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granolagal

Diagnosed On Blood Tests Alone - Normal?

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Hi everyone,

After years of being sick, chronic infections, GI issues, losing my hair and my iron rocketing to a flat line, I spoke to a friend at work who suggested I should maybe be tested for celiac disease. So I called and requested it, and my doctor sent me for blood work and called back a few days later to say that I was confirmed positive for celiac disease. After reading online, and speaking to someone at the Celiac Association, I asked my doctor about being sent for a biopsy and she said it wasn't necessary. She said the blood work is now considered the gold standard in diagnosis. Can anyone confirm that she's right??

Also, I see on other posts that people say how much percentage they are recovered. What does that mean? How do you get those stats?

I'm just so overwhelmed right now.....I feel like I'm walking in a haze.

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Both blood tests and biopsy have high negative rates so if one or the other is positive you do have celiac. Not all doctors will require a biopsy if the blood tests are positive. It is overwhelming at first so do read as much as you can here and ask any questions you need to. As far as how much recovery folks have a lot depends on how long they went undiagnosed and how many systems are affected. For folks like myself that went over 40 years misdiagnosed sometimes complete recovery doesn't happen but for many of us we do recover fully. Stict with the diet strictly and do all you can to keep yourself safe. If you go with whole unprocessed foods at first it makes healing faster.

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Positive bloodwork and very low iron is plenty of evidence of celiac disease. Many doctors will avoid an unnecessary invasive procedure if they're really comfortable with a diagnosis. You probably had a lot of antibodies on more than one test. If you had anti-EMA that's definitely diagnostic.

Most celiacs go on the diet, the antibodies fall, the iron comes up, and they never needed a biopsy. The place where a biopsy is nice is if you have trouble getting your antibodies down and your Dr. wants to compare your biopsy to pre-diagnosis to see if you're healing.

As far as % recovery, I think most people in the thread were talking about how they feel or how well their various symptoms have gone away.

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Hi everyone,

After years of being sick, chronic infections, GI issues, losing my hair and my iron rocketing to a flat line, I spoke to a friend at work who suggested I should maybe be tested for celiac disease. So I called and requested it, and my doctor sent me for blood work and called back a few days later to say that I was confirmed positive for celiac disease. After reading online, and speaking to someone at the Celiac Association, I asked my doctor about being sent for a biopsy and she said it wasn't necessary. She said the blood work is now considered the gold standard in diagnosis. Can anyone confirm that she's right??

Also, I see on other posts that people say how much percentage they are recovered. What does that mean? How do you get those stats?

I'm just so overwhelmed right now.....I feel like I'm walking in a haze.

You doctor has been misinformed, a biopsy diagnosis is *still* the gold standard required for a diagnosis. Is it a gastroenterologist that told you this? There is some talk about diagnosis, for some people, being based on bloodwork only in the future, but that's certainly not the case at the moment.

When did you get the blood results and are you gluten free yet? If it's only been a few days or weeks then I would continue eating gluten and see a GI doc as soon as possible for endoscopy. I'd look for one that has some interest or experience with celiac, do you live near any of the celiac centers?

Some people are happy to simply go gluten free and be done with it, but you should know that if you go gluten free now it would potentially be very hard to return to eating gluten in the future just to be tested. I wanted to know if it was celiac or non-celiac gluten intolerance as it has implications for my family in terms of getting them tested, my insurance will pay for testing for 1st degree relatives of biopsy diagnosed celiacs.

EDIT: All that said, I would agree with skylark that given your iron deficiency anemia and the +ve bloodwork I think a biopsy would show that you have celiac. I still think if you're not yet gluten-free that you may want to give it some thought, especially if you have kids, before you start the diet.

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You doctor has been misinformed, a biopsy diagnosis is *still* the gold standard required for a diagnosis. Is it a gastroenterologist that told you this? There is some talk about diagnosis, for some people, being based on bloodwork only in the future, but that's certainly not the case at the moment.

I am a blood test negative celiac. No doctors wanted to biopsy because of that. I am a firmly diagnosed celiac though. When gluten was an issue when a doctor guided elimination diet caused a severe reaction I was referred back to a GI doctor who demanded a second challenge. Well I had such a severe reaction to the challenge, including a severe GI bleed I was then 'officially' diagnosed. The idea that the biopsy is the 'gold standard' is slowly losing it's strength and it is quite possible to be diagnosed with strongly positive blood tests. Some of the newer blood tests are very specific to celiac and some doctors are diagnosing based on that alone or on positive bloods and response to the diet

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I am a blood test negative celiac. No doctors wanted to biopsy because of that. I am a firmly diagnosed celiac though. When gluten was an issue when a doctor guided elimination diet caused a severe reaction I was referred back to a GI doctor who demanded a second challenge. Well I had such a severe reaction to the challenge, including a severe GI bleed I was then 'officially' diagnosed. The idea that the biopsy is the 'gold standard' is slowly losing it's strength and it is quite possible to be diagnosed with strongly positive blood tests. Some of the newer blood tests are very specific to celiac and some doctors are diagnosing based on that alone or on positive bloods and response to the diet

I'm not saying that you cannot be diagosed without the biopsy as you have been, but it can be hard to be taken seriously in some quarters without the biopsy diagnosis. Like you I have -ve bloods and a severe GI reaction, I've seen 3 GI's (two hopeless though) and none were willing to diagose me, even now with my 7yr old son a year later being diagnosed (by biopsy) with celiac, still no consensus on a diagnosis for me and I think that's how it will remain as I won't knowingly eat gluten again.

My son was biopsied last week, he had GI symptoms, +ve EMA and +ve Ttg, and still the pediatric GI discussed at great length the "what ifs" if his biopsy were to come back -ve.

I did speak to someone at the Celiac Disease Center in Chicago recently and she said that at the latest international conference they were moving toward a diagnosis based on certain +ve blood tests only, but that still would exclude you and me, and I think you would need a +ve EMA to get that.

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Thanks to everyone for your replies. It seems that, basically, it isn't totally unheard of. I guess my real issue is that I've lost confidence in my doctor. She never sent me to a Gastroenterologist, and when I asked for a referral to a dietitian, she told me she didn't know one and said I should call the Celiac Association. The worst was when she called to tell me my scores were positive, she said "you're good at googling, so go on the internet and you can read up on everything you can and can't eat". I felt pretty alone in the whole thing. Maybe I should call her back and also ask for my actual scores on the blood work? Everyone on here seems to know them, and I have no idea.

Oh ya, and she did say that I had to start on a gluten-free diet asap, so I started the day I was diagnosed, which was 7 days ago. I'm still feeling really sick - headaches, dizziness, nausea, fatigue, etc - so I'm very worried about going back on gluten. And I have no idea if I'll even be sent for a biopsy at this point. It seems like my doctor is pretty against it. I mean, I don't WANT to go through an invasive procedure, but this is a life-altering diagnosis, so I really just want to cross my "t"s and dot my "i"s so to speak.

EDIT: I meant to also say that I can only go to a GI or dietician with a referral from my doctor. That's how things work here, so my hands are tied without her help. I was also told that I'd have to wait 3-4 months to get in with a GI once I do (if I do) get a referral. I can't picture myself having to go back on gluten for the next 4 months!! :((

Edited by granolagal

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Thanks to everyone for your replies. It seems that, basically, it isn't totally unheard of. I guess my real issue is that I've lost confidence in my doctor. She never sent me to a Gastroenterologist, and when I asked for a referral to a dietitian, she told me she didn't know one and said I should call the Celiac Association. The worst was when she called to tell me my scores were positive, she said "you're good at googling, so go on the internet and you can read up on everything you can and can't eat". I felt pretty alone in the whole thing. Maybe I should call her back and also ask for my actual scores on the blood work? Everyone on here seems to know them, and I have no idea.

Oh ya, and she did say that I had to start on a gluten-free diet asap, so I started the day I was diagnosed, which was 7 days ago. I'm still feeling really sick - headaches, dizziness, nausea, fatigue, etc - so I'm very worried about going back on gluten. And I have no idea if I'll even be sent for a biopsy at this point. It seems like my doctor is pretty against it. I mean, I don't WANT to go through an invasive procedure, but this is a life-altering diagnosis, so I really just want to cross my "t"s and dot my "i"s so to speak.

EDIT: I meant to also say that I can only go to a GI or dietician with a referral from my doctor. That's how things work here, so my hands are tied without her help. I was also told that I'd have to wait 3-4 months to get in with a GI once I do (if I do) get a referral. I can't picture myself having to go back on gluten for the next 4 months!! :((

do you live in the USA? If she won't refer you can you see another primary care doctor who might?

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do you live in the USA? If she won't refer you can you see another primary care doctor who might?

No I live in Canada. I can only go to my own GP and only my own GP can refer me to specialists (e.g. GIs, dietitians, etc). *Sigh*

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?!??! Okay, now I just read that there is a smaller $60 blood work, and a "full panel" Celaic blood work for $125. I only had the $60 one!?!?!

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It doesn't matter. Sorry, but it was positive ...so you have Celiac. I have been seeing articles that getting a biopsy isn't always necessary. It is hard to get the GI docs to admit it because the endo & Colonoscopy seem to make them big profits. If she will write down the diagnosis without it, you saved yourself some time & effort. I had a " full panel". That had some out- dated tests on it that weren't necessary.

From what others have said on here, many dietitians don't know a thing about the gluten-free diet. My mom went to one for a very low sodium diet. Not helpful. She told her she could eat things with too much sodium per serving. Things that most eat more than a serving, too.

Read labels. Read everyday all the new posts on here for 2 weeks and you will probably know what you need to know. You might have a local Celiac Assoc that could give you some info on good places to eat out or shop. Or new products.

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?!??! Okay, now I just read that there is a smaller $60 blood work, and a "full panel" Celaic blood work for $125. I only had the $60 one!?!?!

I only had the $60 test too. What is the $125 one and do you know if you can get it without GP's referral? Or, can a naturopath order it? I'm in Canada too. I have spent $500 on blood work for various tests (eg. lupus, lyme etc...) Makes me wonder why these types of blood tests are not covered (by OHIP in Ontario)... maybe because none are 100% accurate in terms of diagnoses? Well at least my insurance covered it.

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I wouldn't be upset with the doctor, but after my current PCP saw all my test results and listened to my multiple year saga of the run- around with the "specialists," (ending with no official diagnosis, of course :ph34r: ) he accepts that my saying I have avoided gluten has ameliorated a lot of health problems, and we co - conspired to mark my records as patient must avoid wheat, rye, barley, etc. I don't care what "they" call it at this point, just don't expose me to it in a medical setting or via a prescription drug. He actually has gotten on the internet in the office, and shown me where to look for stuff when I injured something, and knows that some of us are very into this, so it's cool.

If you are at the mercy of an HMO, however, do whatever you can to get out of it and upgraded to a PPO health care insurance system in the United States. HMOs do NOT do well by auto immune patients, and will nickel and dime you to death and deliberately delay any attempt at diagnosis. This is how they get such nice statistics, by passively purging the troublemakers who might be sick. The horrible people at the one we bailed on kept making me wait months for appointments, and then months for tests when I started having the neuro symptoms, including loss of sensation, balance and ataxia dizziness problems, and vision problems, and could not have cared less. My so- called primary was almost NEVER available for appointments. But the thing that sent me overboard was the time they tried refusing to treat an asthma attack, they really are that vile. We all die of something eventually, but I was **** if it was going to be from a bad inhaler in my forties out in the medical office parking lot.

If there is any online guide to your disease put out by your HMO, research it for documentation. (Your state should have an insurance commissioner, which may want to review whether or not they are denying standards of care.) I researched the other things I had, and their official policy, on their website, was that over the counter medication was as efficient as anything else, so their official policy was to treat it by having the patient take over the counter meds. I am not kidding, I should have printed it out and framed it. I could have a life threatening complication (rare) and these clowns were going to follow policy and tell me to take an advil. And to live a healthy lifestyle. Their specialist also told me I had "fibromyalgia," even tho I had been truly diagnosed 20 years earlier by a real doctor, and had spinal stenosis and blown discs. :blink: Thanks, and buh- bye!

I have the kind of gluten intolerance which causes neurological symptoms, and the brain scan showed lesions, and the specialists in the subsequent PPO still couldn't put this together with my telling them that avoiding grains lessened the symptoms. But at least they ran some tests, which is more than the HMO would do.

Now, let me tell you the good news, my hair grew back, and it is now thick again and it's got some body and curl to it instead of that dreadful brittle limp stuff. I get far, far fewer infections. My allergies and asthma are much better, not gone, but putting the pets on gluten free foods (2 of the adopted pound dogs have allergies, too) resulted in my not reacting to them, so I'm not living from antihistamine to antihistamine dose, and even the cat is in the house not bothering me too much. A lot of the feeling has returned to my hands and feet, and even tho I am aging, I'm still carefully doing some outdoor type activities that I had nearly given up a dozen years ago. I can have fingernails if I want to, but I have to cut them short now instead of wondering why I couldn't grow any, because they broke off. My arthritis flares up much less. I don't have to walk with a cane. My c- spine is still messed up, though, so I have to work more carefully on exercise and balance than a normal person. My kidneys and liver function much better, and I can eat a more varied diet because I don't have gallbladder symptoms anymore.

All I had to do was change what I ate, and try to channel that over eager enthusiasm for studying things into reading labels more carefully. I hate being brain fuzzy, and the cleaner I eat, the less brain fuzz.

If you decide not to go the battle- of- the- specialists route, and take up the gluten free diet sans the biopsy-

If you ever have seen me here in the publications forum, I am notorious for hunting down screwy misleading articles in the media and some blogs, with ditzy, out of context quotes by "registered dieticians" who are messing up badly in terms of what a celiac and a sensitive gluten intolerant can and cannot eat. There are also a lot of Famous Medical Personalities in the Media

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You can get a false negative with blood tests..but not false positive. If your numbers show that you are having an immune response to gluten there's no need to go through an endoscope procedure for a biopsy. You are Celiac.

My Dr. gave me my DX after doing the endoscope (my blood test was negative). She said "you have Celiac Sprue. Don't eat gluten. Look it up on the internet." I felt like I was just given a "life sentence" and told to learn about it myself, so I understand your feeling of sort of being flung into the Ocean and being told to sink or swim. It feels pretty lonely..and scary.

There's tons of info here..you've found a good place to start. Be sure to use the Google search box near the top right of the screen for specific concerns. Read..read..read. We are here to help too!

You can do this! :D

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Thank you so much for all of your responses.

@Karen: Yeah, I guess false positives probably don't happen. It isn't a coincidence that I have so many symptoms and that I'm suffering from such severe malnutrition, even when eating so healthily...and then I come back with a "positive" test result. Thanks for the tip on dietitians. I found out the local chapter of the celiac association in my area is having a meeting for the newly diagnosed in 3 weeks, so I'll go to it and learn, learn, learn. This site is already helping emmensely, and I've only been on here a day!!!

@175comet: I'm in Ontario, Canada and my GP had to refer me for the $60 blood work. You also need a referral for the $125 "celiac panel". Unfortunately neither OHIP nor my work insurance covers it, so these costs are out-of-pocket for me. So far, just $60...which isn't bad compared to your $500! I'm really angry that OHIP doesn't cover it...I can't believe I have to pay to have my blood test for a disease!! HELLO?!?!?! :blink:

@Takala: You're post made me laugh and was informative and put my mind at ease all at the same time. Thank you for taking the time to write. I live in Canada so I'm not familiar with the PPO/HMO lingo, but I think I get what you're getting at. ;) I am determined to stay gluten-free now, even though it cements the whole "biopsy" question. I just can't afford to get any sicker than I am now. I'm at the point where it's hard to function. So I guess I'll accept my fate, and hope that my new diet will help turn this sinking ship back pointing upwards. It seems like you've seen dramatic results, and I can only hope for the same.

@Bubba's Mom: It's good to know there isn't such a thing as a false positive. So, yes, I suppose it's time to accept it. I will definitely keep reading.... Thank you for the encouragement! :)

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Thanks to everyone for your replies. It seems that, basically, it isn't totally unheard of. I guess my real issue is that I've lost confidence in my doctor. She never sent me to a Gastroenterologist, and when I asked for a referral to a dietitian, she told me she didn't know one and said I should call the Celiac Association. The worst was when she called to tell me my scores were positive, she said "you're good at googling, so go on the internet and you can read up on everything you can and can't eat". I felt pretty alone in the whole thing. Maybe I should call her back and also ask for my actual scores on the blood work? Everyone on here seems to know them, and I have no idea.

Oh ya, and she did say that I had to start on a gluten-free diet asap, so I started the day I was diagnosed, which was 7 days ago. I'm still feeling really sick - headaches, dizziness, nausea, fatigue, etc - so I'm very worried about going back on gluten. And I have no idea if I'll even be sent for a biopsy at this point. It seems like my doctor is pretty against it. I mean, I don't WANT to go through an invasive procedure, but this is a life-altering diagnosis, so I really just want to cross my "t"s and dot my "i"s so to speak.

EDIT: I meant to also say that I can only go to a GI or dietician with a referral from my doctor. That's how things work here, so my hands are tied without her help. I was also told that I'd have to wait 3-4 months to get in with a GI once I do (if I do) get a referral. I can't picture myself having to go back on gluten for the next 4 months!! :((

Hey granolagal,

I am new to all this too and had blood work done and all that was told to me was that my antibodies were highly elevated. My regular doctor's office called me and told me to go on a gluten free diet and that's all that was said from the nurse! I asked many questions but she said she wasn't able to tell me much other than that. After I read online I saw that going on the diet wouldn't help if I had an endoscopy done. Then the surgical center called and wanted $1200 before they would do the procedure since it goes towards my deductible. So I have put that off till January when I will get more money on my HSA card to pay for it but I am not sure what to do about the diet. I have done the diet for a week and feel changes already, but now I'm not sure if I will do the endoscopy or not. I do have an appointment Nov. 8th with a GI specialist, he is supposed to be the best, they say since he is head of the department. I think I will talk to him more then about what I can do.

Any thoughts on this anyone? I have been having worse symptoms this year and kept going back to my regular doctor and she finally ran the celiac blood work but thought more than likely I had IBS until the celiac came back positive. Just a little history, I have been having symptoms since 5 years ago and was mis-diagnosed by another GI specialist as having IBS. So yea, I am feeling overwhelmed by all this too and not sure which direction to go.

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