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Allergies and intolerances

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Original poster

mouth ulcers and stomach pains

43 replies

HenniPenni · 11/11/2006 23:32

4 episodes since may/june for my 9 year old daughter, have just googled the symptoms and it points to coeliacs (sp), can somebody please tell me the liklihood that this could be true, have scared myself. Please help.

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EllieHsMum · 14/02/2007 21:19

mollicot I had UC too, many moons ago. Since had bowel removed as I didnt respond to the drugs. Anyway you are correct mouth ulcers are a sign there is an issue. My consultant used to check my tongue & mouth first, before checking tummy, bottom & eyes.
hennipenni hope all goes well, I had to persist with my gp until i was diagonised.

EllieHsMum · 14/02/2007 21:21

Hennipenni just read my post back sounds a little scary. Sorry wasn't my intention, I am sure the refereal to the consultant with get things sorted.

Callmemadam · 14/02/2007 21:38

ElieHsMum - what sort of ulcers? Seem to remember ClarkeKent also had what I have - erosive lichen planus (supposedly) in the mouth on the soft tissue of the cheeks. Have coeliac disease in close family (mother) so am interested.

EllieHsMum · 14/02/2007 21:45

callmemadam As far as I know just regular mouth ulcers. (sorry don't know the medical terms) They where always on my tounge or cheeks, very sore. This could also have been a result of the steriods & many other types of medication I was taking. Sorry I am not much help.

clerkKent · 15/02/2007 12:46

callmemadam is right - I have coeliac disease and lichen planus. My consultant dermatologist is apparently writing a paper that establishes a link between the two conditions.

After 2 years Gluten Free and recently having all my amalgam filings replaced with non-mercury fillings and taking a steroid mouthwash for about a year, the lichen planus has just about gone.

mollicat · 15/02/2007 18:10

Hi there EllieHsMum

How do you find life now?

Just interested as my sister has been suffering for the last 3 years being passed off as being nothing, she's now had an op to remove the whole of her large intistine, her ulcers have now gone which she's over the moon about but she's still very weak - it takes her all day to climb the stairs and feels like she's not going to get better (she has a low pain threshold)

EllieHsMum · 15/02/2007 20:49

Hi mollicat

Your poor sister I completely sympathise The bowel removal for me was the best possible outcome. I had my whole large bowel removed & they surgeon formed what is know as a 'J'Pouch from part of my small bowel. So my small bowel basically does the job of both. I had a colostomy bag for 10 wks & then this was reversed. The stoma was the worst part of the whole thing.
I know that I would certainly not had my dd, if the operation had never been performed. If need to know more you can always email [email protected] I don't want to take over this thread with details of my op & UC.

Callmemadam · 15/02/2007 21:00

clerkkent - is your dermatolgist contactable, by any chance? I don't have malabsorption probs so no real symptoms other than I am very gassy, and lethargic after wheat, but have mother with coeliac, sister with thyroid disease and diabetic brother (I have LP) and I understand that all these auto immune conditions may be linked genetically (but I may have that wrong).

clerkKent · 16/02/2007 12:45

callmemadam - I have forgotten her name. I will look it up over the weekend (I'm writing this from work).

ChicPea · 23/02/2007 09:04

HenniPenni, I have coeliac disease. Had it since age 15 and not diagnosed until age 27. Avoided bread/pasta etc as I knew was a prob but didn't know why. A couple of years ago I was under stress and working long hours and would just grab some sliced ham (bought from Waitrose) and other things and an hour later would get a tummy ache. Thought it was stress and then one evening it dawned on me that the ham could have wheat so just ate that and nothing else and had the tummy ache. Wheat/gluten is added to the strangest things so do read all labels and even then it may say on label 'Allergens: egg, soya, milk' so you think its safe but on the list of ingredients if there is white pepper don't buy it as white pepper is black pepper mixed with flour. Oh and look out for Malt on lables as this is an offender without having the barley/oat/wheat label.Joining the coeliac society in High Wycombe will help you as they publish a gluten free food directory and you get mail shots from companies selling gluten free food. Waitrose sell Antoinette Savill white bread and rolls (and choc muffins) which are all delicious. Hope your DD is okay.

Original poster

hennipenni · 23/02/2007 10:34

Thankyou chicpea, DD is still waiting to see consultant, have found that she likes the Doves farm bread that I make so that's a bonus, she recently complained of tummyache after eating some different sandwich chicken- found out that it had the tiniest amount of wheat flour in it.

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Original poster

hennipenni · 23/02/2007 10:40

P.S also meant to say how scary the length of time is for a diagnoses.

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clerkKent · 23/02/2007 12:30

Its a week later and I haven't found that name yet...

DS sailed through his biopsy this week. DW and I were worried, but he was not in the least concerned. He woke up happy from the general anaesthetic, but with a headache.

We will get the results on Tuesday.I had the firm impression that the consultant does not think it is coeliac disease (due to negative blood tests), but DS has has 12 days sick with stomach cramp this academic year already.

Original poster

hennipenni · 23/02/2007 12:37

Gla your DS biopsy went well CK, hope you get the outcome that you want.

When I asked our Gp about testing he said she would need to go back on the gluten/wheat diet again (which I already knew) however I explained that I was not happy to do this unless she was deffo going to be tested as I felt that it would be unfair to subject her to all her symptoms incase they decide not to test her. However I really o hope that they will test although it means lots of time of school again.

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clerkKent · 23/02/2007 19:16

Callmemadam, its Dr Jane Setterfield, Guys & St Thomas's in London.

Callmemadam · 27/04/2007 22:23

CLARKEKENT _ Sorry it's so late but only just found your post, thank you!

clerkKent · 30/04/2007 12:37

Latest (and final?) update - DS's biopsy results were negative (i.e. not coeliac disease). He subsequently took a course of antibiotics for giardia, and he has not been sick since!

Original poster

hennipenni · 30/04/2007 15:08

That's good news clerkkent, our update is that DD is to have a gluten/wheat challenge in 6 weeks time, followed by a coeliac blood screen. (could have been earlier but holidays and youngest DDs hospital admission have got in the way-don't want her to be ill having challenged her with all this going on too)

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