Getting diagnosis

[Sirenna]

Hi everyone. I’ve been trying to get a doctor to take my symptoms seriously and help me receive a diagnosis for 10 years. I was diagnosed with fibromyalgia in 2015 because they couldn’t explain my symptoms with blood tests. In 2017 I decided to go gluten free after doing some research and my symptoms immediately improved. Because my blood tests came back negative for the antibodies and gliadin I assumed I was fine and started eating gluten again. I did not know at that time I had to be eating gluten for accurate results. Since then I’ve developed a diverticulum on my esophagus, a hiatal hernia, fluctuating blood pressure, heart palpitations, acid reflux, diarrhea, bloating, feeling full quickly, choking at night, breathing problems, and many other symptoms. So I went off gluten again last year after having endoscopy and discovering the diverticulum. I don’t think the surgeon biopsied my duodenum but only referred me to surgeon for diverticulum. I recently did genetic testing and I am positive for one of the main celiac genes. How do I get a doctor to take me seriously and stop attributing all of my symptoms to fibromyalgia? I also have history of low vitamin levels, muscle and joint pain, brain fog and anemia.  I believe that because I am African American and celiac is not considered prevalent in that community, many doctors overlook it. Thanks for any feedback! I’m so frustrated and I’m hoping most of my symptoms are reversible. 

[Darren]

Get a new doctor, and specifically ask for the celiac blood panel while on a diet that includes gluten. Or just ditch your doctor and find a lab that will run the panel for you. They cannot deny your request for the bloodwork since you will pay for it. I think it might be as simple as that. Hang in there...

[trents]

Sirenna, have you explicitly asked your doctor to run tests for celiac disease? Explain to the doctor that the first antibody blood testing was done while you were eating gluten free and that this may have caused the negative results. I would ask for a repeat after you have been on the equivalent of two slices of wheat bread daily for 6-8 weeks. That is the official recommendation.

Also, you may have NCGS (Non Celiac Gluten Sensitivity). celiac disease and NCGS share many of the same symptoms and the antidote is the same, abstaining from gluten for life. There are no tests for NCGS so celiac disease must first be ruled out.

The celiac community has discovered through experience that the medical community at large is pretty ignorant about celiac disease and NCGS. We find we have to go to appointments armed with current information and with the mindset of being politely assertive.

[knitty kitty]

Welcome to the forum, @Sirenna!

Yes, sometimes getting a diagnosis can be frustrating and time consuming.  Seems most doctors have outdated concepts of Celiac Disease. 

If you Google "African Americans with Celiac Disease nih", results show several studies from the National Institute of Health.  

Like this one....

Celiac Disease and the Forgotten 10%: The “Silent Minority”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4456229/

There are rare, more enlightened doctors who will make a diagnosis of Celiac Disease with a positive genetic test and a noticeable health improvement on a gluten free diet.  

Anemia can be a symptom of Celiac Disease. 

Prevalence of Celiac Disease in Patients with Iron Deficiency Anemia – a Systematic Review with Meta-analysis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7057414/

"Conclusion...This prevalence value justifies the practice of testing patients with IDA for celiac disease."

And...

Iron deficiency anemia in celiac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4541375/

"Iron deficiency anemia in children and adults may also be the presenting clinical feature of celiac disease, and may be the only finding present[3-5]. Unfortunately, this interesting relationship between iron deficiency anemia and celiac disease has been poorly appreciated, even among subspecialty physicians, including practicing hematologists[6]."

Do get checked for other vitamin and mineral deficiencies.  A B Complex vitamin supplement would be beneficial.  Discuss this with your doctor.  The B vitamins are usually absorbed in the small intestine where Celiac Disease causes damaged tissues.  Taking extra Thiamine, Vitamin B1, can help with some of your symptoms (sleep apnea, blood pressure fluctuations, heart palpitations, etc.)  

Hope this helps!

 

[Wheatwacked]

  On 4/10/2022 at 12:10 AM, Sirenna said:

How do I get a doctor to take me seriously and stop attributing all of my symptoms to fibromyalgia?

Expand Quote  

Here's the cool thing. If you stay gluten free, replenish the vitamins and minerals that you are deficient in, and decrease the omega 6 in your diet, your fibromyalgia will magically be gone, and you won't need to convince the doctor of anything. Of course, you still need to monitor the damage already done while you heal. Let the doctor get sicker on his SAD diet while you get healthier.

A good multivitamin like Geritol Multivitamin that has more than 100% of most of the essential daily vitamins will quickly have you feeling better, on top of choosing foods that don't come in a box or bag.

Grass fed milk and meats have a better balance of omega 6 to omega 3. The function of omega 6 is to create inflammation and clotting while omega 3 is healing and repair. There is lots of advertising about how we need wheat because of the nutrients, but those nutrients are synthetic and added to refined wheat flour.

The Iceland Eskimos did not have diabetes until they started eating a western diet in the 1950's. In Saudi Arabia obesity has become a problem as more people choose the western diet. Same with the Aborigines in Australia. 

The “Grass-Fed” Milk Story

Then there are the babies from the Biafran Famine when they switched from rice flour to wheat flour.

Edited April 10, 2022 by Wheatwacked

[Sirenna]

  On 4/10/2022 at 3:50 AM, Darren said:

Get a new doctor, and specifically ask for the celiac blood panel while on a diet that includes gluten. Or just ditch your doctor and find a lab that will run the panel for you. They cannot deny your request for the bloodwork since you will pay for it. I think it might be as simple as that. Hang in there...

Expand Quote  

I have been trying to find a new doctor but it’s so hard after COVID. I fortunately have been referred to new gastroenterologist and will see him soon. Sadly I feel horrible when I eat even small traces of gluten and cannot go back on that diet. That’s why I did the genetic testing. Thank you so much for your response! 

[Sirenna]

  On 4/10/2022 at 4:56 AM, Wheatwacked said:

Here's the cool thing. If you stay gluten free, replenish the vitamins and minerals that you are deficient in, and decrease the omega 6 in your diet, your fibromyalgia will magically be gone, and you won't need to convince the doctor of anything. Of course, you still need to monitor the damage already done while you heal. Let the doctor get sicker on his SAD diet while you get healthier.

A good multivitamin like Geritol Multivitamin that has more than 100% of most of the essential daily vitamins will quickly have you feeling better, on top of choosing foods that don't come in a box or bag.

Grass fed milk and meats have a better balance of omega 6 to omega 3. The function of omega 6 is to create inflammation and clotting while omega 3 is healing and repair. There is lots of advertising about how we need wheat because of the nutrients, but those nutrients are synthetic and added to refined wheat flour.

The Iceland Eskimos did not have diabetes until they started eating a western diet in the 1950's. In Saudi Arabia obesity has become a problem as more people choose the western diet. Same with the Aborigines in Australia. 

The “Grass-Fed” Milk Story

Then there are the babies from the Biafran Famine when they switched from rice flour to wheat flour.

Expand Quote  

Thank you! This is good information! I want the diagnosis so my doctors will take me seriously and monitor my symptoms. Since I received the fibromyalgia diagnosis no one listens to me and doctors keep telling me I’m just anxious. I got so frustrated I stopped going. 

[Sirenna]

  On 4/10/2022 at 3:53 AM, knitty kitty said:

Welcome to the forum, @Sirenna!

Yes, sometimes getting a diagnosis can be frustrating and time consuming.  Seems most doctors have outdated concepts of Celiac Disease. 

If you Google "African Americans with Celiac Disease nih", results show several studies from the National Institute of Health.  

Like this one....

Celiac Disease and the Forgotten 10%: The “Silent Minority”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4456229/

There are rare, more enlightened doctors who will make a diagnosis of Celiac Disease with a positive genetic test and a noticeable health improvement on a gluten free diet.  

Anemia can be a symptom of Celiac Disease. 

Prevalence of Celiac Disease in Patients with Iron Deficiency Anemia – a Systematic Review with Meta-analysis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7057414/

"Conclusion...This prevalence value justifies the practice of testing patients with IDA for celiac disease."

And...

Iron deficiency anemia in celiac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4541375/

"Iron deficiency anemia in children and adults may also be the presenting clinical feature of celiac disease, and may be the only finding present[3-5]. Unfortunately, this interesting relationship between iron deficiency anemia and celiac disease has been poorly appreciated, even among subspecialty physicians, including practicing hematologists[6]."

Do get checked for other vitamin and mineral deficiencies.  A B Complex vitamin supplement would be beneficial.  Discuss this with your doctor.  The B vitamins are usually absorbed in the small intestine where Celiac Disease causes damaged tissues.  Taking extra Thiamine, Vitamin B1, can help with some of your symptoms (sleep apnea, blood pressure fluctuations, heart palpitations, etc.)  

Hope this helps!

 

Expand Quote  

Yes! This is very helpful! I’ve researched the link to iron deficiency anemia but haven’t yet researched African Americans with celiac disease so this is very useful information! Thank you so much for responding! I am happy to hear from people who understand and won’t brush me off. 

[Sirenna]

  On 4/10/2022 at 3:51 AM, trents said:

Sirenna, have you explicitly asked your doctor to run tests for celiac disease? Explain to the doctor that the first antibody blood testing was done while you were eating gluten free and that this may have caused the negative results. I would ask for a repeat after you have been on the equivalent of two slices of wheat bread daily for 6-8 weeks. That is the official recommendation.

Also, you may have NCGS (Non Celiac Gluten Sensitivity). celiac disease and NCGS share many of the same symptoms and the antidote is the same, abstaining from gluten for life. There are no tests for NCGS so celiac disease must first be ruled out.

The celiac community has discovered through experience that the medical community at large is pretty ignorant about celiac disease and NCGS. We find we have to go to appointments armed with current information and with the mindset of being politely assertive.

Expand Quote  

 

  On 4/10/2022 at 3:50 AM, Darren said:

Get a new doctor, and specifically ask for the celiac blood panel while on a diet that includes gluten. Or just ditch your doctor and find a lab that will run the panel for you. They cannot deny your request for the bloodwork since you will pay for it. I think it might be as simple as that. Hang in there...

Expand Quote  

 

  On 4/10/2022 at 3:51 AM, trents said:

Sirenna, have you explicitly asked your doctor to run tests for celiac disease? Explain to the doctor that the first antibody blood testing was done while you were eating gluten free and that this may have caused the negative results. I would ask for a repeat after you have been on the equivalent of two slices of wheat bread daily for 6-8 weeks. That is the official recommendation.

Also, you may have NCGS (Non Celiac Gluten Sensitivity). celiac disease and NCGS share many of the same symptoms and the antidote is the same, abstaining from gluten for life. There are no tests for NCGS so celiac disease must first be ruled out.

The celiac community has discovered through experience that the medical community at large is pretty ignorant about celiac disease and NCGS. We find we have to go to appointments armed with current information and with the mindset of being politely assertive.

Expand Quote  

I suspected I had NCGS because I did have celiac panel done and it was all negative. My doctor then knew I was gluten-free at the time but didn’t say I needed to be eating it to be tested. I was never retested after that. I’ll get too sick if I start again. I’m curious to know if the diverticulum on my esophagus and hiatal hernia were caused by celiac disease. I’m hoping new gastroenterologist has knowledge on that. It’s apparently a very rare disorder. Thanks for your response! Much appreciated

[trents]

  On 4/10/2022 at 12:10 PM, Sirenna said:

 

 

I suspected I had NCGS because I did have celiac panel done and it was all negative. My doctor then knew I was gluten-free at the time but didn’t say I needed to be eating it to be tested. I was never retested after that. I’ll get too sick if I start again. I’m curious to know if the diverticulum on my esophagus and hiatal hernia were caused by celiac disease. I’m hoping new gastroenterologist has knowledge on that. It’s apparently a very rare disorder. Thanks for your response! Much appreciated

Expand Quote  

A classic example of the general ignorance in the medical community about celiac disease and testing for it. We here this same story over an over on this forum.

Edited April 11, 2022 by trents

[knitty kitty]

  On 4/10/2022 at 12:10 PM, Sirenna said:

 

 

I suspected I had NCGS because I did have celiac panel done and it was all negative. My doctor then knew I was gluten-free at the time but didn’t say I needed to be eating it to be tested. I was never retested after that. I’ll get too sick if I start again. I’m curious to know if the diverticulum on my esophagus and hiatal hernia were caused by celiac disease. I’m hoping new gastroenterologist has knowledge on that. It’s apparently a very rare disorder. Thanks for your response! Much appreciated

Expand Quote  

Sirenna,

Yes, they can all be related to Celiac Disease.  

 

Reflux oesophagitis in adult coeliac disease: beneficial effect of a gluten free diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773586/

(Includes information on hiatal hernias)

And...

An Update on Eosinophilic Esophagitis: Etiological Factors, Coexisting Diseases, and Complications

https://www.karger.com/Article/FullText/508191#top

(Interesting section on Celiac Disease...Eosinophilic Esophagitis occurs in Celiac Disease as part of the immune response and precedes diverticulum formation)

And...

Esophageal manifestations of celiac disease

https://pubmed.ncbi.nlm.nih.gov/21438963/

And...

Eosinophilic Esophagitis May Be a Sugar Sensitive Disease

http://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/

(Indicative of Vitamin B1 Thiamine deficiency)

And...

Plummer-Vinson syndrome: improving outcomes with a multidisciplinary approach

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6593774/

(Iron deficiency anemia involved)

And...

Higher serum levels of vitamin D are associated with a reduced risk of diverticulitis

https://pubmed.ncbi.nlm.nih.gov/23954650/

Do get checked for iron deficiency anemia, B12 and Vitamin D deficiencies.  Discuss with your doctor the benefits of supplementing with a B Complex supplement while you are recovering.    Celiac Disease causes malabsorption which results in malnutrition.  Correcting vitamin and mineral deficiencies is essential to healing and recovery.

Can't resist a rabbit hole...

[Sirenna]

  On 4/11/2022 at 9:32 AM, knitty kitty said:

Sirenna,

Yes, they can all be related to Celiac Disease.  

 

Reflux oesophagitis in adult coeliac disease: beneficial effect of a gluten free diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773586/

(Includes information on hiatal hernias)

And...

An Update on Eosinophilic Esophagitis: Etiological Factors, Coexisting Diseases, and Complications

https://www.karger.com/Article/FullText/508191#top

(Interesting section on Celiac Disease...Eosinophilic Esophagitis occurs in Celiac Disease as part of the immune response and precedes diverticulum formation)

And...

Esophageal manifestations of celiac disease

https://pubmed.ncbi.nlm.nih.gov/21438963/

And...

Eosinophilic Esophagitis May Be a Sugar Sensitive Disease

http://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/

(Indicative of Vitamin B1 Thiamine deficiency)

And...

Plummer-Vinson syndrome: improving outcomes with a multidisciplinary approach

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6593774/

(Iron deficiency anemia involved)

And...

Higher serum levels of vitamin D are associated with a reduced risk of diverticulitis

https://pubmed.ncbi.nlm.nih.gov/23954650/

Do get checked for iron deficiency anemia, B12 and Vitamin D deficiencies.  Discuss with your doctor the benefits of supplementing with a B Complex supplement while you are recovering.    Celiac Disease causes malabsorption which results in malnutrition.  Correcting vitamin and mineral deficiencies is essential to healing and recovery.

Can't resist a rabbit hole...

Expand Quote  

Thanks! I can also research this stuff for hours lol. 

[Jays911]

  On 4/10/2022 at 12:10 AM, Sirenna said:

Hi everyone. I’ve been trying to get a doctor to take my symptoms seriously and help me receive a diagnosis for 10 years. I was diagnosed with fibromyalgia in 2015 because they couldn’t explain my symptoms with blood tests. In 2017 I decided to go gluten free after doing some research and my symptoms immediately improved. Because my blood tests came back negative for the antibodies and gliadin I assumed I was fine and started eating gluten again. I did not know at that time I had to be eating gluten for accurate results. Since then I’ve developed a diverticulum on my esophagus, a hiatal hernia, fluctuating blood pressure, heart palpitations, acid reflux, diarrhea, bloating, feeling full quickly, choking at night, breathing problems, and many other symptoms. So I went off gluten again last year after having endoscopy and discovering the diverticulum. I don’t think the surgeon biopsied my duodenum but only referred me to surgeon for diverticulum. I recently did genetic testing and I am positive for one of the main celiac genes. How do I get a doctor to take me seriously and stop attributing all of my symptoms to fibromyalgia? I also have history of low vitamin levels, muscle and joint pain, brain fog and anemia.  I believe that because I am African American and celiac is not considered prevalent in that community, many doctors overlook it. Thanks for any feedback! I’m so frustrated and I’m hoping most of my symptoms are reversible. 

Expand Quote  

Sounds like celiac (at minimum) to me. Have you had an endoscopy?  If not, get one. Blessings. 

[Sirenna]

  On 4/17/2022 at 2:23 AM, Jays911 said:

Sounds like celiac (at minimum) to me. Have you had an endoscopy?  If not, get one. Blessings. 

Expand Quote  

I did get one last year. Turns out the surgeon did not test for it. No biopsies. He saw a diverticula in my lower esophagus and stopped there unfortunately. 

[GF-Cate]

@Sirenna

Like you, I faced a lot of roadblocks from traditional Western medicine doctors. I was misdiagnosed for years and test results were misinterpreted.

Your best bet for finding a supportive doctor who is willing to provide a diagnosis may be at a Celiac research center. There are many throughout the country, primarily in the larger cities. Even if you are not close by, it may be worth traveling to book an appointment with them to get an accurate diagnosis. Some do virtual visits and offer second opinion visits online (such as University of Chicago), so that's an option as well. These are a few in different parts of the country:

Celiac Disease Center at Columbia University
https://celiacdiseasecenter.columbia.edu/

University of Chicago Celiac Disease Center
https://www.uchicagomedicine.org/conditions-services/gastroenterology/celiac-disease

Stanford Celiac Disease Program
https://stanfordhealthcare.org/medical-clinics/celiac-disease-program.html

I will say from my own personal experience, the doctor who I was eventually "diagnosed by" (in quotes because I already knew my diagnosis from running my own blood work and doing my own leg work - but like you wanted it on the record officially) is one of the leading, if not top Celiac researchers in the world, and very sadly, even his nursing staff was woefully uninformed about certain aspects of celiac disease (i.e. nurse laughed at me when I told her I had replaced grill grates and told me I didn't have to do that (!!!) - even though we had been regularly using it for grilling meats with gluten-containing marinades & buns). The doctor also brushed off my concerns about the connection between celiac disease and my other autoimmune diseases. 

Most doctors do not understand (at least not to the full extent) the umbrella of autoimmune diseases and how they are interconnected because our medical system is so compartmentalized -- we see endocrinologists for thyroid disease, rheumatologists for rheumatoid arthritis, gastroenterologists for celiac disease and the list goes on. If you are comfortable working with a functional medicine doctor (either as part of your medical team or as your primary doctor), they treat the whole person and work to find the root cause versus treating/medicating the symptoms or masking the symptoms and never getting to the source. You can find a certified functional medicine doctor at the Institute for Functional Medicine's website: https://www.ifm.org/find-a-practitioner/

There are also lots of resources online (including this forum) from people who think outside of the box and outside the confines of Western medicine. They understand the importance of replenishing vitamin and mineral levels as well as a quality diet and using food as medicine, mind/body/stress, avoiding/reducing toxins both in diet/water/air and in products we use and are exposed to and the connection between all of these things (and more) to autoimmune diseases.

I do not rely on a doctor to test my blood for nutrient levels. My personal strategy over the years has been to use the ranges that many functional medicine doctors provide online when I run my nutrient blood levels (these are targeted for optimal levels) vs. "in range" (which are often determined by averages from people who are not healthy). I had many deficiencies from years of GI distress. It is easy to order these tests yourself at a lab online lab (such as Ulta Lab Tests).

You truly do have to be your own advocate and researcher in the medical environment today. My decision was that it was less stressful, less time consuming, less costly and less of a headache for me to try to manage my own care versus running around to appointment after appointment after appointment to doctors who truly don't understand (or care to acknowledge) the connection between autoimmune diseases (I have more than one), who have little to no education about the nutritional aspects of health and disease, and who were simply looking to medicate me vs. getting to the root cause and working to heal my conditions and/or put them into remission.

At first I was so debilitated by symptoms and reactions that it was very difficult for me to do this (if you feel the same way, just try to tackle one or two changes at a time), but as I have healed over the years (5+) it's become easier and I would say at this point my energy levels and health are at a really good place - still working on some things, but probably 80% better.

Like you I had already been eating gluten-free by the time I realized that eating gluten was necessary to have accurate celiac blood work done, so I had to work backwards, as it would have made me violently ill to reintroduce gluten.

You may find that you need to go grain-free above and beyond just gluten-free during the healing phases or even long-term (and/or dairy-free, or off other inflammatory foods, such as sugar, or potential allergens). The AIP (autoimmune paleo protocol) is one healing eating plan as is the Wahls Protocol (Dr. Terry Wahls), and (less so) Whole 30 (but a great start as an elimination diet with lots of supportive resources & recipes online).

The work and information from functional medicine doctors and other practitioners has been vital to my healing and understanding the root causes to autoimmune disease. Dr. Mark Hyman (my #1), Isabella Wentz (she focuses on autoimmune thyroid disease, but her work is absolutely applicable across the board for anyone with an autoimmune disease), Dr. Autoimmune Girl (Donna Mazzola) and Phoenix Helix (Eileen Laird) are a few of my favorites. They have so many free resources - check them out on Instagram and also their websites/blog posts and podcasts (so great when you don't have the time/energy to sit and read through everything). They, along with others, have truly helped me regain my health. Their work has impacted my life significantly.

Even with the help of online resources and forums like these, it can be a long, lonely road to healing but I believe it can be done. So many in your life will not truly understand and you just have to keep advocating for yourself and maintain your own protective bubble for your health.

This has become a very lengthy post because I truly relate to your experiences. Perhaps some of this will be helpful to you and others finding themselves in a position where they really need to take the reins of their own medical care.

Wishing you health and healing!

[Sirenna]

  On 4/17/2022 at 10:46 PM, GF_Cate said:

@Sirenna

Like you, I faced a lot of roadblocks from traditional Western medicine doctors. I was misdiagnosed for years and test results were misinterpreted.

Your best bet for finding a supportive doctor who is willing to provide a diagnosis may be at a Celiac research center. There are many throughout the country, primarily in the larger cities. Even if you are not close by, it may be worth traveling to book an appointment with them to get an accurate diagnosis. Some do virtual visits and offer second opinion visits online (such as University of Chicago), so that's an option as well. These are a few in different parts of the country:

Celiac Disease Center at Columbia University
https://celiacdiseasecenter.columbia.edu/

University of Chicago Celiac Disease Center
https://www.uchicagomedicine.org/conditions-services/gastroenterology/celiac-disease

Stanford Celiac Disease Program
https://stanfordhealthcare.org/medical-clinics/celiac-disease-program.html

I will say from my own personal experience, the doctor who I was eventually "diagnosed by" (in quotes because I already knew my diagnosis from running my own blood work and doing my own leg work - but like you wanted it on the record officially) is one of the leading, if not top Celiac researchers in the world, and very sadly, even his nursing staff was woefully uninformed about certain aspects of celiac disease (i.e. nurse laughed at me when I told her I had replaced grill grates and told me I didn't have to do that (!!!) - even though we had been regularly using it for grilling meats with gluten-containing marinades & buns). The doctor also brushed off my concerns about the connection between celiac disease and my other autoimmune diseases. 

Most doctors do not understand (at least not to the full extent) the umbrella of autoimmune diseases and how they are interconnected because our medical system is so compartmentalized -- we see endocrinologists for thyroid disease, rheumatologists for rheumatoid arthritis, gastroenterologists for celiac disease and the list goes on. If you are comfortable working with a functional medicine doctor (either as part of your medical team or as your primary doctor), they treat the whole person and work to find the root cause versus treating/medicating the symptoms or masking the symptoms and never getting to the source. You can find a certified functional medicine doctor at the Institute for Functional Medicine's website: https://www.ifm.org/find-a-practitioner/

There are also lots of resources online (including this forum) from people who think outside of the box and outside the confines of Western medicine. They understand the importance of replenishing vitamin and mineral levels as well as a quality diet and using food as medicine, mind/body/stress, avoiding/reducing toxins both in diet/water/air and in products we use and are exposed to and the connection between all of these things (and more) to autoimmune diseases.

I do not rely on a doctor to test my blood for nutrient levels. My personal strategy over the years has been to use the ranges that many functional medicine doctors provide online when I run my nutrient blood levels (these are targeted for optimal levels) vs. "in range" (which are often determined by averages from people who are not healthy). I had many deficiencies from years of GI distress. It is easy to order these tests yourself at a lab online lab (such as Ulta Lab Tests).

You truly do have to be your own advocate and researcher in the medical environment today. My decision was that it was less stressful, less time consuming, less costly and less of a headache for me to try to manage my own care versus running around to appointment after appointment after appointment to doctors who truly don't understand (or care to acknowledge) the connection between autoimmune diseases (I have more than one), who have little to no education about the nutritional aspects of health and disease, and who were simply looking to medicate me vs. getting to the root cause and working to heal my conditions and/or put them into remission.

At first I was so debilitated by symptoms and reactions that it was very difficult for me to do this (if you feel the same way, just try to tackle one or two changes at a time), but as I have healed over the years (5+) it's become easier and I would say at this point my energy levels and health are at a really good place - still working on some things, but probably 80% better.

Like you I had already been eating gluten-free by the time I realized that eating gluten was necessary to have accurate celiac blood work done, so I had to work backwards, as it would have made me violently ill to reintroduce gluten.

You may find that you need to go grain-free above and beyond just gluten-free during the healing phases or even long-term (and/or dairy-free, or off other inflammatory foods, such as sugar, or potential allergens). The AIP (autoimmune paleo protocol) is one healing eating plan as is the Wahls Protocol (Dr. Terry Wahls), and (less so) Whole 30 (but a great start as an elimination diet with lots of supportive resources & recipes online).

The work and information from functional medicine doctors and other practitioners has been vital to my healing and understanding the root causes to autoimmune disease. Dr. Mark Hyman (my #1), Isabella Wentz (she focuses on autoimmune thyroid disease, but her work is absolutely applicable across the board for anyone with an autoimmune disease), Dr. Autoimmune Girl (Donna Mazzola) and Phoenix Helix (Eileen Laird) are a few of my favorites. They have so many free resources - check them out on Instagram and also their websites/blog posts and podcasts (so great when you don't have the time/energy to sit and read through everything). They, along with others, have truly helped me regain my health. Their work has impacted my life significantly.

Even with the help of online resources and forums like these, it can be a long, lonely road to healing but I believe it can be done. So many in your life will not truly understand and you just have to keep advocating for yourself and maintain your own protective bubble for your health.

This has become a very lengthy post because I truly relate to your experiences. Perhaps some of this will be helpful to you and others finding themselves in a position where they really need to take the reins of their own medical care.

Wishing you health and healing!

Expand Quote  

Thank you so much for your response! I do see several doctors, none of which take my concerns seriously. Today I finally see a gastrointerologist. Hopefully he listens and orders the right tests. I was referred to Dr Hyman a couple years ago but the appointment was canceled due to insurance I had at that time. I was really looking forward to seeing him.

[Wheatwacked]

If you have South Florida PBS, Dr Hyman has an annual special that they broadcast as part of the membership drive. As does Drs. Fuhrman and Amen and Davis.

[lilyvance21]

  On 4/21/2022 at 2:14 PM, Wheatwacked said:

If you have South Florida PBS, Dr Hyman has an annual special that they broadcast as part of the membership drive. As does Drs. Fuhrman and Amen and Davis.

Expand Quote  

agreed