Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

[Treen]

Hello. My younger sister was just diagnosed with Celiac disease. My older sister is type 1 diabetic. I suspect my mother had Celiac. I have suffered with gastrointestinal problems my entire life. I want to get tested, but I’m self employed and I purchase my insurance through the ACA marketplace. Thanks to the Big Beautiful (Terrible) Bill, the enhanced subsidies are set to expire at the end of 2025. The Republican legislature did not renew the enhanced subsidies. I will lose my health insurance at the end of 2025. I’m concerned that if I test positive for Celiac, I will not be able to find insurance coverage due to this pre-existing condition. So, I’m hoping to purchase my own test through WalkInLab (they offer the complete screen for $159). This way I’ll at least know if I have the disease. I won’t tell my doctor since there’s nothing he can do to help me anyway. Then I’ll cut gluten from my diet entirely, which will be easy. I hardly eat at all anymore. I just hope my insurance can’t somehow find out about the results of this screen, if it comes back positive. I’d be paying in full with a credit card. 
 

Do any of you have any thoughts or advice?  Thanks for reading either way. 

[trents]

Two thoughts:

1. What if the testing turns out negative? That won't rule out the development of active celiac disease later in life. You may have NCGS now which will transition in to celiac later on.

2. Your plan implies dishonesty in hiding it from your doctor and your insurance company.

[Treen]

I’m just worried about pre-existing conditions and my imminent loss of insurance. I’m self-employed. Finding insurance outside the ACA marketplace in Alabama is almost impossible even when you’re healthy. I still have 5 years before I’m eligible for Medicare. There is no treatment for Celiac except gluten avoidance. If Celiac disease becomes part of my medical history — even though the ‘treatment’ (gluten avoidance) is ‘free’ (only I can treat myself and it costs my insurance nothing), I might find myself uninsured if something like cancer arises in the next 5 years. 

[Scott Adams]

I personally don't believe you have an obligation to disclose such a diagnosis with your doctor or insurance company, especially if a health insurance company can use this information against you for the rest of your life--and yes, it does look like we may be headed back a time a place where pre-existing conditions could affect the cost and ability to get health insurance--but that remains to be seen. If we were talking about a congenital heart condition I might offer different advice, but for celiac disease where the only treatment is a gluten-free diet and there is no subsidy for gluten-free food costs in the USA, it seems reasonable for you to go with more privacy regarding your test--just confirm with the company that your results will ALWAYS be private (i.e. see 23andMe news--their data has or will be auctioned off in bankruptcy proceedings). 

[plumbago]

Treen, I'm not sure I totally understand, but if I were you, while you still can, get your doctor to run the celiac blood test panel (the complete one) now, and if any of those tests turn out to be positive, get him or her to order you an endoscopy with biopsy. Do this while you still have insurance that will cover the cost! If it turns out to be positive, it seems your worry is that you would not then be able to get health insurance after 2025 because celiac, you say, is a pre-existing condition? Being in the state (I am from there, btw), you no doubt have observed the rate of metabolic disease in the population, conditions that are far more emblazoned in neon lights that say "pre-existing!" than Celiac, I would think. Meaning, it's quite likely that a near-majority would have pre-existing conditions. You might not even be denied. If I were you I'd reach out to either UAB (below) or the Alabama celiac facebook group with your concerns, and even research the topic - was Celiac considered a pre-existing condition before ACA? I think it was, but at any rate, maybe get the local perspective. The alternative I suppose is to wait to get tested, as you indeed say, until after you have new insurance. Not a bad strategy (I don't think it's really dishonest, but that's just me), but personally I like to have it all on the record so we're all on the same page. At any rate, if your fears bear out, a whole LOT of us are in a bunch of trouble, no?? 

UAB Digestive Health Center

https://www.uabmedicine.org/medical-professionals/clinical-services/digestive-health-center/celiac-disease/

[Scott Adams]

Celiac disease was considered a pre-existing condition that affected costs before the ACA, and I was paying life insurance premiums at age 45 that a 70 year old would have to pay because of it (this was back when it was my only diagnosis--not that case now). 

I don't disagree with @plumbago's approach here either, but just keep in mind, it will be on your PERMANENT RECORD!😉

On top of this, a majority of job applications that I've see in the past couple or years include "celiac disease" as a pre-existing condition that the employer requires you to disclose--do you have the same shot at the job if you say yes?:

 

[Treen]

Wow. Okay. I’m definitely going with private testing. And since my sister was diagnosed just last month, I’ll have her as a great resource. I’m otherwise in excellent health for a 60 year old woman. No diabetes, normal blood pressure and cholesterol levels. I work out regularly, although I’m too thin because I’m afraid of food. I appreciate both of your helpful, informative insights - Scott Adams and @plumbago.  I’ll let you know the results of my panel (giving blood sample on Wednesday) here on this thread. 

[RMJ]

I think keeping the information to yourself is a good idea. In fact, many doctors won’t give an official diagnosis without a biopsy so if someone asks if you have celiac disease and all you have are blood test results a “no” answer wouldn’t be totally wrong🙂. Until I had a biopsy my medical chart just said positive celiac antibodies, not celiac disease.

If the WalkinLab $159 panel is negative you could still have celiac disease however.  It is a good start, testing for TTG IgA antibodies which most people with celiac disease have.  However, some people have IgG antibodies instead, and some only have antibodies against DGP (deamidated gliadin peptide). WalkinLab can also do those tests but the comprehensive panel is more expensive.

WalkinLab celiac disease profile

[Treen]

I’m thinking if the $159 package comes back negative, I’ll wait a month — continue eating gluten 😖— and then purchase the $340 complete and comprehensive package. 
 

Thanks again to everyone who has responded. I feel more hopeful than I have in a long time. 

[trents]

Keep in mind that a celiac diagnosis normally involves two steps: 1. blood antibody testing and 2. if there are positive antibody test scores, an endoscopy with biopsy of the small bowel lining. You have only mentioned the first in your strategizing.

[Treen]

I only intend to do the blood screen. I also fully intend to remove gluten from my diet whether the test is positive or negative.  I’d just like to know, even if it’s inconclusive, if Celiac might be the cause my life-long gastrointestinal distress. If the test is positive, I’ll assume that I probably have Celiac, like my sister. If it’s negative, I’ll assume that I may have a gluten intolerance/allergy — or not.  My quest will end there. My belly problems don’t render my life insufferable. My sister’s diagnosis (positive blood and biopsy) just made me curious whether I have Celiac, too. Either way, I’m done with gluten as soon as I give the blood sample on Wednesday 👍🏼

[Wheatwacked]

Just switching to gluten free diet will answer your question without involving anyone else.  Your sister was diagnosed, that puts you at 40% risk of having it also as a first degree relative.  If you improve on a trial gluten free diet, you either have Celiac Disease (autoimmune) or Non Celiac Gluten Sensitivity (not autoimmune).  In any case it is important to address nutritional deficiencies like vitamin D.  Gluten free processed foods are not required to fortify.  The reason gluten foods are fortified is our western diet is deficient in them to the point where the government had to step in and require fortification.  

On 8/25/2025 at 1:34 PM, Treen said:

I’m too thin because I’m afraid of food.

Once you start GFD you'll realize it was the gluten you were afraid of all along, but nobody told you.

[Joel K]

It is illogical not to disclose a positive celiac disease finding to your doctor, particularly if you're 60 years old. Human beings generally begin failing in one form or another from 60 onward and you might find yourself as an in-patient in a hospital or at an emergency room. Drugs often have minute amounts of gluten and hospital and nursing home food certainly contains gluten.  Here's another scenario: Your doctor sends you for annual labs and your WBC count and others come back out of range.  I frankly think one should leave politics out of the equation when it comes to your health. (Insurance isn't about your health, by the way) Or go ahead and don't let your doctor know.  Only one person will have to deal with the results of that decision.

[plumbago]

@Joel K If the OP is ever in the hospital, and her celiac disease tests did come back positive and she does have celiac disease, she can just tell the doctors that she needs a gluten-free diet because she has celiac disease. They will listen to her, in all probability. And honestly, celiac disease is not taken very seriously inside hospitals, to say nothing of emergency departments, where in any case, the pt may not be able to verbalize anything, and the staff have to act right then.

[Scott Adams]

3 hours ago, Joel K said:

It is illogical not to disclose a positive celiac disease finding to your doctor, particularly if you're 60 years old. Human beings generally begin failing in one form or another from 60 onward and you might find yourself as an in-patient in a hospital or at an emergency room. Drugs often have minute amounts of gluten and hospital and nursing home food certainly contains gluten.  Here's another scenario: Your doctor sends you for annual labs and your WBC count and others come back out of range.  I frankly think one should leave politics out of the equation when it comes to your health. (Insurance isn't about your health, by the way) Or go ahead and don't let your doctor know.  Only one person will have to deal with the results of that decision.

You don't need an official diagnosis to request a gluten-free diet in either a hospital or nursing home--this can be requested by anyone. The higher costs associated with existing conditions for life insurance is a reality, and regardless of your politics, it could become a reality again for health insurance in the USA. For many this could make health insurance unaffordable, thus, everyone who is undiagnosed should understand such potential consequences before they go the official diagnostic route. As mentioned, once it's on your medical record, it won't go away.

[trents]

A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?

[plumbago]

Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.

[Oldturdle]

It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.

     Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!

[Joel K]

On 9/4/2025 at 10:02 AM, plumbago said:

@Joel K If the OP is ever in the hospital, and her celiac disease tests did come back positive and she does have celiac disease, she can just tell the doctors that she needs a gluten-free diet because she has celiac disease. They will listen to her, in all probability. And honestly, celiac disease is not taken very seriously inside hospitals, to say nothing of emergency departments, where in any case, the pt may not be able to verbalize anything, and the staff have to act right then.

Yes. And then it will become part of her medical record, which was my point.

[Joel K]

On 9/4/2025 at 12:58 PM, Scott Adams said:

You don't need an official diagnosis to request a gluten-free diet in either a hospital or nursing home--this can be requested by anyone. The higher costs associated with existing conditions for life insurance is a reality, and regardless of your politics, it could become a reality again for health insurance in the USA. For many this could make health insurance unaffordable, thus, everyone who is undiagnosed should understand such potential consequences before they go the official diagnostic route. As mentioned, once it's on your medical record, it won't go away.

Since medical insurance is not affected directly by celiac disease on an ongoing basis (i.e. medication, medical devices, daily monitoring, home care nursing, etc), I rather doubt anyone would be denied a policy for having it as a pre-existing condition. I’ve certainly never been and I have two pre-existing conditions that are managed with diet alone and both are long-well-known by my doctors and via medical testing and procedures. Insurance is all about risk management, not health. 

[Scott Adams]

Since those with celiac disease have a much higher chance of having or getting additional autoimmune diseases it could definitely affect your health insurance rates.

Prior to the Affordable Care Act (ACA), individuals with celiac disease could indeed be charged significantly higher premiums for private health insurance or even be denied coverage altogether, as it was a pre-existing condition that insurers could medically underwrite. The ACA's protections, which prohibit denying coverage or charging higher premiums based on health status, eliminated this practice, ensuring people with celiac disease could not be penalized financially for their diagnosis. However, this protection is not inherently permanent and is tied directly to the ACA's continued existence and enforcement; should the law be substantially weakened or repealed in the future, it is possible that a return to medical underwriting could once again allow insurers to charge individuals with pre-existing conditions like celiac disease higher premiums for their health coverage.