This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I'm 24 and have had problems with my hips for a couple of years now. It's like a deep ache/burning sensation that radiates down my leg - my doctor recently diagnosed me with hip bursitis, yours sounds similar!
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?
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.
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!
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 looked up palmoplantar pustular psoriasis and it doesn't look like that at all. Looks very painful though, I feel for you!
I've read everywhere that DH is extremely itchy, but mine is only itchy when it first appears. It usually starts off as a small blister (which is itchy) but once the blister goes, it's not itchy at all. My mum thinks it's psoriasis but I'm not sure. I don't seem to get it really bad either, just small patches.
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.
After searching the forum for people's TTG results, it started to worry me about my own results. A lot of people's here don't seem to be higher than 200 (from what I've read) when they were diagnosed.
In April this year, I had another blood test to see if any gluten was getting into my diet. I was strictly gluten-free (very paranoid about CC and forever cleaning the kitchen before I cook) for a good 5 months before I had my blood test but my results were over 2000!!! I'm not sure what it was when I was diagnosed but my dietitian did say it hasn't come down by much.
I'm not sure what other blood tests they ran but doctors in England don't really tell you anything.
Since being gluten-free my stomach pains and indigestion are completely gone but I still suffer major headaches, fatigue, non-refreshing sleep, joint and muscle pains and I keep getting recurrent sinus infections and infections in my wisdom tooth.
JFYI, I'm on vitamin B12 injections every 3 months (have been since 2007), been on vitamin D before as my level was 16 but was fine on my last blood test and my iron was okay too. I'm just sick of feeling like this.
Is there anything else that could be keeping my levels so high or any other reasons why I feel so rubbish all the time?
I only went on the injection to gain weight and I never have; actually I've lost weight and my BMI is now down to 17. To be honest, I haven't really got on with injection (heavy bleeding mostly) and my nurse kept telling me to give it longer but I think 3 years is long enough. I also think it's making my symptoms worse than they already are.
Have you had your vitamin B12 levels checked? You can experience tingling and numbness if you're deficient in B12.
As for the dizziness and blacking out, I also had problems with this and a blood test revealed low blood sugar (was 50 AFTER eating). Even though you've been gluten-free for a year, your stomach may not be fully healed yet so you might still be having trouble absorbing carbohydrates (well that's my problem anyway).
But I do believe Coeliac could be causing all of these problems.
Not sure I'm posting this in the right place, but anyway..
I've been on the Depo-Provera injection for 3 years now and I recently read that it can reduce bone mineral density. It also stated that people with Coeliac disease shouldn't be on the injection because of the risk of osteoporosis, but no doctor has ever told me this. I was diagnosed over a year ago, but before I even went on the injection I wasn't warned of any of the side effects.
I'm booked for a bone density scan (at my dietitian's request because my calcium is low) on the 22nd August, but even if the results are okay, should I come off the injection?
I never knew there was a name for this! I've experienced this several times in the past and I remember telling my step-dad what happened and he called me crazy. Thankfully, I haven't experienced anything like this since I went gluten-free a year ago.
Personally don't think there is a connection to Coeliac disease but it is interesting.