The Latest Gluten-Free Food Recalls

I need scientific proof that touching a door handle can cause a reaction in your intestines. My doctor told me that gluten has to be ingested to cause the reaction to the peptides with gluten that cause your immune system to overreact and kill the cilia within your intestines. I believe spreading incorrect information on how gluten effects the body is a disservice to the millions of gluten allergy sufferers like myself, that struggle with, and repeatedly needing to explain gluten allergy to the population who doesn't understand it, and sometimes even doesn't believe us because it's not like a peanut allergy in which, its a literal exposure-reaction type allergy that is obvious.

Hi,

Thank you for your interest in my blog. I am certainly not trying to spread inaccurate information and I am sorry you misunderstood what I was intending. To clarify, touching a door handle will not get you sick, but touching a door handle and then biting your nails, touching your mouth, touching your food, are a few ways that touching a contaminated door handle can lead sensitive gluten sufferers to getting sick. Additionally, there are varying levels of gluten sensitivity; including, celiac, gluten-intolerance and gluten allergies. These all create different reactions from gluten contamination, and everyone has a different level of sensitivity. And for some people, gluten allergies are very much like peanut allergies.

Take care,

Destiny

In response to Destiny's blog I can certainly understand her being extremely careful when it comes to any possible contact with gluten.I am 70 yrs old and have had gluten intolerance symptoms since I was preteen. My husband actually diagnosed me as having celiac disease approximately 2 mo ago.I have been to my primary care physician and have told him and have an appointment with my gastro doctor in about 3 weeks. I have had 3 exploratory surgeries and about 20 inches of my large intestine removed and my last surgery was an emergency due to complete intestinal blockage in my small intestine. My intestine gets a "kink in it like a garden hose"--that is a direct quote from the first surgeon who operated on me in 1978.He said he latched my intestine down in 3 places so that it could not kink on itself. While I was still in the hospital following that surgery when I started eating food again my intestine started twisting on itself. The next surgery was to take out 20 inches of my large intestine and when I started eating food again the pain started again.I told my surgeon but he did not want to hear it. Suddenly his pager went off, so he said, and he was needed at the nurses station. I have been to some "supposedly" very reknown gastro physicians & have been sent by one of my GI docs to Houston,TX to a doctor who had been doing research for years & had recently started seeing patients in the Houston Women's Center. When we asked what we could eat for lunch one of the days while I was being tested the doctor told us a good Italian place & said to have the angel hair pasta. I hurt like crazy. I was diagnosed once by an alternative type doctor as having celiac disease but he did not tell me to leave off gluten he just sold me hundreds of dollars worth of vitamins and every time I went back we needed to add another supplement so it was another $500, which of course insurance would not pay for. Since the cause for celiac and what you needed to do was not explained to me I continued to eat gluten and on my next visit to a regular MD I told the MD of the diagnosis and he just looked at me and told me that I did not have celiac disease without doing any testing and I continue to get kinks in my intestine on an almost daily basis. I have lost count of the times that I have been hospitalized but I would say between 40 to 50 times for testing, colonoscopies, every test that you can imagine but no one ever did a biopsy of my small intestine. I have been off gluten for about 6 weeks now except for cross contamination at a buffet recently. We told the manager my problem and he personally grilled me chicken breast, corn on cob & I had a baked potato. I started hurting like crazy in about 45 min to 1 hour. We realized that the manager who was being as nice as he could be had contaminated my food by using the tongs & putting my chicken on the grill where chicken that had been marinated with something that I could not have had been cooked. No, I will not go back & eat gluten just so that I can have a biopsy to check my small intestine. I am the one who bears the pain. After years of being told that it was all in my head, had the doctor tell my husband that he thought that I just pulled this "attacks" to get attention,etc. my diagnosis is celiac disease.I was diagnosed with it by an alternative medicine type doctor and I am sticking to it. I was forced to resign my position at the University of Oklahoma in 1998 due to constant pain and I had 4 surgeries within 18 months. I had a lot of unusual symptoms that I now realize were the result of the gluten. Now that I no longer eat it a lot of my health problems are improving. I am sure after a year I will be feeling much better. But when I think of the thousands of dollars we have spent going on another goose chase because some doctor who knew less about my problem than I did had me running in circles.

Shirley, your story just makes me heartsick that you have had to go through so much. I pray that you will continue to heal and your life will have some relief and comfort.

Cindy

Destiny,

I really like your list! Every little thing we can do to stay healthy is worth it, no matter how much we are misunderstood. I have been super cautious about touching things that can be contaminated, like door knobs or my own steering wheel, and especially my children! I want to add a couple of things to your list. Everything that you put on the conveyor belt at the market is potentially contaminated. Look at the grooves along the edge of the belt and you'll see white powdery crud. Every bag of wheat flour that is set on the belt leaves a trace of white powder. (Is there some way we could get them to package it better?) Plus every item is touched by the clerk, so he/she touches all the gluten products and then each of your products. So I wash everything when I get it home and throw away all the plastic produce bags and replace them with my own from a box. Also, I am unable to go to the market in the morning when there is still flour in the air conditioning system from the night's baking in the market's bakery. I keep my mouth closed and try not to talk or stay in there too long even later in the day. Costco is a great place to get glutened! I take a gluten ease after shopping which really works like a charm. One more comment about paper towels. The brand I use has the first sheet "glued" down to keep it from unrolling and the last sheet is also "glued" to the cardboard roll. I don't know what the glue is made of, so I use those sheets to wipe up the floor...and then I wash my hands!! Keep up the good work...I love your recipes.

Dear Shirley, I feel so bad for your lifetime of pain. I have been having a lot of GI track problems myself for the past 3 years. I have had many tests, even one for Gluten intolerance and told that's not it. They believe its IBS but some how I don't think so. There is no relief from the pain and all the other nasty symptoms. My last resort is to look into the Pillcam which I saw on Dr. Oz's show. You swallow a small camera the size of a large vitamin pill. It travels through your GI track for 8 hours before it naturally comes out. During its travels it will take 60,000 pictures of your insides. It checks for all diseases and disorders. I have heard it costs about $1,000 to do this but it certainly sounds like something necessary. I have to research more to find out where this can be done. Let me know what you think. Good Luck, Penny

Penny, before you spend $1000, why not try some experimenting with diet? I've learned from experience that my body pain is 100% related to my digestion. Since grains are hard to digest, try eliminating them for a week. Have you ever tried the Blood Type Diet? It has been so helpful for my whole family. It's easy and it won't cost anything. It's worth all the inconvenience for the results. Order a used copy of "Live Right 4 Your Type".

Hi Destiny,

Thank you for all the great ideas- I have my paper towels & am cleaning all my doorknobs! Elizabeth Hasselbeck from The View-she has celiac & that is only reason I knew I had it--my doctors did not diagnose me until Elizabeth Hasselbeck was on TV and she talked about her new book & my BFF called me & said that's exactly you--you have celiac! Please where can I access newest info on gluten induced brain fogs like villi intestine problems with celiac is appreciated.

xoxo

Hope

Hi Destiny

I have all the same problems and many of the same strategies - it is hard to get people to realize they are spreading what is in effect a poison on every surface. People get upset when you offer to bring your own food / not eat but there isn't really any other way to be safe in a normal house. Toiletries are a problem too, as lots of them have gluten in - including soap to clean your hands!! I had to look after my step-daughter and kids after her surgery, and the only way I survived was to walk around with my pockets stuffed full of paper towels and put squirty soap next to all the sinks just for me. I get fever, migraine and chest infections as well as gut problems so would not have been any use if I hadn't done this.

I live with someone with the same problem. 10 parts per million of gluten is too much, but how much is that? Here is an analogy, the average novel has about 100,000 words. 10 parts per million is like having one word in the whole book that should not be there. Do you think you would spot it? You might not, but if you are very gluten intolerant your gut might.

Tip 11: keep a set of Gluten-Free potholders in a Ziploc bag & mark it with a Scripto marker so no one else uses it. Potholders cross-contaminate so have your own!

I think it's so crazy how we all blindly follow what our doctors say. If we've all learned nothing else through our own personal struggles for a diagnosis, it should be that doctors know VERY little about this disease!! I also believed that gluten needs to be ingested to cause damage to my body, however, shortly after diagnosis I had to scoop out 15 pies at work. I suppose I spent a good 4 hours scooping out mini samples of pies. At the end of the day my hands were red, swollen, itchy, burning and the skin was peeling off. We all have our own stories to share, and personally I love hearing about them. The more I can learn about celiac, the better for me and my daughter, who also has it. In fact, before my daughter was diagnosed she used to have such bad itchy skin, I would have to tape her skin up to keep her from scratching through the blood. After waiting 4 months to see a pediatric dermatologist I explained my recent celiac disease diagnosis and asked if that could be my baby's problem. The DERMATOLOGIST told me that celiac disease does not affect your skin! So you see, respondent number one, you need to research for yourself and listen to your own body. Many doctors know less about this disease than the people that are suffering from it.

Was looking for a few new recipes today when I came across this thread. My daughter has celiac - my mom diagnosed her when she was 2 - the Dr's not until she was 15. Lots of painful years between. My daughter has two small children that had to remain gluten free for their first two years of life - they can have gluten away from home but home is glute free. There are times that her husband has something that has gluten in it but that is rare. It is kind of like the old saying if mama ain't happy nobodies happy -- if mama is not well than who takes care of the rest of them ?

My daughter is very sensitive and practices great hand washing etc - be prepared to be the baker etc when you have grand kids - it will help cut down on your cross contamination.

good luck to you all -

Doctors learn a lot in Medical school, but, face it, they are human beings - not a super computer so what they know is limited. It took me 25 years and, countless doctors and a fortune to find out I had celiac. The only reason I found out is I lucked upon a doctor who has gluten sensitivity herself. But - get this - she still seems to know very little about it! I am super frustrated over the scarcity of concise information out there. So the next time you feel like your doctor is stabbing in the dark; you are probably right.

Hi Destiny,

Are there any special steps you follow for rinsing and soaking rice and beans? And do you prefer canned or dried beans?

Also, I'm struggling to find lentils I can tolerate. If you've found a solution, or have some suggestions for how to soak/rinse, that would be great too!

Thanks for the helpful blog.

Has anyone heard of paper sacks having gluten in them? My cousins told me about a quick, healthy way to make popcorn in the microwave: add popcorn and cooking spray to a paper sack and put in the microwave for about 2 minutes. The popcorn is amazing! But ironically, I've suffered for 2 days with gluten symptoms, and using the paper bag is the only thing I've done differently. Is this possible?

Some popcorn has gluten in it. Did you check the label?

My kitchen sink ended up being a big source of gluten contamination, because of the basins themselves. I frequently used the garbage disposal to dispose of my cat's leftover food. Her regular food was gluten-free, but her treats were not. I would put them on top of her food. I believe my sink basin was getting contaminated from her food and who knows what other foods before I went gluten-free. I was under the mistaken assumption that just rinsing the basins with the sprayer was enough to clean them. One night, when washing dishes and praying for guidance on finding other sources of gluten contamination, I looked down at the sink and noticed the stains there. At that point, I pulled out a Brillo pad and scrubbed them clean, and, wow, they looked like new! I always thought the stains were from age and use, but they were just from dirt and grime. After that, I realized all my dishes, utensils, etc. were contaminated from the sink, so I proceeded to clean them all in the dishwasher. I also had to throw out food that had come into contact with the utensils or were stored in containers washed in the sink. Some of these were even replacements for previously contaminated food items. Not considering my kitchen sink as a source of contamination was a very costly mistake, and it ended up being one of my biggest contamination sources. I also felt better after switching my cat's treats to gluten-free ones.

Just to be clear, celiac disease and Non-Celiac Gluten Sensitivity are covered under the umbrella term "Gluten Intolerance." Also, it's important to understand that while there is such thing as wheat allergy, there is no such thing as gluten allergy. Additionally, according to a leading dermatologist at this year's ICDS conference, gluten can be introduced to the bloodstream through the skin if the skin is compromised from such things as a cut, abrasion or rash. It does NOT need to be digested to enter the bloodstream.

Wow, I am sorry that a dermatologist made that representation to you. I was diagnosed with dermatitis herpetaformis 23 years ago. This is a form of celiac disease that also affects the skin. I was diagnosed by a panel of dermatologists at the University of California, Irvine after a series of skin biopsies that were then tested using immunoflouresence. Even though my husband is a rheumatologist who specializes in autoimmune disorders (celiac is an autoimmune disease), we still had to force another round of testing when the first round yielded a differential diagnosis (which meant, in my case, that it could have been one of 3 different diseases, all of which had different treatment protocols). Prior to the biopsies, which were prompted when my skin began spontaneously blistering (which, apparently, narrows down the diagnosis options considerably), I was diagnosed as have chronic urticaria, which doesn't mean much more than "I don't know what you have." So, I can understand your frustrations and those of many others who have a diagnosis story to tell. My level of gluten sensitivity is extremely high and I now no longer allow gluten in my home with very few exceptions. I avoid being around gluten as much as possible. I have almost gotten to the point of wiping down my grocery items. When I am around my small granddaughters, I wipe their hands down after they have something containing gluten. To outsiders, all of this can look mighty peculiar, and I did not find it was necessary to take all of those precautions during the first 20 years after my diagnosis, but I find that I must take these measures now to control the DH in my skin. There is oral medication for DH called dapsone, but it requires blood monitoring and I am not willing to go down that path yet. There is also a topical dapsone designed primarily for acne that helps some patients with DH, but it did not work for me. Hope any of this helps.

Door handles? Really? So I take it you never shake anyone's hand either then? I think the problem here is the amount of weed Destiny has smoked and her resultant paranoia.

This makes me so upset. I suffered for years starting in about 2005 with crazy skin issues. I went through allergy testing ( they did not test for food allergies even though I insisted I noticed that my issues were always worse after eating). For about 1 year I felt so ill I thought I may be dying. I was put through a series of tests from my pcp and a dermatologist. I showed a vitamin D deficiency at a level that was only 12 – this is very very low and had other results that indicated I may have lupus. I was also showing is prediabetic all of a sudden. After getting nowhere with doctors and no one getting any closer to what was wrong with me other than telling me that it was likely that I had an autoimmune disorder – my PCP ran a liver test which had an abnormally high result. I am not a drinker nor have I ever been and I don't take any type of drug. I explained to my PCP that maybe I would have two glasses of wine a month if that and was made to feel that I was lying. This was in 2009 by this point. So I stopped going to the doctor all together in 2010 and I decided to try eliminating gluten from my diet just to see if it would make a difference. I also started taking some additional supplements of vitamin D and vitamin B12 to name just a couple. Within one year I felt like a completely new person. I felt like I had my health back. I had started taking my own blood sugar which was within normal range every day. It was about this time that my daughter started to have some issues hers were mostly stomach and intestinal related as opposed to the skin issues that I primarily had. I suggested she eliminate gluten from her diet for a couple weeks just to see if it made her feel better as it it helped me so much. It made such a difference in how she was feeling she mentioned it at the doctors. He wanted to do a test for her to see if she was gluten sensitive. Long story short after the blood test and then after the EGD she was diagnosed with celiac . Her doctor said that because celiac is often genetic it is very likely that I also have celiac. By that point because I had been basically gluten-free the thought of having to eat enough gluten to go through the testing was not something I wanted to do. I did however decide that I would go ahead and do it because I wanted to just have the official diagnosis to help make it easier for people that live with me to understand that I need their support.Unfortunately when I finally decided to go to a new PCP here in Irvine California in 2014 – keeping in mind that the last doctor I had been to was in 2010, she would not entertain even testing me for gluten. She would not entertain the possibility I may have celiac even though I told her what my daughters dr. in Massachusetts had said . It's so frustrating and I am going to contact the other blogger on this page who stated she had gone to University of California at Irvine to be tested. I need to find a Doctor who actually believes that celiac is a real disease. I am not in a gluten free household now as my husband and other family members that I am now helping care for do not really understand how devastating gluten is to someone who has a sensitivity and I'm so tired of trying to explain it .