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

Celiac And Then Lupus


fattycat

Recommended Posts

fattycat Rookie

I keep reading that a lot of people had a diagnosis of Lupus and then later in life got a diagnosis of celiac. I've been gluten free for about a year now and have still am having problems. The doctors are now thinking that I may have Lupus too. Any get a diagnosis of Celiac and THEN lupis?


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



Celiac.com Sponsor (A8-M):



cahill Collaborator

I keep reading that a lot of people had a diagnosis of Lupus and then later in life got a diagnosis of celiac. I've been gluten free for about a year now and have still am having problems. The doctors are now thinking that I may have Lupus too. Any get a diagnosis of Celiac and THEN lupis?

If you are concerned about lupus have your doc do an ANA test. My doc did an ANA test that came back moderately positive ( 35 in mod range 20 to 60) but negative for lupus.My Hashimotos antibodys were off the scale( 998.76 with normal range being < 10.10)which accounted for the mod. positive ANA reading .

Since lupus and celiacs are both autoimmune disease it could be beneficial to be tested.

Have you considered that if you are still having problems after a year gluten free that you may have other intolerances going on??

fattycat Rookie

If you are concerned about lupus have your doc do an ANA test. My doc did an ANA test that came back moderately positive ( 35 in mod range 20 to 60) but negative for lupus.My Hashimotos antibodys were off the scale( 998.76 with normal range being < 10.10)which accounted for the mod. positive ANA reading .

Since lupus and celiacs are both autoimmune disease it could be beneficial to be tested.

Have you considered that if you are still having problems after a year gluten free that you may have other intolerances going on??

The test is next week so I'll ask which one they are doing. Thank you.

Yup, considered other intolerances. Went to an allergist, kept a food journal, etc. Have also been to two endocrinologists, internal medicine doctor, acupuncturist, cardiologist (today), family doctors etc. Got tested for Cushings too and though I have all the symptoms, ends up I dont have it. So far every test has been normal. I was going to let it go and just say it was all in my head but when my internal medicine doctor heard that I'm retaining water, gaining weight (I started gaining weight before I went gluten free), etc with no reason he sent me to a specialist right away.

Reba32 Rookie

It is not uncommon at all for someone to have more than one auto-immune disease, and there is no rule whatsoever about what order they'll attack you. If you are having Lupus symptoms, your doctor would also likely be testing for other auto-immune disease that have similar symptoms, like Sjogren's, scleroderma, rheumatoid arthritis, multiple sclerosis, etc etc ad nauseum. It may take a few vials of blood, so make sure you're well hydrated and well fed before you go! ;)

cahill Collaborator
It may take a few vials of blood, so make sure you're well hydrated and well fed before you go! ;)

My last testing they took 8 vials of blood :huh: thankfully I had a bottle of water and a banana in my car because I sure needed it when I left :lol:

fattycat Rookie

My last testing they took 8 vials of blood :huh: thankfully I had a bottle of water and a banana in my car because I sure needed it when I left :lol:

lol Will do! I feel like I've had nearly every test under the sun done in the past 6 years! I've been medication free for the past 6-8 months now. Kind of bummed out that I may have to go on a ton of medications. :(

Reba32 Rookie

yep, when I went in for my annual, they took 8 vials, and then a week later took 3 more! I'm going back today to talk to her again, and they'll probably take more.


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



Celiac.com Sponsor (A8-M):



Loey Rising Star

I keep reading that a lot of people had a diagnosis of Lupus and then later in life got a diagnosis of celiac. I've been gluten free for about a year now and have still am having problems. The doctors are now thinking that I may have Lupus too. Any get a diagnosis of Celiac and THEN lupis?

I was diagnosed with Celiac last spring then I was diagnosed with CLL (Chronic Lymphocytic Leukemia) and recently Lupus. It seems to me that they're all connected. A lot of people also get Fibromyalgia (sp?). I agree that you need to get the ANA test. I hope that you feel better and get answers soon. We're all here for you!!!

Loey

dilettantesteph Collaborator

You could also consider super sensitivity. There isn't a test for it that a doctor can give you. You can read up on it in the super sensitive section. You could get an idea if that is your problem by eating only produce and (non poultry) meat, packaged at the meat distributor, for a week and see if you feel better.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,680
    • Most Online (within 30 mins)
      7,748

    ashley94261
    Newest Member
    ashley94261
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.