Positive Blood Test But Doctor Suggesting That I Eat Wheat?

[KristenInWA]

Hi there,

After my GI symptoms and fatigue got worse, I broke down and made an appointment with GP (I had never seen her before). After explaining my symptoms she suggested I get bloodwork done for a number of things, including celiac.

Her office just called to tell me that my celiac bloodwork came back mildly positive (don't know what sort of test it was) but to be sure, they said that I should eat wheat containing products for the next two weeks and get re-tested.

This was exactly the opposite recommendation I was expecting. I've been trying to eat as few gluten-containing items as possible to prevent any sort of symptoms on the off-chance I really did have celiac, and I'm reluctant to do anything that will make me feel awful for the next two weeks if I've tested positive already. Is this common for doctors to do? I thought after testing positive the next step would be a biopsy.

Any advice people have on whether to go ahead with this would be greatly appreciated. If I need to make myself worse to get a definitive diagnosis and get better, then I will but I'm really not looking forward to the process.

Thank you!

Kristen

[Wolicki]

Kristen,

A "mildly positive" test result is like "a little bit pregnant." If it was positive, then it's 100% positive. I would call and ask for the results and post them here. The "experts" can tell you if you should go gluten free. If you need to have another test to prove it to yourself so that you can stick to the diet, then go ahead with an endoscopy. You will find that many here (myself included) declined the biopsy, went gluten free and never looked back. Good luck with whatever you decide to do!

Janie

[JillianLindsay]

Hi Kristen,

Welcome

You're right, your DR will likely move on to a biopsy (done by endoscopy), and in order for the biopsy to be accurate, you still have to be ingesting gluten. I (and a great many like us) went through this same thing over the summer. I basically knew what was wrong and how to start treating it, yet had to continue benig extremely ill until I could get in for the biopsy. It sucks, but to me it was worth it to have final confirmaiton/diagnosis from the GI specialist before pursuing the gluten-free diet.

Good luck!

This was exactly the opposite recommendation I was expecting. I've been trying to eat as few gluten-containing items as possible to prevent any sort of symptoms on the off-chance I really did have celiac, and I'm reluctant to do anything that will make me feel awful for the next two weeks if I've tested positive already. Is this common for doctors to do? I thought after testing positive the next step would be a biopsy.

Any advice people have on whether to go ahead with this would be greatly appreciated. If I need to make myself worse to get a definitive diagnosis and get better, then I will but I'm really not looking forward to the process.

Thank you!

Kristen

[KristenInWA]

Janie, lol what a great analogy thank you - I've been looking 'a little bit pregnant' for a while now - and I guess now I know why...when I get the numbers back I'll post them for the real experts here to evaluate.

Jillian, thanks for the welcome and for your feedback. It's good to hear that it's a common recommendation. I didn't really like my doctor -- it was the first time I had seen her -- and it just sounds so wrong to have to do that I figured she must not know what she was doing.

Given my personality I will probably want some kind of 'proof' because this will be a serious transition for me. Having that confirmation would be something I could look to when the bread was calling.

Thank you ladies for your quick answers!

-Kristen

[tarnalberry]

My "little bit pregnant" belly has been kicking me all night. (Or doing backflips... Something. That little girl is active!)

Find out if the doc wants to do a biopsy. If he's going to do that, then yes, stay on the gluten until that test. If it's to redo blood tests... why? They don't generally redo every other test you have.

[Squidge]

Kristen,

A "mildly positive" test result is like "a little bit pregnant." If it was positive, then it's 100% positive. I would call and ask for the results and post them here. The "experts" can tell you if you should go gluten free. If you need to have another test to prove it to yourself so that you can stick to the diet, then go ahead with an endoscopy. You will find that many here (myself included) declined the biopsy, went gluten free and never looked back. Good luck with whatever you decide to do!

Janie

The doctor was probably trying to say that the test came back borderline with the markers. The levels they test in those blood tests are in continuum, and the thresholds are arbitrary values they get from research. As with any value obtained from research, there is ERROR. Your doctor just wants to make sure, and if it is Celiac's eating wheat will raise those levels. Besides, biopsies are painful. I couldn't lift more than a couple pounds for two weeks after getting a biopsy for Crone's without causing pain. It's exactly like the pain I get from eating wheat except it is a pinpoint instead of shooting across the whole gut. Also it's a little more constant. I'd follow your doctor's advice if I were you. At least then you don't have to take enough laxatives to totally clear out your digestive tract. Besides, you aren't supposed to go gluten-free before a biopsy because it can mess with the results, and it will take a while to get in. If you want a diagnosis, which does have its advantages, I'd take your doctor's advice. Either that or just go gluten-free, however that may take a while to help.

[nora-n]

Yes, the doctor was right when he said to eat more gluten and get re-tested.

The tests are calibrated to only be positive when eating a lot of gluten.

Now you should eat much gluten, like 6 slices of bread a day or so, at least about 0,3 to 0,5 grams of gluten per kg weight, in order to get an accurate test.

The thing that concerns me is that you will already get re-tested in two weeks. This may be too soon now that you have eaten little gluten.

It might take at least six weeks, or 3 months, before the antibodies have risen properly.

In my opinion it is important to get a definite diagnosis, and not just a conclusion that you are not celiac after all, because of eating too little gluten for too short a time when tested.

nora

[KristenInWA]

Nora,

Thanks for your input - oof 6 slices of bread a day is a lot (especially since I've been trying to drop a few lbs). I haven't eaten bread for over a year.

I've looked at some labels but haven't been able to find the gluten content on any wheat products. Is bread the highest typically? I was thinking maybe a large bowl of cream of wheat in the morning instead, plus a boca burger instead of my regular turkey burget at lunch. Do you think that would suffice for the next 2-4 weeks?

Many thanks in advance for your help!

Kristen

[nora-n]

I recomment at least 6 weeks.

read the protein content, gluten is about 90% of the protein content (if no other proteins are added, like milk)

[KristenInWA]

Nora, Great I'll keep that in mind about gluten content and will see about scheduling my follow up test later on. Thank you for all of your help and thank everyone on the board for your posts. You guys are SUCH a wealth of information!

-Kristen

[Fiddle-Faddle]

Please keep in mind that if you DO have celiac disease, you will be damaging yourself for several weeks. Although most people here saw most or all of their symptoms disappear on a gluten-free diet, some did have apparently irreparable damage. Also, most people seem to experience much worse symptoms and faster damage when returning to gluten after a low-gluten or gluten-free diet.

One of the biggest risks with celiac disease is that of developing other autoimmune disorders, and that seems to happen more often and more quickly when on a gluteny diet.

I was in your position at the beginning, too, but as I already had a couple of unwanted autoimmune disorders, and as they responded VERY quickly to going off of gluten, my doctor respected and supported my choice not to seek further testing.

In addition, getting an official celiac diagnosis can be seen by the insurance company as a "pre-existing condition," which means that down the road, they can use it as an excuse to deny you coverage. This has happened to people with both life insurance and health insurance companies.

If you still feel that you personally need the official dx before proceeding with the diet, that is certainly your choice, and an understandable one. But it's important to know all the possibilities.

[nora-n]

Here in europe we usually do try to get a diagnosis, because we will get follow-up the rest of the life. Also, many places we get money or gluten-free foods and it can amount to a lot of money worth.

Also, patietns will be much more motivated not to cheat if they have a definite diagnosis.

Most celiacs I know here do cheat....I do not, but most here do. I assume that there is a lot more risk of cheating without a diagnosis. And not to forget the fammily, in-laws, outlaws, there is usually someone that cannot understand that someone has to be so strict, or they think the celiac is just making it up.

[CSU Grad]

Kristen,

A "mildly positive" test result is like "a little bit pregnant." If it was positive, then it's 100% positive. I would call and ask for the results and post them here. The "experts" can tell you if you should go gluten free. If you need to have another test to prove it to yourself so that you can stick to the diet, then go ahead with an endoscopy. You will find that many here (myself included) declined the biopsy, went gluten free and never looked back. Good luck with whatever you decide to do!

Janie

Well...just a little caution on terminology here:

"mildly positive" does not equal "100% positive".

Serology antibody tests are not very accurate....I know, I know...your doctor told you they were, but they are absolutely incorrect in this statement. A good statistician can explain to you in excruciating detail what the terms sensitivity and specificity mean, and a good epidemiologist can explain to you how that affects the probabilities that you have the disease.

Suffice it to say, in the end what you will learn is that the tests are not very accurate and have rather high false negative rates, as well as, a potential for false positive results, though far less than that potential of a false negative, which is anywhere from 5-43%, (based on a fairly recent study of past results).

That said, if you feel better when you don't eat wheat, then don't eat wheat. Unless you need a "diagnosis" that you most likely have celiac disease, there is no real need for you to put yourself through this headache of bouncing around between tests and doctors. Humans lived for many 1000's of years without eating wheat, so it's not a health risk for you to stop eating wheat, unless you don't find some other source of complex carbs, and some additional protein.

[CSU Grad]

Yes, the doctor was right when he said to eat more gluten and get re-tested.

The tests are calibrated to only be positive when eating a lot of gluten.

Now you should eat much gluten, like 6 slices of bread a day or so, at least about 0,3 to 0,5 grams of gluten per kg weight, in order to get an accurate test.

The thing that concerns me is that you will already get re-tested in two weeks. This may be too soon now that you have eaten little gluten.

It might take at least six weeks, or 3 months, before the antibodies have risen properly.

In my opinion it is important to get a definite diagnosis, and not just a conclusion that you are not celiac after all, because of eating too little gluten for too short a time when tested.

nora

More terminology notes:

The tests are not calibrated. They are based on evaluating persons, in a laboratory environment, who already were known to have celiac disease. They were not tested or calibrated in a clinical environment, or against large populations of more proportionately mixed positive and negative celiac disease persons.

Consequently, what you doctor is asking has nothing to do with the test at all. Your doctor, most likely, feels that you may have celiac disease, and wants to be more certain before signing their name to a diagnosis. Therefore, they felt, if you eat more wheat, then they, i.e. the doctor, would be more certain of their own ability to interpret the results. Additionally, because many people will transition from this serology result to a biopsy, your doctor wants to be as certain as is humanly possible, for them, that they are not sending you to an invasive procedure without due cause.

Also, "6 slices of bread", is a meaningless term. All bread contains varying amounts of wheat gluten. Some contain almost none, and are supplemented with other substances to re-add proteins taken away by not including much wheat gluten. These manufacturers do this so that they can sell the wheat gluten at a higher price in some other product. Consequently, one must specify what type of bread to eat, or what amount of wheat gluten to ingest....otherwise, its just a numerical guessing game, and will simply put you through more and more tests...

[CSU Grad]

Janie, lol what a great analogy thank you - I've been looking 'a little bit pregnant' for a while now - and I guess now I know why...when I get the numbers back I'll post them for the real experts here to evaluate.

Jillian, thanks for the welcome and for your feedback. It's good to hear that it's a common recommendation. I didn't really like my doctor -- it was the first time I had seen her -- and it just sounds so wrong to have to do that I figured she must not know what she was doing.

Given my personality I will probably want some kind of 'proof' because this will be a serious transition for me. Having that confirmation would be something I could look to when the bread was calling.

Thank you ladies for your quick answers!

-Kristen

Kristin,

Proof isn't all its cracked up to be...no test will give you absolute proof. There will always be some doubt somewhere.

The question I would ask you is this: "Do you feel that you are intolerant to wheat gluten?" If you answer yes, then change your diet.

[CSU Grad]

My "little bit pregnant" belly has been kicking me all night. (Or doing backflips... Something. That little girl is active!)

Find out if the doc wants to do a biopsy. If he's going to do that, then yes, stay on the gluten until that test. If it's to redo blood tests... why? They don't generally redo every other test you have.

Also, be aware that you do not have to have the biopsy done. There are DNA tests available that will either rule you out completely, or include you in the possibility that you may have celiac disease. Given even a slightly positive serology antibody test, an inclusive DNA test, and your symptoms, you should feel more than comfortable in saying, at least, that you are "allergic to wheat gluten".

[tarnalberry]

Also, be aware that you do not have to have the biopsy done. There are DNA tests available that will either rule you out completely, or include you in the possibility that you may have celiac disease. Given even a slightly positive serology antibody test, an inclusive DNA test, and your symptoms, you should feel more than comfortable in saying, at least, that you are "allergic to wheat gluten".

The problem is that the genetic tests (particularly in the US) do NOT "rule you out completely". They do not check for ALL of the genes and variants that can contribute to celiac, and they do not check for the gluten-intolerance genes. They'll get you most of the time, but about 5% of the time, they'll lead you the wrong way.

[CSU Grad]

The problem is that the genetic tests (particularly in the US) do NOT "rule you out completely". They do not check for ALL of the genes and variants that can contribute to celiac, and they do not check for the gluten-intolerance genes. They'll get you most of the time, but about 5% of the time, they'll lead you the wrong way.

I think you've missed the point entirely.

The DNA test was never advertised as being able to "rule someone out", nor did I suggest that.

The DNA test can tell you IF you are predisposed to celiac disease, and it is 100% specific. (not sure where you get your 5% numbers....) You seem to be confusing your principles of statistics here.

Further, it does not matter if you can not be ruled out. What matters is IF you require a positive diagnosis. Why? Because if you feel better when you don't eat wheat, then don't eat wheat. It's the age-old adage, "Doctor, it hurts when I do this, what should I do?" Doctor: "Don't do that!"

So, the point is: If you need a positive diagnosis, then get the tests until the cows come home. If you don't need the positive diagnosis for some insurance problem or something, then just stop eating wheat.

There is no physical requirement, at all, for humans to eat wheat in their diet...

A Similar anecdote:

If when you eat shellfish your trachea closes shut and you have to go to the ER, do you need a positive test result for a shellfish allergy before you stop eating shellfish?? Of course not.

The same is true here. If wheat makes you feel bad, stop eating wheat...the rest is purely academic.

[nora-n]

hi, in real life DNA tests for celiac genes ARE used to rule out celiac. Only some doctors will admit that anyone without DQ2 or DQ8 can be celiac.

Like some yera ago here someone with diagnosed celiac was tested and she was DQ6 and they took away her diagnosis.

Another one posted some years ago that she was one of the few with DQ6 with a celiac diagnosis in the U.S.

The gold standard is still the biopsy.

So the doctor is just trying to do the right thing, re-testing and then sending the patient to a biopsy.

About the antibody tests and cutoff or whatwver you call it, you probably have some explanation, there was an article here at celiac.com about researchers sending blood samples of diagnosed celiacs out to diferent labs, and many labs only detected half of the celiacs, and othes detected 80% or so. The conclusion was that many labs have a higher cutoff in order to avoid getting any false positives.

About the 6 slices of bread, this was just to illustrate one has to weigh the slices and read the label and do the math, as most websites used to say that two slices were enough. Also, I know of no bread with non-gluten flour ingredients here in Europe and yeast baking requires enough gluten, in fact they usually add gluten if they bake course bread to get it to rise properly. I have not seen other protein added but the label should say so if there is.

[tarnalberry]

I think you've missed the point entirely.

The DNA test was never advertised as being able to "rule someone out", nor did I suggest that.

The DNA test can tell you IF you are predisposed to celiac disease, and it is 100% specific. (not sure where you get your 5% numbers....) You seem to be confusing your principles of statistics here.

Further, it does not matter if you can not be ruled out. What matters is IF you require a positive diagnosis. Why? Because if you feel better when you don't eat wheat, then don't eat wheat. It's the age-old adage, "Doctor, it hurts when I do this, what should I do?" Doctor: "Don't do that!"

Your post said, and I quote the original, as it stands when I type this today: "There are DNA tests available that will either rule you out completely, or include you in the possibility that you may have celiac disease."

That statement is not true.

Your post said, and again, I quote the original, as it stands when I type this reply: "The DNA test can tell you IF you are predisposed to celiac disease, and it is 100% specific. (not sure where you get your 5% numbers....)"

This statement is misleading at best.

In the US, particularly, they test for two gene alleles that are known to indicate it is possible for a person to develop Celiac disease. There are other alleles, not tested for (particularly in the US), which also can make it possible for a person to have Celiac disease. But as those other alleles are not tested for, a "negative" on a US genetic test doesn't actually tell you the whole story, and you might still have a genetic predisposition for Celiac disease. So, yes, testing for those two genes to determine predisposition is 100% specific, but all that means is that those genes are known to cause only Celiac disease; it only means those genes don't predispose to celiac AND another disease, such that further testing needs to be done. It does not mean that you've been tested for ALL genetic contributors to Celiac disease. (And there is some doubt to say that they only predispose you to Celiac disease, given recent research on the genetic connections between Celiac disease and type 1 diabetes.)

An analogy would be to say that you want to be tested for nutritional deficiencies. So your doctor runs a free iron and b-12 test. Those come back negative, and the doctor concludes that you aren't deficient in any nutrients. The conclusion is invalid because there are many other nutrient deficiencies that have not been tested for that you might still have (but you don't know).

I quite agree with you that if it bothers you to eat wheat, you shouldn't. Regardless of any "formal", "objective" testing. I am even of the belief that genetic tests are more trouble than help, specifically because it is impossible to rule out Celiac disease based on it, but doctors - and subsequently their patients - believe that it is. Doctors carry the line "oh, if you test negative on the genetic panel, then you can't have Celiac disease". Then the patients say "oh, well, I'll keep looking for something else; it can't possibly be gluten", when, in fact, the test could never say any such thing.

[nora-n]

I tested negative, and have DH too, and gluten ataxia. Either the test was mixed up or did not detect DQ8 (which is abundant here in scandinavia but not so easy to detect) or I have the 0501 alpha chain. Also , my daughter is a diagnosed celiac so I am sure we both are celiacs but the test was not positive.

I probably should go to a different doctor and ask for a new test, especially as I see that nowadays most people get both the alpha and beta chains done, the labs probably realized they missed some celiacs.

Others here were mistyped too.

Those tests do not look too accurate....judging by postings here.

and, DQ types only account for 40% of the risk for celiac anyway.

They have identified that myo9b gene thing, and another gene thing in addition to DQ.

Maybe some of those that had a negative gene test some years ago, maybe they get other results now? There is after all better testing now.

Now I also have tree pollen allergies and thyroid disease, and neither tests picked up those things either, so I know one must never trust tests blindly.

And not gene tests either.