Lupus/MCTD/UCTD and/or Gastro Problems

I'm new to the group, and I was wondering if anyone has an autoimmune disease such as Lupus or MCTD or UCTD that also has gastrointestinal problems or chronic pancreatitis. I have UCTD which sometimes test positive for Lupus, and I also have chronic pancreatitis and severe gastroparesis. I also am diabetic and on CellCept, Plaquenil and Prednisone. I have been sick for 12 years, but I've gotten so much worse not being able to eat and having so many GI troubles. i have a jtube and am on tube feedings. I just was wondering if there's anyone out there remotely like me! Thanks for all of the encouragement you all give on these boards. They help me more than you know!

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Hi amijanel

I have a mix of lupus RA raynauds and secondary sjogrens. I never tested positive for the lupus, but did have a positive rheum factor. But the microvascular study I had done, along with some other vascular symptoms, face rashes, thrombocytopenia have led my rheumy to the RA/lupus overlap. Its as yet undifferentiated, since the negative ANA means I dont quite meet the strict diagnostic criteria. Im taking methotrexate, tried hydroxychloroquine, which worked very well, but unfortunately caused some visual problems. Those are still being investigated, as it looks like retinal damage. So cant take the hcq now. I was only on that drug for 7 weeks, so its unlikely to be the treatment that caused the damage. The drug took away the rashes, bruises , cluster headaches and joint pain by 4 weeks. That also raised the lupus suspicion again with my rheumy!

I have irritable bowel syndrome, have for years. It suddenly got worse this last year, whilst my illness also became more active. I lost a stone in weight, and now weigh just 8 stones. Im 5 6 so Im a bit light . I have also started to have problems with acid reflux, which has affected my throat, making it sore and swollen. Im not as severely affected as you with gastro problems, but Im worried as these seem to continue to get worse.

I am so sorry that you are having such severe GI problems, sounds really awful hun. I haven't needed any tube feeding as yet. But just wanted to say hope you are feeling better soon, and that your treatment helps . Keep us informed about how you are getting onx

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check liver enzymes and get tested for Celiac disease. I have four autoimmune diseases all caused from a delay in dx of CD.

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Hey Amijanel You should get tested for Celiac disease too.

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Hi cvsv

Liver enzymes were fine, and I don't have celiac. But I just wanted to clarify something I wrote about the hydroxychloroquine - I was originally told the blurry vision was caused by the drug ( started 3 days into the treatment), but now my eye specialist is saying its unlikely after just 7 weeks. Personally, I think it was the drug! I had really good eye sight until I started treatment, and I was given a dose that was too large to be safe for my size and height - the opthalmologist wrote and confirmed that it was too much by 50mgs a day

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Hi,
Heres my story, first thought to have lupus, then got raynauds then told I have scleroderma, then UCTD with features of both now I have a muscle disease and neuropathy, along with hypothryoid caused by autioammune and high blood pressure, GI problems I feel like I cannot swallow, I have had my esphagus dialated twice, I have reflux and a microscopic colitis which is also autioammune, and add on photosenstive have to stay out of the sun. I am a mess too. I am so sorry that you have to join our elite little group. Right now I think they consider mine mixed, the muscle disease a mytosis, but my neurologist wants me to go to another neurolgist for a 2nd opioion. So on my way to chicago end of this month.
I am so sorry that you are on a feeding tube. Is it from the GI problems? Just awlful.
Susie

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Thanks so much for responding to me. WOW! I don't feel alone in this terrible journey.
I really will be tested for Celiac Disease. I never really thought much about it. Who tests for that?
I am on a feeding tube because of Chronic Pancreatitis. I developed Chronic Idiopathic Pancreatitis and I keep having acute bouts of it on top of the Chronic pancreatitis. So In order to rest my pancreas so it doesn't have to work, I have a J-Tube and now I can't eat anything at all. It is the hardest thing I have ever had to do.
I am facing a total pancreatectomy...I see specialists at John's Hopkins University and they are going to decide whether or not to do the life-changing surgery in December. Until then, I suck on mints and drink water. I am trying to be positive. Everytime I eat, I throw up, though, so I am doing all I can to get better totally.
I have been on steroids for so long that I have the effects of the medication. I am on CellCept, plaquenil, prednisone. and a host of other medications. I have hypothyroid and just am struggling to feel better.
I can't tell you how I appreciate all your feedback. Thanks for the support!!!

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Ariadne,
I am so sorry about the plaquenil. I know I have my eyes tested yearly. I wish you could have stayed on it. It has worked wonderfully for me. Is your eyesight permanently effected because of the plaquenil? Will it get better? I hope so.
I couldn't have imagined that being diagnosed with Lupus/MCTD 10 years ago, that things would be like they are now. I find myself fearful of the future. I am lucky to have a good support network, a great husband and family. But I am scared about my future. I feel weak and tired all of the time. I just am glad to have this network of people now who are where I'm at!

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Hi AmyJane, I am so sorry to hear you are struggling. It is very, very sobering for me to read you had my diagnosis 10 years ago and now you are where you are. I also was diagnosed with secondary immune dysfunction eight years ago and am on IVIG every three to four weeks to prevent infections. I think we just have to be really good to ourselves. If we can't do something, we have to say so.
Being on this board has helped me rethink a lot of things. Our priorities change, don't they? Please know you are in my prayers.

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I have UCTD and for several months had SEVERE gastro problems. All i could eat was smoothies, resulting in weakness and fatigue, (but some fantastic weight loss!). After endoscopies, gastric emptying studies, various drugs and months of agony, I discovered that it was a gluten allergy. Not celiac, which is more severe, but just an allergy. I was initially diagnosed with gastroparesis as well, but to do the test they fed me a sandwich which is, of course, full of gluten, so that kind of invalidates that diagnosis. I started drinking GI Fortify to heal my digestive tract, eliminated gluten entirely, started doing yoga, and after a few weeks was pretty much back to normal. I can eat now! I just have to be careful to avoid gluten. I miss cake, but other than that I can't complain.

I would try to determine if you have a gluten allergy or celiac. Also, check with your doctor to see if you can take GI Fortify. The stuff tastes nasty, but it does help heal your digestive tract, or at least it did for me. Good luck!

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Thanks Dana, I am definitely going to check on it. I am excited to figure this out. I just am confused. Who does the gluten testing? I just wonder what kind of doctor does the testing. Does a nutritionist? I would like to know if you know.
Thanks

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I had a blood test. I went to a naturopathic doctor who ordered it, but since it's a blood test, I imagine any doctor could order one if you request it. Although by the time the test was ordered, I was already pretty sure that gluten was the problem, since I had eliminated it weeks beforehand, and noticed that I felt better. I'm not sure if nutritionists can order bloodwork, but it couldnt hurt to ask. Don't worry, you'll figure out a solution! I know after a few months of smoothies and pain I was starting to feel really depressed and discouraged, but once you get this figured out everything will get better! Hang in there!

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Hi

I am like u. I have lupus, undifferentiated, sjogrens,
And more recently also a Mitochondrial Disease.
I have severe gastrointestinal problems with
Chronic intestinal pseudo obstructions. I'm
On TPN now. I was also on Cell Cept for over
8 years. Now I'm on plaquenil prednisone and injections
Of methotrexate. Did ur gastro symptoms happen
After u were prescribed cell Cept? Did it help your
Symptoms? I just wonder if that drug caused
A different problem in me. It did help my renal
Lupus symptoms though... I wonder if it can
Injured my mitochondria and caused other problems??

Take care

Linda

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Hi,
I hope you feel better. I have MCTD and have experience problems with my gastro over the years. No one has said much except don't eat this or that and change your diet. I also take some of the same meds. I'm still working. Are you able to work? I find such problems don't allow me to eat and I feel sick from the pills or just not eating.

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Hello,
I am new to this group. I am a mother of 3 with the most amazing husband in the world. He may not talk about my illness, but all the help he provides me says it all. I was diagnosed with MCTD a couple of years ago. When I was diagnosed my symptoms were only a nusence at that time. However over the past year or two my symptoms have become unbearable. Like many of you I am extremely fatigued, have brain fog, achy joints to the point I do not want to get up some mornings. I am currently on no medication because my doctor told me that there is no magic pill. (Currently have referral to new rheumy doctor) I have been in denial over the last couple of years however I am now so tired of not feeling well that I have to do something to help myself. I go from one cold to another without any rest in between. Is this normal, is there something out there to help boost a damaged immune system or is getting sick all the time something that we all have to deal with? I have had a couple of episodes over the last year where I am down and out of commision for a min of 7 days each - are others experiencing this at times?? I usually find it happens when I am on vacation, I think I stress myself out and end up even sicker than normal. I also have extreme ear pressure, dizziness and headaches all the time??
I have always been a very active and positive person and lately I am having a hard time because I no longer have the energy to do the things I once could. I am trying to be positive however I am having a hard time accepting that the way I am now may be the new me! I am so happy to know that I am not alone however also saddened to know other people have to go through what I am going through or worse. Thank you to all that reply in advance.

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Thanks Penny. you are right about being good to ourselves. I pray you are okay too. This board has been so helpful for me.

LindaZ, My gastro problems, I think have worsened with cellcept but the lupus has been so much better with the cellcept. We just don't know what to do so I'm staying on it for now. It has been more of a help to me, I think. I hated Methotrexate and I hate Prednisone and what it has done to my body. But I am weaning off of it. You sound a lot like me. You all do!!

Rockipa, I can't work due to my illness. I have been on disability since 2008. My doctors helped me get it right away because of my conditions. I am blessed in that regards. I am so sick I can't even stand long. I have to take naps and I'm not able to eat anything by mouth. I only tube feed.

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Shelley,
I am new to the group too. I have enjoyed meeting so many new people. It's so great getting to know everyone and what they are going through and that I'm not alone.
I wanted to say that first you need to find a good Rheumatologist. Please find a good one. They are your life line. I mean it. I could not have made it this far without my great rheumy. I mean it.
It sounds like you do need to be on some kind of medication. There is so many things that can help. I am on Prednisone, CellCept, Plaquenil and other things that have helped keep the Lupus/MCTD at bay. I have a lot of Gastro problems and can't eat currently. I am on tube feedings and have chronic pancreatitis.
Stress makes things worse, as you know. You have to have coping mechanisms. I do art and journaling. I find peace and comfort in that and in my wonderful husband. He's a great support network for me as yours is to you.
Don't deny your illness. You have to accept that you're not well and that being sick is okay. Just get into the doctor and see what you can get on to help you cope.
I hope you feel okay. I will pray for you today Shelley. I hope you will stay in touch. I enjoy new friends!
Ami

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My thesis: heal the gut and you heal most if not all of these auto-immune diseases. If you search pubmed, you'll find that researchers are making rapid progress in understanding the role of the GI tract in immune and auto-immune responses, that gut permeability and gut dysbiosis (bacterial imbalance) are the underlying villains in almost all these diseases, that gluten (in some people) stimulates the production of a protein called zonulin that opens the intestinal wall (makes it permeable) and allows food particles and toxins to pass into the body cavity. They must then be dealt with by the systemic immune system, which taxes it and confuses it. Probiotics and prebiotics useful in fixing the gut. Prebiotics include fiber and other bulk found in fruits and vegetables. Casein and whey also play a role in helping restore proper gut health but some people are allergic to these.

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I am on IVIG for secondary immune system dysfunction. It has made a huge difference for me. If I am up to date and get enough of it, (long story!) I don't get sinus infections. Before IVIG, I had three sinus surgeries in five years and they could not stop the infections. I do not do well during the infusions because I react to everything, but they do help a lot. My immunologist is sick and tired of me. It seems that by continuing to get sicker, I have pissed him off. I am thinking of asking my new rhuemy if she will give the IVIG....
I am really hoping that MCTD and seconday immune disease and celiac's are enough to qualify for SSDI. Oh, I also have interstitial cystitis. It makes me crazy at time, the daily struggle. Well, enough whinging. I have to get to work:)
Thanks to all of you on this board. It helps a lot.

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My MCTD meds and my stomach are not getting along. I am either constipated for as long as five days or I have gastric dumping, neither of which are comfortable. I dread going back to the gastro doc. I keep thinking it is something I am doing wrong. It is really hard to now get your self worth wrapped up in this whole trip. I feel like a loser..

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THanks guys for all of the advice. I'm going to get a gluten Test for celiac disease, and I appreciate you all.
Penny, I hope you have a better day...hope you feel better!
Sending love to you all!
Ami

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