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UCTD -does gluten and dairy free help? Post knee surgery problems
Four years ago I had surgery to remove colon cancer. It was contained with no further treatments necessary. Then I found out I had multiple stomach ulcers, doctor said from years of overuse of ibuprofen for migraines and osteoarthritis. I gradually grew weak in my legs, could barely climb stairs. Then my sense of balance was out of whack and I developed raynaud’s in hands and feet. The 3rd rheumatologist ran tons of bloodwork and diagnosed UCTD and possibly fibromyalgia. I was on prednisone for 5 months then being weaned off as he put me on plaquenil. After a month on plaquenil I had an awful allergic reaction of hives for 6 weeks. Next he wanted to put me on methotrexate, he said for life. At that point I said I wanted time to research and get a 2nd opinion. I’ve been swimming and doing PT which has helped strengthen my legs but lack of balance is still an issue so I use a cane. I had a total knee replacement 6 months before the UCTD diagnosis. The surgery was fine and I was doing well until about 10 months. Surgeon said I have PCL “issues/injuries”which is not unusual for UCTD patients. He wants to go back in to add more adhesive to stabilize, but I really don’t want to do anything surgically with no guarantees the tissue disease won’t cause issues again. I’ve read 3 books now by medical doctors who have autoimmune diseases themselves who stated they and their patients are managing mostly with strict diets of no gluten, dairy, sugar or nightshade veggies. Has anyone else found that strict diets can help that much? I can’t take NSAID’s but I am honestly just as afraid of the methotrexate, prednisone and other drugs as I am of the UCTD itself. I’m almost 70 and I do have an appt. for 2nd opinion the end of July. Thanks in advance for any thoughts, questions to ask doctors!
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@mojo55
I hope that you get lots of input from here about dietary changes and healing with MCTD. This is one of my 4 autoimmune diagnoses in the past 30 years. I think it's one I can remember since I was a girl; always spraining my ankles, knees buckling, shoulder dislocated, etc. I was taking yoga classes when I was 17 and I was a star! Who knew I was injuring myself from early on.
I wanted to tell you I hope you get replies here to help you prepare for the next appointment. Others may laugh but I became disabled when I was 31 and have let food be my one indulgence! Before gluten-free products were available I went gluten-free for 10 years to help IBS. Then I visited my elderly parents cross-country and arrived at midnight. They didn't have any food in the house except peanut butter sandwiches! So that's what I ate with no bad effects. That was the end of any special diet. I eat well, limit sugar, drink 3 cups of black tea/daily. Nutrition is important but I have never found any changes in my autoimmune symptoms.
I know most people will disagree. That's why I'm looking forward to seeing replies to your question. Also, I have been taking plaquenil for the past 4 years without a reaction. It seems so specialized; I tried methotrexate and it caused me to have the worst depression I've ever had. Meanwhile, I hear you; who wants to be a guinea pig. Wishing you good luck with putting your ideas together before that appointment.
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3 ReactionsThank you @jw9. I’m thankful to find this online group! First it takes years to find a doctor, then more time for the diagnosis and all the while you just want some people to chat with who understand because they’re navigating similar things.
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2 ReactionsI have been diagnosed with UCTD. I like Plaquinil and it has helped in a few ways. I'm on prednisone, too. It helped in a few ways, but it's stopped helping in some ways that it was. Azathioprine helped me a lot but I had to stop because it hurt my liver. I have tried
strict diets and have not noticed any difference. Exercise is my best help, swimming and walking. Quality of life...! Strict diets do not make me happy!
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2 ReactionsThank you @julieceann. I definitely agree about quality of life! Swimming and aqua mobility classes are the best, I can almost feel healthy and fit again!
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2 ReactionsReading and my discussions with vegans has been helpful, inflammation and gut health are highly correlated. My zoom meeting with a nutritionist was expensive and disappointing. She was selling supplements.
After many hours of research on autoimmune and GERD gut health and months of trial and error I asked my rheumatologist questions and found his responses helpful.
Fortunately I do not get a reaction from diary and I like the taste of Keifer. Before each meal I drink 2-3 ounces of 1% fat no added sugar plain Keifer. Nuts are not an option, I don't like the smell, taste or texture.
Eating at a chain restaurant doesn't work for me and sometimes I don't have a choice. I'm comfortable not eating - this will not be my last meal. It can be difficult finding something to eat at a fine restaurant and I don't want to get sick. Now I call ahead of time and ask if they will cook unseasoned protein and fresh vegetables on a clean grill. My friends are kind, let me determine the restaurant choices.
With that said I believe flexibility is important, just like autoimmune symptoms vary person to person so do the reactions to different foods. I found removing one food product from my diet and adding it back in a month later helps me figure out what foods I can eat without a reaction. My diet is a moving target, and viable options are more limited than they were a year ago. I work at being creative and thinking outside of the box.
The results are not perfect, by working on diet I hope to reduce the flare ups and intensity by 50%. Autoimmune drugs are Plaquenil and Cellcept.
May your health improve and you find doctors that give you confidence that your health plan is appropriate. Be well.
I was diagnosed with Hashimoto’s and Hypothyroidism in November of 2022 before contracting Covid. I started off taking 125 mcg of Synthroid with 5 mcg of Cytomel. That worked great for a while and then it was too much medicine, so I went on a lower dose of Synthroid and went off the Cytomel. I then read a book by Dr. Isabella Wentz and she suffers from the same autoimmune disease, Hashimoto’s. She suggests going gluten, dairy and soy free to minimize body inflammation. Guess what? It works! I have been gluten, dairy and soy free for about 2 years and the body inflammation has disappeared. It does work. The medication, Synthroid is to treat my Hypothyroidism, not Hashimoto’s. There is no medication for Hashimoto’s, other than eliminating certain foods, as I’ve mentioned. I also lost my taste and smell in December of 2022 due to Covid! It’s now May 2025 and I still don’t have it back! Long Covid is what they tell me. Eating to live is the way I roll, but I wouldn’t recommend it! Try the elimination of gluten, dairy and soy. Your joints will thank you! Think about it, glu(ten), there is the word glue in it!