Confused and upset

[Belll]

My doctor does not believe that I have a gluten-related issue, even though I've stated to him that my health problems went away when I stopped gluten, he was doubtful. 

Right when he walked into the room, he was like "You look anxious, what is wrong" and I said in surprise "oh, I guess I do look anxious, but I don't feel anxious. I am just not feeling well because I've eaten gluten lately. That's what I want to talk to you about today, gluten. I feel bad after I eat gluten, and when I stop eating gluten I feel better." 

But for whatever reason, the doctor stuck with this narrative that it's just anxiety and stress, and that my issues were psychological, which rubbed me the wrong way. He asked if I had taken anxiety meds, and I said the anxiety went away when I stopped eating gluten, but he was doubtful of this. 

We did talk about celiac disease testing and how it works, but based on his opinion, he didn't think I had gluten related issues, and I don't really think his opinion is accurate with what I've experienced in my daily life. 

I cut off gluten and dairy because it was causing me stomach pains. I can't eat all purpose flour, because it'll make me hypoglycemic and ill for a few days to weeks, depending on the amount ingested and the amount being processed in my body. I can't eat barley or drink beer because that will make me have diarrhea and stomach pain. I'm certain that it's gluten, because I've felt better without it, but my doctor doesn't believe it. So I am hesitant to do celiac disease testing with him, because he doesn't seem to believe anything I'm telling him. 

And he thinks that I'm persuaded through the power of suggestion, and that I'm just blaming gluten for all my problems because I have a psychological issue or something. However, if he thinks that I'm so easily influenced through the power of suggestion because of anxiety, then the moment he walked right into the room and suggested that I looked anxious, I should have just believed him right off the bat. However, I didn't, I stated what I knew to be true in my experience, that gluten causes all these bad symptoms in me, and that I ate it recently and was suffering from it, but he just doesn't believe me or take it seriously.

So I don't feel right about going to him to get anything tested. He didn't even do any basic testing on me, no blood pressure, no stethoscope, no nothing, he just observed me, and based on his observations, I just looked anxious to him. I didn't appear sick enough to make him take me seriously. I was not pale enough for anemia, I didn't say that I lost any weight (from flattened villi in my gut, but I've always been underweight and sick throughout my life, and never put on much weight), I didn't say I had diarrhea, so he didn't think it was gluten. I feel like if I were to get tested for celiac disease and it comes back negative, the doctor will automatically assume that it's all psychological which is my fear, instead of it being a gluten sensitivity issue. 

I left the clinic feeling very disheartened, and second guessing whether or not it is actually gluten that was causing these issues or not.

But I know that when I cut off gluten, I have higher energy levels, I'm able to lift heavy things for work, I can run around, I can interact with people, I have good sleep, I can leave the house. I can do a bunch of things and it's amazing to me.

But when I eat gluten, it's the opposite, I'm just sitting in the chair and I feel fatigued, and walking ten steps to the fridge and back is a huge tiring ordeal that leaves me out of breath. I have rapid heart beat, I fixate and do repetitive things. I struggle to socialize, I struggle to leave the house, I struggle to have enough energy to cook food, I lack the appetite to eat food, I struggle with showering, I struggle to sleep, I struggle with every single damn thing (and this struggle was constantly something I had to deal with my entire life, with people assuming I'm just lazy, making up excuses for not being able to do things, and just overthinking about everything too much to the point I caused myself anxiety, and it lead to people getting fed up and angry with me, and they treated me badly which made me more miserable on top of everything), but that nightmare all went away when I stopped eating gluten. I was finally well, I was finally better, and I was finally able to be independent and take care of myself.

I don't really know what type of doctors would be good to talk about gluten related issues. Like... a bowel specialist? An allergist? Like what kind of doctor would be best to talk to about gluten related issues? Because my doctor might know a lot of things, but he does not know much about gluten in greater detail, and he didn't refer me to anyone who I can speak to about gluten related issues, and I just left the office with so many unanswered questions and feeling misunderstood.

I don't know if my symptoms are valid enough to be deemed as a gluten related issue now, since my doctor doesn't think it is, so I am at a loss now. I can keep cutting out gluten, but I don't have an official diagnosis or anything about what I'm going through, and so there's no validation that I'm actually suffering from this issue on my medical records, and that's frustrating because I'd like to tell my workplace that I have an official diagnosis so that I can work out something with them in terms of work hours and modified work duties, but I have nothing to show them, because this doctor won't take me seriously, and it's just maddening to have to keep saying the cause is gluten, and to be told by him it's otherwise. 

 

[trents]

Your experience is not uncommon, believe me! Many doctors, especially older ones are not knowledgeable about gluten-related medical problems. They are relying on very old information from their medical school training when it was thought that celiac disease is a very rare condition than affects only about 1 in 5000 people. Today, we know that the number is closer to 1 in 100 for celiac disease and about 12% for non celiac gluten sensitivity. 

Get a different doctor and look for a younger one. A GI doctor would be most likely to be familiar with celiac disease but even then many of the older ones are not well-informed. The celiac community has become well-aware that you have to take many doctors by the hand, be assertive and be your own advocate. Here is a primer on what tests to ask for: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

There are also home screening tests for celiac disease that cost about $100 USD.

Edited September 19, 2021 by trents

[GodsGal]

Hi Belll,

That is rough. Keep in mind that in order for your tests to be accurate you will need to be eating the equivalent of the amount of gluten found in 2 slices of wheat bread each day. You will need to be eating gluten for 6-8 weeks for the blood serum test, and 2 weeks for the endoscopy.

I agree with Trents. You need to be seen by a different doctor. I don't know what your situation is...are you able to just go see a specialist, or do you have to get a referral?

[Belll]

3 hours ago, trents said:

Your experience is not uncommon, believe me! Many doctors, especially older ones are not knowledgeable about gluten-related medical problems. They are relying on very old information from their medical school training when it was thought that celiac disease is a very rare condition than affects only about 1 in 5000 people. Today, we know that the number is closer to 1 in 100 for celiac disease and about 12% for non celiac gluten sensitivity. 

Get a different doctor and look for a younger one. A GI doctor would be most likely to be familiar with celiac disease but even then many of the older ones are not well-informed. The celiac community has become well-aware that you have to take many doctors by the hand, be assertive and be your own advocate. Here is a primer on what tests to ask for: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

There are also home screening tests for celiac disease that cost about $100 USD.

It's unfortunate that many doctors are not knowledgable, because many people can be helped if only the doctors knew about it. I'd hate to think that I need to get to a very severe point of sickness before the doctor will take me seriously. I guess I have to find another doctor somehow, that actually knows a thing or two about gluten related issues. Your words were very helpful, thank you so much. 

[Belll]

15 minutes ago, GodsGal said:

Hi Belll,

That is rough. Keep in mind that in order for your tests to be accurate you will need to be eating the equivalent of the amount of gluten found in 2 slices of wheat bread each day. You will need to be eating gluten for 6-8 weeks for the blood serum test, and 2 weeks for the endoscopy.

I agree with Trents. You need to be seen by a different doctor. I don't know what your situation is...are you able to just go see a specialist, or do you have to get a referral?

That's... rather a scary thought. I know how bad my body will react if I eat gluten by accident, but eating it on purpose for 6-8 weeks... oh my god that's terrifying.

I'm sorry I typed so much in my original post, but the gist of it is that I told my doctor that I felt better after cutting out gluten, but he is doubtful, and think that my issues are psychological, anxiety and stress related. I left the doctor's office without any answers, no referrals to a specialist, nothing, because he does not believe it's a gluten related issue. 

I'm not sure how the whole doctor thing works, but I think that doctors refer patients to a specialist, but I have no clue if I can just go directly to a specialist without being referred there by a doctor first. And I don't know if it's good to jump from doctor to doctor or not, but I guess having another doctor's opinion would be a good thing. 

[RMJ]

Whether or not you need a referral to a specialist probably depends on your health insurance.  Some types require referrals, and some don’t.  

 It is perfectly ok to go to another doctor if you feel the first doctor has been dismissive of your issues!

[GodsGal]

1 hour ago, RMJ said:

Whether or not you need a referral to a specialist probably depends on your health insurance.  Some types require referrals, and some don’t.  

 It is perfectly ok to go to another doctor if you feel the first doctor has been dismissive of your issues!

 

2 hours ago, Belll said:

That's... rather a scary thought. I know how bad my body will react if I eat gluten by accident, but eating it on purpose for 6-8 weeks... oh my god that's terrifying.

I'm sorry I typed so much in my original post, but the gist of it is that I told my doctor that I felt better after cutting out gluten, but he is doubtful, and think that my issues are psychological, anxiety and stress related. I left the doctor's office without any answers, no referrals to a specialist, nothing, because he does not believe it's a gluten related issue. 

I'm not sure how the whole doctor thing works, but I think that doctors refer patients to a specialist, but I have no clue if I can just go directly to a specialist without being referred there by a doctor first. And I don't know if it's good to jump from doctor to doctor or not, but I guess having another doctor's opinion would be a good thing. 

I think that your first post was just fine. I think that it helps to communicate the full picture and exactly how you are feeling. And, that is important.

Honestly, the thought of a gluten challenge would scare me too. 

Also, there are hundreds of symptoms that can be caused by gluten issues. Your symptoms are valid, and they are worth looking into.

I would encourage you to get a second opinion. If you do need to get a referral from your current doctor, and they are reluctant, then I would suggest that you put the request in writing in addition to verbally making a request. Sometimes a written record of the request may be helpful. 

Also, you might look into gastroenterologists in your location that specialize in celiac disease.

I hope this helps! Keep us posted!

[Belll]

2 hours ago, RMJ said:

Whether or not you need a referral to a specialist probably depends on your health insurance.  Some types require referrals, and some don’t.  

 It is perfectly ok to go to another doctor if you feel the first doctor has been dismissive of your issues!

Oh that's very good to know! I will look into it.

I think a part of me wants to trust a doctor's judgement, but of course doctors are humans, and humans are not right all the time. It's nice to be told that it's ok to go to another doctor, and hearing that just makes me feel better.

[Belll]

2 minutes ago, GodsGal said:

 

I think that your first post was just fine. I think that it helps to communicate the full picture and exactly how you are feeling. And, that is important.

Honestly, the thought of a gluten challenge would scare me too. 

Also, there are hundreds of symptoms that can be caused by gluten issues. Your symptoms are valid, and they are worth looking into.

I would encourage you to get a second opinion. If you do need to get a referral from your current doctor, and they are reluctant, then I would suggest that you put the request in writing in addition to verbally making a request. Sometimes a written record of the request may be helpful. 

Also, you might look into gastroenterologists in your location that specialize in celiac disease.

I hope this helps! Keep us posted!

I didn't actually realize how much I've typed in the original post until after I posted it, because I was just so upset about it all, so thank you for taking the time to read and reply to me.

"Your symptoms are valid, and they are worth looking into." This made me feel better, and I will try to remember that. I wish that doctors took this as an oath of some kind. 

I never knew I could make a written request to a doctor, that's really interesting and good to know. 

I'm learning so much, I'll try to look for a gastroenterologist, or at least someone who can help me.

 

[GodsGal]

6 minutes ago, Belll said:

I didn't actually realize how much I've typed in the original post until after I posted it, because I was just so upset about it all, so thank you for taking the time to read and reply to me.

"Your symptoms are valid, and they are worth looking into." This made me feel better, and I will try to remember that. I wish that doctors took this as an oath of some kind. 

I never knew I could make a written request to a doctor, that's really interesting and good to know. 

I'm learning so much, I'll try to look for a gastroenterologist, or at least someone who can help me.

 

My understanding is that a written request, whether it comes in paper form, or through email, it becomes a part of your patient record. Then it is harder to dismiss or ignore.

I know that it is a lot, and it is probably overwhelming sometimes. You can do it! We're in your corner.

[Belll]

9 hours ago, GodsGal said:

My understanding is that a written request, whether it comes in paper form, or through email, it becomes a part of your patient record. Then it is harder to dismiss or ignore.

I know that it is a lot, and it is probably overwhelming sometimes. You can do it! We're in your corner.

Yes thank you for all your advice! It is very hard struggling with these issues alone. I just decided to make an account here because I didn't know what else to do, and I'm so glad I did that because everyone here has been so helpful. I'll try to find someone that specializes in gluten related issues, and hopefully the outcome will be much better.