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Hi, I'd Really Appreciate Some Advice...

English Chick

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English Chick Newbie
English Chick
Posted

Hi everyone,

Since the age of twelve I've suffered from IBS although I wasn't diagnosed until a few years ago, at first it was quite severe I was constantly on the loo sweating/feeling faint/sick with diarrhea, I went to the doctors numerous times but they couldn't diagnose me so I guess I learned to live with it. Over the years It has improved, it only get's really bad maybe once/twice a week but then again it really does depend I go through good and bad phases...A few years ago I started with another symptom, bloatedness. My tummy would get so big I would look 6 months pregnant! This was when a doctor finally diagnosed me with IBS and gave me Colpermin which eased the bloatedness a little (passing wind helped, sorry to be so graphic!) I never found something to ease the first symptom. I've tried watching my diet for something that triggers either symptom but haven't found anything in particular really...

About 18 months ago I started getting migraines every day and this lasted weeks, was constantly tired from this, had no energy etc, I went to the doctor and he told me that it was probably just a phase and the migraines would probably go in their own time. I wasn't happy but I thought oh well I'l wait and see. It got worse so I thought I would go and get my eyes tested, they referred me to a specialist and they found nothing. They suggested diabetes, went back to the doctors, did blood tests and everything came back fine. I went to see another doctor and he told me that it was the contraceptive pill I was on the hormones didn't agree with me. He said I was at very high risk of having a stroke, put me on these tablets to stop the veins in my head from swelling which spaced me out completely! I ended up coming off them and all the other medication as I just didn't feel right having all this med in my system. The migraines stopped for a short while but now they're back. First started with headaches then the migraines came, IBS still as bad if not worse, constantly lethargic, I have mood swings (always had them really I always put it down to the pill) and recently I've started to get really dry skin on my hands with blotchy patches. All in all over the past few months I've felt considerably worse in myself.

I went to the doctors yesterday and told him I had been looking on the internet about food allergies/celiac after someone asked me if I had been tested and he simply replied with 'because your asthmatic you would probably be intollerant to most things so it's not worth you getting tested' and advised me to cut out wheat then lactose until I feel better. I've been looking at this site for the past week or so and my symptoms seem to be very similar to a lot of people on here. I would really appreciate it if I could get some advice as I don't seem to be getting anywhere with my doctors and everyone on here seems so nice, this has been the best Celiac site I have come accross :D I've stayed off Gluten food for three days now and feel a lot better but I don't know if that's just coincidence...

Thankyou in advance, I apologise for the extremely long post!

X

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~alex~ Explorer
~alex~
Posted
I went to the doctors yesterday and told him I had been looking on the internet about food allergies/celiac after someone asked me if I had been tested and he simply replied with 'because your asthmatic you would probably be intollerant to most things so it's not worth you getting tested' and advised me to cut out wheat then lactose until I feel better.

I am asthmatic and definitely not intolerant to most things. I have Celiac and have found only a handful of other food that I may be intolerant to.I really don't think asthma would result in a false positive on the Celiac panel. At least your doc suggested cutting out wheat but you would really need to cut out all gluten sources.

I think you should be tested if that is what you want to do. I hope your doctor will test you or that you can find a different one that will. If not, you could always try going gluten-free and see how you feel. I hope you find some answers soon. It sounds like you have been feeling quite ill for awhile.

edit: I initially read your post wrong so I edited my response accordingly.

Lisa Mentor
Lisa
Posted

Welcome and we're glad that you found this site so informative. :)

I am not a fan of the doctors you have been seeing. There are three ways (to date) for Celiac testing. 1. You can have an IgA Antibody Blood Panel. 2) An endoscopy/biopsy exams can confirm Celiac, but it is often hit or miss. 3) Positive dietary response could confirm Celiac or Gluten Sensitivity without an "official" diagnosis.

Should you decide to pursue further testing it is important to remain on a full gluten diet.

If you choose to forgo testing you can begin your gluten free diet immediately. Here you can learn how to begin. The diet is much more involved than just removing wheat from your diet. This site will be helpful.

I hope you find your answers soon and feel free to ask away.

nikki-uk Enthusiast
nikki-uk
Posted

Hi English Chick!!!

My husband and son are both coeliacs.

First off - assuming you are in England - your experience is fairly typical...my hubby was ill for many years before being diagnosed ..and my son only diagnosed 'cos of his Dad :rolleyes:

Your GP is WRONG to say 'because you are asthmatic you would be allergic to most things'.....DEAR GOD!!!!

First off Coeliac Disease is an intolerance NOT an allergy - and if your GP knew didly squat he'd also know it's an autoimmune reaction.

Secondly - DON'T GO gluten-free YET!!!!!

Insist on the blood tests (get them done NOW whilst you potentially have gluten anti-bodies in your system) - once you go gluten-free for any length of time it may give you a false negative <_<

Is there another GP you can see??? (I found the younger of the 2 at my surgery has more knowledge about celiac disease )

If he's not sure what tests to do contact Open Original Shared Link who can advise :)

English Chick Newbie
English Chick
Posted
  • Author
Hi English Chick!!!

My husband and son are both coeliacs.

First off - assuming you are in England - your experience is fairly typical...my hubby was ill for many years before being diagnosed ..and my son only diagnosed 'cos of his Dad :rolleyes:

Your GP is WRONG to say 'because you are asthmatic you would be allergic to most things'.....DEAR GOD!!!!

First off Coeliac Disease is an intolerance NOT an allergy - and if your GP knew didly squat he'd also know it's an autoimmune reaction.

Secondly - DON'T GO gluten-free YET!!!!!

Insist on the blood tests (get them done NOW whilst you potentially have gluten anti-bodies in your system) - once you go gluten-free for any length of time it may give you a false negative <_<

Is there another GP you can see??? (I found the younger of the 2 at my surgery has more knowledge about celiac disease )

If he's not sure what tests to do contact Open Original Shared Link who can advise :)

Thanks Nikki, I'm going to go docs again and see another doctor. I went into Holland & Barretts today and asked about allergy/intolerance testing and they said there's a woman who works there that can test me against 81 different foods! And it costs me

nikki-uk Enthusiast
nikki-uk
Posted
Thanks Nikki, I'm going to go docs again and see another doctor. I went into Holland & Barretts today and asked about allergy/intolerance testing and they said there's a woman who works there that can test me against 81 different foods! And it costs me
English Chick Newbie
English Chick
Posted
  • Author
Why indeed - although the above mentioned test CANNOT test for coeliac disease ...and has had quite a bit of bad press <_<

Good Luck :)

The Holland & Barrett test? I mentioned that I thought I might have Celiac and she didn't say anything...what have you heard?

Also apparently Boots have a test you can buy normally

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nikki-uk Enthusiast
nikki-uk
Posted

Here's one article re: Holland and Barrett Open Original Shared Link

They do not do the specific tests for celiac disease which are:

Anti-tissue Transglutiminase IgA (tTg)

Anti-Endomysial IgA (EMA)

Total serum IgA

These all together give a clearer picture of what is going on.

There is one test you can buy that is advertised on CUK's website - but it's only one component of the test (tTg)

Open Original Shared Link

:)

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