Celiac Disease Support Group

Try going gluten free for a period of 2-3 weeks. Really commit yourself to doing this. Read labels on everything, and I do mean everything, you eat. A google search for celiacs disease should lead you to some websites that have lists of gluten free foods and foods to avoid that have it hidden in them. After that time period, if you feel better, talk to your dr about these results. Another step would be to keep a food journal of EVERYTHING you eat and write a note about any meals or foods that caused problems for you. If the gluten free diet does not make a difference, you might try eliminating lactose. My dr had me start with the lactose as my test results were inconclusive as to whether I really had Celiacs or not. Good luck!

Do Not go gluten free before seeing your 2nd opinion doctor. Your symptoms sound so familiar. Need to have blood work to include platelet and potassium counts. I would also ask for vitamin D level. Make a list of all these things that you are experiencing. Keep a journal of food intake and reactions.

Again, DO NOT go gf before seeing the doctor and getting additional testing.
Get all of your previous test results and medical records to bring to the new doctor.
GOOD LUCK!

I agree with ladywinger, get your second opinion first. Find a doctor in your area that knows what Celiac disease is and is able to diagnose it.

When I went to my primary care doctor and suggested I might have Celiac disease, he wrote me off right away. He said it was likely something else and I'd have to go get a lot of tests.

He didn't even ask about my symptoms, but instead he handed me a bag full of acid-reflux drug samples.

So, at the suggestion of a friend, I went off gluten for 2 weeks. At the end of two weeks, I was so frustrated with the lack of gluten that I binged on all my favorite foods. I was sick enough for two weeks that I didn't get out of bed. The symptoms lasted for 3 months. Headaches, upset gut, etc.

As a result, I can't eat enough gluten to get the test done, not that I could afford it anyway. But there is no way I would be able to have the traditional diagnosis right now. From what I understand, you have to eat 3 pieces of wheat bread a day, for a month, for the antibodies to show up in your blood stream. That would destroy my ability to do anything but lay in bed in pain.

If I could go back, I'd find a doctor that was a bit more educated and supportive of me, and get a proper diagnosis.

Ask the local Celiac support group, or look for celiac sites that list doctors. It is worth it.

What tests did you have done? My dr just ordered a blood test and a stool sample. I didn't have to gorge on gluten in order to have it done...the blood test was done that day.

I had the three blood testing proceedure first....all three came back positive...then I had the endoscopy for biopsy. This is when
it was proven that I had Celiac....and Lymphoma (which I have been fighting for almost three years now). I had been ill for so many years. I had every test under the sun done...but always missed.

Gluten can be the underlying cause for so many health problems. I can not stress enough the importance of finding the right doctor, getting the correct diagnosis and following the diet.

If anyone were to go gf for any length of time before seeing a doctor for second opinion (or even seeing their doctor for the first testing) ...then the testing would not be accurate.

I agree with Do Not go gluten free before having the celiac tests done. I did this and now am unable to tolerate the period of time (4-5 weeks) on gluten needed for the biopsy to show celiac results. It's recommended to get the tests first! I'm still undiagnosed, but after the last try (1.5 weeks on gluten)= I had all the symptoms from bloating, stomach pain, constipation, diarrhea (and sticky/fatty stool), muscle pain, fatique, joint pain, bone pain, irritability and depression. I couldn't make it the rest of the 3 weeks to my biopsy (and everyone in life - friends and family) agreed. Best to stay on the gluten to get the test results.

Why do you need a test if you go gluten free and your better? Wouldn't it be a waste of time and money? I don't have to have a test to tell me I am eating healthy.

You can have a coeliac genetic test at least that way you know if you are predisposed to become coeliac. You can be gluten free to have genetic test. Goodluck

Hi! I was diagnosed in April after being so ill I couldn't remember the last time I felt well!! My GP was fabulous and recognised th symptoms straight away, so much so that even though he told me what I would need to do to be well he strongly warned me against going gf before my tests. He was right as there was no way I could tolerate gluten after being off it for a while, so the moral of the story id DO NOT GO GF until AFTER all your tests. It was cripple you if you go off it and then have to eat it for weeks! In the UK you have to eat it for approx 6 weeks before the test so really not a good idea to cut it out before hand!!
My consultant at the hospital was brilliant and I was diagnosed within weeks and the rest is history.

Good luck and I'm here if you need to talk at all :o)