Vicky_1989

I'm sorry you're not feeling better yet, but I'm glad others were able to give you advice.

Main reason I'm commenting is because my tongue has been like that for over 5 years now - I've had tests for thrush, swap tests, etc. and it always comes back normal. My tongue is always swollen, looks EXACTLY like yours and is very sore at times. My doctor claims it's because of my vitamin B12 deficiency, have you had your levels checked?

Hope things get better for you, though!

What changed for you after you went gluten free?
Stomach aches are pretty much non-existent, I don't get migraines any more; just the occasion headache. I don't have any hypoglycaemic symptoms - which was actually how I was diagnosed. I don't get indigestion either, which is amazing.

Did you have more energy?
I don't feel 100%, but before I went gluten-free I'd say I felt 20% but I feel about 70% now.

Lose weight? Gain weight?
I had issues with losing weight before I was diagnosed (lost 25 pounds) and I haven't been able to gain any yet, but I've managed to stabilise my weight but I'm still underweight.

Healthier skin and hair?
My skin has cleared up SO much - my skin used to be awful and when I do get contaminated, my face really suffers. My hair doesn't fall out as much either.

More regular bowel movements?
I suffered with diarrhoea before diagnosis and it's only just getting better.

Get rid of depression?
When I first went gluten-free, I was quite depressed as I was having withdrawals but I don't have as many low days any more.

Any bloating? How long did it take to see changes?
I bloat after certain things like milk, but I definitely don't bloat as much as I used to. It took around 1-2 months before I saw any improvement.

What symptoms have not gone away?
Brain fog, agitation (can't keep still), I still have problems getting to sleep because of restless legs and I get night sweats a lot.

Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes?
I never had a biopsy so I'm unsure of the damage, but my TTG blood test was still over 2000 (normal 0-10) when it was tested in April 2012, but they've said based on that it's going to take a long time for me to heal. I'm also self-diagnosed with DH, but apart from vitamin deficiency's, I think I've been pretty lucky.

Thanks. It is very painful, but the good news is that as long as I stay away from gluten, soy, most forms of corn, and foods high in salicylates, it goes away completely.

I'm glad you're able to prevent it.

Looks a lot like dh to me. I don't believe psoriasis blisters. Does yours burn or sting? Tail bone is a classic place for dh to present. You might be lucky so far in that it doesn't drive you nuts itching ---- yet. How long do the lesions usually last before they heal?

Oh, gee, I see now you are dx'd celiac ---- in that case you have dh. You've been gluten-free since 2011 ---- that explains why it doesn't drive you bonkers itching. You are getting cc'd somewhere & that's why the dh is showing up. Go over everything --- everything & try to figure out where the cc is coming from. DH is very, very sensitive to the smallest amount of gluten.

It burns as the blister appears but as soon as the blister goes and the "rash" appears, it seems to be fine. The patch on tail bone, however, is extremely itchy - especially at night. They take a long time to heal (4-6 weeks) but I generally take ages to heal anyway.

I had some BBQ Rib Doritos at the weekend and I think that's where the CC came from - there's no gluten containing ingredients but they're made in a factory that handles gluten. I know I shouldn't have eaten them, but I guess I'll learn from my mistakes!

Hmm, looks somewhat like DH but if you think you've been pretty strict about your diet, it also could be something else. My psoriasis started after I went gluten-free. I also get little blisters like that on my hands (and nowhere else) occasionally but It is NOT DH. Anyway, a decent dermatologist should be able to tell pretty easily.

richard

As I said to the above poster, I'm pretty sure it was the BBQ Rib Doritos that I was CC'd with. My mum and a bunch of my cousins have psoriasis so that's why I assumed it was that, but with the Coeliac I thought I'd get a few opinions. I guess if it gets worse, I'll see a dermatologist. Thanks!

I have palmoplantar pustular psoriasis. It only shows up on the palms of my hands and around the heels and bottoms of my feet. There is also a generalized pustular psoriasis that can show up on any part of the body. In both cases, the pustules look like whithead pimples. After a day or three they turn into little red spots. As they heal, the skin will crack and peel.

If your pustules don't look like whitehead pimples, that's not what you have.

I looked up palmoplantar pustular psoriasis and it doesn't look like that at all. Looks very painful though, I feel for you!

TtG can be related to other autoimmune conditions: thyroid diseases (Grave's/Hashimoto's), liver conditions (autoimmune hepatitis), diabetes, Inflammatory Bowel Diseases (Crohn's) among them.

Ask for copies of your blood tests. Even in England I think you can get access to that information.

I've been tested for thyroid problems and diabetes several times and it's always come back normal. Not sure what else it could be; perhaps I'll have to have a talk with my doctor, although I don't really get on with him and he tells me it's all in my head.

Probably could, will have to ask.