signs/symptoms suggestive of coeliac?

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Hi, 52yr old post menopausal ex nurse. 30 yr history of depression, but never referred to Psych. IBS 20 years, but never had investigations. Joint pains/stiffness years (more than 30 for wrists/hands/hips).Worse in morning.

Recently (last 12 months) feeling more depressed/anxious and mania and OCD traits. Brain fog, short term memory probs, trouble concentrating and doing routine things. Trouble following conversations and instructions.

Pins and needles hands, feeling like things stuck on bottom of feet, , feet feeling like they're on fire at night,worsening vision over last year (need glasses on to do almost everything now and lights on if darker, problems driving in dark, feeling like middle vison is bad but round the edges OK.

Walking into things (has been a problem for years,but worse now), losing track of time, can't stand on one leg or do heel /toe walking. Lose balance if I look up at sky or turn head to look over shoulder when walking. If we go out walking I have to look at the ground to see where my feet are all the time, otherwise I fele like I'm going to fall over.

Developed ?psoriasis of scalp about a year ago. Just on crown.

Ridges in nails (not sre how long)

I have a wonderful, supportive and loving husband, but my libido for last 10 years (we've been married nearly 14) is zero ( and I mean absolutely zero)

GP changed antidepressants about 6 weeks ago to Sertraline from Venlafaxine and after 5 weeks I thought I was going mad. Threatening suicide, yelling ,thrwoing things. Never been like that before. Stopped them. Felt better. Now on nothing to try and get to the bottom of this. Feel less depressed since taking B12.

BP low always (90/60) and was having irregular heart rate.ECG normal.Head sweating horrendous over last 4 weeks.

Weight loss about 10lbs and not trying.

Brain fog and fatigue, but not sleepy. In the past if I didn't sleep well could sleep well for 2 hours in the afternoon and feel better, but now can't sleep in the afternoon. Only sleep for 4 -5 hrs now

  GP wont do bloods or look at my head. "Make another appointment"

Have just paid for private bloods which show heamaglobin and Red cell count at low end of normal. Looks like I have too many cells of different sizes (RDW high) but they didn't do a reticulocyte (baby red cells) count Iron, Ferritn OK. b12 just OK, but have been taking B12 for 4 weeks. Vit D just OK but have been taking supps for 6 months.

White cells just OK (lower end)

Neutrophils and Monocytes just OK.(lower end)

My triglcerides and LDL are below normal range. Total chol and HDL good. Hb A1C good.

Thyroid function good.

LFTs and Kidney good.

Family history- Mother ( lives on wheat and refined carbs!) has diverticular disease and borderline anaemia - need to check her last bloods to be more specific.

Also ataxic, but she's 80 and hasn't done any exercise for eyars unless you count walking round shops

Her brother had an ileostomy 15 years ago for UC and pre cancerous polyps

Father died from bowel cancer

Uncle died from  anaemia in 1920's.

Based on my history and blood results I'm wondering if I have coeliac disease? I cut bread out about 6 montha ago and joint pain disappeared almost completely, but recently have been craving pastry/cake and eating more than ever used to before cutting out bread and joints are awful ATM , especiallt hands,wrists, thumbs and ankles feet and in the morning.

Sorry for such a long post and so much detail but thought better to get it all out there, plus I'm probably a little manic too! Any thoughts appreciated.

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4 Replies

  • Posted

    You're not going to love my reply, but yes it does sound like you could have Coeliac Disease and you should NEVER stop eating gluten until you're all through with tests for such.

    Don't take my word for it! Please, see a GI specialist. Probably 9 out of 10 people in this Forum will tell you to eat gluten and get tested...but it's really the experts whose advice you should follow now.  You're not just a little crampy, you have a multitude of issues. HUGS to you for going so long with all of this!! I'm so happy you have a supportive spouse!! 

    In my own experience - I'm not a doctor! - I think you could possibly have Pernicous Anaemia and/or Coeliac Disease and/or another type of Auto-Immune condition. These conditions can even lead to psychological or emotional issues along with the neurological symptoms, etc. that you've listed. My son has CD, I don't (and I've been blood tested, endscopy & biopsied). BUT my B12 and D were low and I had so many similar issues - just not to your degree in some. I had the tingling, vision, brain fog, depression (with some edge/anger), joint tinnitus, heavy feeling in my legs, fatigue, short of breath, and sensitive to noise (I have 2 young sons). I'm late-40s and pre/peri-menopausal. B12 shots over several weeks cleared up so so so much of what was plaguing me! Even some of the nerve damage was reversed! (I have some other issues that came before this and persist, like Raynaud's that causes tingling and Vertigo, so I still get dizzy)

    My son's diagnosis came from a Rheumatologist because he had joint pains, fatigue, etc. as a pre-schooler (well, his bloodwork diagnosis - then a GI saw him and took it from there). I thought I had MS.  Together, we have everything you listed, I believe. So, something in there lines up with your issues to me. It's good that your thyroid levels are in check.

    Is it typical in your family to be post-menopausal early in your 50s?  My mom & sister were a bit later and I'm not quite there yet...I thought that seems early?  Is that a symptom, too?  My other suggestion would also be a GYN since you have different hormone levels now and that may be part of the libido issue, too...

    My last suspicion involves food allergies - different from intolerances. Have you had any testing?  It's more of a long shot, but it came to mind so I was curious.

    Best wishes to you - please keep us posted!

    • Posted

      Hi and Thankyou. I also get Short of breath (although less now since taking B12 and Vit D, same with tachycardia) and have tinnitus and really intolerant of noise. Had thought that i might have PA, but little concerneI'm concerned that my white cells are only just in moral range. My Mother was in her 40s when she went through menopause. I didn't have first period till o was 16, and never had regular periods until I was 24, at which time I also developed cystic acne ( face only) which lasted till my early 40s. Before age 23 periods would come whenever they wanted,sometimes it might be a year. Funnily enough, sometimes I would feel PMT symptoms and nothing wpud happen, but I found that sometimes if o tookvitsmin b complex for a few days, my period would start. Have to find the energy to go and battle with my GP again. Will keep posting. Today I went to take card to Dad for Fathers day and came back from their house with I still in my bag. 😞 Crazy.
  • Posted

    You have all the symptoms of b12 deficiency/pernicious anaemia. If you are not absorbing the b12 then you can take all the oral supplements you want but your body isn't able to convert them to active b12 therefore your blood serum level will look ok but your body isn't using the b12. You need injections as you have neurological symptoms. Please search for pernicious anaemia on Facebook or b12 . Org on Google. Lots of Drs aren't educated enough on b12.

    • Posted

      but I must be absorbing the B12 from the gut for my serum B12 to be OK surely? I read that sometimes people can't absorb B12 which occurs naturally in food stuffs but they can still absorb synthetic B12.


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