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cristiana

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  1. Hi tpchan

     

    I am afraid I don't understand all these different tests but I do know that a lot of UK GPs have been sent info on this site - see link.

     

    http://thinkcoeliac.co.uk/nice-recommendations

     

    If it suggests any tests that you haven't had, it might be worth showing to a doctor and having another try.   But maybe you are looking for tests outside the NICE recommendations?  As I say, I am sorry, but these tests confuse me!


  2. I found this from Coeliac UK - we add an 'o' in the UK and I am still not sure why!  It doesn't seem necessary!

     

    https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/gluten-free-diet/oats/

     

    My own nutritionalist said it was worth waiting 6-12 months after taking up gluten free diet so that when oats are introduced it will be obvious if there are problems.  It will also have given your tummy time to heal a bit, as mamaw says.


  3. I got really sick before I was diagnosed with celiac disease two years ago.   I never want to feel like that again!   That has made me so very resolute - unlike a friend of mine, who takes quite a lot of risks, but she was never as ill as I was.  I worry about her as I feel that she is courting danger with her lax attitude.   I do wonder if I had never been as badly affected, whether I would be the same.  

     

    It sounds like you really have come to that point where you are fed up with feeling so bad you are prepared to leave gluten behind forever.   That's great!  That will empower you to take a stand.  It is important that in the house you have a good stock of gluten-free food so that if your boyfriend tries to get you to eat something, you won't feel tempted.  Hopefully once he has read the material that kareng has suggested he will understand better.

     

    You can do it!


  4. Mari&me - in response to your B12 question,  again, that is something that can be assessed with a specific B12 blood test. My B12 was low on Dx, but I think I have a continuing problem as I get prolonged pins and needles and I start taking B12 sublinguals with large doses and this really seems to help.  Reading mrsrag's comment about gluten-free oatmeal has really made me think - it shows just how quickly our levels can drop.  I am definitely going to get my vitamin and iron levels checked again!  I don't know about the States but it seems to me that here B12 and iron checks are not always given routinely after DX which I think they should be.   I have often read on this and other websites that if any of us are experiencing neurological symptoms we need to ensure our B12 levels aren't just borderline, but around the 500 mark. 


  5. Hi Colleen...I',m very interested in what you are saying.  Around the time of my DX I had what felt like twitching in my face.  I was stressed at that time and suffering from all sorts of deficiencies, including iron.  

     

    A close relative actually suffers from a twitch in his left eye area which sometimes causes one side of his face to contort.   He is living under a great deal of stress and another relative, a doctor, said that is what is behind all of that. As I understand it it can be the trigeminal nerve that is affecting this.

     

    I thought I was going down with the same thing but noticed after taking magnesium and B12 supplements this stopped and concluded in my case this was to do with lack of B12 and magnesium  - esp. when my B12 was low borderline when DX'd.   I noticed it came back in January when I had some more medical tests and started a new job and got a sinus infection.   Then, in March one evening I was out and realised that when I touched my face it tingled.  Cold wind brought about the same effect.  Googled and it said Trigeminal Neuralgia!  Yikes!  

     

    So I went to see my GP.  She wondered if it was thyroid.  Took a slew of blood tests - thankfully all fine.  Told me to come back if it carried on or got worse.  Well, it started off in the apple of my cheek next to my nose as a tangible but mild shock but now is tapering off to just right of my right eye and is so mild it is barely perceptible.   It has almost gone so I haven't gone back to my GP as I truly believe it is on its way out. It is as if it has followed the line of the nerve to the very end.  It does feel slightly prickly at times, so know what you mean Colleen.  I gather people who have had Bells Palsy say this is what healing can feel like. 

     

    My doctor relative said he thought I had shingles without the rash just over a year ago when I had burning pain on the left side of my torso.  He encouraged me to take Lyrica but I didn't.  Again, he encouraged me to take Lyrica for this latest stuff but I haven't.  He thought it might be the trigeminal nerve that was affected.  I will resort to meds if I have to but I have found, yet again, that trying to eat really clean, getting lots of sleep, and taking B12 and magnesium has really helped.

     

    Jim, thank you for your helpful advice.  I am going to contact my private nurtritionalist and ask her to look at my iron and vitamins and see if that is a possible cause.


  6. Thanks CarC - that is interesting and I think would tie in.  Colleen - I have no excuse, really, as I have (since recovery) put on ten pounds so should be cutting back.  Next time I shall use that excuse rather than the, "Are you sure that is a gluten free biscuit?" - as we call cookies in the UK-  as my reason not to eat it.  It did taste nice though... but with what it did to my face I won't be making that mistake again.  Gluten seems to effect my trigeminal nerves and I certainly don't want that situation to progress. 

     

    Thank you both.


  7. I think I must accept that two years after giving up gluten some of my tingles and buzzes are here to stay.  However, someone offered me a gluten free cookie the other day which was, alas, nothing of the sort.  About two days latter my face was twitching and buzzing.  Now it feels stiff  but now my tongue feels slightly tingly.   Does anyone know how long it takes for neuro symptoms to settle after glutening - is there a typical time frame?   I ate the cookie just over a  week ago. It seems to me that my neuro symptoms get worse after glutening the longer I am gluten free, and yet my gut seems to hardly notice.


  8. Does anyone here use Flaxseed Oil?  In my search for good oils to help my buzzing nerves I thought I would give some a try.  However, I had some this afternoon and whether it was related to a delayed reaction to glutening a week ago or just because it or something else disagreed with my I now have stomach ache.   Should we seek out gluten-free Flaxseed Oil or can one assume it is?   


  9. Hi CurrantCottage

     

    Love your user name!

     

    Just to say that I was taking iron tablets prescribed by my GP when I was referred to my BUPA gastroenterologist as I was recovering from iron anemia - and he (the gastroenterologist) told me post diagnosis to keep taking them, too.   I was taking something called ferrous gluconate.  

     

    Do check with your GP regarding the other stuff as sometimes medication can affect blood tests.  If you have already seen your GP by now, and still haven't got an answer, you could put a call through to the consultant's office and the secretary could check with the consultant for you.  I think the main thing is that you make your consultant aware of what medication you are taking so he/she can factor this in.


  10. I had some pain, in the groin area and a bit further up, I think where you are referring to, but  on the left side.  My doctor sent me for an ultrasound scan just to check ovaries etc - all OK.  I mentioned to the doctor who did the scan that the pain seemed worse when I moved.   She thought it might be mechanical.   I am going to put this past my gastroenteroligist next visit, but I have seen a chriopractor in the meantime who says that I have inflammation in my sacroiliac joint (common in celiacs) and the pain can refer to the groin and lower abdomen.  Do you have any pain in that joint, too?  Worth a thought.


  11. This quesiton is for anyone who has recovered from neurological symptoms.

     

    I often read on celiac posts online that neuro symptoms are often the last to clear up.  I am trying my hardest to stay clear of gluten but the neuro problems persist, two years gluten-free.   They almost seem to disappear, then start off again.   Same things - buzzy ankle, tingling fingers due to ulnar compression/carpal tunnel, which has been properly DXd, and facial buzzing and tingles.  

     

    Are there any celiac veterans out there who experienced these setbacks?  Was it always gluten that brought these things back or did you have a hunch that other factors were at play?


  12. My cousin has just been telling me how helpful Pilates has been.  When I was having some work on my hips and neck my physio said I needed to do it - to do with core strength or something - but I am afraid I still haven't booked onto a course.  But my cousin put another light on it for me - she is a farmer and is always hauling heavy weights about.  But how she says it has helped is she is really thinking through how to move correctly and it is really helpful.  I think when particular joints are under strain this is very important.   


  13. My own nutritionalist actually saw someone who had been told she had MS and, being a very well-read and informed nutritionalist, just happened to ask this lady if she had been tested for celiac disease.  Apparently she hadn't - and guess what, it was celiac disease all along! 

     

    In the last decade or so have had four MRI brain scans but they have all been clear.  One of these post-DX and being gluten free.  Yet,  I still sometimes have twitches, tingling, buzzing, brain fog.

     

    My theory is that this happens more when I have taken my eye off the ball a bit with my diet - not taking enough trouble to make sure there isn't any cross-contamination; not eating really good quality nutritious food or not taking my supplements (B12 and magnesium are really worth looking into, as mentioned above).  To top it all, all these health tests haven't helped on the health anxiety front, which doesn't help the pains, tingles and twitches that I honestly think many people wouldn't take much notice of.  In my own case, on days when I am least focussed on these symptoms I fell much better!  When I have more time to think about them I feel far worse.   Obviously, everyone is different but I really think for me the anxiety plays quite a part in exacerbating the pains, twitches and tingles.


  14. Hello and welcome to the forum.

     

    I think, knowing what I now know about celiac disease, I would probably go for the testing.  Some of your symptoms sound rather like mine.  I had anxiety, brain fog, joint pain (althought mainly around the sacrolilac joint) muscle twitching (and for me eye twitching) and headaches of all varieties.  

     

    I also had had what I called 'a nervous stomach' for years.   All of this is quite non-specific, in fact, I don't think I would have ever been tested for celiac disease until, finally, I developped 'classic' gastro-symptoms' ie. diarrhea which endured for six weeks.  Here in the UK that is,as far as I understand, the point at which they start the tests rolling for celiac disease under the National Health Service system.  

     

    About six months before the more obvious gastro symptoms started with a vengeance the eye twitching (and also tingling in extremities) really got going.   I thought it was the anxiety.  I had some blood tests then and they discovered I was anemic and had borderline levels of B12.   I now know those things were due to my celiac disease.  I think I must have been short of magnesium, too, but was not tested for this.  I wonder, could you arrange tests for those deficiencies as they might be causing some of your symptoms whilst you wait for your celiac test.   If you discover you are low in these, it might point to celiac disease too.