About Me

Hi! My name is Jess and I am a wife, mother, physician (Neonatologist) and runner with celiac disease. I was diagnosed in 2010. Looking back, I began to have signs and symptoms of gluten sensitivity by the time I was eight or nine years old. For full details of my symptoms prior to diagnosis, click here.

My goals for this page are to share my story (both the good and the not-so-good), discuss my experiences living gluten free and raising gluten free kids, to summarize the most up-to-date research and medical information on celiac disease and non-celiac gluten sensitivity, and to be able to occasionally vent. I believe that having celiac disease is both a blessing and a curse.

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Please check me out my Facebook page and share my page with others who may benefit: www.facebook.com/thepatientceliac. You can also find me on Twitter: @PatientCeliac and Pinterest: www.pinterest.com/patientceliac, although I admit that I am not on the latter two sites very often these days!

Thanks for reading and please let me know if you have feedback. I look forward to getting to know you, sharing information, and learning from you, as we are all on this celiac, and/or gluten free journey together.

-Jess

Contact email: thepatientceliac@gmail.com

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52 thoughts on “About Me

  1. Anne Fitzgerald

    TY for your site. Have been on GF diet 7+ years. Still suffer from auto immune sx , but atleast tummy fells better much of the time :)

    1. admin Post author

      Hi Anne, Thank you for stopping by and for your kind words. Writing this blog is a totally new experience for me. Please let me know if you have any suggestions for topics/subjects that I should try to address on here. Best wishes and happy holidays! Jess

  2. Patrick (Kathleen's hubby)

    Hey, Jess, get a kick out of reading the blog and passing it on to people I know that have symptoms.
    Starting to think I may be Celiac or intolerant since I’ve had ’bouts’ after doing my toast in the morning or stopping at Dunkin DN. Blood test next physical!

    Keep up the good work!

    Patrick.

    1. admin Post author

      Thanks Patrick for reading and sharing with others! I know a lot of people who seem to be in denial that they have problems with gluten. Good luck with your upcoming blood work, I hope that you feel better soon. Merry Christmas! Jess and family

  3. Amanda

    Thanks for stopping by my blog! I’ll be interested to read yours as well, especially because it’s from the perspective of a physician. I love to run, too — did you find your energy and tolerance to running was affected when you first went gluten-free?

    1. Jess Post author

      Hi Amanda, Thanks for stopping by. I ran track when I was younger but struggled to run in the years leading up to my diagnosis, probably because I was so anemic. Within about 3 months of being gluten free I was able to start to run regularly, and increased my distance and endurance quite a bit. My only real setbacks now are when I get glutened, which, fortunately, with time, have happened less frequently. I am thankful to be able to run because it is an outlet for me and is, many weeks, my only time to myself!
      Happy Holidays to you! I’ll definitely keep up with your blog and pass on your information to others.
      Jess

  4. Taylor

    Hey Jess, just came across your blog and really like it a lot! My mom suffered for about as long as you did from symptoms of Celiac Disease and just got diagnosed a couple years ago as well. I’m 15 and got diagnosed 2 years ago with Celiac so I was much more fortunate to figure it out at a younger age. Again, I look forward to reading your blog and connecting with you!
    -Taylor

    1. Jess Post author

      Hi Taylor,
      Thanks so much for checking out my page. It’s funny that you mention your mom, because my mom was diagnosed with Celiac Disease about one year after me. It seems like it takes us adults quite a bit longer to heal when we’ve been undiagnosed for so long. I hope that your mom is feeling better too!
      I have so much respect for what you have done with your blog and I am looking forward to following it and sharing it with others.
      All the best!
      Jess

  5. Vik

    Hi Jess, thanks for doing your blog, I know from a food blogger friend, that blogging is a ton of work. I am recently diagnosed with celiac (after years of misdiagnosis) so am still on the big learning curve. I’ll figure something out. think whew, then the next thing comes along. Have called many store customer service lines to see what the labels on the packages DON’T say. I’m wondering: what is your experience with using items that are gluten free in themselves, but run on lines that also process gluten-free items. Or are not made on the same lines as gluten items, but are in the same facility. All the reps say the lines are cleaned and inspected, some even tested afterwards. But… gluten is tiny and sticky and machinery– how could you ever really get machinery, with all those pieces, completely clean of gluten? I mean, we are advised when diagnosed to get rid of our colanders and strainers and cutting boards which were used for gluten–because they are hard to clean…so… complex machinery??? My take on all this is to only use products made in dedicated facilities, or where only GF items are made. What do you think?

    Thanks, Vik

    1. Jess Post author

      Hi Vik,
      I am glad to hear that you have finally been diagnosed after all of this time. It’s a real life changer, isn’t it? I was so relieved to finally have an answer for why I had felt cruddy for so long, but then I felt like there was a huge learning curve for being gluten free (that it’s a lot more difficult than it sounds like it should be).
      I no longer eat any foods which are made on shared equipment because I have gotten sick too many times from cross contamination this way. I have had especially bad luck with the Trader Joe’s “no gluten ingredients” items as most are made on shared equipment which has supposedly been washed and cleaned very well. I got particularly sick from one of their spaghetti sauces made on shared equipment and it was the last straw for me.
      There are many people on the celiac forums who do not seem to be as sensitive to gluten contamination and report that they can eat GF items on shared equipment without a problem. However, I truly have no idea what the status of their villous blunting is, nor do I personally know any of them.
      At this point, almost all of the GF processed items I eat (which there are very few of) are from either dedicated facilities and or shared facilities in which the companies truly understand celiac disease and the risks of gluten contamination. I have never gotten sick from any of Glutino’s, Glutenfreeda’s, Rudi’s or Udi’s products. Schar is another company which I trust. That being said, I purchase most of these products for my kids, as I have naturally become more and more “grain light” with time as I feel better this way. I am not full Paleo, but much more dairy and grain light than I was a few years ago. I have also learned through trial and error that there are a few ingredients in a lot of GF foods, such as xanthan gum and carrageenan, which do not agree with me and lead to digestive symptoms.
      I had a really difficult time sifting through all of the information about Celiac Disease on the internet when I was first diagnosed. All of the best to you on this journey and please let me know if you have any more questions!
      Jess

  6. Vik

    Jess, many thanks for your reply. I spent about an hour on the phone yesterday with reps from Costco for the Kirkland brand, and also with Trader Joe’s reps. I named the item number and they looked it up and told me whether or not it had added gluten or was processed in the same facility, or cross-contamination on the same lines. I had some successes and many items that I will take back. I was sad about the Trader Joe’s tofu and also their canned beans, because those are made from shared equipment, and as a vegan, tofu and beans are a huge source of my protein. I love to cook dried beans in the crockpot, and I know not to buy dried beans in bulk bins because of the cross-contamination. Have you found a good source of buying dried beans in bags such as the 365 beans organic beans at whole foods? have an email into them about whether or not those are safe. I get rice from Lundberg, they only do rice in their facility. But I would really appreciate any advice about where to buy dried or canned beans, at a grocery store. Thanks, Vik

    1. Jess Post author

      Hi Vik,
      The best source for dried, gluten free beans which I’ve found is Arrowhead Mills, website is http://www.arrowheadmills.com/category/gluten-free-beans. They sell them at my local grocery store, and although I do not live near a Whole Foods, I am pretty sure that this is a brand which is sold at Whole Foods. I had gotten the recommendation about a year ago from Inspired RD’s website, and if I’m recalling correctly, she also has some other brands of beans which she recommends on her site. I have never gotten sick from any plain, canned beans, as long as I have soaked and rinsed them properly before using them. Lately I have just been buying the Target store brand of canned beans, I mostly use garbanzo beans and black beans when I cook. I hope that this helps.
      Jess

  7. Crystal Wix

    My daughter was diagnosed at the age of 10, Christmas Eve 2010. After 6 mos. on GF diet her ENDOMYSIAL IGA AUTOABS was 297; it’s been almost 3 yrs and we’ve all gone GF for the most part and her antibodies have decreased but they’re still staying about 110-112. Any ideas or suggestions as to why her antibodies are still high? She also has Hashimoto’s hypothyroidism and type 1 diabetes.

    THANKS!!

    1. Jess Post author

      Hi Crystal,
      Thank you for writing. I hope that you don’t mind if I ask you a few more questions about your daughter. Have her TTG antibodies normalized as well, or are they still elevated? Is she still having ongoing symptoms of Celiac Disease, or is she doing well on the GF diet? Has she had a recent endoscopy to evaluate the status of her intestinal villi? Per the University of Chicago website, persistently elevated TTG antibodies can be associated with autoimmune thyroid disease and liver disease, but endomysial antibodies are rather specific for Celiac Disease.
      Is your entire household gluten free? If it is not, I would be worried that she may be getting exposed the traces of gluten in your home. I did my best to keep a shared kitchen, with separate gluten free utensils, cutting boards, condiments, wash rags, baking pans, toaster, etc., but despite being as careful as I could, I continued to get sick from traces of gluten. My symptoms did not totally resolve until I took all gluten out of my home last year, so I am now a big advocate of keeping a gluten free household even if there is only one person with Celiac Disease in a family. This is hotly debated on a lot of the online forums and facebook support groups, but for some of us, any residual exposure to gluten is toxic.
      You can reply to me on here, or by email at thepatientceliac@gmail.com. Thanks!
      Jess

  8. Joanne

    Thanks for sharing your experiences and knowledge as a mother and physician. I have been recently diagnosed with celiac (and soy intolerance) after a lifetime of problems similar to what you describe. I am relieved that I may have actually discovered the route of my health problems and am now on the journey of learning to approach my food differently (although I love cooking so I’m excited about meeting this challenge). Learning from others on sites like yours is so helpful, your efforts and words are greatly appreciated. I’m trying to get a sense of how long it will take before I start feeling better now that I have completely cut gluten and soy (and lactose) from my diet. Grateful for any experience from you or other readers on this.

    1. Jess Post author

      Hi Joanne,
      Thank you for “stopping by!” I am so glad to hear that you have learned the root of your health problems. Your enjoyment of cooking will help you out a ton on your journey!
      I felt remarkably better within 1 month of being GF, but in total it probably took about 2 1/2 years for my gut to fully heal…part of my problem was that I truly had no idea what “normal” health felt like as I had experienced gluten-related health issues for decade and my biggest mistake that I made was that I continued to eat too many GF processed foods and replacement foods when I went GF. I truly believe that I would have healed much more quickly if I had went onto a whole foods, or at least predominantly whole foods diet, in the beginning, avoiding all of the GF substitute packaged foods like breakfast cereals and breads. My body feels its best when I am fueled by green, leafy vegetables, fruits, nuts, sweet potatoes, lean meats and fish, keeping dairy and all grains to a minimum. I am baking mostly with almond flour these days (I do have a great chocolate scone recipe if you’d like it). I am able to tolerate GF oats, which I am thankful for, a lot of Celiac patients are unable to. We joined a CSA for the first time this year so I’ve been eating vegetables to my heart’s delight! I love Kale and spinach.
      I did have a sulfite intolerance surface about 2 years into my journey, so I lost the ability to drink wine and eat foods like dried fruits, but like you, I have just adjusted. There is increasing information that alcohol consumption leads to increased intestinal permeability, so I have done my best to minimize all alcohol.
      There are a ton of great sites for GF baking and cooking. I have had the best luck finding more GF recipes than I could ever make on Pinterest.
      Good luck Joanne and feel free to pose questions at any time!
      Jess

      1. Leanna

        How did you know it was a sulfite intolerance versus cross contamination via wheat being used to seal the barrels the wine is made in? I thought I had a problem with sulfites for a very long time but didn’t react to sulfites in other foods. I learned, rather recently (and to my dismay), most wineries use wheat in their processes. That explained a lot! I haven’t taken the time to contact more wineries but it explains why I reacted to some wines and not others. For now I am just abstaining until I can check on the use of wheat in the processing.

        I found your blog today and your experience sounds very similar to my own. I have experienced everything from jaw pain, unexplained nerve pain, massive headaches, tiredness as a child, to neurological symptoms and major problems with mine and my childrens’ autonomic nervous systems. I would say most of the standard and non standard symptoms described. I was surprised to see people complaining of symptoms while running. I trained as a cross country runner as a child. I would run with severe abdominal pain most days. This pain only presented itself while I was running. I ended up moving and giving up running eventually. I have attempted multiple times as an adult to start running again but I have adverse results each time.

        I have also struggled finding a physician to work with. My middle child, Will, stopped growing and dropped from the 76%tile to the 25% in a year. He also presented with major Neuro symptoms and he would have frequent accidents whenever he was exposed to gluten. He couldn’t tell he needed to urinate until he was involuntarily going. My older boy was 11 when I began to figure out gluten was the culprit. He went 12 years not getting the signals to defecate. It was truly amazing the transformations in these two. It took my 12 yr old son going on and off gluten, and having these specific symptoms come and go to realize it was indeed gluten causing the problem. Once he admitted to himself gluten was the problem and abstained for 30 days, he grew 8 inches and now after 3 years has recovered his stature. My middle child, now 4, recovered his growth in 6 months and reversed many of the OCD, anxiety and other neurological symptoms. He still struggles with dermatitus and some other symptoms. Although he may still be healing from recently removing dairy from his diet. This was also causing neuro symptoms.

        I watched a seminar on New Years’, most of which was not new information but the big thing I learned is upwards of 50% of folks with gluten problems also have issues with dairy. I lost the link but I believe it was from http://www.thedr.com/. Sure enough my the two boys with gluten issues and I cross react to something in cow and some goat dairy, mainly the milk and cheese. I don’t know if this has to do with proteins of foods being found in mammalian milk, or if there is a true issue with dairy itself. I have yet to source cow milk fed 100% gluten free to test my theory but I have inflammation and asthma from gluten fed goat milk and no trouble with the gluten free fed goat and sheep milk.
        I approached my childrens’ pediatrician with the results of the gluten elimination diet when I first realized gluten was the culprit. She ran a blood test on my youngest who was 2 at the time, which not surprisingly came back negative. He had only eaten 3 wheat crackers that week and no other gluten, plus his age. He was mostly gluten free for the 4 months prior to the blood work. She diagnosed both boys with Non Celiac gluten sensitivity without further testing and refused to discuss treatments, or any of my concerns or questions. I made several attempts and ended up walking away feeling invalidated and with many questions. I haven’t been to the doc since for any preventative medicine or assistance with mine and my childrens’ gluten related issues. I think this is partly because I am afraid to get the same treatment as I had looking for answers for the 15 years prior to finding out gluten was the main cause of all my inter and unrelated symptoms. I am also unwilling to go back on gluten to get a formal diagnosis. I don’t feel it is the best choice not to be consulting with a Doctor but until I can find someone willing to work with us on this front, as it directly effects my childrens’ physical and emotional well being, I feel like it is a waste of my time. I am also monitoring their growth myself and doing lots of research as to their related symptoms. I hope to eventually find a physician to work with.

        | am a researcher by nature, so I started digging into scientific articles, available web information, and pretty much reading anything and everything being said about gluten and its correlation with the nervous system and really all bodily systems.

        This last year, I began having symptoms and was diagnosed with an overstimulated vagal nerve, mainly a severely slow heart rate. I didn’t even connect the dots, as this is the same nerve that causes the boys symptoms until I learned what over stimulates the vagal nerve, that being one part of the autonomic nervous system, ie the vagal nerve, getting overstimulated. I was told by the Docs that I had this condition, would just have to live with it and by the way, it is what Elvis Presley died of, and here by the way is pills to treat the accompanying depression, inattention, anxiety, asthma and myriad of other related symptoms. I am not a fan of just treating symptoms without at least having a working knowledge of the root cause and be working towards resolving the cause. Obviously that answer wasn’t good enough for me and I decided to jump into researching this condition.

        Gluten is definitely the trigger, especially cross contaminated coffee. The only gluten exposure I had at the time was inhaling the air in local stores while they were baking, coffee that was cross contaminated at a friends house and possibly through milk (I haven’t seen positive data on whether these proteins are in all mammal milk but it has been proven food proteins cross into breastmilk, so I theorize they are also in other mammal milk based on my personal experiences consuming various products.) I would leave the stores with an asthma attack and pus filled welts in the back of my throat. Following these trips to the store or visits with my friend in which I consumed the coffee, I would experience the symptoms of an out of balance nervous system.

        I should also mention other symptoms for me of inhaling gluten, is inflammation in my lungs, mucus, headaches, and bloody noses even though I am very strict about not consuming the actual food.

        I guess I should get to my point. I think it is important to share my experience because even though I did a lot of research and learned a lot of information, my body and that of my children would spur further research, connect more dots, and help us understand on an even deeper level the extent of problems caused by gluten in our environments. I am just learning to an even deeper level the correlations between different foods and auto immune thyroid responses. Our bodies are such complex systems, it is truly amazing how one little protein can wreak such havoc on it.

        Thank you for having this blog, being genuine on here, and building awareness of the myriad of inter-related health concerns related to celiac and gluten sensitivity.

        1. Jess Post author

          Hi Leanna,
          Thank you for taking the time to share the experiences of you and your kids.
          They (and you) are fortunate to have figured out that gluten was making all of you ill.
          If you are interested in learning more about my sulfite intolerance, I wrote about it last year (see link). I had such a severe sensitivity to sulfites that I even started to have wheezing after drinking bottled water that was exposed to sulfites during filtration. Now that I’ve been on treatment for mast cell activation syndrome and probiotics, my sulfite sensitivity is much improved. I can still not overindulge, but I know longer react to accidentally eating one raisin like I did a few years ago. I still carry an EpiPen though, just to be safe.
          I am very interested in the connection between gluten sensitivity and milk protein intolerances, as both problems seem to run in my family, and it’s an area that I continue to read and learn about. I hope to write about it soon. I do not follow the dr.com, but I will see if I can come across some of his information about dairy and try to pull the actual research.
          Anyway, it is nice to meet you, and I really appreciate all that you shared.
          Jess

  9. Sha

    I have a degree in Biochemistry UK and have had on average 2.5 migraines per week since i can remember.
    (for some 30 years). I am very fit and healthy expect for the migraines, nasal restriction, feeling travel sick,
    poor memory and anxiety , quick to anger and can not sleep well (all caused by adrenaline). The cause for
    me was raised histamine in blood from foods via poor di- amine oxidase activity in gut. In my case this is genetic as my family also have this. The histamine causes the know symptoms and lower blood pressure causing chronic fatigue. Adrenaline is then released by the body to increase blood pressure leading to
    anxiety and adrenaline issues like poor sleep and the 2.5 migraines per week. (this is the probable cause of most migraines in humans 1% population, IBS, and inner ear problem). Email me if you wish to
    at info@visionexpressonline.co.uk.

    1. Jess Post author

      Hi Sha,
      Thanks for sharing your experiences…like you, I have just been putting the pieces together about my own problems with histamine and am in the midst of being evaluated for mast cell activation disorder, which is such a new diagnosis that a lot of people (and doctors) do not know that it exists. The more of us who can share information, and help get the word out, the better. Although there is no research linking problems with histamine metabolism with celiac disease, there are a ton of people who I have interacted with online who have both problems (it truly seems like more than a coincidence).
      Do you have any recommendations for resources about histamine? I have been referred to the work of Dr. Joneja, as well as Yasmina, the Low Histamine Chef. I’ve been able to find them both on the internet.
      I look forward to emailing you soon.
      Thanks!
      Jess

  10. Cherish

    I just came across your blog and just wanted to comment on how great it is. It sounds like we went through a lot of similar things (I probably have had celiacs most, if not all, of my life but wasn’t diagnosed until last year). Anyway, keep it up! I really enjoyed your articles thus far.

    1. Jess Post author

      Hi Cherish,
      Thank you so much for taking the time to introduce yourself. I am glad that my posts have been helpful, and I look forward to checking out your page as well!
      Jess
      P.S. Although I am often unhappy to have Celiac Disease, I am thankful that I am not longer walking around undiagnosed….

  11. Jennifer

    Thank you for offering up so much helpful information. I am struggling to obtain a definitive diagnosis. My current GI doctor suspects Celiac, but my question is this: How could I have documented villous atrophy (per the physician’s endoscopy note from 2010) but an accompanying “normal biopsy”? Would this still point to Celiac? I believe my symptoms fall in line with that diagnosis and I went gluten free in November. A biopsy last week showed no damage, so I would also presume that the change to GF and the absence of any atrophy would confirm the Celiac diagnosis. I am still battling a lot of GI symptoms but I am hopeful that I just need more time to heal on a GF diet. Thank you for any feedback you might have!

    1. Jess Post author

      Hi Jennifer,
      Thank you for stopping by. You surely do sound like you probably have Celiac Disease (although bear in mind that I am unable to give medical advice through this page). The villous atrophy in Celiac Disease can be patchy, although this was just recently recognized, so perhaps back when you had your biopsy you were not diagnosed because the atrophy wasn’t continuous throughout your bowel…you can read more about this in my recent post from July 2013.
      The most important thing is that you are feeling better being gluten free and that your biopsy is now totally normal. Had your villous atrophy been from another cause (i.e. tropical sprue or severe lactase deficiency) it would be unusual for it to disappear without treatment!
      Another thing to bear in mind is that a lot of us with Celiac Disease have ongoing GI symptoms due to the co-existence of IBS, which can be triggered by other foods, i.e. dairy, soy, FODMAPS, etc, in addition to gluten. I was able to pinpoint the other triggers for my GI symptoms by keeping a detailed food diary for about 6 weeks.
      Jess

  12. Kurt Hoddelmann

    I have been diagnosed with TMJ since 2001. I recently read that this could be related to Celiac Disease. I was wondering if anyone else has heard of this and how can I get tested to see if I really do have Celiac Disease.

    Thank you.

    1. Jess Post author

      Hi Kurt,
      I, like you, had TMJ for at least 10-12 years prior to being diagnosed and going GF. It was not until I went gluten free 3.5 years ago that it went away (and it has never returned). There have been no discrete studies that I know of examining the link between Celiac Disease and TMJ, but, anecdotally, a lot of us have experienced it. Celiac Disease is strongly associated with arthralgias (joint pains), so it does make sense that TMJ is somehow linked to gluten.
      Although the official diagnostic process for Celiac Disease is currently a moving target (i.e. whether or not a small bowel biopsy is necessary), the traditional approach in the U.S. has been for a patient to continue on a normal, gluten-containing diet and have blood tested for Celiac antibodies. The 2 main Celiac antibodies are tissue-transglutminase (TTG) and endomysial antibodies. If a patient’s antibodies are abnormally high and/or there are clinical symptoms that are concerning for Celiac Disease, many will recommend an endoscopy with small bowel biopsy to look for an intestinal change called villous blunting. However, in the last few years, some doctors have expressed the opinion that Celiac Disease can be diagnosed without a biopsy, i.e. if a patient has symptoms of Celiac Disease, improvement when gluten is removed from the diet, a family history, and abnormally high antibodies, then they meet enough criteria for a diagnosis (this was how I was diagnosed). If you do decide to have a biopsy done, it is important to make sure that it is done correctly (that at least 4 different areas of the small intestine are biopsied, including the duodenal bulb). The damage from Celiac Disease can be very patchy and if not enough biopsies are taken, Celiac Disease can be missed.
      I hope that whatever path you take, that you find your answer for your TMJ. I do not miss having it at all! Please let us know if you do end up finding out that Celiac Disease is the culprit for you.
      Jess

  13. Michael Galvin

    Hi Jess,

    Discovered your blog today and have spent several hours learning from you. I was diagnosed with Celiac Disease twelve years ago at University of Pittsburgh Medical Center by intestinal biopsy and confirming blood test. Quick question–is it not advised for me to prepare sandwich for my wife? I’ve been careful to wash my hands thoroughly afterwards, but just have this nagging feeling that I’m getting exposed to Gluten just by handling the bread.

    Thanks, Michael

    1. Jess Post author

      Hi Michael,
      It is nice to meet you.
      I attended the International Celiac Disease Symposium in Chicago in Sept. and the experts reiterated that gluten can not be absorbed through the skin. However, they did state that those of us with celiac need to be careful of inhaled gluten (so we should not be in situations where we could inhale flour, i.e. work in a bakery).
      That being said, I have gotten ill from making cookies and pizzas with my kids, prior to making my entire home gluten free in 2012 (again, hard to tease out if it was actually from touching the dough v. inhaling the flour that I used to dust the surfaces where I rolled out the dough).
      I work at a homeless shelter and one of my duties is to make sandwiches. I always wear gloves when I make sandwiches, and since, doing this, I have never been glutened. I have a feeling that you’d probably be fine if you made your wife a sandwich without gloves and then washed your hands carefully afterward, but with this disease I’d rather be safe than sorry when I can.
      Not sure if I actually answered your question or not though…
      Jess

      1. Michael Galvin

        Hi Jess,
        Thanks for the quick and thoughtful response. Yes, you did answer my question. Need to make sure not inhale bread crumbs, cross contaminate counter, utensils, etc. but actually handling the bread with appropriate post hand washing is probably fine. That’s my take away.

        My wife sometimes has NGF cereal, and I noticed yesterday she finished a box of Special K. She then smashed the box prior to putting it into the trash. I saw a “cloud” of cereal dust billow out of the box when she compressed it. I spent a half hour afterwards cleaning the kitchen counters, stove top, kitchen floor, and appliance surfaces to remove the fine dust.

        Later that night I had a very uncomfortable bout of intestinal cramps and diarrhea. This really made me wonder how much gluten I inhale/ingest from inadvertent exposures from food, cat food, drywall dust (had been doing some repairs), etc.

        Here is my ask–would it be appropriate to ask my GI doc to do an endo with small intestine biopsy to check on current state of villi health and effectiveness of my GF lifestyle efforts? It has been almost two years since my last one which did show villous blunting. I don’t “cheat” (anymore-will admit to a certain level of denial for several years.)

        Thanks for your friendly non-medical observations. I also hope my questions will add value for your other readers.

        Michael

  14. James Atwell

    April 2013 I became ill with constipation followed by severe diarrhea and weigh loss. The first test was the upper GI and the pathology report was ,”villous blunting, celiac disease.”
    My G I doctor at the time decided to run more test with the next being blood test that in his words,” was a better indicator for celiac disease.”
    Blood test were negative and I was told to resume my normal diet by the doctor. I chose to stay gluten free however and began to recover. I underwent more testing and doctor visits during this time but still with no diagnosis. I assumed that I had some sort of ‘bug’ and that I didn’t have a gluten problem because of what the doctor said.
    The day I was well enough to return to work I ate an English muffin and an oatmeal mixture containing wheat at McDonalds. In about one hour I became extremely ill and had to be driven to the E R.
    I started the whole cycle over again and lost another thirty-pounds.
    It’s obvious now that the doctor was negligent, and incompetent causing me suffering ,possibly permanent injury , and financial loss.
    Has anyone else had similar experiences and sought damages from incompetent doctors ?

    1. Jess Post author

      Hi James,
      I am sorry to learn all that you have been through.
      It sounds like you best speak with a lawyer about your situation as it sounds like yours is an unusual case.
      Jess

    1. Jess Post author

      Hi Michele,
      Thank you for sharing the info about the SCD. I have interacted with other celiacs with ongoing symptoms who have had a tremendous improvement in their symptoms after starting the SCD. It is nice to have a resource to share about the SCD.
      Jess

  15. Donna

    My daughter will soon be turning 25 and was a survivor of NEC as a premature baby. What a blessing it was to have a wonderful neonatologist step in and save her life. Now as an adult, she is displaying symptoms of “leaky gut” syndrome. I am sure that she had symptoms earlier in life, but, I think that they have become much more crippling as she gets older. While researching and looking for answers for her symptoms, it begins to link up with her challenges at birth. Have you noticed any common ground between gluten intolerance, celiac, “leaky gut”….etc. and these NEC babies as young adults?

    1. Jess Post author

      Hi Donna,
      Thanks for sharing your daughter’s story of her miraculous survival from NEC so long ago.
      As far as I know, there have been no long term follow-up studies of the incidence of gluten problems, leaky gut, etc. in survivors of NEC. I work in the field of NICU follow-up and most of the resources have been dedicated to neurodevelopmental and cardiovascular outcomes. I am unaware of any researchers who are studying any of these things at all in former preemies (those with or without NEC) during adulthood.
      Jess

  16. bonnie

    Hi Jess
    I was intrigued to read your posts since there is not much out there recently on celiac and neuropathy. I was diagnosed with celiac in 2007 and developed migrating pains in 2012 which were finally diagnosed as small fiber neuropathy. My celiac #s are good but there neuropathy pain persists, now on medication. I am debating dietary changes (maybe paleo) to see if helpful. Wish there was more out there on the subject so keep the good work up sharing what you learn. thanks!

    1. Jess Post author

      Hi Bonnie,
      Thanks for introducing yourself. I am sorry that you are experiencing this, and I agree with you that there is a paucity of information on the problem of celiac-induced neuropathies. If you have access to the magazine “Living Without” there is a good article in the April/May 2014 issue about the neurological effects of gluten, including some info on the neuropathy (I am actually one of the patients profiled in the article).
      If I was in your situation I would probably try the paleo route to see if it helped or not. There is some emerging, new information that I’ve come across about the inflammatory effects of dairy and milk (I plan to write about the science and theory behind it soon), so I think it sounds like you are on the right path. Good luck and please let me know if going paleo helps (as if it helps you, someone else may read your experience and be helped too!)
      Jess

  17. cris

    My adult son has eaten GF (strict) for 6 months or a year? and has Hashimoto’s and on Thyroid meds. He had a skin biopsy that was negative for DH. However, he has a VERY itchy skin rash head to toe for two years which has not changed eating GF. He has seen multiple doctors -MD, dermatologist, allergist, endo…. The rash is severe and has been on high doses of prednisone and antibiotics (the only answers Dr’s have is steroids or Methatrexate?) when it was so bad that it was oozing. He just started (2 wks ago) eating grain, seed, dairy, egg free; so far no difference. Would love any suggestions or thoughts on what and where he could go next? Thank you

    1. Jess Post author

      Hi Cris,
      I am really sorry to hear of your son’s symptoms and suffering. Does your son have celiac disease or non-celiac gluten sensitvity? Does he have other autoimmune issues? Has he been evaluated at a large academic center, like the Mayo Clinic? I am not an adult doctor so his problems sound very far away from my scope of practice, but there seem to be more and more of us gluten-free folks figuring out that we have problems with mast cells. I was diagnosed with mast cell activation syndrome last year, and it can cause very diffuse, itchy skin rashes. The link to my mast cell post from January is here and at the end of my post are some other references you can check out.
      Jess

  18. Ashton Lee

    Jess

    I just stumbled onto your web site and want to thank you … for putting it up and staying connected. Those of us with CS really benefit from being able to share what works for us. Often times we have learned a lot more about management of this condition than our Doctors. So I think it is critical for people to share their insights and successes.

    My own deal is that I was really OK until I picked up a parasite in India 15 years ago, was treated with Cipro and Flagyl, and was never the same thereafter. My internist finally pegged it as Celiac Disease two years ago. As Dr. Fasano has identified you need the genes, gluten, plus some trigger to develop CD… in my case the trigger seems to have been either the infection or the antibiotics.

    Religious removal of gluten from my diet has fixed 85% of the issues. That really gave me back my life. But as you seem to experience as well, cross contamination, restaurant ignorance resulting in glutening, and susceptibility to other problem foods (for me Soy proteins, casein, sulfates and who know what else) keeps me less than 100%. I have two tricks that help a lot: VSL #3 and exercise. Within the last year Fasano has published on VSL #3 to suggest it breaks up many of the problematic peptides, and reduces Zonalon production. I ran out a few weeks ago, was feeling great so I didn’t bother to find more, and (duh?) it took me a few weeks to realize why I was feeling bad again.

    So one of my points in posting is to encourage people to combine dietary elimination of problem foods together with probiotics. I can only hope that this combination works as well for others as it seems to for me.

    The other observation that I would share is that CD, “Non-Celiac Gluten Intolerance”, and IBS all seem to me to be one big continuum. We are all reacting to something… and it seems generally the same things. In some folks the damage has just progressed further or differently. In fact Fasano is starting to suggest that other autoimmune diseases are even part of the spectrum. In my case eliminating gluten cured asthma and peripheral neuropathy. I am blown away by the speed at which the Fasano research team is identifying the biology of the leaky gut and hopefully better treatments. We all just need the forums such as you have created to stay abreast of the latest and best ways to deal with our situations.

    And it is very helpful to have a forum moderated by an MD. Because there is a boundary in which self help slips into Witch Doctory… and we all need to try to avoid going there.

    Ash

    1. Jess Post author

      Hi Ash,
      It is really good to hear from you and I appreciate that you’ve shared your experiences. I agree with many of your points and I can tell that you’ve really done your research. Similar to you, my peripheral neuropathy and asthma have cleared up by being GF and sulfite-free.
      I’ve been accused of being a “probiotics pusher” but I have felt compelled to share info about the beneficial effects after all the reading I’ve done. Did you try any other probiotics before choosing VSL #3? I’ve been taking OTC Florajen for the last 18 months and am pretty happy with it. My old GI doc refused to prescribe VSL #3 because he said that celiac disease has nothing to do with the microflora (I’ve since stopped going to him) and I have had a difficult time finding a new one who really knows about celiac disease. I eventually would like to go to one of the major centers in Boston when I have the money and time to travel there.
      What type of exercise do you do? If you haven’t figured out, I am a runner, but I also love biking, hiking, ice skating, and skiing. It’s getting easier to find time to do this things as my kids get older because they can do them with me. It’s hard to do any of them after an accidental gluten exposure.
      Anyway, I hope to “see” you on here from time to time. Your comment popped up at the perfect time. Thank you!
      Jess

  19. Ashton Lee

    Jess

    I’ve taken Florastor (a yeast) and a few other equivalents of VSL (Ultimate Flora). But VSL is what Fasano tested in gluten cultures and we know it breaks down Gliaden and Gluten peptides at least as well as the few alternatives they initially screened. Plus it works well in my personal experience, and the refrigerated distribution makes sense to me. So I think you are completely right to advocate the probiotics.

    I live in Western Colorado so exercise is skiing, cross country skiing, skinning, road biking in the high country, hiking, kayaking, taking care of a small ranch and all that stereotypical stuff. I lived in Chicago for years, so it used to be running, biking, paddle tennis etc. Frankly I think it is best to force yourself to go out even when you are feeling bad. I typically feel better after exercise than before… in digestive as well as general terms. But I fully understand all the dimensions of being unsure whether heading out for exercise is going to be risky or pleasant. For one thing, skiing can be a bit hard when you are bloated because of the altitude and pressure changes… and the bumps of course. Good news, all the Aspen on mountain food service does very clean gluten free meals… I haven’t had any issues with that.

    I sympathize with you on finding a GI Doc who really can help much. Once you have read as much as we all have you pretty well know what any practitioner does. And you know that , at this stage, what we need to do for ourselves is more than they can do for us anyway. It was my Internist not my GI guy who nailed the CD problem. The GI doc did put me onto VSL #3. The issue with medicine here I think is that GI Docs are largely trained in physical stuff (cutting out cancer, fixing obstructions etc) and prescribing some seriously strong drugs for infections, Crohn’s etc. and are not heavily into microbiology, gut flora, or really very much about diet. So when we now find that things like dementia and MS may have roots in intestinal permiability caused by Zonulin releases triggered by various genes and proteins in certain foods we are kinda outside what they deal with every day. I think you do have to get to the more research oriented centers… though I would think someone at U of C or Northwestern should be knowledgeable. But really all a GI doc can do for us at this stage is rule out really bad things or explain what we can pretty easily learn by reading.

    My guess is that 50 years from now there will be a separate specialty focusing on intestinal flora and its relation to mucousal tissue. Good Bugs Vs Bad Bugs is going to prove to be a really major medical topic. Just like H Pylori has been (“You mean it wasn’t stress?”). In the course of this we are also quite likely to become even more suspicious of broad spectrum antibiotics.

    In closing I will note that the best testing I got in terms of really impacting my knowledge of what I was reacting to was Dr. Kenneth Fine’s (controversial) Enterolab work. That studies antibodies in the stool rather than the blood. When I first went Gluten Free I had periods of great health and moments of complete relapse. The Enterolab results nailed my Soy sensitivity… many of the products I had been using to avoid gluten substituted Soy Protein for Gluten. No soy proteins and 90% fewer problems. Then, as you know, avoiding soy in all its disguises (Texturized vegetable protein, vegitable broth, tofu etc) can be a lifetime’s work. I have to work much harder to avoid hidden soy than I do to avoid gluten. Most soy oil and lethicin (as opposed to soy protein or soy flour)seems tolerable… but not cold pressed or organic soy oil.

    Now if I could figure out why I have lost my tolerance for Red Wine…

    Thanks for your reply and good health. Saving people’s newborns must imbue you with enough good Karma to beat most of the CD.

  20. Jacquie Knickle

    I was diagnosed with Celiac Disease last summer after having a complete hysterectomy. I am 48 yrs old. Despite being on a strict gluten free diet I experience problems with extreme bloating, slight nausea particularly after the evening meal. I have tried eliminating dairies which has helped some but still having issues. Wondering now if fatty foods are the problem. Do you any insights? I have been on 4 courses of antibiotics since Feb for UTIs which are being investigated. Started probiotics and L-Glutamine to try and combat the effects of the antibiotics on my gut. Thanks!

    1. Jess Post author

      Hi Jacquie,
      I am glad to hear that you were diagnosed, but sad to learn that you are still having symptoms. Have you had your celiac antibodies repeated to make sure that they have normalized on the GF diet? I just wrote an article about nonresponsive celiac disease for Gluten-Free Living magazine (will be published next month). The most common cause of continued symptoms is accidental gluten ingestion/cross-contamination. Common sources of gluten ingestion include medications, lipstick, vitamins and supplements, communion wafers, and shared cooking surfaces. Other causes of ongoing symptoms include IBS, small bowel bacterial overgrowth (sounds like you may be at risk for this due to your mutliple courses of antibiotics), microscopic colitis, and inflammatory bowel disease. There’s also been increasing information that some of us with gluten issues also get digestive symptoms from food components called FODMAPs (if you Google this you will find a ton). I hope that you find answers. There are some very helpful folks on celiac.com, like “Irish Heart” and “GottaSki” who may be able to help you too.
      Jess

  21. Jennifer M.

    Hi Jess
    I also have TMJ since the age of 14. I noticed it is much better lately. It never occurred to me that it could be related to gluten. I used to get lock jaw quite often and lots of noise to open my mouth. I have been gluten free for 5 months except for 2 accidents. I was wondering if you remember how long it took for your TMJ to completely go away?

    1. Jess Post author

      Hi Jennifer,
      Things are a bit fuzzy but I believe that my TMJ resolved around my 1 year GF point. It had been a part of my life for so long prior to my diagnosis that it was not until I was able to actually eat a whole apple one day that I realized that it was gone. I have had it return only one time in the last 4 years after a glutening. I hope that you have a similar experience!
      Jess

  22. Avalon

    Hi Jess,

    i am very worried about my health right now. I believe I have had Celiac for quite some time and I’m at a loss. Is there a way for me to contact you personally? My symptoms have increased within the last two months.

  23. Anne

    Question: Have you tried or researched the Juice Plus+ product line? I would be curious to get your review on it. (JP+ does contain oats, but is certified gluten free via the ELISA method).

    Thank you.

    1. Jess Post author

      Hi Anne,
      No, I have not heard of this product. Thanks for the suggestion. If I like it I will add it to my “Products I Like” page.
      Take care.
      Jess

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