Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lupus Or Other Immune Disorder Where


debmidge

Recommended Posts

debmidge Rising Star

anyone familar with these disorders? wondering about symptoms my husband has....


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



2kids4me Contributor

There are numerous connective tissue disorders. Check this site out for info on them - Open Original Shared Link

The home page has link for patient information, click on that and then choose which disorder you want to look up.

The unfortunate part about immune mediated disease is that many have variable symptoms and symptoms that could go along with other disorders.

eg: late stage B12 deficiency has neurological symtoms and can look like MS

Myasthenia gravis can come and go with symptoms

Lupus has 'flares" that come and go and not everyone has the classic symptoms - for Lupus there are specific blood tests that look for ANA (Antinuclear antibodies)... the results have to evaluated carefully because anyone with a pre-existing autoimmune disorder may have positve ANA .

Celiac is of course known as the "great imitator" since symptoms can vary so widely and look like other conditions. Who would think to look at the intestine as a cause for severe migraines? My daughter has not had a migraine since we found out she was celiac and started gluten-free.

To have autoimmune conditions investigated, you will need to be refered to a knowledgable rheumatologist or internal medicine doctor. Try contacting John's Hopkins autoimmune clinic and they may be able to give you a list of doctors in your area.

Open Original Shared Link

Nancym Enthusiast

I was recently diagnosed with ankylosing spondylitis, which explains why my joints, muscles and tendons have been hurting me since I was in my 20's.

kb8ogn Rookie

I have several autoimmune diseases. I am being tested and treated for lupus although my test results have been negative. With Lupus you can test falsly on just about anything. I am also being treated for RA(in my hands mostly), Reynauds, Fibro and a severe vitamin D deficiency in addition to the Celiacs which was misdiagnosed as IBS for 3 years.

Lupus can imitate a great many of other autoimmune which is why it can take so long for a diagnosis. I am going on 5 years. I have everything but the positive ana and the butterfly rash.

I belong to another board that deals with all autoimmune diseases. I don't know if I am allowed to promote other boards here, but if I'm allowed, someone please let me know and I will post it for everyone.

Shelli

nikki-uk Enthusiast

My husband has Psoriatic Arthritis.

Bloods were negative for Lupus and Rheumatoid Arthritis.

Hubbie had a small patch of psoriasis on his knee-this lead the rheumatologist to the dx.

Hubbie was dx with this 2 yrs before the dx of celiac disease,although when I think back,the stomach symptoms arose around the same time as the aching ,stiff swollen joints.

What symptoms does your husband have?

Shelli,I'd be interested in looking at your 'autoimmune' board.(I've posted links to other boards before with no probs)

ebrbetty Rising Star

I have discord lupus, have had it about 5 years now

kb8ogn Rookie

The other message board is aptly named, butyoudontlooksick.com

There is a wonderful story there. It is called the spoon theory. It has helped me explain my illnesses to quite a few people including my own family.

The people at the message boards are wonderful and they have illnesses ranging from celiac's to lupus to ms and so on...

There is a wealth of knowledge there about all different "invisible illnesses".

I love this site because it is very detailed about celiac, the other site is where I park my car at night if you know what I mean.

Shelli


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



penguin Community Regular

The spoon theory is heartbreaking, but so true. It would be a great way to explain any chronic illness, including celiac. Thanks for the info!

nikki-uk Enthusiast
The spoon theory is heartbreaking, but so true. It would be a great way to explain any chronic illness, including celiac. Thanks for the info!

Yeah,absolutely,what a great analogy.Although it's my husband that's ill,obviously I am very aware of how his illnesses have impacted on all our(me + kids) lives.

Interesting message board too,when I get more time I will have a good read through.

Thanks Shelli :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,090
    • Most Online (within 30 mins)
      7,748

    Jamie B
    Newest Member
    Jamie B
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.