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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.

What Does Blood Test Mean If It Is Inconclusive?
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18 posts in this topic

I got my gastro doctor to call back with my results for the Anti glad. test and they said it was inconclusive. They said a normal person has 10 or less and I had 11. So that wasn't high enough to consider me as having celiac disease. So what could it mean then? I've been trying to research stuff but not having much luck. I have had symptoms for 8 years. My doctor wants to do a colonoscopy. Can he diagnose me this way?

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My doctor wants to do a colonoscopy. Can he diagnose me this way?
No. Celiac disease can not be diagnosed by a colonoscopy. Damage caused by celiac disease is to the small intestine, not the colon. An endoscopy is used to check for celiac damage to the villi.

It is common, though, to do both procedures at the same time.

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I got my gastro doctor to call back with my results for the Anti glad. test and they said it was inconclusive. They said a normal person has 10 or less and I had 11. So that wasn't high enough to consider me as having celiac disease. So what could it mean then? I've been trying to research stuff but not having much luck. I have had symptoms for 8 years. My doctor wants to do a colonoscopy. Can he diagnose me this way?

I have been seeing a wonderful Naturpath - hubby and I both had a saliva test for a few things plus gliadin. I have been tested 2 or 3 times for other reasons and i have had a 12 then a 10 my husband was a 12. I asked her do I really have a gluten problem I mean I was only a 10 and.. it is a huge life change- she was adamant that I did and that I should be very strict. I am so glad she told me this. I was so skeptical because I thought I should have a higher count. I then asked the Doc when do you diagnose a gluten allergy? She said if I see a 4 then it is not a gluten issue but 9 and above is a gluten issue and she hasn't had any with 9 and above that have decided they were not - all have felt better. She also tested my Vitamin D which was less than 7 which almost nil. I have been on 8K a day- so important that D. I realize now that my nails for me were the big tell - for the first time in my life my nails are not peeling all the time - I actually have to cut and file them! Hope this helps!

I have been gluten free since Dec 2008 and what a difference! I am so thankful for this discovery

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I have been seeing a wonderful Naturpath - hubby and I both had a saliva test for a few things plus gliadin.

Interesting. Mine was a blood test though. So I am still confused as to why the doctor isn't pursuing this part further. I guess just to rule out colitis too. I don't know. I just know when I go in for my colonoscopy I am going to ask for an endoscopy too and a biopsy of my small intestine to see I guess. I just want some relief but don't want to go gluten free for no reason.

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Interesting. Mine was a blood test though. So I am still confused as to why the doctor isn't pursuing this part further. I guess just to rule out colitis too. I don't know. I just know when I go in for my colonoscopy I am going to ask for an endoscopy too and a biopsy of my small intestine to see I guess. I just want some relief but don't want to go gluten free for no reason.

As far as the blood tests go I had never showed up positive in a blood test and it delayed my diagnosis by many painful years. If even one doctor had suggested I try the diet because of the high risk of false negatives my life would be very different right now. After I was finally diagnosed they tested both my children and my husband and all showed a low positive on blood tests and one child had the endo which while it did not show full villi destruction did show she was on the way.

I think you are wise to ask for the endo at the same time as the colonoscopy. You do need to go gluten free strictly for a couple of months after the testing though. False negatives are common in both blood and biopsy. Sometimes we have to rely on our bodies for the answer after testing is done.

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Okay I went to the doctor, did the awful prep for my colonoscopy. I love how they kept the doctor away from me. I didn't even see him til I went to the procedure room. However, that didn't stop me. I got to talking to the nurse. She agreed that I needed to get an endoscopy done especially since my blood work was inconclusive and my brother has celiac disease. Well, she went to ask the charge nurse if this was okay and they went over my blood work right there in front of me. I found out what inconclusive meant to the doctor. I got my blood drawn from a lab who according to them I have celiac disease. However another hospital in our area has a higher standard of diagnosing me. So if I had gone to that hospital and got tested it would have come back negative and all because of one little number. My antigladin was 11. According to the lab that did it 10 and below is normal. 11 is celiac disease. But Memorial hospital 11 would be normal and 12 would be celiac disease. Are you serious?! They aren't diagnosing me on a technicality?! That's insane! So needless to say I got my endoscopy done. I should know by Monday my results. Hopefully there won't be another technicality. I'm sick of this. Oh and by the way my colonoscopy was normal. No inflamation no signs of colitis. So if my biopsy is normal they will diagnose me IBS. Is it just me, or do you feel that IBS is just something the doctor's label you as when they don't know what else to diagnose you as? I am so glad I had a good nurse that listened to me. Otherwise I would have been so annoyed right now. Thanks to all of you for the advice to demand the endoscopy. Otherwise I wouldn't have know what to do. Much love!

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IBS is commonly referred to on this forum as the "I Be Stumped" diagnosis. :lol:

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IBS is commonly referred to on this forum as the "I Be Stumped" diagnosis. :lol:

Really?! That is so funny. I'm glad to know I am not the only one who thinks that is a crappy diagnosis.

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IBS is commonly referred to on this forum as the "I Be Stumped" diagnosis. :lol:

Really?! That is so funny. I'm glad to know I am not the only one who thinks that is a crappy diagnosis. No pun intended.

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IBS is commonly referred to on this forum as the "I Be Stumped" diagnosis. :lol:

Huh...my GP just put it together with my other symptoms and said testing would be waste of time. But then I had already effectively been gluten free just by being on the South Beach diet and had stayed off gluten when I figured out that my symptoms went away.

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Huh...my GP just put it together with my other symptoms and said testing would be waste of time. But then I had already effectively been gluten free just by being on the South Beach diet and had stayed off gluten when I figured out that my symptoms went away.

We are talking about you have been through this whole work up and had all these tests, and this has been going on for years where you have been telling him your multiple symptoms, and he comes up finally with this grand pronouncement: "YOU HAVE IRRITABLE BOWEL SYNDROME." We are like, yeah, I know that, by why?

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We are talking about you have been through this whole work up and had all these tests, and this has been going on for years where you have been telling him your multiple symptoms, and he comes up finally with this grand pronouncement: "YOU HAVE IRRITABLE BOWEL SYNDROME." We are like, yeah, I know that, by why?

That is a good question to ask. However if this doctor is like my other doctor he will just say we don't know why or stress. Here take some fiber everyday and take some immodium when you get the diarrhea. GEEZ!!! The last time I did that within a few months my appendix swelled up and I had to get it removed.

This is what is bugging me is I feel like all the stuff I have been through have all been related. I had stomach issues when I was about 11 or 12 and they never figured out what it was, but it went away. I woke up when I was teenager in severe pain in my abdomen and it was because I was constipated. Then After my first kid these typical symptoms started occuring severe cramping that lasts for a few hours only ending with diarrhea. I finally go to the doctor and they say it is IBS take fiber once a day and immodium when you have the cramping. A few months later I get my appendix taken out. Then I just figured I am just going to have to deal with this on my own since the doctor's won't help me. So during my second pregnancy I start having pains in my chest and upper back. Finally, after several doctors couldn't figure out what was wrong with me, I went to the ER. By the time they saw me, I was completely jaundice. I had a large gall stone that swelled my duct up huge which blocked everything and caused my liver to be enlarged, and for me to get pacreatitis. I got an ERCP to remove the stones and sludge. Then I got the gall bladder removed along with a liver biopsy. I eventually got released from the hospital a week later. Again still having the same issues. Finally one night my brother called me up and asked me a TON of questions about the symptoms I have been having and we were having the same issues. He told me he was going to this GI doctor and I just thought here we go again. Well this doctor found out he has celiac. I did research on celiac. Heck though all of this I have done research on all these disorders and the only one that makes sense is celiac. So yeah I demanded an edoscopy be done since my blood work got ruled out as negative on a technicality. One lab would have diagnosed me as celiac which was the lab that did the blood draw but the nearby hopsital would have called me normal. Well I have done research online and everything I am hearing would diagnose me as celiac. So all I have to say is heaven help this doctor if he says well it is IBS because I'm not buying it. From my research IBS does not wake you up from sleep. This has on a few occasions. And IBS doesn't get worse. This has. So how can it be IBS? I am very eager to hear the results of my biopsy tomorrow. I will be ready with plenty of questions for the nurse if she dare says well it must be IBS.

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Fortunately, regardless of the test results, the treatment is entirely under your control, and requires absolutely no input from your doctor. ;)

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Fortunately, regardless of the test results, the treatment is entirely under your control, and requires absolutely no input from your doctor. ;)

I know, but I guess I am a type of person that I have to have a diagnosis. That and my husband doesn't see a point in doing the special diet and all the prep stuff and special conditions unless I absolutely have it. However, from researching there is no real test to find out if you are gluten intolerant of gluten sensitive besides changing your diet and seeing if there is a difference, is that correct? Still no news from the doctor today, but I called this afternoon. I just got the old let me take your name and number and the nurse will call you back. No call back thought, surprise surprise.

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Okay I got my biopsy results. Didn't get to talk to the doctor just the nurse. She said it isn't celiac and the doctor is positive I have IBS surprise surprise. So now I am still on the journey to find out what this really is. I do know that my biopsy was normal though so that was good at least. I got these pills for IBS and am very hesitant to take them even if they will make me feel better. First it looks like they will just make me sleepy. It has something in it to decrease anxiety. And he wants me to take 4 times a day. It says the brand name drug is Librax. Anyone know anything about this drug? It says it can be addictive and I may have withdrawal symptoms if I stop taking it. That was the part that worried me the most about it. Any thoughts? What should I do from here? The doctor evidently doesn't want to test me for anything else. I got to the office next month and plan on giving him an earful of what I really think of IBS and his diagnosis. I know it isn't celiac but I also know it is something. Not a made up diagnosis they just made to categorize people with that they can't figure it out and just want them to shut up.

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Now is when you give the diet a good strict try to see if it helps. Celiac testing has a relatively high rate of false negatives for a variety of reasons. Doing the diet may give you the answer you need.

I was on the med you mention for a couple of years and for me it was quite sedating. You might want to give the diet a week or two before you start the med if you are concerned about the side effects.

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All of my tests came back inconculsive but in the blood test I'm IGA deffiecant so the blood test is pointless. As far as the biopsy it came back inconclusive too but here's the thing you have think about with that: Your small intestine is large if you streched it out so who's to say they looked at the right part. As my internist says to me: I treat people and not test results. You're test results say no but your symtoms say yes so as far as I'm concerned you have a gluten issue and don't EVER eat it agian.

I've been on the diet for 2 years now and problems that everyone told me were my Cerebral Palsy or related problems have gone away as has the unexplained pain and tremors and the "depression" I was dx'ed as have is GONE! I'm no longer on 5 diffreent meds to control pain or any of the other meds. If it were not for the gluten-free diet I am 100% positive I would be in a wheelchair and living with my parents instead of finally persuing my dreams. I'm doing so much better than I ever have in my life. The only reson I sometimes feel the need for the label of "Celiac" is if I'm sent to a specalist who refuses to test me for "Celiac related" conditions.

Try the diet. If it makes you feel better you have a gluten issue and all gluten should be avoided. Period. If it makes you feel better your partner should be understanding.

Labels aren't everything! Doctor's and thier tests don't know everything! My GI just tried to put me on an anti-depressent for an acid reflux problem! They don't know everything and some of them make up thier minds on what is wrong and don't even look at what's really there. If a label is that important to you look for a celiac specialst in your area that will do the genitic test for celiac and ask for an endoscpy. The colonoscy doesn't show Celiac.

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