Yes. I can't eat gluten, artificial sweeteners, MSG, maltodextrin, carregenan (sp?), and now I think other grains are beginning to bother me. I, too, make almost everything from scratch and avoid eating out. I suspect the grain problems are probably from their genetic modification and the pesticides used on them. In addition, environmental toxins bother me, so I make my own deodorant, use vinegar, baking soda, and hydrogen peroxide for many cleaning chores, and buy a phosphate-free dishwasher detergent. In addition to PM, I also have Lupus. On that forum there are several with food intolerances and/or nutrient deficiencies.

Hi Freelee, One of the things that really bothers me about DM/PM is a lack of good information on disease progression and what to expect. I am finding that some begin with gluten issues. It might be much more than just an intolerance to gluten. Inflammation followed by Infections are at the root of many DM/PM issues. Some autoantibodies or ANA are susceptible to possibly developing Crohn's, and/or Ulcerative Colitis. We must watch for pancreatic with intestinal inflammation.

I do not have a gluten intolerance, but I now have lower abdominal pains with a pre-pancreatitis type situation. I have done a lot of reading up on DM/PM gastrointestinal issues and it is not just a food intolerance thing. Asthenia-anorexia happens for some due to the inability to absorb nutrients in the lower intestines. A lack of pancreatic enzymes getting produced due to pancreas inflammation, and those pancreas enzymes help to digest food.

I had my doctor run the simple blood test of GGT and Lipase for pancreas enzymes along with my regular blood work. High Lipase means pancreas is not producing enough enzymes to digest your food. Pancreatitis is more wide range than just a gluten intolerance. We must ask more questions when bad diarrhea, lower abdominal pains, pancreas inflammation, and intestinal issues begin to happen. Our disease is complex. Read up on DM/PM gastrointestinal issues. Much goes on in our connective tissue endocrine communications. If you feel it is more than just Celiac, talk to the doctor. There are enzymes that can be taken to help digest food if the pancreas is not working properly. The GGT and Lipase test helped me with some focus. My Lipase is borderline so it is a watch and see thing. I hope this helps. Best Wishes

Freelee, I definitely have tons of food intolerances too. All of the things you listed plus soy, anything artificial, dyes and additives...diary is the only thing doesn't seem to bug me. I also have to be very careful with what kinds of lotions and shampoos I use as a lot of them add wheat protein and soy. I find the most natural products to be best. I try to steer clear of anything processed, and foods that aren't organic, Like Nanny, I think pesticides could be a big contributor to some of the symptoms I/we have. Definitely don't eat out too much either, but it has made my whole family healthier so that's a definite positive!

Thank you all for your responses. I love this forum as I don't have much contact with others who have PM or DM and it's so great to get this info from others going through the same things.

I cannot use cheap ordinary soaps, shampoos washing detergents etc either and have to use the expensive ones - at least the cleaning equipment (vinegar and baking soda) are cheap!

I will definitely read up on DM/PM gastrointestinal issues as I have been having quite a few problems with my digestion and bowel. Thanks all

Where have you all gone ?