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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 It Normal For Doctors To Discourage Celiac Testing?
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31 posts in this topic

I will start off by saying, I don't have health insurance. I had it in California, but when I moved up to Oregon, I was denied because of my health history (including my migraines). Now I can't even think about paying any kind of monthly premium even if it a health insurance application was accepted, because health issues forced me to quit my job and my husband and I are living off his low income (did I mention that we rent an apartment? so...costs add up!). 

 

We had the financial assistance department of the doctors' network of providers clear all of our past bills, but I still had to have more doctor visits and labwork done recently. 

 

Two different doctors (including my primary care physician) in the office discouraged me from getting officially tested for Celiacs because they claim that it is expensive and it probably wouldn't show up in standard testing if I have it anyway. They suggested that I would just be told to go on a Gluten free diet, which I am already attempting to do. I know they are saying this because I don't have insurance to cover more labwork and testing. I have already had a metabolic and thyroid panel done and as of today, the B12 deficiency testing.

 

So I believe I have a gluten sensitivity or Intolerance and possibly also a lactose intolerance as a result, but I do not know if I have Celiacs. Is it important to be tested for Celiacs if you are already adopting the gluten free diet and is it extremely expensive to test for it if you don't have insurance?

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It is important to be tested before removing gluten - once gluten is removed you are no longer producing the antibodies in reaction to gluten ingestion. Celiac blood tests measure these antibodies - no gluten - no antibodies to measure.

That said - sometimes people will test possitive for a short time after removing gluten - you just need to understand the tests have their best chance for accuracy before gluten is removed.

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If you are that tight on money, I do agree with the doctors. The bloodtest is not 100% accurate and you'll probably go gluten free anyway if the test came back negative, as you could also be non-celiac-gluten-intolerant. My test was negative but also far from complete (which I found out much later), but I started gluten free anyway. Now 5-6 months later I feel like reborn. As you have to eat anyway, I suggest to go gluten free and see how things will go. Good luck!

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My wife discovered she was gluten sensitive two years ago and since then we all switched to cooking completely gluten free. I want to test my kids, but the posts here suggest that they won't be effective tests because we've already eliminated gluten.

 

My son is 4 years old and my daughter 10 months. When is a good time to test them?

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Blood tests are based on antibodies that are made in response to gluten. If you aren't eating gluten, you won't make any antibodies. If you don't make antibodies, your tests will be negative. That is the way Celiac testing works. Sounds like your wife does not have Celiac? There are no tests for non- Celiac gluten sensitivity except to not eat gluten and see if you feel better. ( after Celiac is ruled out ).

http://www.cureceliacdisease.org/archives/faq/at-what-age-should-children-get-tested-for-celiac-disease

http://www.cureceliacdisease.org/archives/faq/ive-heard-that-i-dont-necessarily-have-to-endure-12-weeks-of-eating-gluten-if-i-have-a-severe-reaction-is-that-true-how-does-it-work

http://www.cureceliacdisease.org/archives/faq/at-what-age-should-children-get-tested-for-celiac-disease

http://www.cureceliacdisease.org/archives/faq/can-i-be-screened-for-gluten-sensitivity

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It isn't unusual for doctors to not want to test.  My husband's doctor refused to test him despite our son having it.  He went elsewhere.

 

What can happen if you don't get tested is that sometimes symptoms return.  Then you won't know if it is from gluten in the diet, non responsive celiac disease or an incorrect diagnosis.  

 

It can be very difficult to return to eating gluten if you react to it.  After being off it, the reaction can be much worse and many just can't go back to it long enough for a diagnosis.

 

There are some tests being developed where tissue is removed and treated with gluten so that the subject doesn't have to eat gluten.  At that point, going on the gluten-free diet before diagnosis shouldn't be a problem.

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Blood tests are based on antibodies that are made in response to gluten. If you aren't eating gluten, you won't make any antibodies. If you don't make antibodies, your tests will be negative. That is the way Celiac testing works. Sounds like your wife does not have Celiac? There are no tests for non- Celiac gluten sensitivity except to not eat gluten and see if you feel better. ( after Celiac is ruled out ).

http://www.cureceliacdisease.org/archives/faq/at-what-age-should-children-get-tested-for-celiac-disease

http://www.cureceliacdisease.org/archives/faq/ive-heard-that-i-dont-necessarily-have-to-endure-12-weeks-of-eating-gluten-if-i-have-a-severe-reaction-is-that-true-how-does-it-work

http://www.cureceliacdisease.org/archives/faq/at-what-age-should-children-get-tested-for-celiac-disease

http://www.cureceliacdisease.org/archives/faq/can-i-be-screened-for-gluten-sensitivity

 

Thanks for taking the time to send the links Karen.

 

My wife's doctor says she is gluten intolerant. She gets migraines and a severe upset stomach when she has gluten. The doctor also says that it could develop to celiac disease later on as well, so we're pretty careful.

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There are some tests being developed where tissue is removed and treated with gluten so that the subject doesn't have to eat gluten.  At that point, going on the gluten-free diet before diagnosis shouldn't be a problem.

 

Wow! I'd sure like to know when that test is available!! Do you know where I can find out more about it?

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There have been cases of Ins. refusing dx celiacs coverage.  Go with the flow, and maybe your migraines will at least diminish, as well.

Wow! I'd sure like to know when that test is available!! Do you know where I can find out more about it?

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My doctor poopooed me when I suggested celiac as a possible cause for many of my health problems. I am seeing him on Friday (a surprise appointment LOL) and requesting he test me for the appropriate blood tests. If he poopoos me again I'm going to say "Look buster, I pay the bills here and if I want tested for something it doesn't take much effort for you to write a few numbers down on the lab sheet and have your nurse draw the blood..." But I do have insurance so, that woudln't necessarily be an option for those without insurance unless they were able to pay the balances. Luckily it seems my insurance is quite good when it comes to labwork so I'm not worried about the costs. For me, it's important to know if I possibly do have celiac because it would explain tons of my health problems (including my "psoriasis" which I fully now believe is dermatitis herpetiformis). My family will be going gluten free regardless of my diagnosis to see if OUR health problems improve. But I want to get this bloodwork done regardless, if it is suggestive of celiac I will try to get an intestinal biopsy done to confirm. I want an answer to my health problems darn it! :) Then at least I would be more likely to go 100% gluten free for life without many intentional glutenings.

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I'm very interested in this... My doctor also had me avoid the test, saying their wasn't a genetic history for Celiac for me. Apparently having more proof before hand justifies the expense more to him, but he suggested I try the gluten free diet. Almost a year later, and it's working great for me. However, my symptoms just kicked in from something I ate (I'm not overly careful when I go out to eat) and now I don't know what it is. So-my question for you with the testing experience...

 

How long do you have to regularly consume gluten for, in order to take the tests efficiently? 

I read somewhere that six months, ingesting gluten every day (I believe they said a slice of bread/day), was the best way to get accurate results. Any other thoughts?

 

Nausea/gas/migraines/muscle pain for six months doesn't sound appealing. I'm not even handling the first day of it well.

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Well I just went in to my doctors appointment to get blood work done to test for celiac. my doctor thought i was crazy. He just typed away onto his computer while I tried to explain why I felt that I wanted tested. He said more than once "I wish people could have their internet priveleges revoked..." because I had "researched" my symptoms and came to the conclusion that I quite possibly do have celiac. Ugh he is a jerk. He's always like this with me. Always. I don't go in there with off the wall issues or ideas as to why I am feeling the way I am. He has no reason to belittle me about this. But he did take blood so we'll see if he actually did the right labs. So yes it must be common for doctors to make you feel stupid for wanting to be tested for things that you think are pertinent. I am lucky I am moving out of the state later this year with my family and I can find a new doctor, hopefully one who is willing to work with me without belittling me for my apparently "stupid" and "weird" ideas about my health.

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If you think you have DH, you might want to see a GOOD dermatoligist. From what I have read here, a lot of DH victims don't get the villi damage because the disease manifests in the skin instead. You need to make sure the derm biopsies a spot of CLEAR skin right next to an ACTIVE lesion.

 

So if your blood tests come back negative, go see a dermatologist, and if your biopsy comes back positive, bring the lab reports to your MD, shove them under his/her nose, and say, "I TOLD you so!"

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Yes I **think** I have a good dermatologist - we'll see. I just made an appointment to be seen for it this coming Thursday. And YES IF it does turn out to be DH I will definitely personally bring my GP the test results and shove them under his nose. I'll even pay for an office visit with him just so I can see his face. :) Though I may just wait until my next 3 month check up late June.

 

I tried to make the appointment with my derm for a biopsy but she wouldn't let me because it had been too long since my last visit so it had to be scheduled as a "follow up" and I'd discuss the biopsy with him while I"m there. Grr. Stupidity I say. But whatever. Yes I've read up briefly on the proper procedure for a DH biopsy. I'm trying to avoid using steroid ointments on my severely raw and supremely itchy hands and feet (where i have the rash) only time will tell how long I can hold off. I'll just try to moisturize a billion times per day with Aveeno lotion since that seems to help the itch a lot better than my other lotion I've been using.

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Aveeno has gluten in it. Just FYI.

Good luck with the testing!

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I double checked the ingredients and did not see any gluten containing items. Are you saying you experience issues with Aveeno despite that?

 

Active Ingredients: Dimethicone

Inactive Ingredients: Water, Glycerin, Distearyldimonium Chloride, Petrolatum, Isopropyl Palmitate, Cetearyl Alcohol, Oat Flour (Avena Sativa), Benzyl Alcohol, Sodium Chloride

 

Oat's in and of themselves do not contain gluten.

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Oats are almost always contaminated with gluten (wheat). I get horrible reactions from Aveeno lotions. Of course, I stopped using it when I went gluten-free, but before that, I would get really bad rashes from the stuff.

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I should also add that it won't cause intestinal damage unless it is eaten, but if you use it it ends up all over your hands. I wouldn't put glutinous soy sauce or gravy all over my hands, so I stick to the same rules with cosmetics etc.

If you're pursuing testing, it won't matter, but if you're trying to be strictly gluten-free in the future, I'd ditch it.

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There are also a percentage celiacs who are unable to tolerate oats either

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learning2cope, your doctor is an idiot. True, you might be railroading yourself into thinking you have a diagnosis you don't have, but that's hardly different than him railroading you into a diagnosis you don't have. Main difference in my mind is that you know your own symptoms better than your doctor ever will, while he knows more about the plethora of diseases it could possibly be. Your doctor is basically saying that it's harmful to be more educated. 

 

And for the OP, it's only as important to have a clinical diagnosis as you think it is. If you want to be officially diagnosed for your own peace of mind, or because you worry people won't take your intolerance seriously, or whatever, then you should get fully tested BEFORE you go gluten free. However, celiac disease isn't anything a doctor can treat in any way whatsoever, so it's not like you're losing out on treatment or care if you don't get diagnosed.

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I agree cavernio. I could possibly not have celiac and that would be good except that I'd not have a way to feel better unless somehow going gluten-free did fix my issues. My main issue is my psoriasis (DH?) My first derm had no idea what it was and after repeated steroid ointments or creams and salicylic acid treatments he referred me to another derm. This new derm thinks I have palmoplantar pustular psoriasis. Well everything I read about PPP is that the blisters in the skin produce yellow fluid. Mine is always clear. And with this form of DH (there are many!) my symptoms match 100%, even with the clear fluid. The severe itchiness, too. I hope there is a way to get rid of this rash. I don't want to have to live my life with it. I've had it for 7 years or more now and it consumes my life due to the severity of it. I'm praying to God that it is DH so that I (we as a family) can go gluten-free and heal it up and if I stay gluten free I'd be able to NOT have this horrible rash! I really am hoping and praying it's DH. I need relief from it. Today I woke up and the raw spot on my left hand split open so now I have a split in my skin on my hand from it. It's not too bad or deep but it does hurt worse now than it did last night. Anyway, yeah. If my bloodwork is inconclusive or negative I'm definitely getting that skin biopsy from my derm. I hope to find out the results of the blood work and research it here and post it here for others to see and help me figure it out. I don't trust my doctor to tell me the truth about the results. He didn't tell me I had mild anemia for years and years, he didn't tell me I had diabetes till 2years after my fasting bloodwork every 3 months showed an upward and Pre-diabetes trend (over 100 mg/dl) and he didn't tell me I have issues with my kidneys! I'll get a full work-up from my new doctor when we move and see if they see any issues with my lab work. I'll ask to take my labwork home so I can have a copy. I'm sorry this post is so long, I just feel so desparate and alone and I find the people here wonderful to talk to and they are able to calm me down. and to the OP, I'm sorry I've kind of railroaded your thread. I'll try not to continue with this here.

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Maybe ditch the idea of oatmeal skincare and opt for coconut oil. 

 

I would like to take this moment to rag on doctors...  How come vetranians are such better doctors?  The animal can't speak, so they LISTEN to the human speaking.  (This does not matter if the human looked for information on the internet or not.) :rolleyes:   They do not say the animals symptoms are all in the animals head either.  All information is gathered, and examined, for a diagnostic approach to be determined.

 

By the way, it is a LOT harder to get into the vet program, than med school.  To get into the vet program it is encouraged that the individual start with 4H programs by the age of 7. :huh:

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Hi Learning2cope,

 

Is using oatmeal skincare that important to you?

 

In looking for an allergen free lotion for our baby daughter, we found a brand called California baby. It works great on my wife too :-)

 

There, now you have a skincare recommendation from a guy!

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Cookinpapa, the only reason oatmeal is important to me is because it seems to dramatically reduce my itching from my psoriasis (dh?). It's a horrible deep seated impossible to satisfy itch that I get all the time. The Aveeno killed the itch!! So yeah, I hope to be able to find something that has oatmeal in it that is gluten-free.

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