• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is There A Type Of Dr That Specializes In Autoimmune Diseases?
0

12 posts in this topic

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?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

http://onlinelibrary.wiley.com/doi/10.1111/j.1600-0560.2009.01277.x/abstract

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

http://allergies.about.com/od/allergies101/a/shouldiseemd.htm

Best Regards,

David

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,393
    • Total Posts
      935,840
  • Member Statistics

    • Total Members
      65,078
    • Most Online
      3,093

    Newest Member
    ARD
    Joined
  • Popular Now

  • Topics

  • Posts

    • I bought Spicely Organics Chili powder from Whole Foods in Bellevue, WA.  I got very sick after eating it, so I tested it with three separate gluten tests.  They all came up positive for >10ppm, which is what their "certification" says they test below.   I just wanted to warn everyone away from them.  They clearly have quality control problems and are not safe for celiacs.
    • It's no secret that nearly all traditionally brewed beers contain barley. The flavor and body barley imparts on traditional beers is partly responsible for their rich, full taste. Finding alternatives to barley that are suitable for brewing gluten-free beer has been a challenge. One solution has been to brew beers with traditional barley ingredients, and then use a combination of enzyme action and filtration to render a final product that test below 20ppm gluten required for gluten-free products. View the full article
    • First have you been tested for celiac disease? Any doctor can do the blood test but you have to be eating gluten on a daily basis for the test to work, nut much just a half slice of bread a day. You should get this tested, the high constipation, coughing stuff up was very common for me before diagnosis. The coughing stuff up for me was from a allergy that developed I did not know of, the mucus was draining down my throat and choking me at times, and was constantly running a fever and night sweats. I was constipated for 4-10 days average back then and drinking plenty of liquids did not help in the least. Your gut rumbling could be many things, celiac is one, SIBO is another especially with the bad breath. in your case it could be related to constipation causing rotting, fermenting, and bacterial overgrowth of the waste in your system. Now to deal with the immediate symptoms, your constipation is also a sign of magnesium deficiency, I imagine you might have noticed some other symptoms from these. Now normally I would suggest either the Natural Vitality Calm or Doctors Best which is easier on the stomach. In your case I straight up suggest the Natural Vitality Calm it is a Magnesium Citrate and works a bit like a laxative. Start with 1/4 tsp twice a day in a beverage, I like the orange or the cherry in a hot green tea or you can try it in a juice. Up the dose slowly over a periods of a week to the full dose or perhaps a little more til you get a bit looser stool.     You mentioned the mucus in the stool 2 things cause this normally. Undigested fats, and inflammation/irritation causing the body to produce the mucus to help defend itself and purge the irritants. A doctor can probably tell you more but I might suggest a digestive enzyme in the mean time. I like to use a super papaya enzyme before and after a meal, find them on amazon. Jarrow also makes full enzyme complex that can help. Other thoughts if your on dairy, stop, with the constipation, and other issues this is a equation for trouble and you can reintroduce it in a few months when you clear up and see if it bothers you then. The bad breath can be a sign of lactose intolerance/digestive issues with dairy also. If it comes you you have celiac then you would have your explanation here as the villi which produce the enzymes to break down lactose are damaged/destroyed first causing most to develop a temporary lactose intolerance which for some goes away after a few months of healing. B-vitamin folic acid, and niacin will be a huge help also with some things. but will we get into that a bit later feel free to look up Liquid Health Stress & Energy if you thing it might be relevant at this point it is what I use 3 times a day with another blend they have.
    • Some of your symptoms sound like my ulcers.  I take carafate before every meal now and they are much better.  I have 3 ulcers possibly caused by taking iron supplements.  They are worse when I eat spicy food and dairy. I might be wrong but for your sake I hope it's just ulcers.  They were found by endoscopy.
    • The yellow is probably fat you are not absorbing.  The pain could be from your intestines being inflamed.  Go see the gastroenterologist.  The ER did not help me with any of those symptoms.  Good thing it's clear so you know it's not your appendix or any other vital organ.  It takes time but probiotics, bone broth and  vitamin D and b 12 help. My pain was mainly my muscles giving out from the malabsorption.
  • Upcoming Events