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Is There A Type Of Dr That Specializes In Autoimmune Diseases?

SaraKat

By SaraKat
in Related Issues & Disorders

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SaraKat Contributor
SaraKat
Posted

I was dx'd with Celiac in August, but back in April I went to my dermatologist for my annual body scan and she found a cluster of little bumps behind my left knee and she wanted to biopsy them. She did and they came back as something called "eruptive syringomas" she told me back then that they are sometimes autoimmune related, but she didn't want to scare me and in my case they probably weren't.

Well, now I randomly get this celiac dx and I wonder if it is related. What type of Dr should I go to to investigate further?

She told me that the eruptive syringomas are not very common and she had to request info from the pathologist on what they really even were. So, obviously my derm is not where I need to go.

Any suggestions? I am scared about what other AI disease I could have. My Dad has MS- do you know if there is anyway to test for that aside from the spinal tap?

I know my rheumatologist ordered a bunch of AI tests, but is there a MS blood test?

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Skylark Collaborator
Skylark
Posted

My mom found a rheumatologist to be the most knowledgable about autoimmune diseases. Celiac is autoimmune and the kinds of immune cells that show up in the eruptive syringomas look to be similar to the ones in the celiac intestine. I wonder whether it's just related to the celiac?

This is the reference I found but it's kind of technical.

Open Original Shared Link

SaraKat Contributor
SaraKat
Posted
  • Author

Thx for your response. Yeah, that is very technical- so are you saying that CD4+ and CD8+ T cells are the same cells that are in the celiac intestine? That is very weird! I wonder if a Rheumatologist would know of this connection.

It just seems that these syringomas are so rare and I found an article saying that the first case of eruptive syringomas was reported in 1987, that is so recent. I doubt a lot of Dr's would have insight to this since it seems so abnormal/rare.

It does seem coincidental though. I have my follow up appt to go over the endo biopsy Friday with the GI Dr, so I will ask him, but I doubt he will know :(

I've just had so many weird symptoms this year, I am wondering if they are all connected somehow. My other weird symptom was 2 enlarged left axillary lymph nodes that no one could figure out. They were painful too. They were enlarged for about 6 mos, but on my last ultrasound they were back to normal size. It was scary, I was referred to an oncologist for fear of lymphoma.

Thanks!

  • 2 weeks later...
mslee Apprentice
mslee
Posted

Thx for your response. Yeah, that is very technical- so are you saying that CD4+ and CD8+ T cells are the same cells that are in the celiac intestine? That is very weird! I wonder if a Rheumatologist would know of this connection.

It just seems that these syringomas are so rare and I found an article saying that the first case of eruptive syringomas was reported in 1987, that is so recent. I doubt a lot of Dr's would have insight to this since it seems so abnormal/rare.

It does seem coincidental though. I have my follow up appt to go over the endo biopsy Friday with the GI Dr, so I will ask him, but I doubt he will know :(

I've just had so many weird symptoms this year, I am wondering if they are all connected somehow. My other weird symptom was 2 enlarged left axillary lymph nodes that no one could figure out. They were painful too. They were enlarged for about 6 mos, but on my last ultrasound they were back to normal size. It was scary, I was referred to an oncologist for fear of lymphoma.

Thanks!

Well after 30 years of symptoms & 16 years of countless Doctors & labs I can tell you pin pointing which autoimmune condition you are dealing with is no easy task. About 9 years ago they dxed me with SLE Lupus, gave me treatments that didn't work for me...I just kept getting sicker & sicker. 2 Years ago they found celiac & I can't get a straight answer if I have both or just celiac....some Drs say yes both, some say untreated celiac caused lupus, now they say they doubt it's lupus. Anyways with autoimmune conditions if you have one you are likely to have others. Some scarier than others. I do have hashimoto's, celiac, arthritis, allergies, asthma, colitis, are other autoimmune conditions that run in my family... that's another thing they do run in families. For many autoimmune conditions the treatment is the same regardless of the name they put on the condition...they are all some form of your immune system attacking your own body.

I think spinal tap is needed to dx MS but they can run MRI's & nerve tests to see if they find any abnormalities. Those tests are less invasive I've had them...no so bad.Had never heard of syringomas, but just googled them & have seen them before...look like in most cases they are harmless. Also lots of people I know with lupus have enlarged lymph nodes that are not because of cancer or anything. Probably good to have it checked out but try not to worry too much.

ANA is the basic autoimmune condition test but as I have found out celiac & hashimoto's can cause this too, as well as having a family member with an autoimmune condition, or it's just normal in some people.

A Rheumatologist is supposed to be the Dr to see for autoimmune conditions but I have found they focus mostly on arthritic conditions. Have very little input on non arthritic autoimmune conditions - like celiac...they send ya to the GI who focuses on the gut not the other symptoms...so sometimes it feels like there is not a specific Doc to help with the confusion of autoimmune illness.

Still I would see if your primary will refer you, if your Dad had MS it's probably worth looking into. They can run a bunch of tests, some pick up on specific autoimmune conditions other are more general.

Hope your having some luck! Feel free to ask me questions any time.

Reba32 Rookie
Reba32
Posted

If you have one AI, it is very likely that you can develop, or already have others. I think a lot of us you'll find here have varying collections ;)

I have Celiac, Grave's Disease (in remission!), and fibromyalgia. These are the dx'd ones, there could be more!

up late Newbie
up late
Posted

There are also allergy specialists and allergy clinics who are well equated with coeliac and it's complications. Don't be surprised if you're sharing the waiting room with a lot of kids though, they treat adults but tend to deal with a higher volume of children. I don't know what immunologists do, I think they're more in the lab.

lucia Enthusiast
lucia
Posted

A friend who has suffered from autoimmune-like symptoms for years is now being helped by an Integrated Medicine doctor. I looked into this kind of doctor for myself, but unfortunately most do not take insurance. They need to spend more time with their patients than most insurance plans allow.

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  • 2 weeks later...
laylamc Newbie
laylamc
Posted

I was lucky enough to find an allergist/rheumatologist and definitely recommend that or either of those two individually. Endocrinologists were particularly awful to deal with around my autoimmune issues.

rdunbar Explorer
rdunbar
Posted

I was dx'd with Celiac in August, but back in April I went to my dermatologist for my annual body scan and she found a cluster of little bumps behind my left knee and she wanted to biopsy them. She did and they came back as something called "eruptive syringomas" she told me back then that they are sometimes autoimmune related, but she didn't want to scare me and in my case they probably weren't.

Well, now I randomly get this celiac dx and I wonder if it is related. What type of Dr should I go to to investigate further?

She told me that the eruptive syringomas are not very common and she had to request info from the pathologist on what they really even were. So, obviously my derm is not where I need to go.

Any suggestions? I am scared about what other AI disease I could have. My Dad has MS- do you know if there is anyway to test for that aside from the spinal tap?

I know my rheumatologist ordered a bunch of AI tests, but is there a MS blood test?

Hi, Dermatitas Herpetiformis is often misdiagnosed by derms and doctors both.

it's the skin version of celiac disease; look into it, there's also a forum for it on the board.

Behind the knee and elbow are common places for it to be. It's tremendously itchy, and painful and forms in clusters of blisters.

irish daveyboy Community Regular
irish daveyboy
Posted

What type of Dr should I go to to investigate further?

She told me that the eruptive syringomas are not very common and she had to request info from the pathologist on what they really even were. So, obviously my derm is not where I need to go.

Any suggestions? I am scared about what other AI disease I could have. My Dad has MS- do you know if there is anyway to test for that aside from the spinal tap?

I know my rheumatologist ordered a bunch of AI tests, but is there a MS blood test?

allergist or immunologist

Open Original Shared Link

Best Regards,

David

SaraKat Contributor
SaraKat
Posted
  • Author

Hi, Dermatitas Herpetiformis is often misdiagnosed by derms and doctors both.

it's the skin version of celiac disease; look into it, there's also a forum for it on the board.

Behind the knee and elbow are common places for it to be. It's tremendously itchy, and painful and forms in clusters of blisters.

I had a biopsy and it was not DH. They weren't itchy either, I didn't even notice them, she did while doing a body scan for skin cancer. They were called eruptive synringomas according to the pathologist.

  • 5 weeks later...
Courtney101 Rookie
Courtney101
Posted

Immunologists specialise in all aspects of the immune system, this includes both allergies and autoimmune disorders. They often work closely with other specialists too, mine has referred me to dermatologists, gastroenterologists, nutritionists etc. But I think an immunologist is a good place to start.

good luck, hope you can track down the right person to help you :)

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