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Coeliac Disease?

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FindingNemo

Well-Known Member
Messages
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Over the years I have has regularly suffered with bad stomach, at one point the bouts were very frequent but stool sampling did not show infection as the cause and I was basically told it is one of those things.

The first time I really suffered was after my first miscarriage just over 10 yrs ago, I had a really bad dose of food poisoning from an Indonesian resteraunt in Amsterdamn, whic had me puking into the canal after narrowingly missing puking in the middle of the Van Gogh museum.

8 years ago I was in hospital with a bad episode of gastroparesis. Had been sick at home for a few days and it got so much worse, ended up in for 2 weeks, NG tubes etc then TPN feeding. Not such a great experience and ironically at that point I was incredibly well controlled with hba1c's below 6.

Since then, at times of huge stress, my stomach is always the first thing to go too. I also appreciate that my lifelstyle choices and poor diabetic control will have massive impact on this.

When I get a bout though, it often starts with the same foul smelling exceesive wind that I experienced during that bout of food poisoning.

I have been tested every so often for coeliac disease, but not sure when that last happened, but (and I know it makes Dr's sigh), I was looking at the internet today at a main coeliac site and I tick so many of the boxes. This is the list on the coeliac.org.uk site

bloating, abdominal pain, nausea, diarrhoea, excessive wind, heartburn, indigestion, constipation
any combination of iron, vitamin B12 or folic acid deficiency
tiredness, headaches
weight loss (but not in all cases)
recurrent mouth ulcers
hair loss (alopecia)
skin rash (dermatitis herpetiformis- 'DH')
defective tooth enamel
osteoporosis
depression
infertility
recurrent miscarriagesjoint or bone pain
neurological (nerve) problems such as ataxia (poor muscle co-ordination) and neuropathy (numbness and tingling in the hands and feet).

All those in bold I suffer with. Obviously I have had negative coeliac screening since the misscariages as these were all 10 years ago. I know the other sympoms could all be related to other things, but its not looking great, is it?

I shall print the list off and return to my GP
 
I have an acquaintance who had Coeliac type symptoms, was tested antold the tests were negative. She took matters into her own hands and went to a gluten free diet. all symptoms have gone. She wasn't doing anything dangerous and it worked, so it's worth a try.
 
I still want to get it checked first though and therefore cannot go on gluten free diet until tested, as this can provide false negative results. I will however give it a go sould my results come back negative. Last nights dinner was heavy in gluten and I puffed up like I swallowed a gas hose and withing three hours was being sick and really bad diarrhoea again all night. Still feel very gassy and bloated despite not eating today and still unable to lie flat.
 
nemo - I have been at the surgery today and saw a new coeliac!

there are alot of studies going on around the uk looking at the antibody levels as a method of diagnosis.It is more usual to do an endoscopy as well to look at the state of the villi in the bowel - this is where you absorb nutrients in the small bowel. Alot of new coeliacs present as a result of malabsorption - quite often iron!

Just a thought when you had the tests before had you been low carbing?

I would not rec the wacky food intolerance tests you can have done - many clients have had these done - funny they all seem to get the same result!

If you are diagnosed coeliac then you can get some foods on prescription.

You need to go and see your GP and talk it over with him. Also think about taking a probiotic yoghurt - it often helps with bloating.
 
I will go and see the GP and have no intention of visiting the local therapist who diagnoses food intolerances, you are so right, all my friend that have, have had similar diagnoses!

Just thought, looking at the list, I cn definitely add the bone and joint pain plus the defcective tooth enamel would explain why in the last couple of years my teeth have started falling apart.

Hadn't thought of the youghurts, will get some until I can organise the GP. Typically I amat uni the rest of this week and have my elective in London for the folloing two, so I hope this horrible bout of diarrhoea settles with my usual attempt of semi starvation.
 
Hi Nemo,
sometimes blood test results can come back negative for coeliac, when indeed their positive. For Andrew he tested posititve via blood test and it was confirmed by an endoscopy. Your symptoms definately seem to steer towards coeliac as a diagnosis. Andrew started off by having the most horrendous toilet episodes, i shan't go into detail, plus the type of wind that evacuted a room in 1second flat, tummy pains,weight lose, he was always lethargic and to this day even though we adhere to a strict gluten free diet ,painful legs. Whilst shopping the other day,he hypo'd as i was at the checkout handed him a mini coke and small bag of maltezers (opps wheat flour!) we allow malt extract it doen't seem to bother him. Unfortunately because of my mistake he has had 2 sleepless nights with painful legs and have had to give co-codomal to relieve his pain.
I think you should ask for another blood test, but until its done, don't cut gluten from your diet as it'l interfer with the result.
take care
Suzi x
 
Good afternoon,

I am both Diabetic (in 2008) and Coeliac (since 2001, that I have known about)
The two are connected...and there is a lot of evidence on this.

What you need to do...is keep eating the gluten ..in bread cakes pastries, pasta etc...a full normal diet.
Ask the GP/DNS for a blood test...and it will give a good indication, yes/no.
The next stage is a biopsy, not the most pleasant of events...but not that awful.
Be sure you are still eating gluten when you have the biopsy....
Then take it from there...

Give me a yell if you need help....

Apricot
 
2 things on that lst that I didn't highlight which may also be relevant!

The defective toth enamal - my teetch are forever chipping and I have 3 collapsed teeth. I have good dental hygiene, brush minium of 3 x a day, floss etc

The painful joints I get too esecilly my knees, whichhavbeen x-rayed and no cause found.

Didn't get to GP today, will try for 1st thing Monday before I leave for the big city.
 
Hi Nemo,
best of luck geting an appointment monday morning. When Andrew was about 3yrs old he had painfull knee/leg joints, he too got x-rayed and the consultants diagnosis was growing pains, though technically growing pains don't exist in the medical proffession! Anyhow when i look back, this is when Andrew became skinny, and constantly had painful joints, he wasn't diagnosed with coeliac til 5yrs later, but then they never looked for it until after being diagnosed as diabetic. Gives you an idea of what we went through, even know Andrew has the occassional pain now, sometimes it coincides with accidently eating gluten, other times during a growth spurt, we'll never know for sure, but my moneys on the fact he's had it for 5+yrs.
take care
Suzi x
 
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