Weeks prior to celiac testing

[Demi01]

Hello!

I just joined this forum hoping to find some advice, as google isn't being very helpful 😅

I am getting tested for celiac beginning of January, and as my doctor advised I started eating gluten weeks prior to testing so that the result could be accurate.

Before this, I went almost fully gluten free for 3 months, and noticed improvements - less anxiety, less brain fog, no more energy crashes and more motivation to do things throughout the day. Now that I started eating gluten again, I am having a really hard a time keeping up with it. I have no energy, I am sleepy no matter how many hours I get at night, I experience more panic attacks, I have irregular bowel movements, more gas, I am extremely brain fogged and dissociated and I started experiencing debilitating dizziness, vertigo (and nausea) that makes me feel like I am about to lose balance. I also noticed that because of this brain fog, sometimes I mess up words or my speech feels more slurred, and it's more difficult to coordinate. I have a panic disorder and health anxiety so these symptoms definitely scare me more than they should, and I have no idea how to deal with them. Also after being gluten free I noticed that the symptoms I have after eating gluten are stronger than they were before.

I wanted to ask if anyone who has been through it has any advice on how to help these symptoms and how to 'survive' these weeks prior to testing. I am honestly about to give up on testing because it all feels so debilitating right now! Any words of encouragement are appreciated as well.

Thank you 😊

 

[trents]

Welcome to the forum, Demi01!

It is normal to have stronger reactions to gluten after returning, having already begun a period of gluten free eating.

I know of no way to soften the reactions you are having now that you have returned to eating gluten. But perhaps you are consuming more gluten than necessary. The Mayo clinic guidelines call for daily consumption of two pieces of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the serum antibody tests and for two weeks leading up to the endoscopy/biopsy.

But the question needs to be asked, if you are convinced that gluten is causing you medical distress, why do you need to get testing for celiac disease at this point? Are there government gluten free food subsidies if you have an official diagnosis? Without testing, however, you will not be able to distinguish NCGS (Non Celiac Gluten Sensitivity) from celiac disease since many of the same symptoms are common to both.

Edited December 19, 2022 by trents

[Demi01]

27 minutes ago, trents said:

 

I know of no way to soften the reactions you are having now that you have returned to eating gluten. But perhaps you are consuming more gluten than necessary. The Mayo clinic guidelines call for daily consumption of two pieces of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the serum antibody tests and for two weeks leading up to the endoscopy/biopsy.

But the question needs to be asked, if you are convinced that gluten is causing you medical distress, why do you need to get testing for celiac disease at this point? Are there government gluten free food subsidies if you have an official diagnosis? Without testing, however, you will not be able to distinguish NCGS (Non Celiac Gluten Sensitivity) from celiac disease since many of the same symptoms are common to both.

Thank you for your reply! I was not informed that two slices of bread were enough, so I will try that. Perhaps I have been eating more than I should. About the testing, that is a fair question - because I will go gluten free regardless of the results. However I am testing to know if it's an intolerance or celiac. I noticed I feel fine after eating small amounts of gluten, but if I were to test positive for celiac, I would have to go on a stricter diet. That's why!

[Deana-D]

I had to give up on testing because my symptoms were absolutely awful and I was afraid that it was going to cause permanent damage. I had all the symptoms you had but I also had projectile vomiting and DH on top of that. It wasn't worth it to do the testing for me because I don't have to be on disability for any reason. It's really a personal decision I think. If you need the diagnosis for financial reasons, I would do it. If you don't, I wouldn't bother... But that's just me. My health is worth more than my pocketbook... I honestly think that either way you're going to have to go gluten-free. You might as well go all the way gluten-free. It does make your entire system work better in my opinion, from my own experience.

[Scott Adams]

My position on doing a gluten challenge comes down to what exactly is your motivation for doing it?

You already know that you can't have gluten, so why consume it at all? What if the biopsy is normal, will you eat gluten?

I tend to doubt it based on the symptoms you've described, many of which are neurological in nature. For those celiacs who have the neurological manifestations caused by gluten, the damage and symptoms can take much longer to recover--years, rather than (just!) weeks or months in cases where it manifests only with skin or gut symptoms. In my case I had neurological issues even decades later, until I began serious vitamin and mineral supplementation.

 Everyone needs to make a decision about whether the risks of doing a gluten challenge outweigh the rewards, so my question to you would be: what would be the rewards?

[Demi01]

1 hour ago, Deana-D said:

I had to give up on testing because my symptoms were absolutely awful and I was afraid that it was going to cause permanent damage. I had all the symptoms you had but I also had projectile vomiting and DH on top of that. It wasn't worth it to do the testing for me because I don't have to be on disability for any reason. It's really a personal decision I think. If you need the diagnosis for financial reasons, I would do it. If you don't, I wouldn't bother... But that's just me. My health is worth more than my pocketbook... I honestly think that either way you're going to have to go gluten-free. You might as well go all the way gluten-free. It does make your entire system work better in my opinion, from my own experience.

 

1 hour ago, Scott Adams said:

My position on doing a gluten challenge comes down to what exactly is your motivation for doing it?

You already know that you can't have gluten, so why consume it at all? What if the biopsy is normal, will you eat gluten?

I tend to doubt it based on the symptoms you've described, many of which are neurological in nature. For those celiacs who have the neurological manifestations caused by gluten, the damage and symptoms can take much longer to recover--years, rather than (just!) weeks or months in cases where it manifests only with skin or gut symptoms. In my case I had neurological issues even decades later, until I began serious vitamin and mineral supplementation.

 Everyone needs to make a decision about whether the risks of doing a gluten challenge outweigh the rewards, so my question to you would be: what would be the rewards?

Thank you for your reply! I want to get tested for celiac, because from my understanding (and correct me if I am wrong, please), the damage and consequences  - both long & short term - of eating gluten can be more severe for celiacs than for gluten sensitives. If it turned out to be a sensitivity to gluten, I would probably have some gluten every once in a while, as I have noticed it does not give me any problems in small amounts, when I make an exception. However if I tested positive for celiac, I would be more mindful about not eating gluten at all and I would also pay attention to cross contamination. 

Also, thank you - I didn't know that there was such a difference when it comes to recovery between physical and neurological symptoms. Are there any exams I should take into consideration to check if gluten has done any damage? Or will be going on a gluten-free diet be enough?

[trents]

Demi01, I would not assume that consuming small amounts of gluten is safer if you have NCGS instead of celiac disease. It depends on a lot of things. Just because a small amount doesn't seem to bring on noticeable symptoms is not the same as saying no harm is being done.

[Demi01]

20 minutes ago, trents said:

Demi01, I would not assume that consuming small amounts of gluten is safer if you have NCGS instead of celiac disease. It depends on a lot of things. Just because a small amount doesn't seem to bring on noticeable symptoms is not the same as saying no harm is being done.

Thank you for letting me know! I am relatively new to the topic and still learning. Good to know. 

I'm Italian so it's going to be hard letting go of gluten 😆 

[trents]

47 minutes ago, Demi01 said:

Thank you for letting me know! I am relatively new to the topic and still learning. Good to know. 

I'm Italian so it's going to be hard letting go of gluten 😆 

For a lot of people, having an official diagnosis of celiac disease makes it easier to stay on track with the gluten-free diet. They can't rationalize cheating by saying, "Well maybe it's my imagination. It could be something else in my diet besides gluten. So, let me give gluten another try."  And it also gives them more credibility with medical professionals and skeptical friends and family members. To put it another way, having an official diagnosis can have some psychological and social advantages.

[Demi01]

22 minutes ago, trents said:

For a lot of people, having an official diagnosis of celiac disease makes it easier to stay on track with the gluten-free diet. They can't rationalize cheating by saying, "Well maybe it's my imagination. It could be something else in my diet besides gluten. So, let me give gluten another try."  And it also gives them more credibility with medical professionals and skeptical friends and family members. To put it another way, having an official diagnosis can have some psychological and social advantages.

This makes total sense because it's what I catch myself thinking sometimes.. if I test negative for celiac I will wonder if the result is reliable, but I will label it as a sensitivity, and that will make it harder to go fully gluten-free. Luckily it won't be too shocking as I have already adapted a mostly gluten-free diet. And yes, I absolutely agree on the social advantages too.

[Scott Adams]

After all these years I can't say that diagnosed celiacs cheat less than those with non-celiac gluten sensitivity, or those who are self diagnosed, but I understand wanting to know for sure whether you have the more serious version of the two. Hopefully your doctor will run a full celiac blood panel which should give you an answer, and here is more about that:

 

[Scott Adams]

By the way, there are medical experts like Dr. Kenneth Fine and Dr. Rodney Ford who believe that many with non-celiac gluten sensitivity are actually in an early stage of celiac disease, and that "gluten sensitivity" is the actual broader disorder (and those with celiac disease just make up a small portion of this group)--and that every one who is gluten sensitive needs to avoid all gluten to avoid getting full blown celiac disease and/or the myriad of other autoimmune and health issues that can come with eating gluten when you're sensitive to it. 

These articles are interesting:

 

 

[trents]

48 minutes ago, Scott Adams said:

By the way, there are medical experts like Dr. Kenneth Fine and Dr. Rodney Ford who believe that many with non-celiac gluten sensitivity are actually in an early stage of celiac disease, and that "gluten sensitivity" is the actual broader disorder (and those with celiac disease just make up a small portion of this group)--and that every one who is gluten sensitive needs to avoid all gluten to avoid getting full blown celiac disease and/or the myriad of other autoimmune and health issues that can come with eating gluten when you're sensitive to it. 

These articles are interesting:

 

 

Over time, forum member experiences, especially those who seem to have obvious celiac symptoms but test negative, have been pushing me in this direction. That is, of understanding NCGS as a precursor to celiac disease. I believe that future research will confirm this to be the case. But even so, it could be the case that many of those with NCGS never progress to full-blown celiac disease.

[Scott Adams]

Both of these doctors agree that most with NCGS won't end up with celiac disease, but some will, however, they also believe that most people with NCGS who continue to eat gluten will have a variety of health issues, and some of these could be severe (for example getting Type 1 diabetes or other autoimmune disorder).