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Does this sound like Coeliac Disease?

(36 Posts)
ShortyShortLegs Mon 19-Oct-15 00:47:55

I'm not sure if I have worsening IBS symptoms or something else....if anyone could have a read and give me opinions I would be very grateful smile

I've always suffered with indigestion/heartburn/constipation (since childhood, now 38) it got worse and about 8/9 years ago I was diagnosed with IBS (GP sent me for a scan to rule out gall stones first) and having been taking Buscopan and Omeprazole ever since.

Last December I was found to be B12 deficient so started a course of injections, but I was allergic to them so couldn't finish the course. I was given penicillin and steroids, but had an allergic reaction to the penicillin, so had a course of erythromycin which was fine but I have since reacted to.

I am also allergic to fish, shellfish, most fruits, latex, washing powders, perfumes, statins, several blood pressure medicines, Metformin, metals and have hayfever.
I have asthma and Type 2 Diabetes.

Since having the B12 reaction I have been having lots of allergic reactions and mystery rashes as though my skin has got even more sensitive than before.

But, the worst part is that my IBS seems to have gone totally opposite - instead of the constipation I now have horrendous diarrhoea and am living on Immodium.

Sorry for Too Much Information: I have awful cramping stomach pains, hot and cold sweats, nausea, sometimes vomiting, and then diarrhoea which is mainly pale/yellow and can be almost frothy and or mucousy (sorry). And there is so much of it, I am not over-eating, but I am going to toilet 3-4 times most days, up to 8 times on a bad day or if I don't take Immodium. I have awful wind, bloating, really fast bowel transit, tender stomach in the centre just below the middle of my ribs, lower back pain most days. I also get terrible pain in my lower stomach on the left side, but I have a piece of mesh stuck to my bowel from a failed hernia repair, adhesions and scar tissue, plus muscle and nerve damage from the op to fix it, so have lower stomach pains anyway, I think this diarrhoea and cramping is just aggravating that, and I feel like my stomach is being ripped apart. And my bottom is so sore blush thank goodness for Sudocreme!

Yesterday I cooked spaghetti bolognaise and within two hours I was in the bathroom with diarrhoea, nausea, hot sweats, cramps, 30 minutes later everything has left my system and I feel drained.

I feel as though I have a stomach bug or food poisoning most of the time, but I do all the cooking and five other people are eating the same food as me without symptoms! After the episodes I feel washed out, legs feel shaky, tender stomach, exhausted, just like with a stomach bug.

I am also suffering with recurrent thrush after every period for most of this year, so will be visiting GP about that, again. I have very long, heavy periods and am hoping for a hysterectomy.

The last 12-18 months I have had water retention in my feet/ankles/legs and can no longer wear socks...never had that before, but could be old age I suppose!

No-one in my family has Coeliacs, but my nan had B12 deficiency, frequent indigestion, constipation, diarrhoea and hiatus hernia. My mum has H-Pylori, constipation, gallstones and indigestion, both my brothers get frequent indigestion and heartburn.

I am wondering if it is worth asking the GP for a blood test, or is this just worsening/different IBS symptoms.....or maybe another food allergy that I haven't worked out yet! (all of my food allergies give me a rash/hives/itching as well as diarrhoea)

Any ideas?
TIA

minimalistaspirati0ns Mon 19-Oct-15 01:40:52

Ask for a gluten test but keep your diet as it is until you have been tested.

Even if the test indicates that you don't have celiac, I would try going gluten free for a month.

It really does sound like celiac to me though

minimalistaspirati0ns Mon 19-Oct-15 01:43:34

It is likely you have a relative with it too. It probably wasn't recognised or tested back then

Schrodingersmum Mon 19-Oct-15 07:55:54

You could be me!

A few educated thoughts for you, based on experience, interaction with a specialist nutritionist physio and my own research as a nurse who was dying due to mis diagnosis

Omeperazole and metformin can cause and exacerbate b12 deficiency, the jabs are useless for me, I now use Jarrow B12 methylcobalamin which is the most bioavailable form

Pain in the liver area and shoulder may be referred pain caused by b12 deficiency, you won't just be deficient in B 12 but most vitamins and if your folic acid levels are low you cannot even absorb the b12 as you need one for the other
I am one of the hidden coeliacs, 1 in 9 are unable to express the antibodies so get missed
Get a test urgently but ask them to check whether you have any Ig sub class deficiencies, also vit D levels as a lot is still not understood about gluten/ non gluten coeliac problems
I really would urge you to go gf after the test and see what difference it makes
If it reassures you I too had terrible reflux prior to diagnosis and was in a wheelchair with ME fibro brittle asthma multiple allergies many gut symptoms. Its taken 4 years to rebuild my body, replace all the vitamins etc that my body couldn't absorb but I now walk without sticks and have no need for reflux treatment, my asthma is stable for the first time in decades all by removing gluten flowers

ShortyShortLegs Tue 20-Oct-15 00:24:33

Thankyou do much for replying both smile

I will definitely ask for a blood test. And will try going GF like you suggest Minimalist (after testing!) I'd try anything to feel better!

Schrodingersmum Sorry you've had such an awful time, glad things are looking up for you. I had read (Google) that Omeprezole can cause B12 deficiency, but am reluctant to stop taking it because my heartburn is awful without it...would be great if that cleared up.

I am no longer taking Metformin, GP changed it to slow release version, but was no better (diarrhoea) so I insisted on changing again, so am now on Gliclazide which suits me fine so far!

With regards to the B12, my GP's won't prescribe alternative injections/tablets because they say I will be allergic those too....so, I am currently going without, only advise was to try and eat plenty of Marmite, fortified cereals, etc. to get as much as possible from diet.....I can't any fish at all, don't eat much cereal because it gives me high blood sugar, Marmite makes my mouth bleed and the food probably isn't in my stomach long enough anyway! It has already affected my nails, flaky with ridges and grooves and a split down my thumb nail for four years, now the others are going the same way.

I am not anaemic though....that was how the B12 deficiency was discovered, long, heavy periods means gynaecologists all say I must be anaemic so send me for blood tests every time, but I never am?!

I have a new pain (last 6-7 weeks) right between my shoulder blades, my back is stiff and achey most of the time....wonder if that is the B12 deficiency???

I will try and see my GP this week, but if I am refused a test or it comes back negative I am definitely going to try going gluten free, I've looked at the Coeliac UK website and the symptoms seem to fit.

Thanks again flowers

WiIdfire Tue 20-Oct-15 00:41:58

Whilst it is worth being checked for Coeliac disease, there are other things it could be - you could discuss with your GP testing for pancreatic insufficiency. That would give you poor fat absorbtion and pale floaty sticky poo like you describe. There are other things aswell, so you dont need to put up with these symptoms.

ShortyShortLegs Wed 21-Oct-15 19:45:47

I'm seeing my GP tomorrow, so hopefully will get a blood test.
I've written down all my symptoms, and started a food/poo! diary so hopefully that will help smile
The Coeliacs UK website has a symptom checker thingy with a printout which said I should get a blood test/investigations.

ShortyShortLegs Thu 22-Oct-15 17:28:01

I just wanted to say thankyou all for pushing me to get tested!

I have been to see my GP today, he read my list of symptoms and said he could not believe I had not been tested for Coeliacs before! Especially with my ridiculously long list of allergies and food allergies, and the IBS and he said several times it sounds like Coeliacs. He was very sympathetic.

So, I had a blood test done,
Coeliacs antibodies
LFT
FBT
U&E's
Bone Profiles.

Looking forward to the results!

Schrodingersmum Thu 22-Oct-15 17:32:36

Congrats, youve taken a positive step today, hopefully you'll soon be feeling much brighter flowers

minimalist000001 Thu 22-Oct-15 17:37:19

Great news. Keep us up dated x

ShortyShortLegs Thu 22-Oct-15 20:13:20

flowers

ShortyShortLegs Sun 01-Nov-15 00:43:38

Quick Update:

So, I had to see the nurse for flu jab and blood pressure check up. My blood test results were back....normal. But, she showed me the screen and it did say 97% of people with Coeliac Disease would have a positive result with antibodies, therefore for 3% it wouldn't show up......I have to make an appointment with my GP to discuss high blood pressure and a tablet I'm not allergic to confused so I will ask what the next step is....my stomach is definitely not behaving normally....I've had the full works of constipation, diarrhoea, vomiting, bloating and cramping in the last two days.
PS. A little premature I know, but my mum is a great baker and offered to make me some gluten-free bread to try, using Dove's Farm flour....it was horrible! The texture returned to rice as soon as you chewed it, can't imagine eating it as a sandwich. Is shop-bought any better?!

AcrossthePond55 Sun 01-Nov-15 00:48:59

I was positive for both antibodies and at endoscopy. Can you ask for an endoscope even if your blood work was negative?

Otherwise, you can always go GF and see what happens. But if you decide to do that, be sure you get dietary advice as going completely GF is not as easy as it sounds.

There are plenty of good GF breads where I am, but I'm in the US! Not sure if it's available in the UK, but Udi's is the closest to 'regular' bread I've found.

AcrossthePond55 Sun 01-Nov-15 00:50:10

Oh, and you can't just 'swap out' flours in a bread recipe. GF bread baking is a bit more 'fiddly' than that.

minimalist000001 Sun 01-Nov-15 00:54:50

Of you are going to try going gluten free, maybe stay away from gluten free foods which are modelled on normal glutenous foods - pasta/bread etc. They will often be a disappointment and so your best bet is changing your eating style.

ShortyShortLegs Sun 01-Nov-15 12:52:20

Thanks for replies....yes I am going to ask for further investigation, my GP said my symptoms sounded like Coeliac disease and was very sympathetic, so I am sure he will help.

The recipe for the GF bread was on the back of the flour pack, and followed to the letter!

I think you are right minimalist I'd rather eat something different than a disappointing lookalike!

AcrossthePond55 Sun 01-Nov-15 16:03:31

Just a thought, had you greatly reduced the amount of gluten in your diet before the blood test? If something makes us ill it's likely that we'd unconsciously stop eating much of it. That might have affected the result.

I wouldn't advise 'staying away' from GF products. Many of them are very good. It's all a matter of finding the 'right ones' to suit your palate. As I've said, though, I'm in the US so many of the products I use and love may not be available in the UK. You do need to read their labels, though. Many of them are higher in fat and sugar.

If your repeat tests come back negative, you may have NSGI (Non-Specific Gluten Intolerance). I don't know a lot about it, but it's a real condition although many people seem to pooh-pooh it.

ShortyShortLegs Sun 01-Nov-15 20:37:51

Thanks AcrossthePond no, I hadn't reduced intake at all, I saw on the Coeliacs UK website to keep eating it in at least two meals a day which I was/still am. To be honest I didn't expect my doctor to immediately refer me for testing, and really expected him to say it was just another food allergy or left over symptoms from my allergy to B12 injections and would settle in time...that's why I put off going for so long.

ShortyShortLegs Thu 05-Nov-15 17:57:36

Just a quick update: GP says can't be Coeliacs Disease because no antibodies but has agreed to refer me to Gastroenterology, so at least I might get some answers there.

AcrossthePond55 Thu 05-Nov-15 18:20:13

Good. I'm glad you're seeing a GI specialist.

Although, I have heard of people testing negative for antibodies and positive at endoscopy. Very rare and a 'fluke'. Usually having to do with gluten consumption and timing of the test.

Do you have any family history of either Coeliac or just GI problems? I'm adopted so didn't have a family history to look at, but I know others who had family with 'funny' or 'sensitive' tummies, a history of GI upset, lymphoma or other conditions that happen with uncontrolled Coeliac.

ShortyShortLegs Thu 05-Nov-15 19:00:25

Thanks for reply - I've always had heartburn/indigestion/constipation since I was a child, diagnosed with IBS about 9 years ago.
My nan had hiatus hernia, diverticulitis, Pernicious Anaemia, always suffered with indigestion/constipation/diarrhoea.
My mum has had Helicobacter Pylori and has gallstones, suffers with constipation and indigestion and has to watch what she eats.
My two brothers both get indigestion/heartburn/constipation.

However, I am the only person in the family with food allergies and other allergies apart from hayfever. And asthma, and diabetes (apart from the three other grandparents)!

AcrossthePond55 Thu 05-Nov-15 23:56:09

Sounds like you'd be a candidate for genetic testing. After I was diagnosed my DS2 was and we know he carries an allele for CD. He has a low chance of developing active CD, but he is a 'carrier'. DS1 refuses to be tested (silly). He was over 18 when I was diagnosed so it's his decision.

Happyminimalist Fri 06-Nov-15 00:19:02

Try going gluten free for a week anyway just to confirm

ShortyShortLegs Fri 06-Nov-15 01:05:18

I was hoping the GP would suggest an endoscopy even if no antibodies, but at least I got a referral. Luckily my children don't seem to have any symptoms of CD.

My eldest brother refuses to be tested for Diabetes (he was supposed to get a blood test when I was diagnosed 2 years ago)....crazy attitude, but I obviously can't force him!

Happyminimalist I think I will try that just to see if I feel better and then go back on the gluten ready for my appointment with gastroenterology.....is a week long enough to see an improvement?

MrsJuice Fri 06-Nov-15 01:35:07

Another think to look into is histamine blockers.
It could be histamine intolerance. Have a Google, and see if it rings any bells for you.
I got some free samples from: ink{http://www.eat-all.com\www.eat-all.co]]m}
They then send you a discount code in case you choose to buy their product, but other brands are available on Amazon etc. the reviews are a good indicator of which ones do the best job (obviously). I'm told that the active ingredient is all made in the same laboratory - but the prices and dosages vary.

I had loads of weird intolerances and vile migraines. The GP was treating symptoms, which was helping, if you enjoy being a walking pharmacy! hmm
It's certainly helping me, although I'm yet to go back on gluten in case the exhaustion hits again. I'll try it when I've been symptom free for long enough!

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