescribe you a topical steroid cream to alleviate the symptoms.
Hi Abby - where to start. Cases such as yours are one of the reasons we started GFGuerrillas. It's always frustrating that we don't have enough hrs in the day to do all the work on awareness raising & campaigning that we'd like to. Yet we're planning to get cracking on some more ideas this year. So we'll be seeking guerrilla helpers and support soon.
Meanwhile..
1. Believe in your body's reactions.
I can't begin to stress that we know our bodies better than anyone else. I know if I'd been more forceful with Drs earlier I might have been diagnosed earlier so know that you're not imaging it or going mad!
2. If you are doing a gluten free challenge before the blood test we know that people are medically recommended that they eat 6 slices of bread a day at least 4-6 wks before.
Our personal view -- and I have to stress this -- is that this is too much and can damage some coeliacs. Our GP actually recommended 2 slices of bread a day and other gluten eg soy sauce etc. It's very hard to eat lots of something that makes you ill. The anti-bodies will stay in your system for 3 weeks - so as long as you are eating a 'good' amount of gluten you'll have anti-bodies.
However, seek medical advice - from another GP about what the minimum is you can eat / drink in order to trigger any anti-bodies.
3. Acne is not always based on hormones nor on what we eat i.e. most teens are told that chocolate causes acne and that's not entirely true. Like you we had bad acne on our chest, back as teens & also scaly arms and upper legs.
Having recently seen an dermatologist for ongoing skin problems I can confirm that:
- some rashes are nothing to do with hormones or what you eat
4. Your acne may in fact be ezcema, Psoriasis or Rosacea.
Here's some handy info:
- did you know that 70% of your immune system is controlled & managed by your digestive system?
- so imagine if you do have coeliac disease or any bowel problem and it's easy to see how having a stomach problem would compromise your body's ability to function properly and fight infections. Often coeliacs will develop regular urinary track infections, thrush or psorisasis, rosacea. Your skin is a window on how your body is functioning. Problems with the skin reflect inflammation within the body. Now these problems may not actually be skin problems as in the main problem may lie in the stomach eg coeliac disease, yet if you're not absorbing food and vitamins properly, and your body is attacking gluten and itself it's easy to see that the skin isn't going to look great. It will show signs of problems as everything is out of balance in your body.
5. I'd strongly recommend you see a new Dr (don't be shy ask to see another one at your practice). Explain the difference before and after a gf diet and your food diary. Ask for another blood tests that also tests for two anti-bodies. The problem is that occassionally some people have false negatives text as they produce a different anti-body to the gluten.
6. False negative blood tests:
Ask the Dr if he/ she tested you for Endomysial antibodies and anti-tissue transglutaminase antibodies (blood tests) as these are two useful blood tests that should catch most coeliacs.
There are two main reasons for false negative blood tests for coeliac disease.
Some people have a deficiency of one type of antibody, IgA (they are born that way - as Lady Gaga says). So they'll have low endomysial antibodies and anti-tissue transglutaminase antibodies since they are IgA-type antibodies. Ask your Dr to test you for IgA deficiency.
For years my GPs just blamed it on dry skin. Finally a dermatologist diagnosed this last month. I know I'll never have arms as smooth as Jennifer Annisten - but at least I now also know that wasting money on exfoliating cream is best save on a summer break - as sunshine often helps this. And a good dermatologist can recommend good prescription creams to use on this as well.
8. Keep chasing your Dr...
So don't give up. On average it takes 10 yrs + for a coeliac to get diagnosed. Which explains why we're often on these forums ranting ; )
Keep us posted on progress. Here's some handy links:
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
and I'm so sore.
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