Decided to try good and I feel much better!

[Jlsnj]

Hi everyone, I was diagnosed with Lupus tumidus after a skin biopsy and over a decade of various symptoms including chronic pain and skin rashes. I recently noticed I had too much gas and burning gi symptoms so I decided to try gluten free. First I went 3 days and noticed a felt 80% better..pain was minimized, no gas, no diarrhea, so I tried eating wheat on the 4th day to see what would happen. I had breads and cookies and the next day pain, diarrhea and gas came back. I immediately went back to gluten-free. Now I’m on day 3 again (2nd round) and I feel pretty good. I was not expecting so much pain relief, I was going gluten-free just because of gas. Now my whole system feels calm, lingering pain is still there but so much better, and my skin is not itchy anymore.

[trents]

Welcome to the forum, Jlsnj!

Glad you are experiencing such good results from going gluten free. You are dealing with a lot of autoimmune stuff with the lupus. Celiac disease is also an autoimmune condition. Autoimmune diseaseses tend to cluster and it is well-known that there is a higher incidence of lupus in the celiac population than there is in the general population. Just be aware that if you wish to get tested for celiac disease to confirm that you actually have it, you would need to resume eating regular amounts of gluten for 6-8 weeks. There is also the possibility  that you could have NCGS (Non Celiac Gluten Sensitivity).

[Scott Adams]

Welcome to the forum!

As @trents mentioned it sounds like at the least you have NCGS, and possibly celiac disease. Hopefully the diet will help with your lupus symptoms as well, and this article summary is older, but may be helpful to you:

 

[Jlsnj]

Thanks for the advice guys, I see my rheumatoid in a few weeks but I don’t think I want to eat the gluten to find out, I am very happy just having relief finally! And excited to see what other symptoms get better as time goes on. I’m seriously doubting the lupus diagnosis now but it’s possible that I have both. I am expecting that my lab work will eventually become normal. I’ve had slightly high calcium, albumin and creatinine for years and recently red blood count has been slightly high. I was referred to a cancer dr. Twice to look for leukemia, thankfully it wasn’t that. And I have anti thyroglobulin antibodies. I am super excited to see what happens after a month, 6 months and a year.

[Scott Adams]

If you are getting such immediate relief, then I fully understand your decision not to get tested. A positive celiac disease diagnosis might also subject you to higher private life and health insurance premiums. This article may help you stay 100% gluten-free, and let us know how it turns out!

 

[Charliexxx]

Good to hear you feel better from going gluten free. Hoping it improves further. 

[Jlsnj]

Thanks for the helpful article links. I am feeling better everyday and will keep you posted on lab work and dr. visit in may.. anyone know how long the rashes take to fade? I have a red chest below my neck, looks like sunburn or allergic reaction been there for years, some days it looks like it’s fading then it flares up a little. 

[Scott Adams]

It sounds like it could be dermatitis herpetiformis, which is the skin expression of celiac disease. Do you have tiny, clear, and very itchy blisters with it? If so, a dermatologist could do a skin biopsy to see if it is DH.

[Jlsnj]

I had a hard time even convincing drs that it was a rash at all, one said my skin is thinner there and that’s why it’s red. it looks a lot like sunburn, no blisters or itchiness, just red with some tiny red dots and it stops right where my neck begins. There are some tiny hive-like bumps. 

[Scott Adams]

It's hard to tell from your description whether it might be DH, but it it isn't super itchy it's likely not. In any case, if the rash is related to gluten sensitivity it should improve on a gluten-free diet.

[Jlsnj]

My rash around my chest looks like it’s fading, it kind of fluctuates but definitely looks better with each calm episode. It never looked blistered, maybe bumpy,, the ones on my arm were definitely bumpy. It mostly looked sunburnt with some pigmented spots. And I have areas of lipoatrophy on my back, always wondered what that was from. Only time will tell if my arm rashes stay away too.

[Jlsnj]

My arm rashes would tingle before they appeared, the neck one never really itched but it did look like it spread mildly to my back and that felt itchy sometimes, like dry skin itch.

[Jlsnj]

It’s been 25 days. I lost 10 lbs, I’m burning clean fuel now! My rash is definitely fading and my skin tone has improved, I was very pale. My anxiety is gone, and I feel stronger and happy. I have energy. Some flare ups here and there but better everyday. I am experiencing heat flashes at night. I think it’s the toxins trying to come out, tomorrow I’m gonna work up a sweat.

[trents]

Congrats on your new lifestyle and applying yourself to eat and live healthily! It's paying benefits already.

[Jlsnj]

My rheumatologist wouldn’t run the celiac test or vitamin tests, says lupus is in remission, continue meds and diet if it helps, see gastroenterologist for concerns about celiac. Their website literally says they treat celiac! Had regular routine labs done. I don’t plan on visiting gastroenterologist at this time, I will wait and see what labs are. I ordered 23andme test, will show if I have the gene…definitely feeling better with some bad days here and there.  I’m choosing to discontinue lupus meds. If rash is still there in June when I see dermatologist, I will ask for skin biopsy. I’ll keep y’all posted. 

[ravenwoodglass]

Glad you are feeling better. Many drugs need to be tapered off rather than quitting suddenly. Your doctor or pharmacist should be able to tell you if the ones you are on is safe to just stop suddenly.