Doctors INSIST that gluten consumption isn't necessary for blood test

[moleface]

So, I had a highly positive Celiac blood test in 2013 while hospitalized with a collapsed lung caused by necrotizing bacterial pneumonia, which is a known severe complication of uncontrolled celiac. I also experienced extreme tooth enamel erosion, recurring iritis that's caused permanent eye scarring, anemia, swollen joints that doctors originally suspected was rheumatoid arthritis, and I get a rash all over my chest whenever I eat a substantial amount of gluten.

Thing is though, all subsequent doctors I've seen in the last decade always give me a new Celiac blood test to "confirm" the original, and when I inform them that weeks of gluten consumption is necessary to avoid false negatives, they vehemently insist that there's no such requirement. Even a gastro doctor told me the same thing. When I tell them that literally all the available medical literature says otherwise, they get cold and hostile because I'm trusting "something off the internet" over them.

 

I mean, you'd think that it wouldn't really matter what specifically is causing these symptoms, since I have a long documented history for being treated yearly for iritis by an ophthalmologist, a gastro doctor found extensive ulceration and stuff in my intestines, etc - but as soon as I mention celiac, doctors give me a strange look and then change their whole demeanor and start talking to me like I'm a "crazy person."

Because of the literally 10+ doctors I've seen who have insisted that gluten consumption isn't necessary to test positive, the original positive blood test has been overshadowed by repeated negative blood tests, and new doctors tell me that "no further testing is necessary" because I've repeatedly tested negative.

Is there any way around this gaslighting? I've literally brought printouts of peer reviewed medical journal studies that prove what I'm saying about Celiac testing, but doctors always just glance at the paper for a moment without comment and then change the subject. These doctors also deny that I've ever had iritis, since it's apparently rare, but I have an extensive documented history of being diagnosed with it and treated for it by an ophthalmologist.

 

I feel like I'm in the Twilight Zone at this point. I ask doctors to check my medical records for the iritis diagnoses, and they return to the room claiming that I have no history of it - but then I look up my medical records after the appointment and find the diagnosis in two seconds. The clinic where I receive healthcare is part of the same medical system as my ophthalmologist, so I'd think they'd be able to access those same records, so it's baffling to me. It almost seems like doctors outright reject any evidence that would contradict their assumption that I'm a hypochondriac fad dieter.

[Scott Adams]

My first question to you is, why do you need an official diagnosis? You've already noted that you can't eat gluten without lots of bad symptoms, and that those symptoms go away when you avoid gluten. There is a condition called non-celiac gluten sensitivity that ~10x more people have than do celiac disease, however, there isn't a test for it yet. Even if you test negative for celiac disease you likely have NCGS, so would need to go gluten-free anyway.

The article below summarizes the protocol from the Mayo Clinic, so yes, you are right and unfortunately your doctors are wrong with regard to the need to eat 2 slices or more of wheat bread daily for 6-8 week before a blood test for celiac disease:

 

[knitty kitty]

@moleface,

Have you been tested for any of the genes that code for Celiac Disease? 

Having a genetic test showing genes for Celiac is something doctors cannot argue with.  Having the genes for Celiac and your symptoms on and off gluten are confirmation you have it.  

That's what I had to do because I had doctors of comparable abilities as your doctors.  

I've had iritis, too.  Herpetic keratosis.  Lysine and Thiamine (Benfotiamine) helped get mine under control.  No more ongoing damage.  

Reading Assignment....

Prevention of Endotoxin-Induced Uveitis in Rats by Benfotiamine, a Lipophilic Analogue of Vitamin B1

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2685466/

 

[MissMollyMarie]

When I had my blood test, I had been off of gluten (for the most part) for a month (for diet purposes - not symptoms).  My test came back quite high. For me, it didn't seem to matter - but I'm not an expert.  

[Qrummed]

For the antibody test, I’ve read (somewhere) antibodies persist for a year (and that sounds reasonable to me).  I had a doctor tell me the same thing, that I needed to eat, gluten every day for weeks (what a nightmare)..  I would think any amount of antibodies would indicate an allergic reaction (so we shouldn’t have to eat gluten every day)..  

If the test is anything like the Covid tests, you would need a certain level of antibodies to trigger a positive, I don’t know, but I didn’t think you needed to eat more of it to get more antibodies (if we are having a reaction, I would think that would be antibodies right there).  

Ultimately who are we to second-guess the doctors?  I think the best we can hope for is a Doctor Who would look it up if he/she doesn’t really know (they would be able to find out better than we could, because the Internet is full of contradictory stuff… seriously, pick any topic and you can find a link  that says yes, one that says, no, etc.)..  

[trents]

8 hours ago, Qrummed said:

Ultimately who are we to second-guess the doctors?  I think the best we can hope for is a Doctor Who would look it up if he/she doesn’t really know (they would be able to find out better than we could, because the Internet is full of contradictory stuff… seriously, pick any topic and you can find a link  that says yes, one that says, no, etc.)..  

Welcome to the forum, Qrummed!

We in the celiac community are those who have the most reason to be up on the most current research rather than a doctor who got out of med school 30 years ago and still thinks the incidence of celiac disease is 1 in 5000 people. Why do you think it takes so many years on the average to get diagnosed with celiac disease? Because it just isn't on most GP's radar. And even if you are blessed enough to find a doctor who is willing to research the issue, where do you think he/she would go to do that? The internet, that's where. All medical research finds its way onto the internet quickly and is public knowledge, including medical journals. That's just how information is disseminated now days, not so much in books anymore. Yes, you will often find conflicting information but that's what we are given brains for. Any reasonably intelligent person is capable of sorting through the information and coming to their own conclusions. I certainly trust myself to be able to do that on my own time rather than some doctor whose main concern is seeing how many patients he/she can push through the door and then goes home exhausted, too tired to care about doing any follow-up research. No offense, but I find your reasoning here to be dangerous.

Antibodies may persist for longer than 6-8 weeks to be sure. But the point is, the longer you are off gluten the lower they drop and trend toward the negative range. The two slices of bread recommendation for 6-8 weeks comes from the Mayo Clinic which is an established medical research facility and respected world wide. On top of that, we have a large repository of people of this forum who have had the experience of beginning the gluten free diet before getting tested, got negative antibody scores, who later tested positive after going back on gluten.

The only reasonable alternative to going back on gluten if the severity of reaction is too intense is to trial the gluten free diet and live with the possible/probable ambiguity of not knowing whether the issues is NCGS or celiac disease.

Edited January 28, 2023 by trents

[trents]

7 hours ago, Qrummed said:

For the antibody test, I’ve read (somewhere) antibodies persist for a year (and that sounds reasonable to me). 

Starting the gluten-free diet weeks or months ahead of time might not invalidate antibody testing for someone whose antibody levels are extremely high but for those whose antibody levels would be modestly positive if tested while still consuming gluten, it would likely drop them out of positive range.

And different antibodies vary tremendously in their staying power. Some persist for years, even decades. Others, much shorter persistence.

Edited January 28, 2023 by trents