I think I may be on the right track thank goodness

[ShellyB]

Hi everyone
I've been reading through a lot of the posts on here to try and find out a bit more about coeliac and see if it rings any bells with the way I have been feeling. I have to say the more I read the more I realise that what is 'normal' for me isn't actually normal at all and I am feeling a bit bemused by it all but then I guess a lot of you must have felt the same.

Last year I went through a bad patch and really thought it had all resolved with HRT (I am 50) but I was left with gastro issues for which I am currently on Lansoprazole and Gaviscon. They don't really make any difference and to be honest it would be easier to write what I can eat rather than what I can't. My appetite upped and left months ago

I went low GI last November as I was suffering blood sugar lows and rapid heart beats/palpitations etc and this improved things no end apart from the acid/burning stomach sensation. I switched to wholgrain bread from white a couple of years ago and still eat plenty of that although I don't oftern eat cake etc as I usually feel pretty ill afterwards. Nor pastry since I was pregnant with my two children (reflux).

I wasn't happy with just staying on the meds indefinitely as instinct tells me it is masking something, or I'm not healing in some way and when I started to feel cold, exhausted, get pins & needles, pains in my feet and started losing hair I went back to my doc who ran full bloods.
These showed 'borderline' anaemia (ferritin 20 the 'minimum' level) and so he put me on iron pills and said I should be careful with my food (I am veggie) I mentioned coeliac as I have a family history and he looked through my results again and said 'no but you could be wheat intolerant'.

Within days my gut was protesting within an hour of taking an iron tablet and after a week my guts were burning. I was also wondering why my ferritin levels are low again (last time it was 7) and how on earth I can eat more iron rich foods when those are some of the only things I can eat without suffering with acid so I started a bit of research........

Mmmm... low ferritin results should be tested for coeliac
My B12 was 278 which I was told was in the 'normal range' but seems to me a bit too close to the bottom end.....
My cholesterol is low in spite of eating avocados, eggs etc till they come out of my ears
He told me to come off the iron pills immediately and read through all my notes and said 'we must test you for coeliac and refer for biopsy'

I could list endless symptoms I have had for as long as I can remember and some really troublesome ones including allergies and hives which flared up over the last couple of years (but I won't )




My Aunt is coeliac....my DS was diagnosed non-coeliac wheat intolerant at 5 with symptoms which left the docs shocked he tested negative for coeliac (and now leaves me wondering....) my DD was diagnosed with IBS last month..... and to cap it all we are Irish descent.

So... as I said I am feeling bemused by it all now... why don't they check routinely with family history? Why wasn't I tested when my ferritin was so low last time? But most of all... Why on earth did nothing click with me having gone through all this with my son 15 years ago. And even though I went on a wheat/gluten free weight loss diet in my late teens and felt fantastic...



Thank you for making all this information available... hopefully now I am on the right track even if I am not actually coeliac. I get the results of the coeliac blood tests tomorrow but I had already sent for an intolerance test to a lab here and they rang to tell me I was intolerant to at least one major food group. Watch this space

ShellyB

[mrsppmrxky]

Welcome to our little family!! I look forward to getting to know you. We are about the same age.

Just remember if you are going to be tested that you must continue to eat gluten until you are through with the testing. If not, your test results will be skewed.

Irish background? Then I can pretty much guess you at least have an intolerence for wheat.

Can you get B12 without an script from the dr? I know they were trying to make it impossible to even get vitamins in Europe without a doctor's okay.

You migth also want to be tested for pernicious anemia. They run hand and glove with Celiac.

I hope you get the answer that you need so that you are soon the picture of health.
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[ShellyB]

Hi Mrs P, thank you for the lovely welcome.
I love the photo

I got my results from the blood test today - negative - I don't understand these as there was no breakdown, just that - 'coeliac - negative' but I am being referred to a GI anyway, so I guess that's a step forward. I have no idea how long before I get an appointment but I will keep eating gluten until then anyway in case they might still do a biopsy (I gather they look for various things)
I half expected a negative but I still feel frustrated as it would have answered so many questions now and I could be dealing with it, but we did discuss dealing with wheat intolerance.

DH has reminded me to ring the lab for an upgrade of the labtest I sent off myself so I will know for sure what I am intolerant to rather than trial & error (I have developed allergies to several foods and red wine
)
I just keep thinking back to being wheat/gluten free all those years ago and how well I felt, even though it was only for a couple of weeks - I think it was the only time in my life I can remember waking up feeling full of energy and not feeling more bloated as the day went on.

I'll look into the B12, thanks for the advice on that.

ShellyB