Could it be Coeliac?

[misswoosie]

Hi, sorry this is going to be a long one!

I've felt generally unwell for 3-4 years now.

Joint pains

fatigue

weight loss but not trying to (maybe 2 stone in about 2.5 years)

palpitations, low BP/dizziness when I stand up too quickly

loss of sensation in feet/hands with associated ataxia (balance problems)

brain fog/ confusion- trouble concentrating on anything outside my "normal" range for any period of time especially of someone talks fast or there are distractions.

poor memory

spotty, scabby,oozy sore scalp

Allergies that I never had before (think this might be the cause of the scalp problem). if a plant even vaguely breaks the skin I get a big red raised wheal. I sneeze a lot more than I ever used to and prone to sinusitis

dry eyes

problems with gums

several nasty sinus/skin/dental infections/abscesses

Eventually, 2.5 years ago I was referred to a Haematologist as my blood clotting results were off.

They found that I had a Monoclonal Gammopathy of unknown significance (MGUS). After being "off" for 4 months my clotting was normal by the time I saw her. Not been checked since.

The MG is in my Immunoglobulin M and is thankfully very small and stable but I have an associated antibody called Anti Myelin associated glycoprotein (Anti MAG) which is probably what's causing my neuropathy and therefore the ataxia.

This neuropathy started as vague symptoms on the bottom of my right foot over 5 years ago when I think about it, but didn't really take much notice of it as just felt someties like I had something stuck to the bottom of my foot

It's now in both feet and in the last 6 months the symptoms have worsened and are moving up into my lower legs.

I walk with a hiking stick when we go for walks , and the rest of the time, although I can walk independently, I tend to hang onto my husbands hand, or walk slowly with no sudden movements of my body or head with a bit of a stagger occasionally. In the house I bang into things and have the bruises to prove it!

I was diagnosed with Irritable bowel 20 years ago and go through periods of quite painful and severe constipation but at other times ,whilst I wouldn't say I have diarrhoea, there's definitely a need to get to the toilet quickly!

I also notice that now my stools are sometimes difficult to flush away and have a tendency to stick. (too much information?-Lol)

When I was first feeling unwell and GP was putting everything down to anxiety I had some private blood tests done and my B12 was 374. Again, it's not been done since.

I'm not anaemic. Hb is 120 g/l, but my Red cells are low normal at 4 (3.8-5.8) and White cells the same at 5 ( 4-11)

My total protein hovers around 65 (60-80) with albumin at 36 (34-50) having gradually fallen from 45 2 years ago.

I recently requested copies of all my blood results from the hospital and I noticed that my Creatinine has been below the normal range at about 48 (50-110). Now 53, but 2 years ago it was 60. Low creatinine can be associated with a low protein diet, which I don't have, or loss of muscle mass due to diseases or old age. It is interesting to see that my Total protein and albumin aren't staggering.

So I guess with the gut/poop problems, the other multi system symptoms and now the protein thing I'm again wondering if I have coeliac?

[Haylesss]

It’s really easy to get tested for celiac if you’re still eating gluten. It’s just a blood test. If you’re not eating gluten, they can test to see if you carry one of the genes for celiac, and if you do, you can then decide whether you want to reintroduce gluten for a couple of months to get an accurate blood test.

Lots of the symptoms you mention could be a result of celiac, but it also might be something else. I had similar and was convinced it must be gluten. After a long road of testing (I had to reintroduce gluten) it turned out it wasn’t.

Book an appointment with your doctor and get that blood test Good luck!

[misswoosie in reply to Haylesss]

It's a difficult one Hayless as the neuropathy is probably down to the Anti-MAG, and although most sources say that MGUS are asymptomatic, I think for the majority of people with them, they're not. Then comes the question of whether the monoclonal protein is actually down to some autoimmune disease. Been tested for all the usual suspects like Rheumatoid, SLE, Sjogrens etc etc and all negative. I know that MGUS can be associated with Coeliac. Will try and get an appointment before Christmas-LOL. Thanks.

[Julesboz]

I agree with the other response. It could be celiac but it also could be something else. It would definitely be worth getting tested for celiac, ask your GP. Vitamin B12 deficiency also ought to be investigated and I’d recommend posting on the pernicious anaemia site on healthunlocked, as a lot of the symptoms could be B12 related.

[misswoosie in reply to Julesboz]

That B12 result was normal. Sorry, should have posted the normal range.

[Julesboz in reply to misswoosie]

Normal doesn’t mean much, it just means in range. You can be at the bottom of a range and feel terrible. The range for B12 is normally something like 180-900. If yours was 347 it’s in the lower end of the range. I take sublingual B12 daily because, if my level goes below 300, I suffer symptoms despite my blood levels looking ‘normal’. In some countries if the levels are below 500 and the patient is suffering symptoms, B12 treatment is given. I’d strongly recommend posting to the pernicious anaemia group and getting more information. It may not be that, but it can’t hurt to investigate. I should say I’m not medically trained but have learned the hard way. I’m gluten, dairy, soya and alcohol intolerant and I have trouble absorbing vitamins so have to supplement iron, b12 and folic acid daily. If I eat the foods I’m intolerant to and don’t supplement I feel much like you, but according to doctors there’s nothing wrong with me (apart from not being able to absorb iron, for which they have no explanation).

[misswoosie in reply to Julesboz]

Hi Jules- yes I take B12 supplements because it was nearer lower end and my nails and hair are shitty! Nails are ridged and brittle and hair is lack lustre and dry on ends, greasy roots. Also suffer from depression for last 20 odd years and now the neuropathy so figured boost the B12. Same with Vit D3 and you are right that ranges for vits ( well D3 is really a hormone) and treatment thresholds.

[Cooper27]

Some of these symptoms could also be thyroid related. I'd suggest getting tested for both (thyroid and coeliac can often go hand in hand)

[Rmichelle]

Im with cooper i agree, i have thyroid disease with those symptons you have described plus iron def can give the same symptons...i have this too alongside hashimotos and graves disease. Get your thyroid tested, antibodies and tsh ft3 ft4. Good luck.x

[misswoosie]

I think I've had thyroid checked about 7 times over the last 10yrs and always fine, although probably not ft3 if that's the one they often don't do and not had thyroid antibodies checked. Last results 1 yr ago were tsh 0.98 (0.27-4.2) ft4 14.3 (12-22)

2017 Folate was 8.3, ferritin 54. Hb is around 130.

It was the protein/creatinine levels I was wondering specifically about. I was a nurse for 27 years and NEVER saw a below normal range creatinine.

Vit D3 2 years ago was 79 (75-200) . I take Vit D3 3,000 iu's daily since but not had it checked since then. I might ask GP if she'll check it again. I know it mostly comes from sun exposure, but it's one of the fat soluble vitamins.

Neurologist is checking my Vit A and E but not K, but not sure he knows about my abnormal clotting . I forget things and doubt the Haem' mentioned it as it resolved after a few months.

Onward and upwards!

[WobblyCaroline]

A really tricky one. Whilst posters are right that it could be something else, there are many correlations between Coeliac and/or gluten sensitivity and these conditions people who do a full elimination diet find significant improvements in conditions. I would encourage you to do a full elimination protocol for all suspect foods, not just gluten... and often you will find sensitivity to more than one type of food. It takes patience and time but is well worth it.

[Hidden]

Just a quick comment that my joints are worlds better since going gluten free. Hope you find some resolution!