My experience with gluten

I have noticed a few people here talking about gluten and lupus. I want to share my experience. This is the short story. For the past year I have been recovering from a huge lupus flare. In the past month my energy has become stronger and my physical endurance is more. I have been gluten free 95% of the time.

Also, in the last month I moved into a new apartment. This was a strenuous move for me for many reasons. I have been eating more fast food, and got off my healthier diet. This morning my spine is in pain, it feels like the muscles are tight. Fibromyalgia feeling. I have been having darker thoughts about myself and the mistakes I have made in the past. I have been isolating more just comfortable to be home.

Now!! I realize these symptoms could be fatigue and depression but I believe it has to do with the increase in gluten and sugar. My body can not process this food and it tastes oh so good. I will share I have learned the big companies like Mc Donalds hires scientist to make the food taste irresistible.

for me gluten is a big problem. Digestion is affected big time also. My ability to write this has been compromised as well.

I haven't been diagnosed with Lupus yet, but I do have a lot of problems that could stem from Gluten. I can definitely relate to the MacDee's being "oh so tasty!" I'm a long haul truck driver/delivery driver; and when I'm on the road all I do is eat out three times a day. Well, I used to until I got sick two years ago. Now that I haven't been working for a while, I only eat out a few times a year, as opposed to every single day. But I'm still eating a lot of bread and sugar which I need to stop because I've recently been diagnosed with type 2 diabetes. If I am tested for Celiac when I see my Rheumy - of which I was supposed to see this Tuesday, but he switched my appointment because he is not going to be in the office that day, I will be devastated. That is two diseases that require you to give up bread and I don't know if I can do it. The lonest I've ever made it on a Gluten free diet is one week. Then I went crazy and ordered a pizza. Also, being less active due to blood clots and massive daily fatigue, I have hot been preparing my own food for weeks now. I have been eating a lot of pre-packaged microwaveable food. I also suspect that is a lot of the problem, as most pre-packaged food is loaded with "high fructose corn syrup!" I think you need to stick to your diet most of the time, but don't deny yourself a treat every once in a while. After all we're only on this earth for a short period of time - we have to enjoy ourselves sometimes. I can tell you I used to be a huge foodie before my blood clots hit. I think the Warfarin has shrunk my stomach, because I can only eat half of what I used to eat before my illness began. I also don't enjoy the food as much these days due to chronic pain taking the center stage in my life. Any how, the only advice I have for you is to stop eating the good stuff and get back on your strict diet. If that reduces or causes your current symptoms to completely remit, I would say that it's the fast food that is causing your current flare-up. I hope you feel better soon.

Blizzard you seem to have convinced yourself that eating foods that are going to promote your health is some kind of a punishment. Maybe it would help you to change your mindset and realize that you are actually rewarding yourself with better health by your having a diet that is suited to your particular health issues. I wish you better health.


I am sorry that you are having this 'flare' right now. By your own words it appears that you know what you should do for yourself as far as the gluten free diet is concerned. I am new to being diagnosed with Lupus/Sjogrens three months ago. But I am not new to the symptom's. I started a gluten less diet at the time of my diagnoses at least 85% gluten free. At that time my blood pressure was a roaring 185/110 consistently. The different BP meds that the doc was trying were not bringing it down and they were actually making me sick. Well, I had a doctor's appt. 8 days after I started this gluten free diet and had not been taking any BP meds. When my blood pressure was taken at the Rheumatologist it was normal. I though it was a mistake, I had bigger fish to fry that day and I didn't give it much thought. The next week I had a regular docs appt. and my blood pressure was normal again. He had previously prescribed a BP med which I had only begun taking two days prior to my visit with him so it could not have been the BP med that was causing my blood pressure to be normal. I have been taking my own BP at home at it has remained normal (124/84). This is without any blood pressure meds at all for the past two and a half months. I can only attribute this to my not eating foods that contain gluten. Before this I thought that this 'gluten free diet' stuff was hype and that these people were just trying to sell certain products to make themselves rich on the backs of people who were sick and desperate and looking for a way to regain their health and feel better. But after checking out a few sources on gluten I decided to give it a try, I figured it couldn't hurt. And, well, the proof is in the pudding as they say. I have found a couple of you tube sites that you might find helpful: Dr. Tom O'bryan and I hope you feel better soon and that these sites are helpful for you.


Not eating glutin has mafia a huge difference in my life! ! My blood work is normal. I have had diarrhea for 5 years and now it’s gone. Never went to a doctor for it

Mafia?? Where did that come from? ? Should have been made

I think this is an important part of healing for many of us. Thank you for all your input :slight_smile:

The more gluten/sugar/dairy I eat, the sicker I get. No doubt. I currently have undifferentiated mixed connective tissue, Wells Syndrome, chronic depression, fibromyalgia, and just last week: rheum arthritis! Yippee! But seriously, those are the medical labels thus far and the most relief I have found has been with massage, meditation, gentle yoga/stretching, acupuncture, and changes in diet! Everyone be Well!

Wow! I have been learning so much since I joined this site a couple of weeks ago. I am almost certain our fast food diet has a lot to do with Lupus and also in my case, PSC. My guess is that we have some kind of reaction to junk foods and processed foods and their additives and preservatives. My doctors have said that diet has nothing to do with it. With the exception of my high cholesterol levels. I have cut out most of the sugar, bread and heavy dairy products, also commercially packaged cereal. I eat a sprouted grain bread called Ezekiel. There are different varieties in the supermarket freezer. I don't like it, but with low sugar marmalade, I find it more palatable. I also now read all labels or don't buy anything that has high fructose corn syrup. I have added lots of fresh herbs to my cooking. I now also eat quinoa instead of pasta. Dr. Steven Masley, has a heart nutrition program that I just started following this week. (I had a heart attack in 2010 at 54 and I am skinny) He says to cut out all flour products as it turns to sugar when we eat it and sugar leads to inflammation. The problem is, I love cheese and bread and cookies and ice cream and pizza.......darn!

I switched to Almond milk, yuck! Don't like it. But it's okay in my oatmeal. Am also now trying a fruit and greens smoothie in the morning. I am trying to eat more salads and taking supplements, like Fish Oil, Vitamin D3, Vitamin K2,

B complex, Calcium citrate, Magnesium (not the type that is magnesium oxide), and a multi-vitamin. Also CoQ10, since I am now also on cholesterol medication. My body has been disintegrating quickly over the past 5 years. Though I have not experienced a serious Lupus flare-up since 2006, my muscle mass, bone density and tendency to bruising that either does not go away at all, or lasts for weeks. At this time, I have moderate cirrhosis of the liver (due to my PSC); a stent in my heart, very high cholesterol, very abnormal blood test, especially in coagulation, an englarged spleen. And yes, I am so tired all of the time and also have days of depression and self-imposed isolation. But I am still able to work full-time, so that keeps me going. As well as my son, my mom, family and friends and lots of prayer.

That would be my next step besides changing my diet to wholesome foods. I need massages, meditation and yoga!

Kari said:

The more gluten/sugar/dairy I eat, the sicker I get. No doubt. I currently have undifferentiated mixed connective tissue, Wells Syndrome, chronic depression, fibromyalgia, and just last week: rheum arthritis! Yippee! But seriously, those are the medical labels thus far and the most relief I have found has been with massage, meditation, gentle yoga/stretching, acupuncture, and changes in diet! Everyone be Well!

I agree with you, gluten is a big cause of a whole lot. Much more than people know about. Thank you for bringing that up and hope you continue feeling better.

I am so frustrated because I have been gluten and sugar free for months, all organic diet, and feel no better. Maybe even a little worse. I don’t understand!

Maybe dairy it is a problem for me


I am so sorry you not feeling well. I have found the web site to be helpful, I hope you find it so as well. We are praying for your better health.