Does this sound like Coeliac?

hi there - apologies in advance for longwinded post

I've had gut problems all my life (mainly extreme wind, so painful that it would make me break out in a sweat and feel faint). I had tests in my teens (I'm 53 now) when I would end up in agony every time I drank a pint of beer. No diagnosis (no idea what tests were done).

Fastforward many decades. It's got to the point where the diarrhoea is threatening to make life very difficult (some very close calls when out in public). It's a standing joke in my family that I never put on weight (have in fact lost a stone over the last year) and poo 6 times a day often (true). Everything I eat makes me unbelievably gassy (so much so that I regularly get very little sleep, so am often exhausted). I had a load of scans for anything scary a year and ago so that was good.

Bloods showed borderline Coeliacs a year ago but I didn't find out about this until 2 weeks ago (saw different doc who showed me the results). In the meantime in desperation I'd started the low-fodmap IBS diet (so no gluten along with about a million other things) which initially made a HUGE difference (i honestly didn't know a poo could be like that :D). Another coeliacs test (again I didn't know it was done) showed that my antibodies had dropped to negative for coeliacs while I was (pretty much) gluten free. Since i found out about these tests I've tried to be properly gluten free (i really wasn't very strict before, had no idea about cross-contamination, sneaked the odd mouthful of cake if no one was looking etc).

Other symptoms: recent heart palpitations (new thing, not dangerous as checked by doc), restless leg syndrome, occasional migraines, recent outbreaks of spots and weak nails (never had either before), truly annoying itchy scalp and arms (but no rash or spots), recurrent thrush and mouth sores (which I've also assumed to be thrush).

And if it DOES sound like coeliac why am i feeling worse 2 weeks into being strictly gluten free? Even the low-fodmap doesn't seem to be working anymore

Oh and I have hashimotos hypothyroiditis (seems to be under control according to docs). Weirdly I have noticed that on the odd mornings my stomach isn't having a huge party when I wake up, it immediately starts up big time when I take my levothyroxine.

Any insights? I'm truly truly fed up with it all

Tillyxx

[Sickhorse323]

My daughter has a lactose issue. Before she was diagnosed she had constant stomach runs and severe thrush constantly. Stomach cramps, rashes would appear all over her body. After being diagnosed she gets these symptoms if she has the slightest traces of lactose in anything. We have to read food labels very carefully........

I have a problem with lactose and gluton. Recently diagnosed. I had colon cancer a few years ago. I can't drink alcohol. I get drunk on a 1/4 glass of alcohol. My stools were like rabbit stools. Small, hard peplits. Stool says a lot about people's illnesses. I had colonoscopies, stomach checks etc. The specialists did all the right things. All my organs swelled. I am a size 14 now but my body was so swollen I couldn't fit in a size 18. My husband said I should go on an elimination diet. Just soup. In one week I felt so wonderful. I had a little bit of energy for the first time in a long time. My stools started changing. I then eliminated all dairy. I felt even better but still had issues. Eventually eliminated gluton which was the hardest. I can't tell you how I feel now. I must have been suffering for years with gluton and lactose.....no more constipation, stomach pain, sore joints and muscles, bad brain fog,etc

My issue now is sever stomach gas and burping.....severe it's embarrassing. I have started taking charcoal tablets and they working like magic😊

[Hidden in reply to Sickhorse323]

Hmm i'd forgotten about charcoal tablets - anything's worth a ago - thanks very much. Hope you keep feeling better

[pepepoo in reply to Sickhorse323]

Turmeric honey warm water after meals..and get off that pc and take a walk .

[Jacks]

Zero antibodies mean your gluten free diet worked, but sometimes it isn't the elixir you hoped for as there is sometimes something else going on.

You mention you've had scans but have you had camera studies done of both ends and in between? (Particularly the 'bottom' one - I'd say that's your first port of call.)

Your 'other symptoms' could be due to medication and if you have inflammation you are likely to have a degree of malabsorption, especially when combined with diarrhoea. No wonder you feel rubbish.

Lactose can be hard work when you have poor gut function. Try some of the lactose milk/butter and see if that helps. It stops me having outrageous wind!

[Hidden in reply to Jacks]

I was interested in the change in antibodies when i went off gluten - still not sure if that means it IS coeliac, or if that would happen anyway if i WASN'T celiac?

But you are right - i need to not make assumptions... thank you. My GP's referred me to gastro consultant at local hospital, so am awaiting that appointment and trying to get my head around what I need to ask.

I've been using lactose-free milk but not, i must admit, butter or cheese (which i do love) - will try avoiding them too and see. Loving the description of outrageous wind - mine truly is, it's hard not to see the funny side sometimes (but only sometimes!)

GP is waiting for malabsorption test results so maybe that will give some info.

thanks again, i'm very aware that my long-suffering partner has probably had enough of my endless querying of every item we eat, so it's nice to "talk" to someone who's been there.

[poing]

Your levothyroxine could contain lactose... I believe the common brands do... so maybe that's the reason your stomach does a little dance after you take it.

Also, the thrush can be aggravated by nutritional deficiencies like iron and zinc. Perhaps your GP will consider testing for those.

[Hidden in reply to poing]

thanks poing. I did google whether or not the brand i take had gluten in this morning, but paid no attention at all to the fact that it had lactose in. Hmmm...

Thanks for the heads up re iron and zinc. It's back again this evening

[Ansteynomad in reply to poing]

I was going to,post that as well. You need to talk to your GP. Lactose free Levo is available.

[Hidden in reply to Ansteynomad]

thank you - will do that.

[virgolizzy]

Also have your Vit D levels, your calcium levels & especially your B12 & folate levels checked. Totally agree with all of the above too. Sometimes it is not just gluten alone that causes the issues, with many of us we do have other food intolerances/allergies too. Depending on your gastro views, they may ask you to restart eating gluten for 6 weeks so they can do an endoscopy, to get a firm diagnosis. At that point you will have to decide if a firm diagnosis is something you want weighed against the problems with eating glutne again. i refused to start eating gluten again & they agreed to do the endoscopy anyway & then they diagnosed me with coeliacs, but as I say that will be dependent on your gastros views.

Also get copies of all of your test results from your GP & as well as the actual figures, you can look out for trends upwards/downwards etc, which can be sooo helpful in trying to fathom out what is going on & what levels are normal for you.

An elimination diet is a good base to start from & listen to what your body is telling you.

There is loads of free info on a website run by Micki Rose, Purehealth & also Truly Gluten Free & a Paleo Autoimmune Book by Sarah Ballyntyne & her website Paleomom. The more info you have, the easier it is to look outside the box & join up the dots.

It can be a long process & healing yourself after coming off gluten will take more than a couple of weeks but also sounds as if you have a good gp, so I am sure both of you together will crack it, good luck.

[Hidden]

thanks virgolizzy - that's kind of what I need to hear, that it will take time and I need to persist. It's disheartening feeling worse now I'm totally off gluten (separate marmalade jars and boards, no less...) and it makes me question whether gluten is the culprit at all (then I will get tempted by cakes again...). Obviously I'll only know the true answer once all tests are done etc but it's good to know i need to be sensible and carry on for now at least.

I suspect I'll probably need to get a firm diagnosis to keep me strong on the gluten front, but not sure yet really. The idea of going back on gluten is, frankly, scary. Will see what the consultant says. Yes, I'm really lucky with our GP, she is, frankly, an angel.

Thanks for the refs, will take a look. And a good piece of advice to ask for the printouts of the results - I wish I'd done from the last GPs appt - I know the B12 was 312 which she said was ok (i think). But that's about all I can remember... Will take your advice next time

Guts great today (that's not a phrase I often say/type), very low fat tea yesterday and now am thinking high fat makes matters worse. I go round and round in circles with it all :D.

Thanks again

[erdfreak]

I sympathise with you, as this time last year I was in a similar position. I also tried the FODMAP diet, but for me the diet just made me worse from the start. I am now on the Specific Carbohydrate Diet (SCD) which unlike FODMAP eliminates all processed sugars, which can feed unfriendly gut bacteria. I have now been significantly improved for 10 months. Still the occasional problem when I try to vary my diet to make life more interesting, but now I am okay 90% of the time, rather than feeling crap 90% of the time. The diet is extreme at times, and is intended to help someone get right and then re-introduce foods gradually (rather like the FODMAP diet), but for me I intend to stay on it full time as it gives me the closest thing to normality I have had for the last 5 years. BTW, from my reading, some patients have reversed Hashimoto's using the SCD Diet, and find they no longer need medication. If what you are trying is not working, then I would highly recommend you try the SCD for a month to see if it helps you improve.

Good luck.

[FFNick]

Your teenage tests are not relevant now. Withdrawal symptoms could be what you are feeling now. Be careful of marmalade, where has its sugar come from? Medication can have fillers which are reactionary. Each person's diet is unique. Need to work out your own. Many react to beer, try wine or pure cider. Many popular ciders have caramel in to change colour. Where did caramel come from? Cider should be clear. Bottle coloured. Stay with it. In time you will feel better for it.

[liver-bird]

Hello Tilly - sorry to hear you have suffered so long. My story is similar. I now find I have antibodies in my blood and am waiting for a gastroscopy and biopsy and colonoscopy on 28 May to confirm one way or another whether I have coeliac disease. I know you can have cd without having antibodies in your blood and that a biopsy is the only way of definitely diagnosing.

I also have underactive thyroid and take thyroxine each morning. Also that is often when my bowels start to play up but I didn`t think it was the thyroxine - I think it is because that is when I start drinking and eating which triggers the digestive system. However, you could try taking the thyroxine later in the day and see what happens.

I expect the gastroenterologist will want to test you for cd and that will mean going back on gluten for a few weeks. Unpleasant but the only way to know for sure.

Good luck and let us know how you get on. Dianne

[Hidden]

thanks all - I think I'm probably clutching at straws that it will be a simple celiac diagnosis (tho I do know this is not something to wish for) - in all honesty those TTG levels are very low (even the borderline positive one) and I suspect I'm going to have to look elsewhere for the reasons for it all.

liver-bird (I've been singing that theme-tune all morning... :D) good luck with your tests, really hope you get some answers. It's so frustrating not knowing what's causing it all, and I'm so bored with food being something to worry about rather than just enjoy

[Hidden]

Just a quick one to say I got a diagnosis of celiac disease today. I know in the past it's been helpful to know the outcome for other folk, so thought I would update. The moral of this story is even with a VERY borderline blood test it's worth persisting.

thanks for all the help

Tillyxx