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Is It Normal For Doctors To Discourage Celiac Testing?

doctors celiac testing

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#1 MIgrainePosterChild

 
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Posted 01 April 2013 - 06:28 PM

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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#2 GottaSki

 
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Posted 01 April 2013 - 06:42 PM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

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#3 Dugudugu

 
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Posted 01 April 2013 - 08:43 PM

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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#4 Cookingpapa

 
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Posted 01 April 2013 - 09:02 PM

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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I'm not gluten intolerant, but my wife is. I joined this blog because I do all the cooking at home and need to be educated so I don't hurt my family.
I'm always looking for recipe ideas and ways to cook and eat healthy. And while I'm not on a tight budget, I have been finding gluten free grocery shopping quite expensive, so all ideas are welcome!

#5 kareng

 
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Posted 01 April 2013 - 09:12 PM

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.curecelia...-celiac-disease


http://www.curecelia...ow-does-it-work

http://www.curecelia...-celiac-disease

http://www.curecelia...ten-sensitivity
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#6 dilettantesteph

 
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Posted 02 April 2013 - 04:48 AM

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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#7 Cookingpapa

 
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Posted 02 April 2013 - 12:42 PM

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.curecelia...-celiac-disease


http://www.curecelia...ow-does-it-work

http://www.curecelia...-celiac-disease

http://www.curecelia...ten-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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I'm not gluten intolerant, but my wife is. I joined this blog because I do all the cooking at home and need to be educated so I don't hurt my family.
I'm always looking for recipe ideas and ways to cook and eat healthy. And while I'm not on a tight budget, I have been finding gluten free grocery shopping quite expensive, so all ideas are welcome!

#8 gatita

 
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Posted 03 April 2013 - 08:55 AM

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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Diagnosed with wheat hates me 4/13


#9 frieze

 
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Posted 03 April 2013 - 09:09 AM

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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#10 learning2cope

 
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Posted 03 April 2013 - 08:08 PM

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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#11 bizzonzzon

 
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Posted 04 April 2013 - 06:53 PM

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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#12 learning2cope

 
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Posted 05 April 2013 - 12:05 PM

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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#13 bartfull

 
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Posted 05 April 2013 - 01:02 PM

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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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#14 learning2cope

 
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Posted 05 April 2013 - 01:08 PM

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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#15 Ollie's Mom

 
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Posted 06 April 2013 - 03:11 AM

Aveeno has gluten in it. Just FYI.

Good luck with the testing!
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