What would you do in this situation?

[caseylarae]

Hi all! I'm new here and I joined to ask your advice. I'm curious what you'd do in my shoes or if you have experienced something similar with trying to get diagnosed. I've suspected I have celiac for almost 5 years but have had a heck of a time getting diagnosed; none of my doctors have ever seemed very aware of celiac at all (living in the USA). At this point, I also have several other conditions that are likely advanced complications of celiac and it's such a bummer not to have a diagnosis one way or the other. Anyway, I'll get into more detail below, any thoughts you have are appreciated ❤️ thank you!

 

I've had symptoms of celiac since I was very young, and early on it was mostly gas, bloating, constipation, and fatigue. My parents didn't seem to notice, or maybe asked they asked doctors and didn't get an answer? Not really sure. I'm also autistic and was just diagnosed a couple years ago at 29; there was clearly some stuff going on that my parents didn't notice, I look back and wonder about it sometimes. But it's water under the bridge at this point. In high school my celiac-like symptoms started getting worse. At one point I went to the doctor for a blood draw and I was so anemic that the doctors told my parents the iron in my blood "could not be measured". The doctor sent me to a nutritionist who recommended an iron supplement and things continued the same way as they were.

 

Fast forward to college, I was really starting to struggle with progressively more severe symptoms of celiac. By that point I had developed clinical depression and generalized anxiety as well as brain fog and migraines. It was causing significant issues with school and general functioning.

 

In my mid-twenties I took a break from college. During that time I began to have symptoms of rheumatoid arthritis and started having near constant apthous ulcer attacks. When it was time to go back to college, I was having monthly attacks with six or seven or ten extremely painful sores in my mouth at a time, often larger than 1cm. I started missing a lot of school because I would get so sick whenever this happened. In my last semester of college, I went to the doctor begging her to help me figure out why I was so sick. She suggested I stop eating dairy? It sounded ridiculous to me at the time, and she refused to test for any vitamin/mineral deficiencies even though I directly asked her to. My b12 deficiency at that point was so severe I was experiencing the worst symptoms: anxiety to the point of paranoia along with peripheral neuropathy in my hands and feet. This doctor sent me to go see, once again, 10 years later...a nutritionist.

 

The kind and knowledgeable nutritionist helped me do an elimination diet to test what was causing the problems, listened to my symptoms, and recommended a b12 supplement and a vitamin d supplement. We very quickly discovered through the elimination diet that wheat was the primary cause of all my symptoms.

 

I narrowly escaped failing out of college with the help of this nutritionist, just barely able to get through my finals and making deals with my teachers about how to handle the school I'd missed. It was so stressful!! At that point though...still no diagnosis for what had been causing these extremely debilitating problems. I started learning about celiac after I graduated, and looking back I feel just shocked and amazed by the negligence of my doctors. A year after I graduated from college I was diagnosed with rheumatoid arthritis, and have since then unfortunately developed a myriad of other immune and allergy issues including a dust mite allergy, flea allergy, and oral allergy syndrome related to pollen. This is a lot to live with, and it's all likely permanent. My conclusion for awhile has been that eating wheat stressed my immune system to the breaking point. RA is a known complication of celiac, as also are b12 deficiency and anemia and depression and anxiety.

 

The end of the story is this: it took an entire year to fix my stomach and my immune system under the guidance of that kind nutritionist, using both probiotics and a strict fodmap diet while staying away from gluten. I'm on an extremely strict gluten free diet still in my early thirties; I can tell if something has been cross contaminated within 10 minutes of eating it because I get violently ill and stay that way for weeks. It's a full-body immune system reaction complete with dermatitis on my hands and face and neck, sores all over my mouth, migraines, nausea and and other intense stomach problems, joint pain, swollen lymph nodes, and severe fatigue. As long as I adhere to a gluten free diet, I don't have many health issues and my RA also generally stays in remission. So far I haven't needed any medications for it because it seems to be so related to eating gluten. Every time I get glutened I have an autoimmune flare, like clockwork.

 

TLDR; I have nearly all the symptoms of celiac dating back to childhood and am still undiagnosed. If you were in my position, would you try to get a diagnosis? Would you go through a gluten challenge knowing that you'll be sick for months or years following? Or would you stay on the diet that's working for you and leave it at that? Just wondering what you would do if you were in my shoes, or if anybody has been through something similar. Thank you so much for your thoughts!

 

[trents]

Welcome to the forum, caseylarae!

Your story is not unlike many who have joined this forum. Celiac disease and NCGS (Non Celiac Gluten Sensitivity) are just not on a lot of docs' radar. Most of us suffered for many years before we got a celiac diagnosis and were able to get on the road to healing. By that time, sad to say, irreversible damage has been done to some body systems.

I see no reason for you to take on the misery of a gluten challenge just to get tested. The proof is in the pudding. When you eliminate gluten from your life you have much better health. Having said that, it may be wise to treat some of the associated medical conditions caused by going so long with undiagnosed celica disease. Many of them have nutritional deficiency bases such that some serious supplements will help significantly. It would be important to choose vitamins and supplements that are gluten free. Costco is a good place to start.

Edited July 3, 2023 by trents

[caseylarae]

35 minutes ago, trents said:

Welcome to the forum, caseylarae!

Your story is not unlike many who have joined this forum. Celiac disease and NCGS (Non Celiac Gluten Sensitivity) are just not on a lot of docs' radar. Most of us suffered for many years before we got a celiac diagnosis and were able to get on the road to healing. By that time, sad to say, irreversible damage has been done to some body systems.

I see no reason for you to take on the misery of a gluten challenge just to get tested. The proof is in the pudding. When you eliminate gluten from your life you have much better health. Having said that, it may be wise to treat some of the associated medical conditions caused by going so long with undiagnosed celica disease. Many of them have nutritional deficiency bases such that some serious supplements will help significantly. It would be important to choose vitamins and supplements that are gluten free. Costco is a good place to start.

Thank you for your thoughts, trents! At this point I'm hoping that someday there will be a less invasive way to get tested. Thankfully the treatment has been straightforward for the celiac itself and it has worked wonders! I'm probably stuck with the other satellite conditions at this point, unfortunately. Working with a rheumatologist and a physical therapist for the other joint/autoimmune issues has been helpful, as well as seeing an allergist/immunologist for the other allergies. It's been kind of like whack-a-mole, a very long process back to health and sometimes quite scary. Most people you meet don't understand (including doctors) or even write it off as being in your mind, which can make it even more scary.

The peripheral neuropathy/other neurological issues from the B12 deficiency thankfully resolved after a couple years of taking b12 supplements, but my doctors have said I need to take those supplements indefinitely. The iron anemia resolved on its own with a healthy diet. A long process for sure, and I'm with you that it feels to like it might not be worth it to try and get tested at this point. I really feel for everybody else who has been through this kind of scenario trying to get tested. Thanks for your input!

[trents]

3 hours ago, caseylarae said:

 

 

3 hours ago, caseylarae said:

Thank you for your thoughts, trents! At this point I'm hoping that someday there will be a less invasive way to get tested. Thankfully the treatment has been straightforward for the celiac itself and it has worked wonders! I'm probably stuck with the other satellite conditions at this point, unfortunately. Working with a rheumatologist and a physical therapist for the other joint/autoimmune issues has been helpful, as well as seeing an allergist/immunologist for the other allergies. It's been kind of like whack-a-mole, a very long process back to health and sometimes quite scary. Most people you meet don't understand (including doctors) or even write it off as being in your mind, which can make it even more scary.

The peripheral neuropathy/other neurological issues from the B12 deficiency thankfully resolved after a couple years of taking b12 supplements, but my doctors have said I need to take those supplements indefinitely. The iron anemia resolved on its own with a healthy diet. A long process for sure, and I'm with you that it feels to like it might not be worth it to try and get tested at this point. I really feel for everybody else who has been through this kind of scenario trying to get tested. Thanks for your input!

Welcome to the forum, caseylarae!

Your story is not unlike many who have joined this forum. Celiac disease and NCGS (Non Celiac Gluten Sensitivity) are just not on a lot of docs' radar. Most of us suffered for many years before we got a celiac diagnosis and were able to get on the road to healing. By that time, sad to say, irreversible damage has been done to some body systems.

I see no reason for you to take on the misery of a gluten challenge just to get tested. The proof is in the pudding. When you eliminate gluten from your life you have much better health. Having said that, it may be wise to treat some of the associated medical conditions caused by going so long with undiagnosed celica disease. Many of them have nutritional deficiency bases such that some serious supplements will help significantly.

 

 

 

[trents]

I would suggest you consider genetic testing through 23andMe or another third party company to see if you possess any of the genes associated with celiac disease. If you have one or more of them it doesn't confirm that you are a celiac but it does establish the potential for it. About 40% of the population have the genetic potential but only 1% or so develop the disease. If you don't have any of the genes you might assume you have NCGS. However, with your symptoms and with other autoimmune conditions, plus your response to going gluten free, if you have one or more of the genes I would put my money on you having celiac disease. I think the testing costs about 200 USD. It might give you some peace of mind.

Edited July 4, 2023 by trents

[caseylarae]

That's a good idea, thank you!

[frieze]

7 hours ago, caseylarae said:

That's a good idea, thank you!

Check for DQ 9, not just 2 and 8.

[Kurlykaitlyn]

On 7/3/2023 at 12:52 PM, caseylarae said:

Hi all! I'm new here and I joined to ask your advice. I'm curious what you'd do in my shoes or if you have experienced something similar with trying to get diagnosed. I've suspected I have celiac for almost 5 years but have had a heck of a time getting diagnosed; none of my doctors have ever seemed very aware of celiac at all (living in the USA). At this point, I also have several other conditions that are likely advanced complications of celiac and it's such a bummer not to have a diagnosis one way or the other. Anyway, I'll get into more detail below, any thoughts you have are appreciated ❤️ thank you!

 

I've had symptoms of celiac since I was very young, and early on it was mostly gas, bloating, constipation, and fatigue. My parents didn't seem to notice, or maybe asked they asked doctors and didn't get an answer? Not really sure. I'm also autistic and was just diagnosed a couple years ago at 29; there was clearly some stuff going on that my parents didn't notice, I look back and wonder about it sometimes. But it's water under the bridge at this point. In high school my celiac-like symptoms started getting worse. At one point I went to the doctor for a blood draw and I was so anemic that the doctors told my parents the iron in my blood "could not be measured". The doctor sent me to a nutritionist who recommended an iron supplement and things continued the same way as they were.

 

Fast forward to college, I was really starting to struggle with progressively more severe symptoms of celiac. By that point I had developed clinical depression and generalized anxiety as well as brain fog and migraines. It was causing significant issues with school and general functioning.

 

In my mid-twenties I took a break from college. During that time I began to have symptoms of rheumatoid arthritis and started having near constant apthous ulcer attacks. When it was time to go back to college, I was having monthly attacks with six or seven or ten extremely painful sores in my mouth at a time, often larger than 1cm. I started missing a lot of school because I would get so sick whenever this happened. In my last semester of college, I went to the doctor begging her to help me figure out why I was so sick. She suggested I stop eating dairy? It sounded ridiculous to me at the time, and she refused to test for any vitamin/mineral deficiencies even though I directly asked her to. My b12 deficiency at that point was so severe I was experiencing the worst symptoms: anxiety to the point of paranoia along with peripheral neuropathy in my hands and feet. This doctor sent me to go see, once again, 10 years later...a nutritionist.

 

The kind and knowledgeable nutritionist helped me do an elimination diet to test what was causing the problems, listened to my symptoms, and recommended a b12 supplement and a vitamin d supplement. We very quickly discovered through the elimination diet that wheat was the primary cause of all my symptoms.

 

I narrowly escaped failing out of college with the help of this nutritionist, just barely able to get through my finals and making deals with my teachers about how to handle the school I'd missed. It was so stressful!! At that point though...still no diagnosis for what had been causing these extremely debilitating problems. I started learning about celiac after I graduated, and looking back I feel just shocked and amazed by the negligence of my doctors. A year after I graduated from college I was diagnosed with rheumatoid arthritis, and have since then unfortunately developed a myriad of other immune and allergy issues including a dust mite allergy, flea allergy, and oral allergy syndrome related to pollen. This is a lot to live with, and it's all likely permanent. My conclusion for awhile has been that eating wheat stressed my immune system to the breaking point. RA is a known complication of celiac, as also are b12 deficiency and anemia and depression and anxiety.

 

The end of the story is this: it took an entire year to fix my stomach and my immune system under the guidance of that kind nutritionist, using both probiotics and a strict fodmap diet while staying away from gluten. I'm on an extremely strict gluten free diet still in my early thirties; I can tell if something has been cross contaminated within 10 minutes of eating it because I get violently ill and stay that way for weeks. It's a full-body immune system reaction complete with dermatitis on my hands and face and neck, sores all over my mouth, migraines, nausea and and other intense stomach problems, joint pain, swollen lymph nodes, and severe fatigue. As long as I adhere to a gluten free diet, I don't have many health issues and my RA also generally stays in remission. So far I haven't needed any medications for it because it seems to be so related to eating gluten. Every time I get glutened I have an autoimmune flare, like clockwork.

 

TLDR; I have nearly all the symptoms of celiac dating back to childhood and am still undiagnosed. If you were in my position, would you try to get a diagnosis? Would you go through a gluten challenge knowing that you'll be sick for months or years following? Or would you stay on the diet that's working for you and leave it at that? Just wondering what you would do if you were in my shoes, or if anybody has been through something similar. Thank you so much for your thoughts!

 

First of all, 

im so sorry to hear about your history. You’re not alone. Many of us with celiac have had life long illnesses or years of issues before diagnosis. My health seemed to deteriorate as I got older as you shared and I learned that gluten was the major culprit when I heard about celiac disease. 
Like you though, I was aware of how gluten affected my body and had already removed it from my diet. But I desperately felt the desire to be properly diagnosed, maybe because I felt it would rationalize all my years of struggling and being dismissed by my parents and other adults. But let me tell you, I ate gluten for just a week and it was HORRIBLE! I felt like my body was literally turning off slowly and painfully. I had severe chills, aches and pains, serious brain fog, and became severely dehydrated from the diarrhea that wouldn’t stop. I went to see the doctor after that week and could barely walk in there myself. I was 24. I explained my history and desire to be diagnosed, and that so many doctors have already dismissed me and my concerns about celiac.
This doctor just looked at me, told me to stop eating gluten for the rest of my life, and he’ll add to my medical notes that I’m celiac. So in a way, I’m not so formally diagnosed… but the doctor heard me and can see the difference from seeing me before I ate gluten and how I looked after. He didn’t do an antibody test on me! He re did blood tests for chemistry panels, vitamins, and cbc. Because he saw changes he decided that was proof enough 🤷‍♀️ 

From what you wrote, I can guess you’re aware that western medicine often fails us. It’s good for when you have an infection or emergency, but often fails when it comes to curing us of our illnesses. If I were you, I would consider yourself celiac and tell a doctor you have celiac disease so they add it to your chart. If they question how you were tested, you can say endoscopy or antibody blood testing. Of course, only do this if you’re comfortable. I know it’s not wise advice to lie to your doctor, but when you’re certain about your body and your needs, sometimes it is best to fib so they take you and your needs seriously. You know your body more than any one else!!
Otherwise you can eat gluten in the desire to be tested, but that can really make your health suffer and set back. 
Being celiac does require cleaning out your kitchen and ensuring you avoid any cross contamination at home, and out in restaurants or other homes. if you’re celiac, then you must adhere strictly to no gluten.
You can also keep a journal of your symptoms and experiences to share with a doctor. It might help you to receive better support and care from them regarding your concerns about gluten. If after months of being strictly gluten free in diet and use of products on your skin and you still are experiencing symptoms, then I would revisit a doctor. 
best of luck to you! 💕