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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.

Is A Biopsy Necessary For Me?
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My 6 year old daughter was recently diagnosed with Celiac, (positive blood work and biopsy confirmed).  I suspected Celiac for her because my brother has it.   The whole family was then tested and my blood work came back positive (ttg ,72- even though by that time I was already eating a mostly gluten free diet).  

 

My question is- do I really need a biopsy to confirm diagnosis at this point?  I'm having a difficult time getting in to a GP for a referral to a gastro- I'm anxious to start my gluten free diet.  Though I didn't have many symptoms, I am hopeful and looking forward to improved stomach issues with the gluten-free diet.  It's hard to continue eating gluten while I wait.  Any thoughts on whether the biopsy seems necessary for me would be greatly appreciated

 

 

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I think for most adults, getting the biopsy done is a personal choice.  Some like to have it done so they are absolutely sure they need to go gluten-free, but that sometimes backfires as false negative biopsies are not rare.  Others like to know what starting point their intestinal damage is at in case they want to come back and check it.  Medically, I do not think the endoscopy is helpful except if you need to recheck progress with the biopsy, and not many people do that.

 

With a positive test, and a strong family history of celiac disease, it is probably celiac disease, but do what you feel most comfortable with. 

 

Best wishes with whatever you decide.

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I think for most adults, getting the biopsy done is a personal choice.  Some like to have it done so they are absolutely sure they need to go gluten-free, but that sometimes backfires as false negative biopsies are not rare.  Others like to know what starting point their intestinal damage is at in case they want to come back and check it.  Medically, I do not think the endoscopy is helpful except if you need to recheck progress with the biopsy, and not many people do that.

 

With a positive test, and a strong family history of celiac disease, it is probably celiac disease, but do what you feel most comfortable with. 

 

Best wishes with whatever you decide.

Thank you, Nicole!  

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I asked my doctor if I should have the endoscopy because I wasn't able to get a positive blood test but I have so many symptoms that are indicative of Celiac.  All of which improved on a gluten free diet.  My iron, vitamin B and D were low, liver enzymes were high, estrogen was practically non-existent, my blood sugar was fluctuating from at times very high and others very low levels.  Those were the things we could see a marked difference on paper, they all returned to normal levels after having been gluten free for a couple of months. 

 

Other symptoms like exhaustion, aches and pains, brain fog etc also went away.  They also feel that the reactions I have to gluten are way to violent not to be Celiac.  I wondered if I needed an on paper diagnosis though.  It sometimes bothers me that I don't have it, especially when people question how I can be sure.  My doctor said "You know you have it, I know you have it, there's no reason to do the endoscopy".  Not sure if that helps. 

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I asked my doctor if I should have the endoscopy because I wasn't able to get a positive blood test but I have so many symptoms that are indicative of Celiac.  All of which improved on a gluten free diet.  My iron, vitamin B and D were low, liver enzymes were high, estrogen was practically non-existent, my blood sugar was fluctuating from at times very high and others very low levels.  Those were the things we could see a marked difference on paper, they all returned to normal levels after having been gluten free for a couple of months. 

 

Other symptoms like exhaustion, aches and pains, brain fog etc also went away.  They also feel that the reactions I have to gluten are way to violent not to be Celiac.  I wondered if I needed an on paper diagnosis though.  It sometimes bothers me that I don't have it, especially when people question how I can be sure.  My doctor said "You know you have it, I know you have it, there's no reason to do the endoscopy".  Not sure if that helps. 

I totally understand.  My extended family seems to have a hard enough time understanding why I'm so strict with my daughters diet.  Without the official diagnosis, I think I would end up feeling defensive all the time.  But I suppose a positive blood test and family history should be enough.  I'm starting to realize that I shouldn't have to prove myself to anyone- I know I have it, that should be enough.  Thanks.

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It's possible to be strict with your diet without having a fully confirmed DX. I'd be the first person to say that if you can get one, do it, because it makes things easier, but as an adult, you can still maintain a 100% gluten free life without one. I don't even have positive bloodwork, as I got hospitalized in the process of trying to get there and my doctor agreed that gluten caused the hospitalization, so my family and I feel that it's more prudent in my situation to just stick with 100% gluten-free.

 

Most people are not going to ask or care about the details of your lab tests, just let them know that it's imperative that you stay away from all traces of gluten and stick to preparing and bringing your own food. Talk to family and try to educate them if you can.

 

My inlaws are supportive of my diet and they went so far as to buy a brand new separate grill (voluntarily out of their own pocket!) for the gluten free people, to avoid cross contamination. I also keep a flexible plastic cutting board at my IL's.

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I totally understand.  My extended family seems to have a hard enough time understanding why I'm so strict with my daughters diet.  Without the official diagnosis, I think I would end up feeling defensive all the time.  But I suppose a positive blood test and family history should be enough.  I'm starting to realize that I shouldn't have to prove myself to anyone- I know I have it, that should be enough.  Thanks.

I skipped the biopsy myself; positive tests and a family history was enough for me too.... Once your family sees you sticking with the diet, they'll probably come around - mine did.  :)

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Just wanted to follow up for anyone interested.  I finally got in touch with, through a recommendation, a great GE who recommended that I get a biopsy.  She felt it was important to get a baseline- to see how much damage has been done.  She also felt it would be smart, since I don't have a lot of noticeable  symptoms- just in case I wasn't actually incurring damage to my small intestine.

 

Anyway- my biopsy confirmed damage.  I have to say, I'm glad I did it.  For me personally, the peace of mind is worth it.  Now I won't ever second guess myself- and feel more confident standing up for myself.  Many of you might not need that, but I did.  Thanks again for all of your advice.

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That is great to hear you got some conclusive answers.

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I'm very glad that it worked out for you!  :)

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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