Keen To Know If I Have Celiac Disease...

[uk-mum]

Hello all,

I've been reading through the boards for the last few days since my GI symptoms have been getting the better of me recently. I was wondering if anyone would be good enough to comment on my symptoms/history and see if it sounds like Celiac or something else or maybe gluten intolerance. I'm trying hard not to make my symptoms 'fit in' with what I've read here and elsewhere on the internet as I'm sure other things also present in a similar way. And I'll try to keep it short though I have a feeling it won't be!

Going way back to when I was a child (I'm now 45 female, 3 teen kids), I remember having dreadful 'growing pains'. Might well have been just that, of course, but I had no idea that that was a sign of possible celiac disease in kids until I read up on it recently, so thought I'd mention it. As a kid, I was tall but incredibly skinny and bony. Also, I went through a phase of refusing to eat when around 4 to 7 years old. Can't recall why. Even as a kid, I can recall being constipated.

Fast forward to adult years... 20s suffered same constipation long term. Doc prescribed fibre drinks. Didn't really help. Had kids etc...still not great in bowel dept but put up with it. Around the age of 35, I developed facial hyperpigmentation. Very annoying as it spread over next couple of years and now resides firmly on my forehead and cheeks. Doc said it was melasma and perhaps hormonal but nothing much he could do (didn't have it when pregnant). Around the same time, I developed hives all over my legs and sometimes on my forearms and armpits. Put up with it for a while as it came and went but at one time it got so bad and didn't go, I went to docs and got referred to a dermatologist. He didn't know what it was apart from 'hives' or idiopathic erythema something-or-other and ran a few allergy tests which showed very mild dairy (lactose?) intolerance but nothing else. He said it was too low to have caused my now massive rash. Hives stayed with me for many years. I have some shocking photos. I went dairy free for several years (in case) and didn't make any difference. Then I decided to cut out red wine (just a hunch) and in fact, I didn't drink any alcohol for a few months (I liked a glass or two a few times a week). Anyway, the rash seemed to respond. Within a week or two, suddenly no hives! (though they have since returned occasionally when taking NSAID's - which I don't now touch - and sometimes white wine now - which I do drink as red is a big no-no.)

All through this, my intestines have still been playing up. One minute constipated for maybe two weeks then I go totally the other way. I have hemorrhoids all the time. I spend maybe 2 hours a day in half hour stints trying to go. Also burning pains in stomach and sometimes nausea. The weight has crept on too. Always been really thin - and still am really - except for round my middle. There are a few stubborn pounds that won't shift, despite a healthy diet and exercise. I'm 5'10" and 65kg. No other part of me holds the pounds like my waist. But mainly my middle is large because of dreadful bloating - these days, it's all the time. I also have constantly churning, rumbling, gassy intestines and my husband (who works with ultrasound systems) scanned me and said he'd never seen such gassy guts! Don't I know it. Over the last few years I've had an intermittent sharp pain just under the bottom of my right ribs. Sometimes it goes through to my back. Went to doc who sent me for a gallbladder/liver ultrasound and said all was ok there.

Then I decided to go off gluten to see if it helped. Within 36 hours, under-the-rib pain had subsided. My brother has Crohn's (quite badly) and my mother has had an underactive thyroid for many years and is on thyroxine. She also has Sjogren's. My father has always complained of 'bowel trouble' (and naturally has swung to a very paleo diet) and his mother wasted away back in the 70s. When she died she was like a stick despite her ferocious appetite and her feet and ankles, I remember as a kid, were always swollen like balloons.

Anyway...back a couple of years ago when I went off gluten the first time (I felt a bit better, less bloated I thought, and stuck with it for a few weeks) I decided to go to the docs because things weren't a hundred percent and she suggested I might be celiac. She sent me for blood tests...which, of course, came back negative because I'd been off gluten for a few weeks. She offered an endoscopy but said if I'm happier off gluten, then stay off it. I didn't bother with the endo (bit scared tbh!)

I have to say, I know I felt better off the gluten although without a 'proper' diagnosis, but it sadly crept back into my diet. Last year I went to the docs (she must be sick of me!) because of my dreadful periods that were wiping me out each month. Turned out I was anaemic and pelvic scan showed adenomyosis - basically endometriosis in the uterine muscle. Possible endo as well though without surgical investigation, this couldn't be confirmed.

Oh, and also, on my quest for fitness (haha) my early running days gave me a stress fracture for no apparent reason other than running only about half a mile (I was early in my training then lol!). Fracture from running?? Also just been told I have jaw bone loss following an MRI for severe ear pain the last six months. I have tinnitus most of the time and ear 'popping' as if there's too much mucous in my eustachian tubes. I also have acid reflux and a recent trip to an ENT doc for my mystery ear pain (which turned out to be the bone loss) led him to ask me if I had acid reflux. Don't know how he knew just by looking. Also (though not at present) I've had interminable post-nasal drip. I have tingly hands and feet at night. I am entirely forgetful and useless at concentrating. It feels as if my once-sharp mind has been wrapped in wet cotton wool and microwaved for a day. I forget things I spoke about not two minutes previously and repeat myself constantly. What else...oh yes, always suffered (on and off) with depression and, more recently, ridiculous anxiety. Never used to be like that. Also I have very dry skin, I don't sleep (night sweats too) and have dark circles under my eyes. Several years back I had palpitations constantly and all the docs thought I was mad and it was panic attacks. Perhaps so, but my heart was definitely doing odd things for about three weeks. And personally, I think I look about ten years older than I should. Others say not but still...

Phew...there's probably more stuff but if anyone's still reading, you probably have heard enough! I know all this sounds very like celiac disease but then again, each of these things, if taken individually, could be 'one-off' things or IBS or stress etc etc.

I am actually off to my GP again shortly because of the increasing symptoms over the last few months. I've been gluten free the last 8 days with one slip-up and, while I feel a bit of a withdrawal, I can't say I'm bouncing around like a spring lamb yet. Though the rib pain has subsided mostly (except when my youngest made fairy cakes at the weekend and I felt guilty refusing and ate one - silly, I realise, but a good test as the pain came back 3 hours later.) I'm still very very bloated and have gurgly guts and all the rest of it. I'm willing to have the endo now and more bloods and will re-gluten in readiness if she refers me the tests.

Meantime, any ideas on these symptoms would be very much appreciated. Does it sound like celiac or am I grouping a bunch of unrelated symptoms? I was going to buy one of the home test kits but the shop had sold out. Any comments on those? How long would I need to re-gluten for to gain accuracy?

Thanks for reading my very lengthy story! I'll post updates in case anyone recognises symptoms.

[Cara in Boston]

Your symptoms certainly sound like they could be celiac.

If you are going to pursue testing, you need to resume eating gluten ASAP and continue a regular diet until all testing is complete. My blood tests went from very positive to negative with just two weeks being gluten free. Everyone is different, my son took over a year to get a negative blood test.

Cara