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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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ReneeMartin    0

Hey there so after all the encouragement I got the other day I made an appointment went in and basically told my doctor to shut up and listen... maybe not quite "shut up and listen" but words to that effect.

I sat and read through everything and explained it all in what I'm almost certain was excruciating detail for him haha! He then responded with a barrage of questions some of which baffled me some what! "how easily do you bruise" my honest reply was "eh?" Then he spied the bruise from my previous blood test and his exact words were "holy cow! that's just from a blood test?" haha

Any way the questioning continued and he asked if I had any idea as to what I thought was going on so I told him about the conversation with my work colleague and he said that now he's got a full picture of everything he was going to do some more specific blood tests. He pulled the blood results that had been taken previously and babbled a bunch of medical talk and on seeing my bewildered face explained in plain English thank God!

It turns out that I am anemic, vitamin D and C deficient and have elevated levels of something or other in my liver. (apologies for the lack of liver info if I'm honest I was still trying to make sense of the babbling that he did previously) Whatever is going on there isn't serious though.

So he rattled through some more questions diet, exercise etc etc and finally sent me through to the nurse. After the bloods were taken he was quite intrigued to watch my arm bruise up. Even though the pinprick was TINY the bruise is unbelievably black/purple! He then went on to explain that what I am experiencing is "almost certainly coeliac" and commiserated + apologized for having missed it before. So the blood tests have been sent away and he said depending on the results I may have to have the biopsy done.

QUESTION - Should the biopsy be done regardless of the result. The way he was talking was that if it was positive he would not do it?

He then concluded the visit by saying "young lady, you have my full permission to go and eat as many McDonalds and other gluten offending foods as those days are likely to be coming to an end!" For as much as I understand the seriousness of the illness I can't help but feel that he was being pretty lighthearted with it all and the attitude he approached the whole subject with was refreshingly humorous!

I am also to carry on eating as I would normally until the results come back. These are expected to come in on Monday or Tuesday (which seems pretty quick!)

So until then what can I do to stop these stomach cramps dizziness and sighing/inability to catch a breath? Because I am currently unable to sleep even though its 02:11 AM. I'm also sat on the sofa, with my laptop on the floor typing this since I can't bring myself to sit up straight!

Thank you all again for your kind words the other day <3

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justlisa    29

Renee... Good for you... Hopefully, your actions will get you the answers you are looking for...

I would like to say, though, that his cavalier attitude (McDonald's) at the end is just another example of how completely "ignorant" the medical community is regarding food/autoimmune issues... Not "stupid"..."ignorant"... Sad...

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Jestgar    715

Tell us where you are again - different countries may have different answers for the biopsy question.

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ReneeMartin    0

Renee... Good for you... Hopefully, your actions will get you the answers you are looking for...

I would like to say, though, that his cavalier attitude (McDonald's) at the end is just another example of how completely "ignorant" the medical community is regarding food/autoimmune issues... Not "stupid"..."ignorant"... Sad...

Totally agree! I know that the minute I go and eat something like that I'm going to be on the sofa or in my bed regretting it!

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rosetapper23    236

Unfortunately, the only way you're going to make the digestive problems go away is to go gluten free, and your sighing/difficulty breathing is probably caused by your anemia. Besides iron anemia, is there any chance that you might also be Vitamin B-12 deficient? How did he address your nutritional deficiencies? Did he suggest that you take vitamins and iron? If you have celiac, you probably won't be able to absorb them right now....but he should have offered to provide you with intravenous iron or even iron injections.

No matter what your blood test results are, you should ask him on Monday how he intends to deal with your nutritional deficiencies, which should be tended to immediately.

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MitziG    94

Please be prepared that you still may have negative blood tests. It doesn't mean you don't have a problem with gluten, and it doesn't mean you aren't celiac. But blood tests miss 30% of celiacs...they just aren't that good yet. Please don't let your doctor tell you that gluten can't be your problem.

As for endoscopy...positive bloodwork is just that...positive for celiac. The endoscopy isn't necessary to dx usually, but a lot of doctors don't trust the bloodwork and insist on endoscopy. Also, it isn't a bad idea to see what all is going on in there. You can have other issues coexisting with celiac. So it is really your call. But you do have to keep eating gluten up until the endoscopy because villi heal really quickly in some people, and an endoscopy that looks good, or even one that doesn't quite SCREAM celiac, will make a lot of doctors refuse a celiac dx.

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nvsmom    332

I had positive ttg IgA and EMA tests. Together they can only indicate celiac disease... actually, apart they almost assure it is too. lol Anyway, my doctor didn't want to pursue the biopsy because, frankly, there was no point.

I can understand requesting a biopsy if you need to be sure it's celiac IF you end up with (false) negative blood tests, which as others have said, happens almost 1/3 of the time. If you think you might want a biopsy, you will have to continue to eat gluten until you have the test.

I'm afraid I have no idea how to relieve your symptoms except to suggest 3 mg of melatonin about 30 minutes before bed and it will help you fall asleep a bit easier when your mind is racing with thoughts of celiac... I know it's tough to de-stress when getting tested. Best wishes.

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