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Bell

Member Since 27 Oct 2008
Offline Last Active May 10 2009 01:35 AM
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Topics I've Started

Eating Gluten Before The Biopsy

18 December 2008 - 09:48 PM

My biopsy should be at about the end of January, and so I'm supposed to be eating gluten until then. I've been off it for about 2 months so far, and want to stay off through christmas, just because I want to be happy! But here are some questions:

how much gluten is enough to have an effect?
how can I limit the other effects than the villi being damaged?
Gluten often makes me constipated, but then feel "poisoned" and then get diarrhea/sickness at about 4:30 in the morning. How can I avoid this? It has been a real relief to sleep through the night for the last month or so
Should I take any vitamins? The consultant mentioned B12?
Eating gluten gives me brain fog and a sort of manic, unfocused energy at the same time. Any advice on relaxing?

Also, what happens at the biopsy? The doctor today said they would be looking "up one end and down the other" . This sounds hideous.

Thanks in advance!

Milk.

14 December 2008 - 10:13 AM

I've been off gluten for about 2 months, and feel much better for it. D has stopped, and my mind feels clearer, which i'm sure you'll understand, is an enormous relief! The only thing is, now I think I'm allergic to milk. Or intolerant perhaps. When I drink milk I feel within about 30 mins or so that I need to clear my throat. Every 2 minutes or so. It's not painful, but a big old pain nonetheless. The thing is, before going gluten-free this never happened as a response to drinking milk. I've experimented a bit, by changing to soy milk - it stopped the mucus immediately, but when I eat a bit of cheese it does not really come back. I'm a bit green about how this works, but my impression was that lactose tends to be the allergen that makes you mucosy. I then read lots of anti-soy literature saying it would cause tumours and was generally bad for you, and tried to find a middle ground by using goats milk instead. But exactly the same thing happened. I'm clearing my throat constantly after a small cup of tea earlier today!

I can't research much because my internet connection is "wireless" and stops working, or slows right down when I move toward the computer (I'm not joking! it works for my boyfriend!) so could anyone help me? Is it normal to be come intolerant of something else after eliminating gluten?

bell

Uk Celiacs - How To Find An Informed Gp

19 November 2008 - 11:30 AM

My GP isn't bad exactly, but the UK posters here have reinforced my suspicion that it's hard to find out what you are entitled to over here. I feel, like others, that I've been fobbed off for years by ill-informed doctors, or worse, ones that simply knew the exact allowances of their budget. Does it even work like that? I'm guessing it does, because my blood test was by a locum, after years of really OBVIOUS signals being ignored.

I've moved back to my home town after uni and moving around a bit, and without really considering it, signed up with the doctors I'd had all my life. But is there a way of finding out whether some doctors have particular specialist knowledge over others, so I can change surgeries and get a really informed doctor?

I know that past a certain point it's all about your consultants and specialists etc. but for me right now, I want someone who is willing to actually refer me to them. And also to refer me to specialists in relevant related problems, like fertility experts etc. I'm feeling really disturbed because I've had such an obvious collection of symptoms for years, and nobody told me I might end up infertile as a result of this.

Do GP's specialise in this way? and how do you find out?

BTW. I live in East Sussex. Anyone else? I'm pretty new to all this.

What Veggies Are We Likely To Be Intolerent To?

18 November 2008 - 11:25 AM

I have a suspicion for myself that I don't digest mushrooms and cabbage and onions, though I'm not sure yet. Every time I have them (and I love them) I feel sick, and later poo them out almost undigested. (or occasionally vomit) Is this connected to my innards being affected by celiac, or is it something seperate?

I hope it's something that resolves with a gluten-free diet as I already feel rather restricted! Also they are apparently healthy, and very common.

Bell

I'm In A Quandary! (sp?)

17 November 2008 - 01:18 AM

First, I live in the UK, where I know the first advantage of the biopsy is that I get - woohoo!-some vouchers for gluten-free food.

But I have had a positive blood test (antibodies, not sure which one) and have felt MUCH better being gluten free for the past month. I've got an appt with a consultant next month, who I suppose will probably book me for a biopsy to confirm the problem (this could be more months away). The thing is, a few days ago I ate a very delicious chocolate cookie just to see whether my symptoms would return, and if so what exactly they were, and I have been in the worst place in the world until last night when things calmed down. I know that to get a true result in the biopsy I need to be eating gluten, but many of my symptoms were psychological as well as diarrhea and also nausea and general sickness. I don't know whether it's worth it to go back to being ill, for probably at least a few more months until the biopsy.

The biopsy also looks for other potential problems, so that's one bonus, but if it comes back negative for celiac, I will not only lose my actual "diagnosis" but also feel like a fraud to my friends and family, and just some kind of paranoid hypochondriac nutcase. I feel really torn over this issue.

I read somewhere else just now that a false positive blood test is unusual, but I know there are lots of different kinds of antibody tests, and I'm not sure which mine was. How do I find out, and which ones are the most accurate?

thanks,

Bell