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Is it worth being tested for Coeliac?

(9 Posts)
Thattwatoverthere Mon 13-Mar-17 22:48:05

I know I need a doctors appointment for this really but the wait is too long for both an appointment and bloods to be taken and tbh they haven't been all that helpful so far.

Just under a year ago I was getting very frequent migraines which worsened quickly and I was then diagnosed with hemiplegic migraine (leg basically dragged behind me for 2-3 days after an attack) and I was in a fog for the majority of the time. I was getting multiple migraines per day/week and didn't really have time to recover from one before the next one started.

After a LOT of trial and error I found that eliminating gluten totally from my diet really helped and the attacks only happpened when I ate something containing gluten by mistake. I was gluten free for around 4-5 months and honestly felt so much better.

I then split with my ex who in all honesty caused me a lot of stress and I wondered if maybe he was the cause of them and gradually reintroduced gluten back in to the point now where I'm eating normally again. This was at xmas. Since then I have been getting migraines again but a lot reduced in frequency and severity. I've also noticed that I'm gaining weight despite being in the gym regularly and eating healthily. Feeling foggy and irritable too and bloating a lot.

I really want to eliminate it again but I'm not sure whether to just do it or to be checked first for coeliac. The dietician recommended I was tested if I could start eating it again due to me having a low feratin (?) level on my blood tests - I think it was 10. The doctor told me this was a normal result. The wait to see the dietician again is long so I can't just ask the question unfortunately.

Is it worth having a confirmed diagnosis and finding out if it's just a sensitivity or a definite never eat gluten again in my life situation? Has anyone had experience of coeliac and does this sound plausible bearing in mind the reactions don't seem so bad now as they were?

Any help welcome as I feel like crap right now confused

Thattwatoverthere Mon 13-Mar-17 22:57:01

Sorry for the essay btw!

cestlavielife Tue 14-Mar-17 09:28:12

You need to be eating gluten for at least 6 weeks before being tested. See website for
coeliac UK.
Yes worth getting tested.

1haventaclue Tue 14-Mar-17 10:38:08

Do you get any other symptoms? I know I was always dog tired pre diagnosis, and would switch between not being able to go to the loo for days to not being able to get off it! Achy joints, bloating, bad skin, it wasn't fun! If you feel better gluten free I would definitely look into getting tested, as you will get all the after care with an official diagnosis, which is quite important, bone scans etc. Make sure you are eating gluten containing food properly for 6 weeks before the test to make sure the results accurate. Once that's back, if it's positive you will be referred for an endoscope, you need that for the official diagnosis. Good luck

highinthesky Tue 14-Mar-17 10:42:49

I think gluten may be coincidental rather than causal.

Your symptoms are indicative of neurological pathology somplease have it investigated. The bloat could be down to wheat though (not gluten per se).

ExplodedCloud Tue 14-Mar-17 10:43:41

Ferritin of 10 is low. The reference range I have has a range of 13 to 150 as normal. You should be aiming for a mid range result.

Thattwatoverthere Tue 14-Mar-17 22:48:19

Thanks for your replies everyone. Part of me wants to just stop eating it now to feel better but then at least if I'm tested I'll know that I can't go back to it. But the thought of never having proper pasta again isn't a good one! But then nor is bad skin and a bad stomach either so...

I've been eating normally for the last 2.5 months but will probably need to up the amount I'm having each day as it's still quite minimal, generally just a cob at lunch then toast as and when I feel like it. God I'm going to be bloated!

highinthesky when you say neurological pathology, what do you mean? I had an MRI when my migraines were at their most horrendous and said all looked healthy. Would this have been picked up at that point?

PinkCrystal Tue 14-Mar-17 22:58:06

Do you have a family history of coeliac? Or auto immune illness? I definately think you should get tested. Low ferratin is common in coeliac disease and some people have neuro symptoms. However some doctors are reluctant to test unless have 'classic' symptoms.

Thattwatoverthere Tue 14-Mar-17 23:17:03

Nobody has ever been diagnosed in the family as far as I'm aware but we do have a history of migraine so I've just dealt with it for years until my acupuncturist really pushed for me to get my bloods done. And the dietician I saw was horrified that I hadn't already been checked for coeliac when my results came in that the doctor thought were completely normal. She suggested when I asked her that "maybe you could take iron tablets" even though I have a really healthy diet already.

I've been told at every blood check I've had (including donating blood) that my iron is low and I've not questioned any other results which I should have probably. I've had years on and off of seeing the doctor due to excessive tiredness and feeling generally crap and anaemia was always the diagnosis. Last check on iron was 10 also, the same as my ferritin.

I really need to push for it I think just to put my mind at rest. I was told at 17 that I had IBS so any stomach issues I've had seemed to have been put down to that.

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