Husband diagnosed Celiac recently and since then has been having trouble with both eyes Twitching Badly. On Meds from the Doctor ,but Not

[annr6]

helping!! Anybody else found they now have this Problem , any Help would be really Appreciated. Many Thanks.

[Regalbirdy]

Hi anner6

I am a coeliac and I used to get that a lot. However it has pretty much gone away since my B12 deficiency and my vitamin D deficiency were successfully treated.

I remember as a newly diagnosed coeliac, it took a number of trips back to the GP before they listened and tested me for both deficiencies though.

At the risk of sounding pessimistic, unlike my coeliac diagnosis; I've generally found the GP follow up care offered, to be a much more of a hit and miss affair and was often only instigated at my own request. In my case, persistence, negotiating (and downright begging!) did pay off in the end. I now have regular B12 injections from my GP's surgery; and a referral to an endocrinologist sorted out my severe vitamin D issues.

If they tell your husband that his B12 is low and suggests he takes oral supplements; my advice would be to tell him to say no to this option. Any decent GP will understand that his guts will be unlikely to be able to handle/absorb oral B12 very well in the early stages of his new gluten-free lifestyle - so the benefits are likely to be minimal. On this I can speak from personal experience.

Also encourage your husband to start getting the exact numbers (and ranges) from any past present and future blood test results. Overall it's much more useful than being told 'it's a bit low but don't worry.' Having the exact numbers allows him to make a much more informed decision. It also makes it easier to review and/or challenge any poor decisions made by members of the medical profession.

Good luck!

My very best wishes to you both.

[sallydogsmum]

Hi

Regalbirdy's absolutely right. Do ask your husband to get a copy of any blood results/tests - even if the doctors complain, you (he) does have a right to look at them, and ask them to go through the results too; not just 'low but okay'. sometimes 'low' is NOT okay. You need to be armed - this is with him (and you) for life.

If he hasn't had vitamin D and B12 levels checked, he should, twitchy muscles can be a sign of deficiency. Also, sometimes, stress alone as well as tiredness can cause twitchy muscles, which is still alarming but self limiting.

CD has many tentacles, and it wraps you up tightly. You become an expert, knowing much more than the GPs who think it's all about bowels and not the 200 (I think) or so other symptoms that can come along with it. Ask at the surgery if one of the GPs specializes in coeliac disease - there's usually one - it might help to have someone who actually 'gets' the problems!! But on the plus side, you've found this site..............

Good luck to you both