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Coeliac disease and anaemia??

(14 Posts)
hercules1 Tue 02-Jun-09 12:55:58

Wwyd??

I have mild iron deficiency anaemia - reading is 10 but my ferris serum levels were 7 which should be between 200-300.

I have lots of symptoms for anaemia - horrible tinnitus, seriously knackered all the time, dizziness, restless legs etc.

2 years ago I had a blood test that showed I full blood count as normal.
I used to have really heavy periods but over the last 2 years they've really settled and are what I would guess at as average.

My grandmother had coeliac disease.
I have no bowel symptoms but from my research this is not uncommon in adults with it.

Should i go back to my gp to get tested and go through the long performance and probably be told at the end I havent got it or shoudl I buy a £20 kit to test myself, or should I forget it?

pollykettlechips Tue 02-Jun-09 15:34:14

I would pester your GP for a blood test - anaemia is one of the symptoms (either with other signs or on it's own).

My blood count was fine, iron stores a bit low so not sure where i stood on the anaemis front medically speaking but until i went GF, i didn't realise my tiredness and exhaustion was part of an illness. I got (and still get) diziness and restless legs, also bowel pain.

The GF diet seems to be working, 2 weeks after going GF, i noticed a difference tiredness-wise and am nowhere as tired as i was before and have more energy for simple things like conversation!

BUT, don't try a GF diet before your blood test and if it comes back postive, before your endoscopy. Your gut starts healing and could gice false readings.

But, pester, pester, pester your GP And if the test does come back negative, perhaps try the GF diet yourself to see if you notice a difference.
Good luck.

hercules1 Tue 02-Jun-09 16:11:11

Thanks for the reply. It's nearly a month before i can even see the GP to ask for a blood test, then another month I expect to have it done et etc.

Do you have coeliac disease?

hercules1 Tue 02-Jun-09 17:26:20

bump

nightcat Tue 02-Jun-09 17:56:51

I would reseacrh it further in terms of other symptoms, becuase you might not even be aware of some.
Tests can be inconclusive and will only pick it up if you have been quite severely affected. Some tests test for autontibodies for selected organ (eg bowel), but might not pick up if other organs are affected (eg liver, brain etc). All tests for my ds were inconclusive/negative, but we still embarked on the diet as a last resort and with neurologist suggestion after genetic testing. The improvement was literally miraculous and when I also went on the diet I can vouch for improvement in symptoms I never knew I had.
Read up first to understand the potential damage and signs and meaning of seemingly distant and irrelevant symtoms.

hercules1 Tue 02-Jun-09 18:38:38

Thanks.

hercules1 Tue 02-Jun-09 20:06:46

Bump for any other opinions.

pollykettlechips Tue 02-Jun-09 21:25:20

Sorry for not replying sooner - hectic day!

Yes, I have coeliac disease, been diagosed around a year ago. My doctor took the blood test that day (I'd gone to tell him the anti-spasmodic tablets weren't working) but sometimes i have to make an appointment with the nurse, but this is usually a few days from booking it.

It IS worth getting a diagnosis. Apparently is common (1 in a hundred people have it, though only 1 in 8 of those people will have been diagnosed).

I would often get itchy skin, thinking it was circulation, but that's a symptom too, and has lessened.

The diet can be a bit of a pain at times, and you need to plan ahead when eating out etc, but if you are diagnosed through your GP, you are entitled to certain foods on prescription, including pizza bases, cake and bread mixes.

Even if you have to wait a few months, if you get a positive diagnosis, and stcik to the GF diet, you'll see a really big difference. As someone who was constantly tired and exhausted, I can honestly say I wish I'd known about CD and pestered for a diagnosis years ago (it was a different doctor from my usual who decided to do the test, and he did the blood test that day). Being so tired you could cry (and often did) is not funny.

hercules1 Tue 02-Jun-09 22:10:18

I have had itchy skin on my inner elbow - had a patch for months but it wasnt blistery or constantly itchy or on the outer elbow as I've read it should be??

Yes, I am frequently so tired I want to cry and/or faint so I can rest!

nightcat Thu 04-Jun-09 12:43:21

hi hercules
there is a list of possible symptoms linked to gluten in the link below (plse copy & paste as it doesn't come up as a weblink?)

www.glutenfreeworks.com/symptomology.php

silvercloud Thu 04-Jun-09 15:22:23

i'm sure there is a fairly new blood test that is now recommended ~tissue transaminase or something[sorry a bit vague]

Fimbles5 Thu 04-Jun-09 21:45:22

hercules1 - I feel for you and am in a similar position. For the past year I have been diagnosed as anaemic, each time the gp makes a diagnosis they tell me to take a course of iron for 3months. After 3months my iron levels are normal again, wait 1month and I am anaemic again. I have no other symptoms other than severe tiredness (I sleep well and have no real reason to be), but my Dad has recently been diagnosed coeliac. I had the blood test to test for this which came back normal (although I am told this is not always conclusive), and that is that!! Despite talking to my gp they can provide no explanation for my continuous anaemia and seem reluctant to investigate further. Not much help, but am watching thread with interest. Good Luck.

bramblebooks Thu 04-Jun-09 22:44:11

My husband has coeliac, which is closely linked to ds2's t1 diabetes. It's also genetically linked to addisons disease.

DH has a diagnosis, which means he gets his gluten free food on prescription, a big saving for the weekly shop.

hercules1 Fri 05-Jun-09 19:47:26

Fimbles - I am sure you should still be able to insist on a bowel biopsy as the blood test can give a false negative. APparently anaemia can be the only symptom and if a close family member has it then you have a 1 in 10 chance.

Does a grandma count as close relative??

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