Have I been eating enough gluten for blood tests?

[Tanechka]

Hi!

I was hoping someone could help me with a question about my upcoming blood tests my doctor ordered. I got my endoscopy results a couple months ago - they weren't conclusive - but I've had Celiac on the brain and my doctor agreed I'm a candidate and we should try to rule it out. He then went out of town of course and it took a while to get around to ordering the blood tests.

Meanwhile, I started taking an interest in the gluten-free lifestyle. I'd read early on that you can't cut it out of your diet before you get blood tested, if you want accurate results. But there were still all these gluten-free specialty foods I'd always seen but never tried at the market, and all these creative ideas for working gluten out of your favorite meals, and I decided I wanted to try a lot of this stuff. I knew it wouldn't make me feel better, not short-term at least, and was really just doing it out of natural curiosity. 

But I never eliminated gluten fully from my diet. I've just been admittedly eating much less on most days. To be fair, some days I still eat a very hardy amount of the stuff. I wanted to make sure I could take a proper blood test when ready, so I would just go at most 2-3 days at most without any, then I'd gorge a pizza or a bowl of mini-wheats or something, have a couple beers, etc. Maybe even more like 1 day on, 1 day off. Hard to say as I wasn't taking notes.

Anyway, onto today, when I'm reading up on how people who have been gluten-free need to 'challenge' themselves prior to testing - a process most sources I've found claim you should eat gluten 'daily' for something like 2-3 months. And I'm making myself nervous that my recent 2 months of 'reduced' gluten might end up giving me a false negative on my test. 

So I'm wondering if anyone can tell me how much I can rely on a blood test in my current situation. Is the 'challenge' only necessary if you've been legitimately living gluten-free for a while? It seems like it would be a little silly that the test is only accurate if you've been eating gluten every day for a quarter year, but my insurance situation lately is tenuous and I don't want to mess this up in case I can't get tested again. Does it sound like I'm running a risk getting tested this week? Would a short course of heavy gluten intake mitigate that risk any? Or am I worrying about nothing?

Sorry about the long-winded question. I hope it made sense!

Any advice is greatly appreciated with many thanks,

T

[Scott Adams]

Hi @Tanechka, welcome to the forum!

The way you've described things, where you've likely not gone more than a few days without eating significant amounts of gluten, it's unlikely that if you did have celiac disease your blood antibody levels would drop significantly, but they may be lower than they would be if you had been eating it daily for ~12 weeks, which is the recommendation:

At this point you have two choices:

1) Get the test this week, however, if your results are higher than normal, but under the celiac disease cut off range, you may need to still consider yourself gluten sensitive, and possibly a celiac;

2) Delay the test for a few weeks and eat wheat daily until you take the test to be 100% sure. 

[Tanechka]

Thank you @Scott Adams!

I've found the forum here pretty handy but was a little stumped on this, but your answer makes perfect sense. Given the risk of the test not being fully accurate, it would make sense for me to wait a bit if I can. I'd be worried about complications requesting to get re-tested down the line if I needed that.

I had a plan to purchase a test from Quest which was fairly cheap if I needed to myself, but I'd read their record of accuracy is pretty terrible, so I want to make this one count while I have my doctor's and insurance's attention.

Now I'm just going to try to verify that my blood tests can be postponed a few weeks and try to power through a little more. I've been in serious pain for over a decade and potentially poisoning myself for a few extra potential weeks is really nothing by comparison, if I can get some confirmation out of it )

Thank you for the warm welcome and the helpful info!
Best

 

[trents]

Pretesting gluten consumption to ensure validation of serum antibody testing would be daily consumption of a significant amount of gluten (a slice of bread or several wheat crackers worth) daily for at least 6 weeks and for the scoping/biopsy for at least 2 weeks. I believe this is the standard recommendation. But like Scott, I feel your gluten consumption patterns may still allow for posititives.

[Tanechka]

32 minutes ago, trents said:

Pretesting gluten consumption to ensure validation of serum antibody testing would be daily consumption of a significant amount of gluten (a slice of bread or several wheat crackers worth) daily for at least 6 weeks and for the scoping/biopsy for at least 2 weeks. I believe this is the standard recommendation. But like Scott, I feel your gluten consumption patterns may still allow for posititives.

Yeah I'm just really thinking hard about the time frame now, hoping I can speed that process along somehow. I'd hate to screw the pooch. Very much wished I'd researched this part better a couple months back, I would have been good to go! 😛

[trents]

Don't be too hard on yourself. Most general practitioners are not very knowledgeable about celiac disease and even some GI docs don't know to or fail to tell their patients they need to keep eating gluten before testing. It should come from them as a responsibility, not the patient.

[Tanechka]

54 minutes ago, trents said:

Don't be too hard on yourself. Most general practitioners are not very knowledgeable about celiac disease and even some GI docs don't know to or fail to tell their patients they need to keep eating gluten before testing. It should come from them as a responsibility, not the patient.

Thanks, that's actually good to hear. It sounds counter-intuitive but sometimes it can feel more and more like you're doing something wrong the more you go to doctors asking for help but don't get anywhere. 

I think the internal logic I was using was that, since it takes so many months on average for one to find relief of symptoms once going gluten-free, that you would have detectable levels of antibodies in your system for a similarly long amount of time.  

[trents]

 

1 hour ago, Tanechka said:

Thanks, that's actually good to hear. It sounds counter-intuitive but sometimes it can feel more and more like you're doing something wrong the more you go to doctors asking for help but don't get anywhere. 

I think the internal logic I was using was that, since it takes so many months on average for one to find relief of symptoms once going gluten-free, that you would have detectable levels of antibodies in your system for a similarly long amount of time.  

I understand your reasoning and it sounds reasonable to me but apparently it doesn't work that way. Those of us who have been diagnosed for sometime and living with celiac disease have come to realize that you have to be armed with information when you visit the doc about celiac disease or potential celiac disease because they generally just don't know that much. So you have to be your own advocate and appropriately assertive. I promise you, this forum community knows more about celiac disease than 95% of the medical community. I hope that doesn't sound arrogant. But when you're dealing with a disease that affects you or you loved ones you must become an expert. And with so much information available on the Internet it is certainly possible to do so. If doctors can learn about disease and the body, so can any reasonably intelligent and diligent person.

Edited January 28, 2021 by trents

[Tanechka]

42 minutes ago, trents said:

 

I understand your reasoning and it sounds reasonable to me but apparently it doesn't work that way. Those of us who have been diagnosed for sometime and living with celiac disease have come to realize that you have to be armed with information when you visit the doc about celiac disease or potential celiac disease because they generally just don't know that much. So you have to be your own advocate and appropriately assertive. I promise you, this forum community knows more about celiac disease than 95% of the medical community. I hope that doesn't sound arrogant. But when you're dealing with a disease that affects you or you loved ones you must become an expert. And with so much information available on the Internet it is certainly possible to do so. If doctors can learn about disease and the body, so can any reasonably intelligent and diligent person.

Doesn't sound implausible or arrogant at all. I'm almost 10 years in to an endless series of doctors (of varying specialties and levels of competence) leading me around in circles, unwilling to admit they don't know everything...and somehow letting me know there's no way to know what's wrong me, at the same time. Sadly it took me almost all this time to learn how to start asserting myself with these folks and trying to take matters into my own hands. 

As for the online community, glad I found this forum and managed to connect to some people elsewhere to get a good perspective on things. Honestly I've gotten a ton of mixed answers today. Some are insistent that I need to do the whole challenge period at this point, some saying I should be able to be tested right now, and the more nuanced folks such as yourself and Scott. Honestly I don't think I can wait a full 2-3 months and I'm really intuiting that that probably isn't necessary for my scenario. I'm going to try what I can. I wish I had all year to do this exactly 100% to the letter, I get the inherent risk, but I'm getting a little pressed for time for a variety of reasons. 

[trents]

Life is like that, isn't it? Seldom falls neatly into place but you make the best decision you can with the most information you can find and then go from there. We have many people in a similar situation as you. Some of them live in areas of the world where the healthcare system is very inflexible and unresponsive. They have to schedule things like endoscopies/biopsies many months out and their probably gluten-related medical issues are so severe they feel they cannot possibly continue to consume gluten that long. Yet, they realize that without solid test evidence they will no longer be taken seriously by the medical community and will not get further testing. Some of them are also embedded in cultures where food is a big part of family bonding and are needing the the test confirmation to have any hope of receiving cooperation from family members in eating gluten-free. And some people, for the sake of their health, just cannot wait for the testing while continuing to consume gluten so they just go without any testing confirmation and trial the gluten-free diet to see if their health improves. Really, that is the proof in the pudding. But the downside of that approach may be the inability to distinguish whether they have celiac disease, are gluten sensitive or gluten intolerant.  And even that may or may not be critical. Positive celiac tests may also help a person develop the resolve to stick with the gluten-free diet rather than wondering, testing the waters and cheating sometimes, if you know what I mean. In the end, you gotta do what makes the most sense for you in your unique set of circumstances.

[charks]

 

I was never formally diagnosed because of covid 19 but I would never dare eat gluten again. I am too worried that I might develop some other type of peripheral neuropathy damage that is permanent. It just isn’t worth it.

I had both physical and neurological symptoms. At times I got so bloated I couldn’t bend over without feeling that I was going to pass out. I such bad cognitive problems that I couldn’t eat speak properly – I just couldn’t think of the right words to say. My walking was so erratic I was always bumping into things and hurting myself.

Lucky most of my problems were solved when I gave up gluten. But I still have balance problems. I still can’t walk downstairs without holding onto something and I have to go one step at a time. At least I can now walk in a straight line. I still have problems with fine motor control – I’m very clumsy and drop things all the time. And when I’m anxious my speech impediment returns. But I think I am very lucky to get away with such minor damage. 

As far as I am concerned gluten is poison. If you were recovering from an accidental poisoning what would you say to your doctor if he asked you to take some more of that poison just to confirm the effect? 

[charks]

It would be different if they could cure it!!!!!!!!

[Tanechka]

14 hours ago, trents said:

Some of them live in areas of the world where the healthcare system is very inflexible and unresponsive. They have to schedule things like endoscopies/biopsies many months out and their probably gluten-related medical issues are so severe they feel they cannot possibly continue to consume gluten that long. Yet, they realize that without solid test evidence they will no longer be taken seriously by the medical community and will not get further testing.

That's very true, I can only imagine how tough this is on other people in less opportune situations. Especially amid the pandemic, jeez! All things considered, I've had some good fortune in my situation. Part of my problem has been that I've been on more insurance plans than I can count over the last decade, and had to switch around doctors all the time. While a lot of them were plainly stumped and/or didn't take me seriously, my focus was more on just finding a doctor rather than finding the right one. I would try my best to explain the issues I was having and you could tell they were either totally taking a shot in the dark at what was wrong, or they'd get passive and pass me off to either a pain management specialist, a physical therapist, or literally just a therapist or psychiatrist. Of course I've been on Medicaid since the pandemic put me out of work and it's one of the better managed plans I've been on. More importantly, I feel like my GP, my Rhuematologist and my Gastroenterologist all don't think I'm full of it, which makes me a little more comfortable getting pushy when I need to. Still, I'd like to get to the bottom of this while I still have this coverage.

14 hours ago, trents said:

And some people, for the sake of their health, just cannot wait for the testing while continuing to consume gluten so they just go without any testing confirmation and trial the gluten-free diet to see if their health improves. Really, that is the proof in the pudding. But the downside of that approach may be the inability to distinguish whether they have celiac disease, are gluten sensitive or gluten intolerant.  And even that may or may not be critical. Positive celiac tests may also help a person develop the resolve to stick with the gluten-free diet rather than wondering, testing the waters and cheating sometimes, if you know what I mean. In the end, you gotta do what makes the most sense for you in your unique set of circumstances.

Again, I'm going to oddly count my blessings that, for the purposes of 'challenging,' I've been eating gluten on the regular my whole life. Now I have horrible widespread pain issues (let's just call it fibromyalgia for shorthand) and I've been downright bedridden lately, but at the same time I don't have any actual evidence that gluten is the culprit. It's just a sensible hunch at this point. As much as I hate that pain has been my life 24/7 for so many years, I've begrudgingly gotten used to it. And if I'd been living gluten-free beforehand and felt better, than glutening myself now might be a hard pill to swallow. But my mind is still telling me I'm going to be stuck feeling like this forever. That sucks, but it's a good motivation just keep eating gluten and get the test as right as I can. I could certainly use that resolve to do the diet right as you mentioned. 

For all my cautious talk, I think I'm probably going to take Scott's suggestion and give it 3-4 weeks and just make sure I get large quantities of it, power through, and think happy thoughts when I go to get tested

 

[Tanechka]

2 hours ago, charks said:

 

I was never formally diagnosed because of covid 19 but I would never dare eat gluten again. I am too worried that I might develop some other type of peripheral neuropathy damage that is permanent. It just isn’t worth it.

I had both physical and neurological symptoms. At times I got so bloated I couldn’t bend over without feeling that I was going to pass out. I such bad cognitive problems that I couldn’t eat speak properly – I just couldn’t think of the right words to say. My walking was so erratic I was always bumping into things and hurting myself.

Lucky most of my problems were solved when I gave up gluten. But I still have balance problems. I still can’t walk downstairs without holding onto something and I have to go one step at a time. At least I can now walk in a straight line. I still have problems with fine motor control – I’m very clumsy and drop things all the time. And when I’m anxious my speech impediment returns. But I think I am very lucky to get away with such minor damage. 

As far as I am concerned gluten is poison. If you were recovering from an accidental poisoning what would you say to your doctor if he asked you to take some more of that poison just to confirm the effect? 

That sounds awful and I don't blame you for viewing it the way you do. I worry myself about what issues I'd carry with me the rest of my life even if I were to get a diagnosis and go gluten-free. But bottom line, sounds like it cleared up pretty significantly for you once you gave up gluten, that's great!  

All I can really ask for at this point is a quality-of-life adjustment..

To your poison hypothetical - to paraphrase what I said to Trents - my plan right now is to lean into my ignorance about whether or not I think it's a poison (to me) and continue to consume said poison as I've been doing most my life until I think I'm test-ready. I need to know. For so many reasons. But if I were having some of the issues you were experiencing, I'd likely be too anxious to wait things out, too.

Sucks there's no clear broad answers on so many of these things! And yes, totally sucks it can't be cured...

 

[ravenwoodglass]

3 hours ago, charks said:

 

I was never formally diagnosed because of covid 19 but I would never dare eat gluten again. I am too worried that I might develop some other type of peripheral neuropathy damage that is permanent. It just isn’t worth it.

I had both physical and neurological symptoms. At times I got so bloated I couldn’t bend over without feeling that I was going to pass out. I such bad cognitive problems that I couldn’t eat speak properly – I just couldn’t think of the right words to say. My walking was so erratic I was always bumping into things and hurting myself.

Lucky most of my problems were solved when I gave up gluten. But I still have balance problems. I still can’t walk downstairs without holding onto something and I have to go one step at a time. At least I can now walk in a straight line. I still have problems with fine motor control – I’m very clumsy and drop things all the time. And when I’m anxious my speech impediment returns. But I think I am very lucky to get away with such minor damage. 

As far as I am concerned gluten is poison. If you were recovering from an accidental poisoning what would you say to your doctor if he asked you to take some more of that poison just to confirm the effect? 

If you can you could try to find a good physical therapist who can help with the balance issues. Mine had this weird machine that seemed like surfing. When I could 'ride' it without hanging on for a few minutes we were able to stop sessions. I still have to do the one step at a time down but go up okay and, like you, I no longer walk like I drink all the time (Yay no more canes!). I found not changing my focus fast helped a bit but don't know if that would help you.  Interestingly my aphasia was the opposite of yours. I knew what I wanted to say but couldn't form the words.

I hope you continue to heal well. It sounds like your on the right track.

[ravenwoodglass]

16 minutes ago, Tanechka said:

.

 

Sucks there's no clear broad answers on so many of these things! And yes, totally sucks it can't be cured...

 

I agree but we can live well, healthy and long with it once we know that our bodies treat gluten as poison. You can't say that with so many other diseases.

[charks]

15 hours ago, ravenwoodglass said:

If you can you could try to find a good physical therapist who can help with the balance issues. Mine had this weird machine that seemed like surfing. When I could 'ride' it without hanging on for a few minutes we were able to stop sessions. I still have to do the one step at a time down but go up okay and, like you, I no longer walk like I drink all the time (Yay no more canes!). I found not changing my focus fast helped a bit but don't know if that would help you.  Interestingly my aphasia was the opposite of yours. I knew what I wanted to say but couldn't form the words.

I hope you continue to heal well. It sounds like your on the right track.

My aphasia actually is the same as yours. I also knew what I wanted to say but couldn't form the words. I also couldn't read out aloud - I kept stumbling over words. And this happens even now when I get anxious/stressed. Normally I am very erudite but when I get an attack I can't even spell correctly. Or use my PC. If,  during a conversation, someone says something that makes me feel anxious or upset I start stammering and can't discuss it. Once I was at the doctors and the receptionist was being very rude. I just couldn't tell how rude she was being. My partner said it was really funny. I was literally bouncing up and down with rage because I couldn't get the words out.   

I can handle the walking down stairs one step at a time but my speech impediment is so annoying. Will it ever get better. I haven't eaten gluten since May 2020. 

[ravenwoodglass]

59 minutes ago, charks said:

My aphasia actually is the same as yours. I also knew what I wanted to say but couldn't form the words. I also couldn't read out aloud - I kept stumbling over words. And this happens even now when I get anxious/stressed. Normally I am very erudite but when I get an attack I can't even spell correctly. Or use my PC. If,  during a conversation, someone says something that makes me feel anxious or upset I start stammering and can't discuss it. Once I was at the doctors and the receptionist was being very rude. I just couldn't tell how rude she was being. My partner said it was really funny. I was literally bouncing up and down with rage because I couldn't get the words out.   

I can handle the walking down stairs one step at a time but my speech impediment is so annoying. Will it ever get better. I haven't eaten gluten since May 2020. 

Boy we sure are a lot alike. It may get better for you in time and I will keep my fingers crossed for you. I still have trouble with typing. It takes me forever since my brain has a lag time on my left side. Leads to lots of reversed letters so posts take awhile due to lots of proof reading. My speech improved a great deal but, like with you, if I am anxious it can lead to problems talking. I've had a great deal of life experiences that contribute to that though so your issues may get better in time.

[charks]

I always create my posts in word so I can run a spell check then I copy and paste.