Celiac, Lupus, and RA together?


This will be long. If you have time to read and respond I really appreciate you!

I have been previously tested for Celiac by colonoscopy/endoscopy and blood work. During this time I was barely able to eat anything at all for months. Sent to ER for malnourishment due to severe intestinal pains, stomach pain, and severe nausea along with very bad restroom issues all day long. It came up negative. I lost 30lbs ( lowest weight was 90 ish) and chunks of hair on my head, and black bags under my eyes etc… I eliminated gluten from my diet and was drastically better for a bit. I then developed a dairy allergy then a corn allergy and now I am almost certain a mushroom allergy.

Few months go by and I have clicking and popping in my joints. This progresses over time to now when I have flair ups I am severely fatigued, headaches, joint aches (ankles, wrists, knees, base of scalp, elbows, jaw) , pains, and swollen lymph nodes. I have been tested for my ANA (auto immune pathogens) and it’s positive. Lupus test is positive. RA test is positive. So I was sent to a Reumotologist for further testing. He said he would be almost 100% certain I have Celiac and when I was tested I wasn’t taking in enough gluten to even have an accurate test result. That being Celiac is most likely triggering all these other auto immune responses. He says I need to assume I have it and be very careful to never eat gluten. He is the 2nd doc who has said this to me.

Tomorrow I have 28 vials of blood being drawn. 28!! Like holy cow!

My question is who thinks my docs response to me having Celiac may be closer to being accurate? I kinda have felt this way for a while.

Also, 28 vials y’all is enormous for my tiny 110lb 5’4 body. How am I going to feel after this and any way for me to prep before hand? I know stay hydrated.

Has any one else gone through being Celiac, Lupus, and RA together?

Thank you for reading! ??☕️

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Emma 4 years 10 Answers 441 views 0

Answers ( 10 )

  1. It’s nice to see that your doctors are considering CD as the source of your troubles. So many don’t and we figure it out on our own. I hope you come trough okay. All I can recomend is to get as much fluids into you as you can. Maybe something with a bit of sugar to help with your energy level. I hope it works out for you and you get answers.

  2. I can only weigh in on your question about whether I think your doctors response is accurate… That is exactly how it happened with me about feeling better right after going gluten free for a bit and then getting hit hard with a dairy intolerance followed by multiple other intolerances. With all you have going on it really does sound like celiac is what set it all in motion..my two cents worth.

  3. I wish my doctor would draw 50 to find out whats wrong with me. All my tests come out with results like a healthy baby yet I am falling apart. Best of luck to you. And hope you find a way to feel much better.

  4. I’m sort of going through something similar except I’ve been diagnosed with celiac 1 1/2 yrs ago. But recently had a positive low ANA and lupus. RA negative. I’m getting retested in a couple of months Bc I was taking steroids for my headaches and some of my numbers were off. But my gut says there is definitely something off. Make sure you get tested and retested to confirm. That’s a lot of vials wow! Good luck and hope you get your answers.

  5. You might want to research Histamine Intolerance.

  6. Mine drew 28 at one time. I am just under 5’1 and 100 lbs. I was fine. I am a hard stick and I have a clotting disorder. Don’t play with your phone while waiting. Keep your arms lowered and not bent at the elbows like when using your phone. Also if you are in a cold weather location keep your arms warm too.

  7. I have lupus and fibromyalgia. My blood came back negative for celiac and I cut it out between the blood draw and the follow up so she said just assume I have celiac because the treatment is avoiding gluten. I got a lot of relief going gf but with the lupus and fibromyalgia I have pain every single day.

  8. I got my blood drawn. I feel horrible. And my heart hurts a lot… any of this sound normal?

  9. Please stay hydrated. Dehydration will give you rapid heart rate. I drank alot of coconut water. Best to you. Please keep us up to date.

  10. Gee wiz that’s almost like donating blood. Don’t drive yourself if you can help it. You may be a little dizzy for a while.

    I would trust your Reumotologist. If they didn’t do a biopsy after initial blood work, then you don’t really know. Have you been tested for the genetic markers?

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