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Just Diagnosed- Help

MacDaddy

By MacDaddy
in Doctors

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MacDaddy Newbie
MacDaddy
Posted

I am just recently and accidently been diagnosed with Celiac Disease. I went in for a routine Upper Endoscopy and to my fortune my GI was on top of things and pulled a few biopsys from my small bowel and also a a few from my stomach. The pathologist returned a positive finding for Celiac and was amazed that I had never been diagnosed previously due to symptoms.

I am also a co-commitant Grave's Disease patient, I was diagnosed at age 13 with Grave's and then because of un-responsivenes to medical intervention, subsequently had my entire thyroid removed at 18. I am 38 now, and for as long as I can remember I have lived with the variety of symptoms that are attributed to Celiac disease. I have never for 20 years been able to establish a stable thyroid dose and have been yo-yo'd by at least 12 Endocrinologists who have told me at a minimum that I am uncompliant, that I need to live with always being tired, and finally just three months ago at Mayo Clinic, been told that I am "addicted and dependent" to the high of my thyroid drugs, and that this is more an issue of diet, exercise and continuing psychological therapy". She said this to an ex-professional athlete who still works out twice a day, and is at most 10lbs overweight. I even had the gall to suggest and ask if there was any possibility of having another type of auto-immune disorder that could effect my absorption of my medication.

I see my diagnosis as a blessing, my daily life for as long as I can remember has sucked, and I have been made to feel by multiple medical professionals that this was just basically how I was going to have to live so I have coped. I am going to eagerly embrace my new gluten free life style, but I have some concerns:

1. What type of doctor do I need to see- I live in Phoenix, AZ - my GI is great but she is not even comfortable managing both disorders. Someone has suggested possibly a Rheumatologist?

2. How is my new gluten free life going to effect my absortion of the medications I am taking and how soon will I see an effect?

3. My current GI is also concerned with Hepatitis, and is running liver panels- is this common with us auto-immmune folks?

My primary question is whether there is one physician out there by training who treats auto-immune patients- or will I be forced to try and use multiple physicians? Honestly, I really would like to go back to the MAYO Clinic and just shake the endo there and say SEE I TOLD YOU, I AM NOT CRAZY!

I am fortunate that I can travel, I have family in Princeton, NJ which gives me access to NYC and Philadelphia, and being in Phoenix I have access to San Diego, and Los Angeles. To be honest, I will travel anywhere as long as I know that I am seeing a physician who is going to evaluate me holistically and take into consideration the trauma both mental and metabolically that has been rendered on my system by the multiple drug cocktails that I have seen in a 20 year period.

ANY and ALL information is welcomed. I know for the first time that I am not the only person who feels like this.

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Gemini Experienced
Gemini
Posted
I am just recently and accidently been diagnosed with Celiac Disease. I went in for a routine Upper Endoscopy and to my fortune my GI was on top of things and pulled a few biopsys from my small bowel and also a a few from my stomach. The pathologist returned a positive finding for Celiac and was amazed that I had never been diagnosed previously due to symptoms.

I am also a co-commitant Grave's Disease patient, I was diagnosed at age 13 with Grave's and then because of un-responsivenes to medical intervention, subsequently had my entire thyroid removed at 18. I am 38 now, and for as long as I can remember I have lived with the variety of symptoms that are attributed to Celiac disease. I have never for 20 years been able to establish a stable thyroid dose and have been yo-yo'd by at least 12 Endocrinologists who have told me at a minimum that I am uncompliant, that I need to live with always being tired, and finally just three months ago at Mayo Clinic, been told that I am "addicted and dependent" to the high of my thyroid drugs, and that this is more an issue of diet, exercise and continuing psychological therapy". She said this to an ex-professional athlete who still works out twice a day, and is at most 10lbs overweight. I even had the gall to suggest and ask if there was any possibility of having another type of auto-immune disorder that could effect my absorption of my medication.

I see my diagnosis as a blessing, my daily life for as long as I can remember has sucked, and I have been made to feel by multiple medical professionals that this was just basically how I was going to have to live so I have coped. I am going to eagerly embrace my new gluten free life style, but I have some concerns:

1. What type of doctor do I need to see- I live in Phoenix, AZ - my GI is great but she is not even comfortable managing both disorders. Someone has suggested possibly a Rheumatologist?

2. How is my new gluten free life going to effect my absortion of the medications I am taking and how soon will I see an effect?

3. My current GI is also concerned with Hepatitis, and is running liver panels- is this common with us auto-immmune folks?

My primary question is whether there is one physician out there by training who treats auto-immune patients- or will I be forced to try and use multiple physicians? Honestly, I really would like to go back to the MAYO Clinic and just shake the endo there and say SEE I TOLD YOU, I AM NOT CRAZY!

I am fortunate that I can travel, I have family in Princeton, NJ which gives me access to NYC and Philadelphia, and being in Phoenix I have access to San Diego, and Los Angeles. To be honest, I will travel anywhere as long as I know that I am seeing a physician who is going to evaluate me holistically and take into consideration the trauma both mental and metabolically that has been rendered on my system by the multiple drug cocktails that I have seen in a 20 year period.

ANY and ALL information is welcomed. I know for the first time that I am not the only person who feels like this.

This is when it totally sucks having doctors that miss the boat on diagnosing celiac disease early. The reason you were probably unresponsive to treatment before is because you were constantly sparking an autoimmune reaction from eating glutin, so that would make treatment and stabilization of your thyroid almost impossible. I have Hashimoto's thyroiditis from long, undiagnosed celiac disease and it did much damage. However, now that I have been gluten-free for 2 1/2 years, things are much better and under control.

It's important to see a doctor who understands how to correctly treat thyroid issues and understands autoimmune diseases. Gastroenterologists and many PCP's do not know enough once they diagnose you to continue dealing with other problems. I don't even see an endocrinologist myself for my thyroid because I haven't found one who does it right. I see an internist who practices integrated medicine and she has helped tremendously. I would even see an acupuncturist first to try and balance things out before using most mainstream medicine. When they don't get it right, they blame the patient.

Be patient with the gluten-free diet as it may take up to a year for you to heal and your body to calm down and repair itself. I noticed improved thyroid function and stability once I was well on my way with the diet. You may want to see someone who specializes in autoimmune problems because there are many to be had with celiac disease....I have 2 others besides the celiac disease and, quite honestly, figured them all out myself and requested testing. It's a total drag to go from doctor to doctor and get nowhere, I know.

Canadian Karen Community Regular
Canadian Karen
Posted

Welcome to the board MacDaddy!

I have always thought along the same lines as you - there needs to be a doctor who can treat the "whole" me, instead of seeing numerous doctors. It's like the right hand doesn't know what the left hand is doing, so to speak..... Oh well, we can dream, right? LOL!

I am glad you got your diagnosis finally! Now your life will improve by leaps and bounds!

If you have the means and you wanted to go to the best, the Dr. Peter Green is the doctor to go to. I know from reading on here he doesn't take medicare (I am Canadian so I don't know much about your American system, except the words Medicare and HMO's etc.) but he is by far the best of the best in your country.

Here is a link:

Open Original Shared Link

Feel free to ask any questions without any worries. Our motto is that there is no such thing as a silly question.....

Again, Welcome!

Karen

ENF Enthusiast
ENF
Posted
If you have the means and you wanted to go to the best, the Dr. Peter Green is the doctor to go to. I know from reading on here he doesn't take medicare (I am Canadian so I don't know much about your American system, except the words Medicare and HMO's etc.) but he is by far the best of the best in your country.

According to his "New York State Physician Profile", Dr. Green takes Medicaid and Medicare - but the website advises to check with the doctor's office to see if this information has changed. For the Profile, just key in his first and last name, and go to his "Practice Info".Open Original Shared Link

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