Gluten challenge, and getting a diagnosis

[Inkapathic]

Please read the entire post as every part is important.

I am 17 years old, male. I live in somewhat of a third-world country; so the medical situation is not exactly very developed or up to date, especially concerning something as complicated and misunderstood as celiac. I would not be surprised if I were to consult a doctor that they would still think that such an illness always appears in early childhood with the classical standard symptoms (persistent diarrhea, malnourishment, underdevelopment, etc). I currently do not have a primary care physician—the medical situation here is different and having a personal doctor is not common practice. Furthermore, it has been years since I've paid a visit to the doctor; we do not schedule regular visits. We only go when something is wrong.
Keep all of this in mind because it will be important later.

At some point last year I started feeling really unwell. It did not make sense and there was clearly something going on in my body. I was not communicating it properly to the people around me, or at least they were not picking up on it. The closest person to me told me that it was in my head, due to stress, overthinking, etc... the usual labels we slap onto every other thing that goes wrong these days. Anyway, I kept quiet for a while, realizing more and more over time that what I was experiencing was not normal. As a desperate attempt, I tried going "gluten free," in the midst of great resistance from my mother, just as a test. Remember that I had not, up until this point, spoken to any sort of health professional. As you'd expect, I started to feel better.

It was going well until I collapsed once more in June of this year. I began feeling much worse and symptoms started to creep back in. After a lot of research and testing I concluded that even with how careful I was to avoid cross contamination, the gluten eaten by other members of my family was still making its way to my food. I may have gotten more sensitive over time and as a result my body was no longer able to manage it. I don't have the time and energy to explain everything but simply understand that I've hit a dead end in this regard. My mother does not believe me, she does not think gluten is an issue for me and looks at me as having no right to make such a decision. She doesn't understand how cross contamination works and does not approve of what I'm already doing to mitigate it. If I were to ask for more precautionary measures or straight up banning gluten in the house, she would not only refuse, but probably cause more harm than good. I cannot cook my food separately or get it from somewhere else.

In short and plain terms, I need a diagnosis to continue. Explaining and communication has not led anywhere. I need tangible proof for my claims. I am almost certain what I have is celiac disease and not something else like NCGS, I can't go into detail but just trust me.

This is where it's even trickier. I need to be on the stuff to get an accurate test. That means, I need to do a gluten challenge. Which right now sounds impossible. I am, with the small exposure coming from cross contamination, mentally, and to an extent, physically, impaired.
Incapacitated.
I can't even maintain my studies.
And to say that gluten has changed my life, is an understatement.
It's not just that I don't want to do it because I would feel bad. I genuinely think I could hit the biological limit of what my body can deal with; and since unlike back when the cause of my issues was unbeknownst to me, everything that would be happening now would be as a result of my own decision, and under my conscious "control": as I am the one eating what is to me, poison. And as everyone knows, not having the choice eliminates the "willpower" aspect of doing something undesirable, or keeping away from something desirable. Thus I am concerned that some time into the gluten challenge, the "survivalist" part of my brain would take over and prevent me from continuing to harm myself, whether I like it or not; because according to the only experience I have with suddenly eating gluten after a while of keeping away from it, it is highly extreme and serious.
I would then be left with the damage and side effects of glutening for a long time, especially since I would not even be able to recover from it fully.

I should be visiting a doctor as soon as possible. I just wanted some guidance and information:

1) How do I make the doctor think of celiac disease and order tests for it? I do not exactly have symptoms that can be described as "classical." As a 17 year old, I think giving hints of knowing what you have to the practitioner is considered massive disrespect and your opinion is likely to be ignored. Should I just straight up ask them to test me for it?

2) Is there a possibility for the test to be accurate without a gluten challenge, even though I'm only receiving small amounts of gluten due to cross contamination? Because the symptoms are certainly there; not as severe as when I was eating gluten every meal, but definitely severe.

3) If it is the way to go, what is the best way to go about a gluten challenge? Do I start with miniscule amounts to get used to it gradually or do I shock my body with a semi large dose, say a crumb?

[trents]

Inkapathic, thank you for such a thorough and articulate explanation to help us understand your situation.

Unless you are eating a significant amount of gluten daily (say, two slices of bread) for four to six weeks before testing the test results may be inconclusive or invalid. What you don't want to happen is to finally get testing scheduled and then have the results be negative. That would undermine your efforts to convince mom and even doctors that you have this disease.

Would it help if you were to print out some information about Celiac Disease and have your mother read it. Show her pictures of blunted villi, a list of symptoms, a non-technical definition of what Celiac Disease is, etc.?

Also, there are do it yourself test kits that can be purchased online. You collect a blood sample from a finger prick and send it in to a lab. https://www.beyondceliac.org/research-news/at-home-test-for-celiac-disease-launches/  and https://www.imaware.health/at-home-blood-test/celiac-disease-screening. Not sure if that is affordable for you.

Once a Celiac has been gluten free for a while, the usually find, as you have indicated, they have a lower tolerance for gluten exposure than before.

I'm thinking that before you go to see a doctor, be prepared to present your case with a well thought out description of what you have been experiencing and what you have found out through research. Maybe you can write it out and give it to him/her to read. Maybe instead of feeling threatened or disrespected the doctor will respect your diligence. 

[Inkapathic]

Thank you for your reply @trents.

17 hours ago, trents said:

Unless you are eating a significant amount of gluten daily (say, two slices of bread) for four to six weeks before testing the test results may be inconclusive or invalid. What you don't want to happen is to finally get testing scheduled and then have the results be negative. That would undermine your efforts to convince mom and even doctors that you have this disease.

That's what I expected. I will probably only get one chance to be diagnosed, so I better make the most out of it.

17 hours ago, trents said:

Would it help if you were to print out some information about Celiac Disease and have your mother read it. Show her pictures of blunted villi, a list of symptoms, a non-technical definition of what Celiac Disease is, etc.?

Ultimately no, because she has taken medical studies very long ago (but she is not practicing medicine now). Back then, science's understanding of celiac disease was very primitive, according to what I know. She is not open to accepting what modern research and studies have revealed, primarily because whatever I'm interested in showing her is pulled from the internet which apparently makes it completely invalid. She DOES know what celiac disease is; only she refuses to see it any way other than the way it was understood in the 80s and 90s: the illness caracterized by failure to thrive in children due to malnourishment. It is very clear today that such a disease can develop at any age, but my efforts to convince her of this were to no avail.

17 hours ago, trents said:

Also, there are do it yourself test kits that can be purchased online. You collect a blood sample from a finger prick and send it in to a lab. https://www.beyondceliac.org/research-news/at-home-test-for-celiac-disease-launches/  and https://www.imaware.health/at-home-blood-test/celiac-disease-screening. Not sure if that is affordable for you.

Unfortunately, that is not affordable currently—and even if it were, I do not have any means of performing the purchase online. Delivery can also be an issue. I have not checked local pharmacists but I would be very surprised if such equipment is available in my region with a reasonable price tag.

17 hours ago, trents said:

I'm thinking that before you go to see a doctor, be prepared to present your case with a well thought out description of what you have been experiencing and what you have found out through research. Maybe you can write it out and give it to him/her to read. Maybe instead of feeling threatened or disrespected the doctor will respect your diligence. 

I will make sure to do that. The only thing that concerns me is the possibility that the professional medical scene in here is lagging behind in regards to this condition. What if they don't even understand that there are highly sensitive people who react to minuscule amounts of gluten? Because one of the counter arguments posed by my mother is that, since I am supposedly "gluten free," then why am I still unwell. And if someone can't wrap their head around the fact that even a sand grain's worth of, say, flour, can hurt, I have no way of getting my point across.

[trents]

I would encourage you to consider moving out of your mother's house and into your own living quarters as soon as possible so that you can control what you eat. I have a feeling that even if you do get a celiac diagnosis your mother will not fully cooperate. Now is the time to take action to guard your own health. If you can arrest the celiac disease at a young age you have a better chance of avoiding many of the attendant health issues associated with the disease when it goes undiagnosed and gluten continues to be consumed for many years.

Edited November 24, 2020 by trents

[Inkapathic]

On 11/24/2020 at 4:35 PM, trents said:

I would encourage you to consider moving out of your mother's house and into your own living quarters as soon as possible so that you can control what you eat. I have a feeling that even if you do get a celiac diagnosis your mother will not fully cooperate. Now is the time to take action to guard your own health. If you can arrest the celiac disease at a young age you have a better chance of avoiding many of the attendant health issues associated with the disease when it goes undiagnosed and gluten continues to be consumed for many years.

That was my intention for a long time. But it requires a lot, there are many obstacles and it's difficult, if not impossible, to make progress towards such a goal when you are being continuously impaired and assaulted by gluten on a regular basis.

I do not agree though, I believe a diagnosis is all I will need to get her to listen. When she realizes what I've been saying for over a year was true, and that my interpretations match reality, it should be about enough to assign some credibilty to what I say.

But that does not matter in my opinion; the trickiest part is actually getting the diagnosis, not what comes after it. For I am not afraid to take bold and decisive steps when the matter in question is my health, provided proof is present.

Anyway, if I continue to procrastinate and delay the challenge I feel like I will never do it.

Hold me accountable. I want to feel supervised by some person so that I don't chicken out or give up. I will make sure not to put myself in danger though, due to this. I have a small fragment of a beignet in my pocket that I will try to consume on this very day.

[Inkapathic]

It has happened. I have taken in the first visible dose of gluten (not much—about a pill sized fragment) after over a year of gluten free, or rather "gluten reduced." Nothing much has happened so far, but things hit many hours later according to my only experience with glutening.

I will try to document this gluten challenge if possible.

[GFinDC]

Hi inkapathic,

The celiac disease diagnostic process generally is a two part thing.   Usually the first part is to have blood antibody testing for gliaden antibodies.  If the gliaden antibodies are positive, then an endoscopy is scheduled to take biopsy samples of the small intestine lining.  The biopsy samples are checked for evidence of celiac disease.

In the USA there is often a long delay between getting positive blood antibody tests and an endoscopy.  Usually the gastroenterologist (GI) who performs the endoscopy is very busy and it may take 3 months or more to get the endoscopy done.

Doing a gluten challenge is necessary but should be done under a doctors supervision.  A doctor who is not familiar with celiac disease may need some time to read up on it and "get smart" about current testing.  They would also need to contact a GI to arrange things.  The GI may even want to take over the diagnostic process themselves.

I encourage you to share your symptoms with your mother.  Let her know how you are feeling every day and what is going on.  She deserves to be aware even if she doesn't totally accept the idea of you having celiac disease.  People can change their attitudes over time.

Perhaps your mother will be convinced if you have positive antibodies.  But she will still need to learn about cross contamination issues.  Celiac disease is an auto=immune condition and the immune system is very sensitive to things like germs, or tiny amounts of gluten.  Gluten that causes the celiac reaction is a protein found in wheat, rye and barley.  For some celiacs, the protein in oats can cause the same reaction.

Also, you should be aware that having celiac disease can lead to other food intolerances developing.  We have forum members who react to many different foods besides just gluten.

How the celiac diagnostic process works in your country is something we don't know.  Andi suspect is something you don't know either if you haven't talked to a doctor yet.  I think that diagnostic process knowledge is critical to your success.

Edited November 26, 2020 by GFinDC

[Inkapathic]

On 11/26/2020 at 3:14 PM, GFinDC said:

In the USA there is often a long delay between getting positive blood antibody tests and an endoscopy.  Usually the gastroenterologist (GI) who performs the endoscopy is very busy and it may take 3 months or more to get the endoscopy done.

I am not in the USA but if that is the case then I may not be able to do an endoscopy. 3 months after the blood test which itself is probably six weeks after starting a gluten challenge (total of ~4.5 months) is too much. Even the initial 6 weeks is a lot in my opinion.

On 11/26/2020 at 3:14 PM, GFinDC said:

Doing a gluten challenge is necessary but should be done under a doctors supervision.  A doctor who is not familiar with celiac disease may need some time to read up on it and "get smart" about current testing.  They would also need to contact a GI to arrange things.  The GI may even want to take over the diagnostic process themselves.

"Under a doctor's supervision" well okay fair enough, but I can't keep waiting. I've been asking my parents for a doctor since 2 months or more. It just hasn't been possible. So how long until I can go to the doctor remains unknown to me. I am unable to study effectively in my current state, I have an important exam in a few months and so if I wait until I visit a professional, and then waste more time while they "read up on it" all just to do the gluten challenge under his supervision; then only to wait even more so that the tests are accurate... No, I cannot afford that. I am doing the challenge by myself and I do not care what anyone thinks of such a bold move.

On 11/26/2020 at 3:14 PM, GFinDC said:

I encourage you to share your symptoms with your mother.  Let her know how you are feeling every day and what is going on.  She deserves to be aware even if she doesn't totally accept the idea of you having celiac disease.  People can change their attitudes over time.

Perhaps your mother will be convinced if you have positive antibodies.  But she will still need to learn about cross contamination issues. 

I don't really have "obvious" symptoms that can be attributed directly to celiac disease like persistent diarrhea. I do have the latter but it comes and goes. So when I tell her about it she always seeks other unrelated explanations; the same for every other symptom. If I tell her I'm abnormally fatigued, she tells me it's because I am not eating or sleeping well, etc. Frankly I've given up on this. Everything is in my head according to her. I don't think I have anything to gain from convincing her that I am not okay. All I want now is a sheet of paper to officially prove that me and gluten are not friends.

On 11/26/2020 at 3:14 PM, GFinDC said:

How the celiac diagnostic process works in your country is something we don't know.  Andi suspect is something you don't know either if you haven't talked to a doctor yet.  I think that diagnostic process knowledge is critical to your success.

It's as you said. I have no idea how it works. Very little information is available regarding it. This disease is not well-known in my country, and you rarely if ever hear about it in normal day-to-day conversation. Knowing the process of diagnosis is indeed very important, but I assume it can't be too different.

Regarding the gluten challenge, how much should I aim for? That "2 slices of bread each day" is one of the most ambiguous indications I have seen in medical information. Two thin slices of french baguette don't contain the same amount of gluten as two 1-inch thick pieces of large toast, do they? And everyone knows gluten is not just found in bread, so if I want to eat something other than bread how much of it do I need to fulfill the daily requirement? If anyone has an article that gives just a tiny bit more detail than "10g of gluten bye" and the equivalents in various kinds of foods I would very much appreciate it.

[trents]

You are overthinking the 2 slices of bread per day. That's just a rough guideline. The idea is to consume a significant amount amount of gluten each day rather than a trace amount.

[Inkapathic]

25 minutes ago, trents said:

You are overthinking the 2 slices of bread per day. That's just a rough guideline. The idea is to consume a significant amount amount of gluten each day rather than a trace amount.

Alright then. I just didn't want to have to eat more gluten than is adequate for an accurate result and cause too much unnecessary harm. But there is a lot of disagreement anyway regarding what is enough to trigger the desired response (some say 3g of gluten per day, others 10g per day, etc). I guess the more the better.

[trents]

Just pretend you know nothing about Celiac Disease and eat that way until your testing.

[GFinDC]

You can try a google search for celiac in x.  X being replaced with your country name.  Check some of the articles and see if you can find a doctor that knows about celiac.  Maybe give one or two doctors a call and see what they say.  That should get you started on learning about the diagnostic process there.

[Inkapathic]

On 11/28/2020 at 4:58 PM, trents said:

Just pretend you know nothing about Celiac Disease and eat that way until your testing.

If I eat gluten early in the day, it becomes almost impossible to do anything more than just sitting and looking at the wall all day. So currently I'm limited to only one gluten meal that I consume at night, versus three before I knew about gluten.

On 11/29/2020 at 1:31 AM, GFinDC said:

You can try a google search for celiac in x.  X being replaced with your country name.  Check some of the articles and see if you can find a doctor that knows about celiac.  Maybe give one or two doctors a call and see what they say.  That should get you started on learning about the diagnostic process there.

I've found some information, and I think an email address as well. I'll try to inquire some and see what that yields, thought I doubt my messages will be responded to.

 

If anyone is interested in my gluten challenge experience so far, I will try to post updates every so often.

I've started on the 27th of November. I will not count the test on the 25th because the quantity was too small and I did not eat gluten the next day; so it has been a week. I've been increasing the quantity gradually and I intend to continue doing so until I can't anymore.

I'll admit, it has been less severe than I expected. I was totally ready to miss a few days of school but so far that has not been the case. Surprisingly, my "D" has stopped almost completely instead of getting worse. But the brain fog is there, and I can barely leave bed after I wake up (no wonder, since I'm having trouble getting to sleep at night). I went to shower today morning but I just sat there for 30 minutes or something like that because I simply couldn't do anything. Though the weirdest so far has been getting warm and red in the face a while after eating glutent

Frankly I am waiting for the real attack to happen. Because regarding the initial "breakdown" nearly two years ago, I was living normally but feeling ill "under the hood" for weeks before it happened. I guess my body was trying to keep up and continue normally but eventually it gave up; I ended up with D and vomiting, extreme general unwellness, and "mental boiling" as I call it... and things went downhill from there. The brain-related symptoms were the worst; not just fog, but also some bizarre things that I cannot put into words. Like the brain is not functioning properly, thinking would be difficult and I would feel as if someone switched off the lights in my head; as if my thoughts are far away from me. It felt like celiac was attacking my brain more than my intestines.

So what I'm trying to say is, maybe a similar attack will happen and only then will the real symptoms hit.

I actually want it to happen soon because in the more extreme state I mentioned I was actually able to study (to some extent), unlike now, for some reason. Right now I feel like my body only cares about eating and distributes its energies around that purpose.

[trents]

Sounds like you are taking a reasonable approach. I should think that eating one meal a day containing a significant amount of gluten should give a valid test. We can all attest to the fact that once you have been gluten-free for a while you become less tolerant of it when you do consume some. Perhaps the reverse is true. That is, if you start back on gluten regularly you rebuild some sort of tolerance to it.

[Inkapathic]

I apologize for the late update; it has been somewhat busy lately.

The gluten challenge has been going well, I've managed to hit significant quantities of gluten and the symptoms were kept at bay. Aside from extreme fatigue and flatulence, nothing much more than what I already had before starting the challenge has been bothering me in the past days.

This is regarding the gluten challenge. 

This week, my father had received a surprise call and it turned out the doctor's appointment was scheduled the day after. I went in for the gastroenterologist and after about 10 minutes of talking, he sent me off for an endoscopy. "We will search for celiac disease" were his words. Since I read the minimum gluten challenge for an endoscopy is 2 weeks, me being at 2 and a half, I went through with it. Due to my recent digestive situation I have been consistently skipping breakfast and so I was already "fasting"; thus the endoscopy was done right there and then on the same day. It took about 5 minutes and was not comfortable; but if I'd known that (unfortunately) the doctor only took 4 biopsies from the small intestine, if given the option I would have agreed to stay longer and get 6-8 biopsies for a more accurate result. The idea regarding the number of biopsies to take did not cross my mind until much later. It's probably because I did not expect the endoscopy on the same day... even the appointment itself was a surprise.

I was told essentially nothing, but according to the endoscopy report paper we were given, things mostly looked fine; except for some interesting statements (I did my best to translate):

« FUNDUS: Folds present, regular, flattened in places (B x FL3)

BULB: No anomaly (B x 2)

DUODENUM: Traveled up to D2: Folds present, regular, discretely flattened in places (B x FL1) (B x FL1)

CONCLUSION:

    – Aspect of fundic atrophy

    – Aspect of duodenal atrophy »

I would like to hear impressions from those who have experience with endoscopy results. I really want an official celiac diagnosis and so I was initially enlightened to see signs of duodenal atrophy because I know it's a celiac disease thing. But seeing the same observations were made in the fundus, which is a part of the stomach and has nothing to do with celiac damage, I started to consider the possibility that they are both due to something else, because celiac disease is not the only known cause for atrophy. If anyone has knowledge feel free to provide some insight.

Regardless, the biopsy results are the most important. I've read many times here that celiac damage often cannot be seen until the actual samples are put under the microscope, and that the endoscopy's "all fine" observations aren't always relevant.

The doctor also gave me some blood tests to take but none of them are for celiac disease, as such tests (and genetic ones as well according to my knowledge) do not appear to even exist in here.

[trents]

Yes, not much to conclude until you get the biopsy report.

[Inkapathic]

Biopsy report has arrived. "No villous atrophy" and "absence of evidence of celiac disease in the limits of this test."

"Villi of normal height" in the bulb biopsies.

Negative for celiac disease.

My parents are now all over it with "you DO NOT have celiac disease." I don't know if I'll ever get a second chance. I'm not sure where to go from here. There are no celiac blood tests or genetic tests to take. Even Non-Celiac Gluten Sensitivity is probably a fairytale around here.

I know gluten is an issue because my body is telling me.

[knitty kitty]

Is it possible to get a genetic test for common Celiac genes? 

Have you been checked for vitamin deficiencies?  You can be deficient in vitamins like niacin, thiamine, B12, and B6 which can cause gastrointestinal symptoms.  Vitamin deficiencies can occur outside of Celiac Disease.  

Hope this helps

 

[Inkapathic]

6 hours ago, knitty kitty said:

Is it possible to get a genetic test for common Celiac genes? 

I don't think so. Even simple tTG IgA blood tests aren't available.

6 hours ago, knitty kitty said:

Have you been checked for vitamin deficiencies?  You can be deficient in vitamins like niacin, thiamine, B12, and B6 which can cause gastrointestinal symptoms.  Vitamin deficiencies can occur outside of Celiac Disease. 

No, I have not been checked for them. But I do not see how vitamin deficiencies outside of celiac disease would improve on a gluten free diet, which is what I saw (improvement of symptoms on a gluten free diet).

6 hours ago, knitty kitty said:

Hope this helps

Thanks a lot for the reply.

[Scott Adams]

The genetic tests can be done inexpensively via many private online companies, including 23andMe.