Financial strain of having multiple autoimmune diseases

Posted by mary1121 @mary1121, Aug 10, 2018

I have just been diagnosed with my 6th autoimmune disease. I am in a panic state. MS, Celiac,hypothyroidism, fibromyalgia and lupus. I want to get in with a functional doctor, but all of the ones that I have talked to cost between $10,000-15,000 upfront. I don’t know where to turn.

My GI specialist wants to do an endoscopy for celiac disease. However, since I went gluten free before being tested, will this work? I've been gluten free about 6 years. Will the villi be scarred due to years of no treatment? Or will the villi be recovered fully from being gluten free for several years? I know the villi recover eventually but I don't know if they are still damaged but functional.
I also have endometriosis and when no one was able to diagnose me, I went gluten free out of desperation. While it did not help with the severe pain (at first) it did help me gain some weight. The next year after going gluten free I was finally diagnosed and operated for endometriosis. I remained gluten free and now it is helping me. I don't know if the test would be worth it, if it showed the past effects of celiac, or if it would be negative? I still plan to remain gluten free as it has helped tremendously. But I would also like to know, as several relatives have had digestive issues and never tested.
I've also been told I have endometriosis on my bowels but don't know how much. Would an endoscopy show any endometriosis damage too?

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@airey2

My GI specialist wants to do an endoscopy for celiac disease. However, since I went gluten free before being tested, will this work? I've been gluten free about 6 years. Will the villi be scarred due to years of no treatment? Or will the villi be recovered fully from being gluten free for several years? I know the villi recover eventually but I don't know if they are still damaged but functional.
I also have endometriosis and when no one was able to diagnose me, I went gluten free out of desperation. While it did not help with the severe pain (at first) it did help me gain some weight. The next year after going gluten free I was finally diagnosed and operated for endometriosis. I remained gluten free and now it is helping me. I don't know if the test would be worth it, if it showed the past effects of celiac, or if it would be negative? I still plan to remain gluten free as it has helped tremendously. But I would also like to know, as several relatives have had digestive issues and never tested.
I've also been told I have endometriosis on my bowels but don't know how much. Would an endoscopy show any endometriosis damage too?

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Good morning @airey2 The gluten free diet changes the way blood work shows celiac disease but and endoscopy also includes a biopsy to look at cells in the stomach lining. You might ask the doctor about the extent of endometriosis. A different test may need to be done. Here is some information from Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225
When is your endoscopy?
Becky

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@mary1121 Sorry to hear that, mary1211. I have multiple genetic diseases, also. however, I have pretty good coverage from Medicare Plan F, UHS, AARP and Humana. However, even with that this is expensive, about $200-$300 dollars per month. I have Gelsolin Amyloidosis, Fukatin Limb Girdle Muscular Dystrophy, Dilated Cardiomyopathy, Cardiomegaly, cancers of nearly all my organs and tissues, multiple encephalopathies, Blepharoplasty, Purpura, Retinitis Pigmentosa, Platelet 4, Esophageal cancers and disorders (Barrett's, etc) Rheumatoid arthritis, psoriatic arthritis, Central and Obstructive sleep apnea, splenomegaly, cracking teeth, brittle nails, and on and on. But a few things I have done right. My doc put me on high dosage of Methotrexate (.80 ml) weekly injection. I take aspirin 81 every day. I Use a BiPAP. Nearly all my meds, including Novolin, are covered by my insurances. I have a general rule about this. If it ain't free or cheap, it ain't worth it. If I start an expensive med, then must quit, I expect death at any moment. So I don't start them if the expense is expensive. And I put a lot of time into learning about my genetic make up. I have genes that fight against psychotic meds; genes that fight against statins; genes that against several kinds of heart disease meds; genes that make me look fat, genes that make my head expand, genes that make Sections 9 and 24 of my brain disintegrate. I am now getting a Full Genome analysis, because the two partials I have had left too many questions. An in the middle of this my endocrinologist wanted to cut my novolin and methotrexate. Instead, I am changing endocrinologists. This is much less expensive than dying from loss of Novolin and Methotrexate. Selah.

REPLY
@airey2

My GI specialist wants to do an endoscopy for celiac disease. However, since I went gluten free before being tested, will this work? I've been gluten free about 6 years. Will the villi be scarred due to years of no treatment? Or will the villi be recovered fully from being gluten free for several years? I know the villi recover eventually but I don't know if they are still damaged but functional.
I also have endometriosis and when no one was able to diagnose me, I went gluten free out of desperation. While it did not help with the severe pain (at first) it did help me gain some weight. The next year after going gluten free I was finally diagnosed and operated for endometriosis. I remained gluten free and now it is helping me. I don't know if the test would be worth it, if it showed the past effects of celiac, or if it would be negative? I still plan to remain gluten free as it has helped tremendously. But I would also like to know, as several relatives have had digestive issues and never tested.
I've also been told I have endometriosis on my bowels but don't know how much. Would an endoscopy show any endometriosis damage too?

Jump to this post

If you have been gluten-free for years and have been able to gain weight, I don’t see a reason for an endoscopy and biopsy, unless your doctor is looking for something else.
Endometriosis is found on the intestines, not visible with endoscopy.
@becsbuddy shared a link from Mayo Clinic- there is a lot of important information that also could help your relatives with GI issues.

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@beryl

Hello all this is Beryl …..I was sitting here reading some of the posts and realized that it makes such a difference to see that there are lots of people in the same boat and worse…..I always felt a bit of a freak as people round you really don't know what the dickens is wrong with you …..I used to find myself floundering and making excuses for myself so it didn't feel so bad ……Now I don't Mayo Connect has given me confidence …..thank you guys for sharing and unfreaking me…..ha ha ……

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I know right! Everyone treats you like you're a hypochondriac! I wish they could walk a mile in my shoes! Good luck

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I was diagnosed in 1996 and there wasn't much out there on the internet. I started with Dr Weil's 8 weeks to optimum health and that advice helped me get to non-processed diet, low sugar, avoid potato/tomato, dairy and wheat in moderation. Basically, it involves "scanning" yourself to see how you feel the next day. Tests for food allergies are not that accurate. I borrow recipes from AIP and Terry Wahls. I knew I had to keep moving and for several years I just walked and did water exercise. However, I've found that a manual PT is great to help get stretches for hip/sciatica (piriformis), TMJ and general conditioning. Your PCP can refer you, but avoid the big PT centers as they do not have the osteopathic understanding. I was getting hip shots for years, but proper stretches help avoid that. Maintain hydration and electrolytes for fatigue, dry skin/eyes/mouth. If I am out of whack, I get a visit in to a chiropractor so I am not leaning one way or another. Other self care: ice/heat, lidocaine patches, splints, KT tape (directions online), epsom salt bath. Look into EFT tapping, breathing, THC/CBD for anxiety (we all have some of this). I avoid supplements for the most part, and that is what functional Drs espouse. My group of Drs: rheumatologist, gastroenterologist, orthopedic, PCP ( a DO would be close to a functional dr), ophthalmologist, neurologist. I send all test results to them all. There are also integrative therapies you can try: massage (for fibromyalgia part), acupuncture, Reiki, Tai Chi and so on. It is kind of a do it yourself thing, but has worked out for me.

REPLY
@oldkarl

@mary1121 Sorry to hear that, mary1211. I have multiple genetic diseases, also. however, I have pretty good coverage from Medicare Plan F, UHS, AARP and Humana. However, even with that this is expensive, about $200-$300 dollars per month. I have Gelsolin Amyloidosis, Fukatin Limb Girdle Muscular Dystrophy, Dilated Cardiomyopathy, Cardiomegaly, cancers of nearly all my organs and tissues, multiple encephalopathies, Blepharoplasty, Purpura, Retinitis Pigmentosa, Platelet 4, Esophageal cancers and disorders (Barrett's, etc) Rheumatoid arthritis, psoriatic arthritis, Central and Obstructive sleep apnea, splenomegaly, cracking teeth, brittle nails, and on and on. But a few things I have done right. My doc put me on high dosage of Methotrexate (.80 ml) weekly injection. I take aspirin 81 every day. I Use a BiPAP. Nearly all my meds, including Novolin, are covered by my insurances. I have a general rule about this. If it ain't free or cheap, it ain't worth it. If I start an expensive med, then must quit, I expect death at any moment. So I don't start them if the expense is expensive. And I put a lot of time into learning about my genetic make up. I have genes that fight against psychotic meds; genes that fight against statins; genes that against several kinds of heart disease meds; genes that make me look fat, genes that make my head expand, genes that make Sections 9 and 24 of my brain disintegrate. I am now getting a Full Genome analysis, because the two partials I have had left too many questions. An in the middle of this my endocrinologist wanted to cut my novolin and methotrexate. Instead, I am changing endocrinologists. This is much less expensive than dying from loss of Novolin and Methotrexate. Selah.

Jump to this post

I also found Methatrexate helped. My teeth were cracking, and apparently Sjogrens' dry mouth is the culprit. I have a mouthguard. Brush 2x daily plus use a waterpik to keep gums in shape. Biotene to avoid dry mouth. Hair/skin/nails gummies help, but cream moisturizer is good too.

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@astaingegerdm

If you have been gluten-free for years and have been able to gain weight, I don’t see a reason for an endoscopy and biopsy, unless your doctor is looking for something else.
Endometriosis is found on the intestines, not visible with endoscopy.
@becsbuddy shared a link from Mayo Clinic- there is a lot of important information that also could help your relatives with GI issues.

Jump to this post

I recommend following the "GERD TRIGGERS" entry on Webmd to help with gastric issues. Celiac affects lower digestive system, and if it is annoyed, they will see it and be able to prescribe help for you after endoscopy. It is not that invasive and is a good baseline for the future, if nothing else. You should definitely get the endometriosis treated as well — apparently it can be taken care of in the same endoscopy procedure (check with Dr on this) Here's info: https://pubmed.ncbi.nlm.nih.gov/7882623/

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@marye2

I recommend following the "GERD TRIGGERS" entry on Webmd to help with gastric issues. Celiac affects lower digestive system, and if it is annoyed, they will see it and be able to prescribe help for you after endoscopy. It is not that invasive and is a good baseline for the future, if nothing else. You should definitely get the endometriosis treated as well — apparently it can be taken care of in the same endoscopy procedure (check with Dr on this) Here's info: https://pubmed.ncbi.nlm.nih.gov/7882623/

Jump to this post

Celiac affects the small intestine, where nutrients are absorbed. It is very possible that the GI doctor wants a baseline endoscopy- also being aware that she has been gluten free.
The article about endometriosis is confusing, since the title mentions endoscopy, but then discusses the advantages of laparoscopy compared to the old standard laparotomy. Anyway, there seems to be encouraging ways of treating endometriosis.

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@mary1121 Hi, there. I found, by looking around http://www.omim.org/entry/crackingteeth, or whatever, that the genes and phenotypes for such as this are easy to decipher. Cracking Teeth, for instance, is a part of the GSN package. But you are correct, Biotene works very well. Also, http://hpo.jax.org has a terrific set of phenotypes for almost everything. Jackson Labs is very helpful.

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