Low iron, waiting on coeliac test feel so awful

[*Fallen Angel*]

I'm in such a state today. I've got iron deficient anemia which was only discovered recently despite having symptoms for over 12 months. I had a routine blood screening for coeliac but it's a 4 week turnaround. I've got just under two weeks to wait for the result. In the meantime my mind is in overdrive. The iron tablets I'm taking are not agreeing with me. Well I have been plagued with tummy aches/discomfort for weeks. The dr felt my stomach and said it was fine but doesn't want to do anything else till the coeliac result is in.

I feel dizzy and shaky and now have a burning pain in the top of my chest. I know low iron puts a strain on the heart and gives pains so I'm scared that it's about to pack up.

I'm also scared that if my coeliac test is neg but my iron stores aren't increasing then it's down to something more sinister.

I'm jut stuck in a negative cycle of anxiety and checking m body for different feelings. I honestly can't remember the last time I felt well. Doesn't help that I work on my own so have no-one to talk to or take my mind of such things.

[countrygirl]

Aww poor you. I am also having a big ha flare at moment over tummy issues. I know your Dr has done the coeliac test but it is possible to buy a test for £20 to do at home that gives instant results and is as accurate as the nhs one, just a thought if you wanted to know the answer sooner. Ths may not be of any help to you as you would still have to wait for the official results to come through???

I can understand you worry about the anaemia being from something sinister but remember most causes are not nasty. I assume you are female?? in which case periods are a common cause.

I have had diarrhoea for nearly a week now with feeling like large blown up balloons are stuck under left rib and volcano like gurglings and Dr has just sent off a sample to rule out food poisoning. So far I have diagnosed myself with bowel cancer/cancer of pancreas plus worrying that my long standing heartburn from haitus hernia thats not well controlled even on meds has given me oesphageal cancer as well.

So I understand how you feel and not having anyone to talk to just makes it worse. You can natter to me as much as you like:yesyes:

[*Fallen Angel*]

Thanks for your reply countrygirl. Sorry to hear you are suffering too.

I did think about buying one if those home coealic tests. Dh would flip though as he already thinks I'm a loony. My tummy is so sore and having just been to the loo it hurts even more.

Mr dr doesn't seem remotely concerned re the causes of it and whilst my periods are slight heavier they've always been the same.

I'm tempted to cut out gluten now I've had the test and see if I feel any better.

[Jo1981]

Hey i have the same problem with my Iron but i have been anemic for many years now..the doctor did the coeliac test as she said there related but it came back negative,i also did the home testing kit and that was negative too..my dad and sister both are on gluten free diets so i thought i would of had it to be honest but i am doing the gluten free diet anyway and i feel so much better now with my iron..i was meant to go back for my iron to checked but i havent as yet :-/ but adding lots of green veg like spinach and brocoli has really helped and definatly cutting out the gluten..try not to worry as iron problems run in my family and a nurse told my mum its usualy down to your diet,my periods used to be heavy but not any more so i cant say mine is from that..my mum got me a natural supplement from boots as the my iron tablets were so hard on my tummy so maybe try it feroglobin plus..hope this information helps xxxx

[*Fallen Angel*]

Thanks Jo. I went to a friend's last night and with chatting I forgot my symptoms for the most part. When I woke this morning I felt really well, no tummy ache but then it started. It's either high up or low down but never all over and I was thinking about the iron and it's effects as all this pain started 2 weeks after starting spatone. I know it's meant to be gentle on the tummy but maybe not?

I looked into slow release iron so gonna ask the pharmacist if it's got enough in for what I need. I'm on 210mg x2 a day of ferrous fumarate.

[countrygirl]

You mentioned cutting out gluten before test result. Please don't do this as if your test result if positive then the next test cannot be done if you have not been eating gluten. Just thought I would warn you in case the test is positive.
My cousin did same thing and then had to wait ages for the next test because she had not eaten gluten for 3 weeks so she had to start eating it again which made her even more ill before next test.
They confirm the blood test by doing a gastroscopy and taking a sample and testing it and if thats positive then you get a diagnosis of caeliac, they will not diagnose purely on blood result which I am sure your Dr has laready explained to you.
Hope your test is negative!

Iron in any form can create havoc with tummies so this may be the cause.

[*Fallen Angel*]

You mentioned cutting out gluten before test result. Please don't do this as if your test result if positive then the next test cannot be done if you have not been eating gluten. Just thought I would warn you in case the test is positive.
My cousin did same thing and then had to wait ages for the next test because she had not eaten gluten for 3 weeks so she had to start eating it again which made her even more ill before next test.
They confirm the blood test by doing a gastroscopy and taking a sample and testing it and if thats positive then you get a diagnosis of caeliac, they will not diagnose purely on blood result which I am sure your Dr has laready explained to you.
Hope your test is negative!

Iron in any form can create havoc with tummies so this may be the cause.

Funnily enough my friend mentioned this and I realised it too so no, I've not cut it out yet. Thanks for the heads up.

Had pasta for tea abc my lower stomach is so painful and tight right now. Only just over a week till the result...

Can you get a false neg on the blood test? From my googling it seems you can but I never know what to believe.

---------- Post added at 20:35 ---------- Previous post was at 20:34 ----------

Dr never explained anything re the rest it what to do/not to do!!

[Edie]

I was tested for coeliac and looked into it a little at the time. The blood test can occasionally give a false negative, but they can still do further testing if they still suspect coeliac. The biopsy testing is virtually conclusive, so long as you are still eating gluten.

You can reduce your gluten, and if you already know it's an issue then this may be a good idea. Speak to your doctor about the minimum intake you need for the tests. It may be as little as 1-2 slices of bread. Pasta is pretty much the worst thing so it may be wise to substitute it if it doesn't agree with you.

[anxietygal]

Definitely look into taking extended release iron as it is gentler on your stomach. And you can take more than 1 a day. On normal iron, I had horrible stomach pains & some of the worst heartburn ever.

Also, are you taking the iron with food or on an empty stomach? I know the ideal way to take them is on an empty stomach with vitamin C as this maximizes absorption. However, you will still make progress if you take it with food. I decided a slightly slower recovery from the anemia was worth not having so many stomach problems.

[*Fallen Angel*]

I've been taking the iron with food for the past 2 days and I think it's starting to help. Tummy doesn't feel so painful. It is still sore but I can def feel an improvement.

I heard about the false -ive you can get with coeliac blood test. Have to hope my dr will look into it further if need be.

[Mummytofour]

Hi,

I know how your feeling as I am going through the same. I have had an awful lot of different symptoms the last few months and when my blood tests came back saying very low iron my doctor decided to do a blood test for coeliac disease. I have my positive result now and am waiting for my endoscopy which is the next step in diagnosis. I too have been tempted to cut out gluten but haven't as I want an accurate result.
My doc did say that if she were me then she'd cut down on gluten in the meantime just not fully, but I may feel a little better by doing that so I have been and it does definitely help. So u may want to try that. I am also on 2 iron tablets a day and have been for around a month now and am just starting to feel the benefits from them at last.

I really hope you start to feel better soon. Once the iron tablets start boosting you a bit that will be a good step. I try to think like that everyday and find it helps. If I feel a bit off I just think 'once the iron starts to work I'll feel better'.easier said than done though. Good luck with the results.

Maxine