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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 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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Hi everyone,

I'm new to the forums and new to Celiac. I was diagnosed a couple weeks ago, by chance actually. I learned through blood tests and an ultrasound that I have Hashimoto's thyroiditis and while at the endocrinologist, she saw that I was also B-12 deficient. She said she suspected Celiac (apparently many with Hashimoto's have celiac) and ordered another round of bloodwork. All the tests came back indicating Celiac. I really do not have symptoms of it though. She wants me to go gluten-free but said I do not need to see a gastroenterologist or nutritionist, nor does she think I need biopsy of my small intestine. My general practicitioner thinks I should though. Which should I listen to? I'm not keen on the idea of a biopsy and am struggling with the gluten free diet, so a nutritionist would probably be helpful. Also, if I don't have many symptoms (occasional bloating, gas) is there much damage being done when I eat gluten? (I'm sure there has to be some b/c of the B-12 deficiency).

Also, I get the dermitis herpetiformis rash occasionally, but always assumed it was a reaction to a new lotion, etc. I did not realize what it was until I was researching Celiac, saw pics of it, and thought "Wow! I get that rash!" lol

Thanks for any input!

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Hello, and welcome to the board.

Yes, some of the lucky ones (or unlucky depending on how you look at it) do not have severe symptoms to indicate that they should not eat gluten. Nevertheless, if you are celiac it is still doing its damage, witness your Hashimoto's and nutrient (B-12) deficiency, since it is a disease of malabsorption.

Whether or not you have a biopsy is entirely up to you. You have bloating gas, the thyroid problem, the nutrient problem, and DH, and if you continued to eat gluten who knows what other problems you might develop (the possibilities are endless but I would think those are enough :D ). Doctors always like the biopsy because it has always been the "gold standard" of celiac diagnosis and confirms the blood work. However, some celiacs actually have negative biopsies yet still have the disease. And some with positive biopsies have negative blood work. So it's a bit of a crap shoot. If you feel you can stick with the diet as you are diagnosed now, and do not need the biopsy for your doctor to certify you as celiac should you need the designation in the future, I would personally not bother with it. Others would say go ahead with it because you may find something else, just as you accidentally found celiac. But since you do not seem to have many GI symtoms it probably is not necessary. If your insurance will cover it it is really not a big deal test and could put your mind to rest and/or give you some indication of the amount of damage you have (to make a believer out of you :P )

As for adjusting to the diet, read the Newbie 101 thread and do some other reading on here about deglutenizinng, avoiding gluten traps, etc. If you still feel you need a nutritionist then get a recommendation for one who is familiar with celiac disease. If they are not they are not going to be of much help to you.

Best wishes for your new gluten free lifestyle. :mellow:

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I personally think it will be easier for you to accept with a definite answer. Otherwise with out truly knowing, it may be too easy for you to cheat!

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If you have DH they can take a biopsy sample of the clear skin right next to a lesion to test it for antibodies. Confirmed DH is confirmed celiac, as only celiacs get DH. Sometimes people with DH have fewer intestinal symptoms, sometimes not. You are right, Hashimoto's Thyroiditis and celiac are associated, several members have both. For that matter, people with celiac have a higher chance of getting many other auto-immune diseases. Do check out the threads on DH, as there are additional diet concerns for people with DH, like iodine.

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Please read this thread, and then check out all of the threads in the DH section. Whether or not you are doing damage to your gut, if you have DH and keep eating gluten, this is what can happen to you.

http://www.celiac.com/gluten-free/topic/98656-pictures-of-dh-rash-biopsy-site-and-skin-shedding/

I would say that if the bloodwork came back indicating celiac, especially with the other problems you have, it sounds like you DO have it. Please, take it seriously. A nutritionist MIGHT help, but you will also get great info here on how to control your diet. It isn't easy at first, but after a while it just becomes second nature. We can help you. :)

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Thanks for everyone's input. I will look around the site more, especially the links some of you have provided. I do need to take this more seriously and buckle down with the diet. I am greatful I found this forum :-)

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Hang in there with the diet, the first couple of months are by far the hardest as you get used to what you can eat. Once you get it figured out, it really is pretty easy to cook gluten-free. Going out to eat is trickier but not impossible.

It is important to be totally gluten-free to get the full benefit of the diet. If you are consuming gluten, you will have a state of inflammation in your body which could cause other autoimmune diseases to appear... it could have caused your hashimoto's to appear. I have hashis and ITP which I think could have been caused by celiac disease, or at least caused to manifest earlier than it might have otherwise.

You might be pleasantly surprised by improved health in areas that you don't realize are affected by gluten. i have GI symptoms, they weren't extreme but they were annoying, and those cleared up pretty quick. I was happily surprised when my migraines disappeared though, up until my diagnosis, I was having migraines about half of the time... it's lovely to have those gone.

Best wishes to you.

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    • Weird Reaction
      Hi Richie By the sounds of it you could have gluten sneaking in somewhere, or maybe blood sugar issues,  or just plain anxiety, but it would be good to know for sure so you know what to do next. I think maybe the best course of action would be to see your GP and  tell him/her all your symptoms.  Book a double appointment as we say in the UK (but that isn't always possible!)  I dread seeing my own GP because as lovely as she is she is very fond of sending me for blood tests (which always seem to include liver function, thyroid and full blood count) which for someone with health anxiety isn't the recipe for a peaceful night's sleep!  But she is right, those particular blood tests, and others, can hold important clues when one has a lot of vague symptoms.   Celiac testing is of course another set of tests, which Flowerqueen has described well above.    If you do have all these tests and anxiety continues to be a problem, whether caused by by celiac disease, another medical condition or just being a stand alone problem, one book that I would recommend that really helped me understand the condition is 'At Last a Life' by  Paul David. I found it an immensely helpful tool in my recovery.   There is also a website. http://anxietynomore.co.uk/   Keep us posted Cristiana      
    • celiac disease is psychosomatic
      Unfortunately I feel this may be common.  For 6 years I was told I was fine.  Lungs fine, chest fine, just anxiety.  It was not until I pressed the anemia issue that I got a blood test.  Now I am a bit of a squeaky wheel to my doctor.  She referred me to Mayo Clinic in Rochester MN which has a celiac center.  I will meet with Dr. Murray (who is a leader in celiac research) next Friday.  If nothing else, you could always come to Mayo Clinic.
    • celiac disease is psychosomatic
      I read a summary report a doctor wrote about me. I thought doctors were more knowledgeable about celiac disease these days, but I guess not. The doctor diagnosed me with psychosomatic disorder when I told her the symptoms (including anxiety since the intestines regulate this) I had from years of undiagnosed celiac disease that affected my ablity to function. Please let me know if you had any disabling symptoms. I have heard stories of how others felt like they were dying. I felt the same way. I didn't mention that I felt like I was dying to my doctor, though. I just can't believe she thought my symptoms from celiac disease were all in my head like celiac disease isn't a real disease.
    • How long before you know you were glutened?
      Just was curious to know what other people experience. It seems that when I get glutened symptoms don't hit me till about 40 hours later. I had a tiny piece of cookie (not gluten free) on Friday around 6pm. Saturday I felt totally fine so I was thinking wow maybe I'm not so intolerant anymore then this morning (Sunday) holy moly!! Headache stomach ache and anxiety. So whats everyones time frame? How soon before you feel glutened?
    • Weird Reaction
      the shakes and nausea and feeling of doom, makes me think low blood sugar.  keep a good food diary. and assess for protein intake.
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