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

Random Symptoms..steroid Addict..confirmed Celiac

CeciliaCeliac

Recommended Posts

CeciliaCeliac Explorer
CeciliaCeliac
Posted

URRGGHHH!!! I need help. My symptoms are all over the board. Not the usual Celiac Symptoms with maybe 1-2 flare ups per year. (now 38 years old and have been suffering for 6 years) Here's the list.....1-2 somach flare ups yearly with horrible cramping, pain, vomiting, exhaustion all related to food....throughout the year, I have weird rash on knuckles, elbow pain, hair loss, bouts of hair turning grey, skin peeling on feet and fingertips, trouble swallowing/choking, weird muscle/back pain like there are bruises...... but nothing is there...history of asthma, scoliosis, chronic sinuitis, back pain and inflammation.....now Prednisone solves ALL my symptoms and makes me feel great!!!! but........I know it's not good to take forever and I need to find out what else is going on......the doctors won't help when you are self-medicating with steroids.....I need to find the link so I can help myself!!!!

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

Celiac.com Sponsor (A8-M):


Mother of Jibril Enthusiast
Mother of Jibril
Posted

How are you self-medicating with steroids? Isn't that always a prescription drug???

Anyway... if prednisone makes a difference then your problems are clearly autoimmune. Are you on the gluten-free diet? If you are then your GI symptoms shouldn't "flare up." However, there are some other autoimmune disorders (Chron's, ulcerative colitis, SLE, Sjogren's, etc...) where GI symptoms are either a prominent feature or a side effect. The hair loss, joint pain, peeling skin, and trouble swallowing sounds like hypothyroidism. The only way to be sure is to check your TSH and free T3/T4. The rash could be DH, especially if you're not sticking to the gluten-free diet.

Incidentally, the muscle pain could be fibromyalgia... or it could be one of the nasty side effects of taking too much prednisone. Do you know how dangerous it is to be on prednisone for long periods of time??

Open Original Shared Link

Steroids are not addictive, but you DO need to taper off of them... otherwise you could have an adrenal crisis, which could be FATAL. Prednisone is nothing to mess around with on your own.

CeciliaCeliac Explorer
CeciliaCeliac
Posted
  • Author

Well, I tested positive and have been gluten free since April 23rd. Was doing ok and almost weaned off prednisone until a flare up 2 weeks ago. TSH tested normal (with replacement) in November and again about a month ago. Haven't had ANA tested yet....muscle pain started years before the steroids so I'm still at a loss.....thanks for the reply..... :(

How are you self-medicating with steroids? Isn't that always a prescription drug???

Anyway... if prednisone makes a difference then your problems are clearly autoimmune. Are you on the gluten-free diet? If you are then your GI symptoms shouldn't "flare up." However, there are some other autoimmune disorders (Chron's, ulcerative colitis, SLE, Sjogren's, etc...) where GI symptoms are either a prominent feature or a side effect. The hair loss, joint pain, peeling skin, and trouble swallowing sounds like hypothyroidism. The only way to be sure is to check your TSH and free T3/T4. The rash could be DH, especially if you're not sticking to the gluten-free diet.

Incidentally, the muscle pain could be fibromyalgia... or it could be one of the nasty side effects of taking too much prednisone. Do you know how dangerous it is to be on prednisone for long periods of time??

Open Original Shared Link

Steroids are not addictive, but you DO need to taper off of them... otherwise you could have an adrenal crisis, which could be FATAL. Prednisone is nothing to mess around with on your own.

Mother of Jibril Enthusiast
Mother of Jibril
Posted

Unfortunately, you need a lot of patience when you have autoimmune disorders. I'd say that for every five things I try (and I've tried a LOT of things in the last 14 months) maybe two of them work out. I've actually lost track of the number of doctors I've seen... primary care doctor (x4), gynecologist, allergist (x2), ENT, gastroenterologist, endocrinologist, rheumatologist, opthamologist... along the way I've been diagnosed with Hashimoto's (hypothyroidism), chronic dry eyes, antibodies to my own mast cells (which causes periodic episodes of anaphylaxis... a SCARY problem that started after six months on the gluten-free diet), and now it looks like my pancreas and kidneys are involved. Oh yeah... I also had surgery to remove a lymph node, which was thankfully benign. I see no end in sight to the doctor's visits.

Anyway... here's the main message I wanted to give you. If you pay attention to your body (and that means you have to stop self-medicating) you can use those signals to help figure out what's going on. That also means that you need to educate yourself so you can work with your doctors!!! There is SO MUCH to learn about autoimmune disorders. This website is a great place to start. Another resource I found useful is a book titled, "The Autoimmune Connection" by Jill Buyon and Rita Baron-Faust.

Once you know what kind of problems you're facing you can get appropriate treatment. That might mean going back on prednisone... maybe not. Like I said, it's a very dangerous medication. I'm sure it makes you feel better, but it's really supposed to be a last resort. Although it sucks having an immune system that overreacts to everything <_< a depressed immune system has a hard time fighting off things like bacteria, parasites, and cancer.

CeciliaCeliac Explorer
CeciliaCeliac
Posted
  • Author

Yep, thanks again for the info. If I go with my heart and what I've learned, the only link that really sets off a flare up is a sinus infection. I was hoping a gluten free diet was going to solve all my stomach problems, but my search will continue. Maybe I'm still in the healing process and just need more time. I trust my intuition and instincts and hopefully will have more answers soon. Thanks for the guidance.........and I hope you also have success in your search for better health.

Unfortunately, you need a lot of patience when you have autoimmune disorders. I'd say that for every five things I try (and I've tried a LOT of things in the last 14 months) maybe two of them work out. I've actually lost track of the number of doctors I've seen... primary care doctor (x4), gynecologist, allergist (x2), ENT, gastroenterologist, endocrinologist, rheumatologist, opthamologist... along the way I've been diagnosed with Hashimoto's (hypothyroidism), chronic dry eyes, antibodies to my own mast cells (which causes periodic episodes of anaphylaxis... a SCARY problem that started after six months on the gluten-free diet), and now it looks like my pancreas and kidneys are involved. Oh yeah... I also had surgery to remove a lymph node, which was thankfully benign. I see no end in sight to the doctor's visits.

Anyway... here's the main message I wanted to give you. If you pay attention to your body (and that means you have to stop self-medicating) you can use those signals to help figure out what's going on. That also means that you need to educate yourself so you can work with your doctors!!! There is SO MUCH to learn about autoimmune disorders. This website is a great place to start. Another resource I found useful is a book titled, "The Autoimmune Connection" by Jill Buyon and Rita Baron-Faust.

Once you know what kind of problems you're facing you can get appropriate treatment. That might mean going back on prednisone... maybe not. Like I said, it's a very dangerous medication. I'm sure it makes you feel better, but it's really supposed to be a last resort. Although it sucks having an immune system that overreacts to everything <_< a depressed immune system has a hard time fighting off things like bacteria, parasites, and cancer.

TotalKnowledge Apprentice
TotalKnowledge
Posted

If you have eliminated Gluten, then additional food intolerances could be exacerbating your conditions. Pinning down a food intolerance is hard to do since there can be a delay between eating the food, and a variable time that the symptoms persist.

I would say talk with your doctor, but some doctors are more receptive to helping you with food intolerances than others.

SGWhiskers Collaborator
SGWhiskers
Posted

Open Original Shared Link

Check out dermatomyositisis and polymyositisis. One of them has papules on the knuckles and some of the other symptoms you are describing. good luck finding the cause of your symptoms. I took prednisone for 5 days, and I dream of the doctor who will prescribe it for me even though it is typically bad in the long term. I don't ask because I know how bad it is for osteoperosis. I just spend my free time hunting for the reason for my own crummy extra symptoms.

Best wishes

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748
    tdouglas2901
    Newest Member
    tdouglas2901
    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

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      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
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      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
      Inconclusive results

      By Scott Adams · Posted

      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.    
×
×
  • 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.