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I Want To Help My Doctor Help Me


bellis

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bellis Rookie

I went gluten free 7 months ago, and symptoms went away almost immediately. Lactose free for a while but have been slowly bringing it back. In the past, i have felt dizzy from time to time, but lately almost dailly. Fingers and toes have begun tingling and numbness in toes for the past 3 weeks. left calf and knee are sore alot. went and had blood work done B-12 was normal, Iron was high, hemoglobin count was high. ANA positive,Range negative? at blood test, Speckled titer 1:40( WHatever all of this means ). Have been taking b-12 supplements and Multi's (without iron) all along. Never officially diagnosed other than elimination diet confirmation.

Am i still getting gluten somehow? i have had eggs at resturaunts here and there over the last month. Can and does gluten cause tingling and numbness even without a b-12 deficiency?

I'm nervous and frustrated. I may need a new doctor who gets it. they told me to come back next month, for more blood work and office visits. I could sure use some guidance, thanks...

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frieze Community Regular

if you were taking the B12 up till the time of the testing, the results are not accurate.....about the iron, try looking up "iron storage diseases"

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    • cristiana
      I am not a medically qualified person, but I think in your shoes I would do the same.     If you are in the UK, there are some really good gluten-free aisles now.  The largest range near where I live, currently, appears to be in Tesco's.
    • Katiec123
      @cristiana I’ve got an appointment with the midwife next week so will speak to her then. Waiting for gp to get back to me. I’ve made the decision today to cut gluten out regardless due to the risks I’ve read about 
    • cristiana
      Hi Katie I am so sorry you had two miscarriages in the past.  Try not to worry, though, because it could be that they were unrelated, perhaps? Well done for contacting your GP.  Is it possible that you can speak to your midwife in the meantime for a chat?    Cristiana  
    • Katiec123
      @cristiana hi!  the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 
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      @Katiec123 Welcome to the forum. I started to have symptoms related to coeliac disease (mouth ulcers, aura migraines etc) but no gastric symptoms during my first pregnancy.  That went to term, in fact, I was 10 days over and had to be induced.  But my second baby, born 21 months later, arrived at 33 weeks.  He's now doing well, and taller than all of us - it was just an earlier than expected arrival! I agree, it would not be wise to eat gluten  if there is any suspicion that you have coeliac disease during a pregnancy.   It would of course be good to know for sure, one way or another, because I believe coeliacs receive extra monitoring during pregnancy in many countries.   I think it may be well worth asking your GP if you can be referred to a gastroenterologist for a formal diagnosis asap.   By the way you spell 'coeliac' I'm guessing you are posting from the UK?  If that is the case, the NHS may rush things along for you, I suspect they will.  If it appears that they cannot refer you urgently, if you have the money for a private consultation it might be well worth it, as there is a trend here in the UK (I'm British) to diagnose coeliacs without the need for an endoscopy if the blood test results are compelling. Sounds like this is the case for you.  If you can see a gastroenterologist privately s/he might be able to diagnose you there and then (make sure you take a printout of your blood tests). Generally, there is a lot of support for coeliacs through the NHS, with a nutritionist, annual reviews and blood tests to check for diet compliance and health related issues, DEXA scans to check bone density, extra vaccinations where indicated and in some areas, certain gluten free food available on prescription.  So for lots of reasons, if you can get a diagnosis it's worth it. I hope all goes well with your appointment, let us know how you get on.
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