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Newly Diagnosed with Lupus

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Posted 12/2/2014 10:30 PM (GMT 0)
I came across this site doing some research on Lupus. I have been diagnosed with Lupus and I am kind of in a whirlwind. This whole journey started with a severely distended stomach (and bloating) and constipation. The symptoms have gotten progressively worse like fatigue, pin prickly sensations all over my body, finger swelling, severe fatigue, anemia, leg burning, GI problems, nausea, etc. But the distended stomach has gotten progressively worse. I am a lot of pain around rib cages on both sides, flanks, and mid back. I am really have difficulty dealing with it. My bloodwork came back with high creatine at 1.1 (Normal .5-.9) Carbon Dioxide high 31 (Normal 21-29) and the eGFR 53.9 (Stage 3 Kidney Disease 30-60). But when my Doctor reviewed them she said my Kidneys were fine. I questioned her as it related to my abdominal. I asked why is my abdominal like this? She responded it was the Lupus. I asked her if there way a way drain me or relief the pressure and pain as I am not eating food and just sipping on gatorade (for a few weeks) she responded with Nexium and told me to be safe she would order a CT Scan. I don't understand what she meant by "the abdominal distention is the Lupus". I see the Rheumatologist on Dec. 18th. I am hoping to be able to hold out that long. I just keep expanding.:(

Thanks
Posted 12/3/2014 1:04 AM (GMT 0)
Ask to be put on a cancellation waiting list for the rheumatologist. Maybe you can get in earlier. Tell the scheduler why you want to get in earlier and he/she will most likely try very hard to get your appointment moved up.
Posted 12/3/2014 1:14 AM (GMT 0)
Lupus is an autoimmune disease that can affect almost any part of the body, most often the joints, skin, kidneys, heart, lungs, blood, brain and your gastrointestinal (GI) system. Lupus can also affect the gastrointestinal (GI) system. That was probably what she meant by "the abdominal distention is the Lupus". Remember, that GI system is your body’s pathway for taking in, processing, and disposing of everything you eat and drink. And people with lupus may experience problems in any area of the GI system, including the surrounding organs such as the liver, pancreas, bile ducts, and gallbladder.
Posted 12/3/2014 1:29 AM (GMT 0)
Sally, Thank you very much. As I research I am learning about this very quickly. I lost my large intestines 12/20/2011 for "colonic inertia". I had the same exact episode I am having now. This prompted me to start with the GI as I figured my small intestines were going like my large. I lost alot of time during this episode and stumped the GI. As I look back, I can't help but wonder if I had this testing done prior to my colectomy surgery if I would have been diagnosed with Lupus. I can trail back episodes exactly like this back to 2008. If this is the case then Lupus love my Gastrointestinal system!! Lol.

I am seeing a lot about diets for people with Lupus. My hobby is bodybuilding and competing which has a heavy protein intake. I am assuming I will need to scale back on protein.

Thanks so much for responding.

P.S. Kimstph- I am going to call and get bumped. My GP nurse told me there's only one girl that is processing referrals and it was going to be a few weeks before I even get a call from the Rheumy. I called the Rheumy in the parking lot and talked my way into the appoitment on the 18th :)
Posted 12/3/2014 2:56 AM (GMT 0)
Stomach distension would be an unusual first symptom for Lupus. However, if you have been eating mainly protein for a long time you could very easily be having some kidney issues. I would suggest cutting back some on the protein and getting some fruits & vegetables aboard while you wait for the rheumy appt. Also drink lots of water!

I DO NOT suggest you try any of the "anti-inflammatory" diets you may be seeing suggested for Lupus. Depending on what is really going on, these can make things significantly worse and should only be tried with the rheumies knowledge and consent. With Lupus, our systems work backward and it's difficult to determine which of these diets are beneficial vs. harmful; plus they may be trying to do the opposite of what any Lupus meds may be trying to do.

It is important that you include information about your diet, vitamins,and supplements as well as symptoms when you report to the Dr.

Best wishes,
Posted 12/3/2014 3:12 AM (GMT 0)
Lynnwood, Thank you so much for response. It was very helpful. I had other symptoms appear before the abdominal distention but I scoffed them off as something else...lol. It started with hair loss, awful fatigue, joint pain, muscle pain (charlie horses), iron deficient anemia, arms falling asleep/losing circulation at night, constant back and neck pain, knee joints hurt and painful, etc. Since I weightlift and train intense 6 days a week and do large amounts of cardio, I would blame a symptom on lifting too hard or doing too much cardio :) I took myself off of all supplements and I am not going to take the Nexium the GP gave me today. Right now, I am not eating much of anything. When I eat it's like a full out war in my abdomen. I eat and it becomes so painful and hurts. My stomach distends even more, I end up in a ball heaving and vowing no more food. I seem to have it somewhat controlled on Gatorade 2. I can eat a handful of saltines without too much pain. That's pretty much what I have been living on for weeks.

I will talk to the Rheumy about diet options.

Thank you again. :)
Posted 12/3/2014 4:52 AM (GMT 0)
Can you drink something like Ensure or Muscle Milk to keep up the nutrition you need? You really need some nurishment.
Posted 12/3/2014 12:48 PM (GMT 0)
That's what I wanted to do as I drink Protein Isolate shakes post workout and my GP told me to cut all lactose out including the shakes due to the abdominal problems. I am not lactose intolerant :( so I may do some to hold me over. I really don't have any appetite anyways. :(

I have a question about the fatigue. Up until a week or so ago. I would sleep for 10-13 hours and still be fatigued. I would make it 3 hours and then I would fight to get through work go home and sleep for 3 more hours. Now I am so fatigued I can't sleep. I am getting about 4 hours in between the itching, all over pin prickling sensations all over. I am so fatigued that I can't sleep. Is this normal?
Posted 12/3/2014 4:40 PM (GMT 0)
Yes, that kind of fatigue is normal with auto-immune diseases -- it also can occur with other illnesses. Fatigue was my first (debilitating) issue!
Posted 12/3/2014 5:54 PM (GMT 0)
Thanks so much Lynnwood! I appreciate your help! I feel like a hot mess right now :P
Posted 12/3/2014 7:54 PM (GMT 0)
Are you avoiding UV rays? They seem to trigger flares.
*sunlight
*fluorescent lights (CF bulbs too)
*tanning beds

Any thing that emmits UV rays makes me itch, get rashes, and increases fatigue for me.
Posted 12/3/2014 9:04 PM (GMT 0)
I am now(past 2-3 weeks). I went to Florida the first week of October and hung out in the sun the whole time. Also, I was tanning in a tanning bed starting in July (which is also when I started having this episode). :( :(
Posted 12/4/2014 1:13 AM (GMT 0)
You are welcome @Girlwonder. In terms of the diet, good nutrition is an important part of an overall treatment plan for the disease. There are no food that cause lupus or that can cure it. However, healthy food can at least reduce inflammation and other symptoms, maintain strong bones and muscles, combat the side effects of medications and reduce the risk of heart disease. Get more calcium-Rich food and limit saturated and trans fats.
Posted 12/4/2014 1:32 AM (GMT 0)
Sally Walker -

Do you have Lupus? I see you have never posted here before and am curious as to what your background is. We tend to be a community of equals who have experience with the illness; would love to have you join if you have auto-immune diseases like Lupus, MCTD, UCTD, that sort of thing.

Thanks.
Posted 12/4/2014 8:10 AM (GMT 0)
Lynnwood -

I know someone, a childhood friend who have this. I felt really sorry for her so I'm helping her recover from it. I joined some forums which talk about Lupus and found this one. Aside from researches, I'm hoping to gain more knowledge about it and it's treatment. Thanks for asking by the way.
Posted 12/4/2014 12:06 PM (GMT 0)
Girlwonder, what about shakes that are meal replacement rather than high in protein? They are available in lactose free as per your rheumy's instructions. Lactose/dairy increase stomach acid, maybe that's why it was suggested.

I have been having a horrible time lately with eating. I end up with nausea, pain, bloating etc and those type of shakes have really helped me. Also soups, juices and smoothies. They are easier to digest.

Sometimes Lupus/autoimmune disease will cause inflammation in the digestive system. That's what my drs suspect is happening with me.

If you aren't willing to take the Nexium then maybe try to lower any acidic foods you are eating if the rheumy suspects an acidic stomach as part of the problem. Citrus, tomatoes etc.

I was prescribed Tecta which lowers acid. I was the same and didn't want to take it. Well I caved last week and started it and it is helping somewhat.

I know what you mean about not wanting to eat but I'm finding personally that not eating is not helping either. Soups, smoothies, well cooked veggies and easy to digest foods are not as painful. You need to have something in there for the acid in your stomach to work on else it will burn itself up. Also you may want to reconsider the nexium, even if just for a short while.

I hope this helps!
Posted 12/4/2014 3:23 PM (GMT 0)
I have been going back through my bloodwork From October. I had iron deficient anemia, elevated LDH. The GI tested me a week later and had a manual differential. I had high RDW, low MCHC, slight anisocytosis and slight macrocytosis. In addition my absolute lymphocyte count was low. I've read a few medical research papers this a.m. and it looks as though they point to lupus and/or autoimmune hemolytic anemia which goes hand in hand with lupus. Does anyone have experience with either?
Posted 12/4/2014 7:58 PM (GMT 0)
I know I've been told my stomach problems are separate from Lupus, even though I know they get worse when I have a flare.

I have horrible distention too and I've found the best thing for me personally is the low FODMAP diet so that may be worth checking into! You may also want to have your gastroenterologist test you for SIBO as well.
Posted 12/5/2014 2:35 AM (GMT 0)
Muscle milk is lactose free I believe. I hope they get your stomach better soon.
Posted 2/23/2015 3:47 PM (GMT 0)
My daughter was just in the hospital for the second time with gi problems. The doctors did a cat scan last year and it is Lupus enteritis. Same problems as above distended abdomen, constipation, gerd. She is currently getting cytoxan for her kidneys but has not kicked in yet to help her gi problems. Lupus enteritis is really vasculitis of the gi system.
Posted 2/23/2015 9:20 PM (GMT 0)
Have you also considered other diseases like celiac and/or Cohn's disease? It could be something like that as well as lupus. Possibly high estrogen. I'm sensitive to gluten, wouldn't surprise me if I had celiac disease. But within a few hrs after eating certain foods it will tear my stomach up like there's no tomorrow.

Someone else mentioned lactose. I thought I had lactose intolerance, until I visited Europe and drank the milk in Europe and didn't have a single problem. Came back home and the milk here made me sick. I'm allergic to cephalexin (related to penicillin) and apparently in the US it's standard to just give cephalexin to cows to prevent infections and it winds up in the milk and growth hormones exacerbate that issue so they wind up using more antibiotics. I drink rBGH free milk now.

You might like to keep a log of the foods you eat and the symptoms you experience and when they occur. Hope you get some good doctors with sharp minds and sound advice.
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