Question about PCOS and Lupus

Hi, My name is Joy. I am 26 from Alabama. I am married with 3  children and I have SLE and PCOS. My lupus effects my joints and I have organ involvement. I also battle severe fatigue. I am also obese and need to lose at least 75lbs. This is difficult with severe pain from lupus and the added hurdle of trying to lose weight with pcos. Any helpful suggestions are very welcome!
Thanks,
Joy

Hi I have lupus too. I have had it since 1979, I was 14. I had VSG last Sept. I am sorry I don't have any suggestions to help you lose weight as I battled with that myself. I am also on pred which makes it harder. I still battle with that even with WLS. Maybe we can chat sometime.

Thanks for replying. I am on and off pred. too. Having lupus with swollen joints and extreme fatigue makes it much more difficult to get moving for weight loss. I am just trying to figure out how to fit in my pre-pregnancy clothes. I was already overweight, but I still need to lose 12 lbs to be back to pre-pregnancy weight.

I am new to this forum, but I wanted to tell you about a "diet" regimen that my family has been on for the past 10 months.  Please feel free to check out my profile for the "whole" story - I always tell people that "A kid with Down syndrome saved my life", because if it hadn't been for our youngest daughter being diagnosed with Celiac Disease, I never would have started on a "research journey" that has led me to discover a "diet" (actually, it's more of a lifestyle) that EVERYONE can live with for the rest of their life.

Have you ever been tested for Celiac Disease?  I urge you to get tested ASAP, as many seemingly unrelated health conditions (Lupus, PCOS, diabetes, asthma, arthritis, osteoporosis, obesity, infertility, just to name a few) can be caused by undiagnosed/untreated CD.  CD is a malabsorptive condition, and up to 40% of people who are diagnosed with CD are overweight, with 30% of that number being morbidly obese (this goes against what the medical community has been taught).  If you have CD (or Non-Celiac Gluten Sensitivity) and you go on a Gluten-Free (GF) diet, you will more than likely find that the pounds start to fall off without you doing anything other than eliminating gluten from your diet.

I know about CD because our youngest daughter was diagnosed with it last April (she had NO symptoms, it was picked up on a routine blood screening for kids with Down syndrome).  Since then, I have been on a GF diet and have dropped from 275 lbs. to 237 lbs. while eating all of the foods that I love.  It is, without a doubt, the EASIEST "diet" that I have ever been on!  The other benefit that I have found - quite unexpectedly - is that ALL of my bloodwork numbers have improved, the arthritis in my knee disappeared within 24 hours of going GF, and I have more energy than I did when I was a teenager.  The reason that all of this wonderful stuff happened is that for the first time in a long time my body was absorbing ALL of the nutrients that I ingested - it's that simple.

You may want to try a gluten-free diet for a while and see what happens.  I have been amazed at our family's results over the past 10 months.  Best of all, it doesn't "feel" like a diet at all!  Some people who have excess weight have Celiac Disease and don't know it.  There is a blood test that can be run, but if you don't have any other health issues, it is possible that you are just gluten sensitive.  Either way, the "cure" for both conditions is a GF diet for life.

The reality is that SO many more people are Gluten-Sensitive than have actual CD, but a person has to have a CD screen run first to determine if they do, indeed, have it.  Only 3% of people who have CD actually know that they have it, yet almost 1% of the general population is believed to have it.  That's a LOT of undiagnosed Celiacs!

If you go to www.celiac.com , there is a link there which lists all of the health conditions which are known and suspected to be associated with untreated Celiac Disease.  If you have 2 or more of those conditions, you are more likely to have CD.  Many people have their blood tests come back negative for CD, yet they still have problems, so they try a Gluten-Free diet.  If their symptoms clear up, they can safely assume that they are gluten sensitive.

The best thing about the GF diet is that we have been able to eat ALL of the foods that we love - REAL ranch dressing, baked potatoes with butter, sour cream, and cheese, Snickers bars, ice cream, chicken-fried steak with gravy, etc. - the only difference is that the flours that we use when cooking are gluten free (you can find these in many different stores or online).  We have been eating "full" fat foods (real butter, sour cream, cheese, etc.) and have actually lost weight and seen our bloodwork numbers come down significantly.  My doctor (PCP) was skeptical, but the results don't lie, and now she is looking into the GF lifestyle as "the way to go" for all of her patients!

I don't know where you live, but chances are that you have a Gluten Intolerance Group (GIG) chapter nearby.  They can be a wonderful source of information, and most GIG's offer a Restaurant Guide that tells you what is "safe" at various restaurants.  Now, be aware that if you want to have the same results as we have, you CANNOT eat any gluten whatsoever - there is no such thing as "gluten lite"......

My suggestion would be to request your doctor to run a Celiac Screen for you, and then do a "trial" GF diet.  You will want to do it for at least a couple of weeks, preferably for a month.  Don't be discouraged if your weight "yo-yos", because what will be happening is that your body will be converting fat cells into muscle, and muscle mass weighs more.  The weight loss will be slow, but it will be steady over time.  I have "lost" 5 pounds, then "regained" a couple of pounds back over and over due to this process, but the net result has been a 37 pound loss over a period of 10 months.  I would probably have lost more, but I like to drink Cokes, and I don't like to exercise.......

My husband told me that if I DID quit the Cokes and started exercising, I could probably lose weight faster, but I told him that I am "conducting a scientific experiment", and I can only have one variable.  Nobody believes me when I tell them that I am losing weight simply by eliminating gluten, so I am going to see how far this takes me.  So far, so good!  I am confident that I will be able to lose most, if not all, of my excess weight - it may take 3 or 4 years (maybe 5 or 6), but I figure it took me a while to put it on, so I can be patient.

Also, my skin isn't sagging like you see in so many people who lose weight so quickly on WLS.  Since I am eating so much dietary fat, my skin is actually kind of glowing now, and my face is nice and soft.  Plus, some of the complications that I have read about several years after surgery sound EXACTLY like the conditions that are seen in people with untreated CD - it can't be a coincidence that both situations involve malabsorption.  The main difference is that one of them (CD) is very treatable.  Even with a reversal, someone who has had WLS will NEVER get all of their intestinal tract back, so there will always be some form of malabsorption - not something I want to do at all......

One other website that you may want to check out is www.junkfoodscience.blogspot.com - a whole lot of food myths are debunked there, including the one about dietary fat causing heart disease.  There are LOTS of interesting articles on that site that you may find very interesting; I know I did!

Good luck, and please keep me updated!  I am always available to answer questions.  PM me, and I will send you my contact information –

 

Links to Obesity/CD Related Articles: 

Obesity, Overweight & Celiac Disease

 

Link to Essay about Gluten Sensitivity: (This is EXTREMELY informative!)

http://www.baumancollege.org/pdfs/articles/Gluten_Sensitivit y.pdf

 

Link to Celiac Disease / Gluten Sensitivity Symptoms:

http://www.celiac.com/articles/1106/1/Celiac-Disease-Symptom s/Page1.html
 
Teresa Koch
Fort Worth, Texas