What other medical disciplines could deal with Mouth Ulcers?

[KatyMac]

I'm seeing Oral Health; earlier than expected as my routine appointment has been brought forward by the dentist after he saw my ulcers today (from July to the end of the month). I have about 9 at the moment & there are problems under my tongue.

But when I saw them last time they said they could do nothing as it was a virus or the menopause or stress or I was run down.

So if they still can't help, I was thinking of trying maybe:
Autoimmune (is that even a dept?)
Gastro (is that bowels?)
Allergy (maybe as antihistamines are helping)

I'm not really sure what other things to consider as we don't really do a "look at the whole of your body" doctor like in 'House'

My blood tests came back today & are completely clear

I am getting a copy of them - to send to my brother who understands these things

I have had a similar problem with my son who is 9. I have very bad crohns and he has reaccuring mouth ulcers. He has had blood tests but the doctor said they were ok. He has several at any one time though and I really feel for him. All the doctor prescribed was an antiseptic spray. I don't know if I should be pushing for more tests/medicine etc

I think I'd take the lead from him; I find my ulcers disbling and traumatic but he may feel he can 'cope' - but at the same time monitor his growth I have lost 21lbs in just under a year....this has not been intentional

My son had terrible mouth ulcers for two years, all sorts of tests, and changed to a non SLS toothpaste (sensodyne or boots own). We took him to a Chinese herbal doctor who linked it to a gastro problem, and he had three months of treatment. He has been completely clear for two months now.

See I wondered if he ham crohns or similar type problems. I will change his toothpaste etc. He just complains they are so sore (and they look it). He isn't underweight but is 'little' in stature. I just feel for him. They look very nasty and seem constant.

*has not ham :/

I have been Gluten free since Monday 24th - so maybe 10 days & 2 days ago I had the worst IBS attack I have had since Christmas

I know I didn't gluten myself - at least not in the 3 days before as the food was all completely home cooked and marked gluten free (plus my ulcers were so bad I wasn't on solid food)

I don't know I feel so let down & the next appointment with the GP isn't for over 2 weeks

I don't want to cope with this level of pain for the rest of my life

I don't think it's normal & I want help

I'm really sorry Katy. I don't know how thorough you're being with the GF diet - is it to coeliac levels of carefulness?

I know that when my then 4yo was diagnosed coeliac and went gf, we saw improvements within 3 or 4 days. But going gf also made him more 'sensitive' to even traces of gluten, so that he has much worse V&D symptoms now if he has even just cross-contamination.

Some coeliacs are also sensitive to the protein in oats (and some foods marked "gf" contain oat flour, so it requires even more label reading.

But from the sound of things, coeliac is not your issue. Can you get referred to a gastroenterologist for further investigation?

I've been cooking for a child with a wheat allergy for months & I used to Milk & egg too - so I think I have it covered

Stock cubes, soy sauce, non gluten flour, non gluten bread, free from fish fingers.....biscuits & cakes & chocolates don't even go there

I've just had all my blood tests back 'normal' for what it's worth - I have an appointment to see where we go from here

Sounds like you know what you're doing then Katy. How frustrating for you. I would ask for copies of all the blood tests, with the actual readings (the doctor has to ring up to get those from the lab). I expect you know this but there is a condition that about 10% of coeliacs have, where they are 'IGA deficient' which means that the usual coeliac blood test comes back negative (as it tests for an antibody that the person doesn't make) - I think nowadays they are supposed to do more than one different type of antibody test to allow for this.

I'm massively careful about cooking for this child & cross contamination - but surely cooking with wheat flour wouldn't contaminate me (I'm careful about hands not in mouth/face and I wash carefully - simply for food hygiene reasons)

Have you been tested for lupus?

Only thing that worked for me was Lysine supplements. I used to have them all over my mouth up to 1cm in diameter. Good luck, it's horrible.

Katy - for coeliacs the advice is that wheat flour stays airborne for 4 - 6 hours after it's been used for cooking, and will contaminate surfaces / exposed food etc. Advice is to keep all food covered, keep wiping down surfaces and not to prepare gf food in that time frame (make the gf food first and cover it).

Please go onto the Pernicious Anaemia website. Post on the forum and ask questions! Find out your levels! You have a family history of it and have many of the symptoms. I get so mad with the NHS guidelines on the levels for this. I can't understand why it seems to be ignored so much when treatment is cheap but symptoms can be devastating. You can't overdose on B12 (I've had an immunologist tell me you can but it's acknowledged by the NHS that you can't). So even if they tried it to see if your symptoms improved it wouldn't cost that much and would do you no harm. It's infuriating. Feel free to PM.

Thanks guys - that means we need to be more careful in the kitchen (anyway - irrespective of me)

is it this site? I'd have to join....

Katy you mentioned earlier that you have IBS - have you ever had a colonoscopy? Mouth ulcers can be linked to Crohn's disease and ulcerative colitis. My DS went through a phase of massive, v painful mouth ulcers while otherwise competely fit and well. My friend is an oral medicine consultant and even he was a bit stumped. In the end I mentioned it to my neighbour who's a homeopath and she gave him some little pills which sorted them out within 2 days on 3 separate occasions. This was 2 years ago and he's had none since. I'm a HCP and wasn't hugely into homeopathy but in this instance it appeared to work brilliantly. Maybe that worth considering? Poor you, mouth ulcers are a bitch.

I have - one about 20 years ago & one more recently

I think my body is just awkward

I have regular reflexology & we have been discussing ceasing treatment in case it is masking any symptoms

Hi Katy, sorry my post was such a rant it wasn't at you honest. Yes, that's the site I joined ages ago but I'm pretty sure it's free. The people on the forum are lovely, experienced at dealing with PA and extremely helpful. It's worth asking some questions and ruling it out if nothing else. My mouths full of ulcers at the moment as I'm having a flare up of IBS and I know my B12 levels are low, it's so painful so you have my sympathies.

it's £20

I'm sorry you're rotten atm - I hope you feel better soon

I am lying here on my bed; today I have:
#gone to the tip with DH (he loaded and unloaded the car & drove, I directed him to the right skips as he gets confused
#Gone shopping - wandered for about 30 mins
#visited my mum in hospital (DH drove)
#made the tea
#had a lay-in & an hours nap

I have:
#Muscle pain (thighs/chest)
#9 ulcers
#IBS attack
#crap food because of exclusion diet
#exhaustion
#joint pain (hands & wrists)
#bone pain (legs/arms/ribs)

It's not a fair swop