About Me

**As of January 2017 I have stopped updating this webpage and all comments are now closed. Please visit my new page, www.jessicamaddenmd.com, for my new posts, updated celiac information, and the ability to comment on my old posts. Also, if you have been helped by my page please consider purchasing from my skin care business, as all proceeds go back toward supporting my celiac advocacy. Thank you to all of you for your support!**

Hi! My name is Jess Madden. I am a mother, physician (Neonatologist), yogi, and runner with celiac disease. I was diagnosed with celiac disease 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 and journey prior to diagnosis, click here.

My goals for this website are to share my story, discuss my experiences living gluten free and raising (almost) 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 feel that having celiac disease can be both a blessing (most of the time) and a curse (once in a while).

I was fortunate to be able to participate in the University of Chicago Celiac Disease Center’s Preceptorship Program in December 2014, where I had intense, specialized training in celiac disease and other gluten-related disorders. I also ran the 2014 New York City Marathon as part of the Celiac Disease Foundation’s Team Gluten Free. Some of my writings have been published in the magazine Gluten-Free Living and I have also been featured in the magazine Gluten Free and More. In addition, I was honored to be accepted as a member of the North American Society for the Study of Celiac Disease (NASSCD) in 2015.

I am currently enrolled in the Whole Health Medicine Institute with hopes to become a certified provider and be able to use the skills I have learned to help others on their autoimmune journeys. I am also a representative for EVER skincare, a new line of botanically-based beauty products that are 100% gluten-free and cruelty free. Please check out my website for more information and for ordering.617Please 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.


Contact email: thepatientceliac@gmail.com

84 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. Amy

      Hi Jess – May name is Amy – I landed on your site today here is why —-
      Thank you for your blog. I was diagnosed with TM in May of 2012, that changed to MS in Dec. of 2012 and am in the process of being diagnosed with Celiac now. Dec 2014. I am grateful for your blog and information as I wade into more auto immune waters. I am just starting drug therapy for MS. Not loving it but, I am hopeful that I respond well and remain walking. I did only food therapy since my diagnosis until now – Following Dr. Terry Wahls of the University of Iowa and her miraculous story, she is also a patient/doctor like you. I am already eating gluten free and found your site, wondering what the biopsy will tell me beyond what the endoscopy already shows (sad laying down villi). I feel pretty confident that eating gluten free will not be an issue for me, since I am a foodie already. I did not have a history of symptoms, but infertility was an issue in my first marriage, and many miscarriages post second marriage – I am thinking they are issues linked to my autoimmune issues. I swear I have brain fog even thought my Dr. says my brain is pristine! (All my lesions are on spine). I wonder if this could be linked to Celias and lack of nutrient absorption? Again – your blog is helping me! Thank you for putting yourself out there for people to connect!

      1. Jess Post author

        Hi Amy,

        I am so sorry to learn of your diagnosis with MS, but it sounds like you are handling it as well as possible.
        I love Dr. Wahls, I have not met her personally, but I have read all of her books and have the greatest respect for what she is doing to help improve the lives of those with MS and other AI conditions. She is an inspiration.

        The main neurological symptoms that I have experienced from celiac are a peripheral neuropathy and brain fog…when things were really bad for me, back in 2012, my short term memory was so bad that my then 3 and 4 year old were able to beat me at the game Memory over and over again. I was fully evaluated for MS, including an MRI of my brain and spine, and I had no lesions, so my cognitive dysfunction was gluten-related.

        As for whether or not you need a biopsy, it will be helpful so that the pathologist can give a Marsh grade as to how severe your villous atrophy is, and this will help to have a comparison point for when you have your next endoscopy and biopsy. Although it can take a while for the small inhtestines of adults to heal, 2/3 of adults have total resolution of the VA at the 2 year GF mark.

        I hope that this answers your questions. Please feel free to comment, email, ask questions, etc. at any time. I wish you the best!


    3. janet peterson

      I have ate total gluten free for 2 years, I have found it helps lots of my symptoms and have almost all 299 symptoms of celiac but had bad health insurance and couldn’t afford the testing and now want to get the blood test how much gluten do I need to eat for it to show up in the celiac blood panel? Thanks so much PS my Mother has celiac disease when she was alive, I know its hereditary

  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!


    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.

  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!

    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!

  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!

  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.

  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.


    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!

  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!

      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.

  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.

  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!
      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.

  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.

    1. Jess Post author

      I am pretty sure that I just responded to you under one of my posts (I am going through comments right now and sifting through all of the spam!) My email is thepatientceliac@gmail.com. You can write at any time. I will send you a message too.

  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…

      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.


  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.

    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.

  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.

  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!)

  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.

  18. Ashton Lee


    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.


    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!

  19. Ashton Lee


    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.

  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!

  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.

  24. Suzanne M

    Hi Doc

    Just came across your website. I will be following. I just got the call from the nurse today. Positive for Celiac. I am in shock as I did not go to the doc for digestive problems. Now that I think about it I have always had some pain and gas issues the last couple of years. I thought it was from lactose and being on too many antibiotics. I have asthma and tend to be on them when I get sick. I was on 3 rounds plus steroids this last Spring. The Levequin did me in. I thought it was the source of my stomach issues. I started to get rashes this summer. Two rounds of steroids (they give those out like candy to asthma patients). When I went in again my Internal medical doc had the thought to get gluten and some food allergy testing done. Those results were only 2 weeks ago. The gastro doc, and biopys came in short order after the blood work was positive. Whammo.. I am iron deficient as well as positive for a disease I do not know much about. No wonder I was out of breath and tired this last year or really couple of years. I thought it was the asthma. One doc told me I was out of shape when I told him I got out of breathe going up stairs. I am overweight but I am not 80 (51). I have been on iron a week and feel 5 years younger. I am still in shock. What do I eat? How long do I stay on vitamins (different medical people have told me different things from take a iron 3x a day to just a multivitmin from a month to several). I will be reading some of the back posts in the coming days. Who knows.. maybe sign up for a study. I am in the Chicago area and an engineer at a National Lab.. Keep Posting..


    1. Jess Post author

      Hi Suzanne,
      Thank you for writing.
      I cannot give you medical advice on here, but if I was in the Chicago area I would try to get myself established with the celiac center at the University of Chicago, as they are a great resource and do a lot of research on celiac disease.
      Since my diagnosis in 2010 I have taken the following supplements daily: multivitamin, Vit D, a probiotic, and a Vit B12 and folate supp. I initially had to take an iron supplement, but was able to stop it after about a year. I have my celiac antibodies, vitamin D and B12 levels, and a complete blood count, to look for anemia, about every 12 months now. As far as I know, the supplements that we take need to be individually tailored to our bodies’ needs, but the celiac center should be able to give you the best advice.
      I hope this helps. Welcome to my page and please feel free to comment, ask questions, etc. at any time. I have a lot of readers who are celiac “veterans” and I’m sure would be more than happy to help out.

  25. Eileen Frank

    Hi! My name is Eileen and I am a wife, mother, and RD [registered dietitian], who recently was led to self-diagnose myself just 1 month ago! My general/family MD dismissed my testimony upon my visit to him in August, exactly one week into my being gluten-free, in my attempt to convince him of the truth—that virtually all my miserable symptoms (experienced/suffered for months, if not years) were gone! He dismissed it all, however, because my situation does not fit his “old-school” classic Celiac disease. I had made an appointment with an immunologist/allergist, but could no longer wait for the 2+month wait for appointment prior to giving diet a try 1 month ago [yes, a big no-no in the diagnosis world]—but the pain and fatigue had gone too far; plus I didn’t really expect it to work for me! Then my MD insisted that a mere 1 week on GF diet would have already led to inaccurate blood testing (?), so he wouldn’t test it for me that week [though I have since read that a “prolonged” GF diet is the real problem]; and now I’m sure I could never handle a true gluten challenge [many weeks non-GF], since I just spent the past 3 days in almost intolerable pain following relatively small doses of gluten that I inadvertently accepted at a wedding reception the other night! The pain extending from my neck (down into my shoulder/arm) was worse than ever—which I’m guessing is because I had been completely freed from the immune/inflammatory response for a few weeks, so the new insult to my system was ever-more extreme [yes??]. But I’m feeling much better again tonight (3 days post intake). Thank you for your testimony and encouragement to speak out!! Speak and teach (online and in my practice) I shall! I look forward to your ongoing postings of studies/evidence needed within the medical field.

    1. Jess Post author

      Hi Eileen,
      It’s nice to meet you. Thanks for introducing yourself and telling your story.
      I am ever amazed by how much the smallest traces of gluten can throw my entire system into disarray. I would feel like my entire body was hit by a truck every time I was glutened in my first year or so after going GF. Now that my body has healed, I’ve found that I tolerate cross-contamination much better than I used to.
      I am sorry that your MD seems to be so clueless about celiac disease, but fortunately you have been able to figure things out yourself.
      Please do write, and teach, and spread awareness. I truly feel that if enough of us work together that we can make a huge difference in helping to get others diagnosed and support them as they go GF. Being able to have this blog and connect with others has had a huge impact in my life. I am looking forward to (hopefully) being able to interact with you from time to time!

      1. Eileen Frank

        Thank you so much, Jess, for your response & kindness. This experience is still new to me (only 1 month now). And I found your site yesterday when I googled “can celiac cause arm pain” since the pain from my neck had never extended down into my arm before, until I was re-glutenized over the weekend. [It brought me to your article on joint pain]. I suppose I’m feeling rather guilty/bothered by the lack of an officially-documented MD dx. But, regardless, I’m absolutely certain of my gluten intolerance [?celiac versus non-celiac sensitivity]; yet thinking I should request the genetic testing [if covered by my insurance] in attempt to rule-out/in celiac dz specifically. I’m actually excited, though, because this personal need has now fueled my new passion for studying GF diet as a specialty within my profession (as well as to help via blogging). So surely I’ll be including re-visits to your site. Best wishes to you.

  26. Carolyn Gunning

    My daughter age 15 was diagnosed with Celiac in april 2014. It is now the end of Septmeber and she is experiencing terrible problems with pain throughout her intestines. Also joint pain, vertigo, fatigue, low blood sugar at times.

    I am about to start her on a low fodmap diet but need some direction. Need to find a book or something for help. I also think we may need a bit of modified paleo but also need a book for support.

    I can’t believe the pain she experiences and we did have blood tests to rule out a number of things. The pain appears in different places. After reading your blog, I believe sugar eaten almost 12 hours before or more is causing the intense pain. My daughter’s doctor agrees that I need to put her on a special diet and then we will talk again after 4 weeks or so.

    I feel like I’m on my own trying to figure out what to feed my daughter. Any guidance would be helpful.


    1. Jess Post author

      Hi Carolyn,
      I am so sorry to hear what your daughter is going through.
      There is a HUGE learning curve for the gluten free diet at first, especially in regards to cross-contamination, both within the home and when eating outside of the home, that my first concern/question would be whether or not she is still unintentionally being exposed to gluten. The #1 cause of non-responsive celiac disease (continued symptoms after 6 months of being GF) is gluten exposure. My symptoms from gluten cross-contamination became worse and worse after I went GF, and I eventually developed neurologic complications from celiac disease after 2 years of being GF. FODMAPs issues, etc should not be causing joint pains, vertigo, etc…to me these all sound like celiac-related symptoms.
      Is it possible for your daughter to be seen and evaluated at a center that specializes in celiac disease, like the University of Chicago or Columbia in NYC. There are nutritionists who specialize in celiac disease at places like this who would be able to guide both of you. If not, has your daughter’s doctor at least had her celiac antibodies retested to see how her numbers look? After 6 months they should be quite a bit lower, and if they are not, this may key you in that cross-contamination is the root cause of her problems.
      There is a ton of information on the internet, and much of it is helpful, but in your daughter’s case, before embarking on further diet restrictions, it it essential to know whether or not her ongoing symptoms are actually due to gluten or not.
      I hope that this helps. “Real Life with Celiac Disease” by Dennis and Leffler is one of the best resources out there that I can think of off of the top of my head.

  27. Kelly Rickett

    Hi There,

    Just wondering…Have had very similar experiences to you my whole life, mono in Fifth grade, stomach issues, barium x-rays, diagnosed with “IBS”, frequent diarreha, always had trouble keeping on weight, accused of eating disorders due to this. Anyway, my Mom has full blown Celiac disease, I however have blood tested negative for all, while eating gluten. I also had negative biopsies nine years ago. Would the next step be to re-do stomach scope or genetic testing? Still have all of these symptoms, and now just straight fatigue!!


    1. Jess Post author

      Hi Kelli,
      Thank you for stopping by my page. I am sorry that you are feeling so lousy. Although I am unable to give out medical advice on here, if you were my friend, and were having both symptoms of celiac and a strong family hx, I would suggest going straight to endoscopy and biopsy so that you can have answers. Celiac can develop at any time during life, so even though you tested negative 9 years ago, it’s entirely possible that you have it now. I hope this helps.

  28. Susie j

    I literally cannot read anymore. I am sobbing and ready to vomit. Thank you and your bloggers. I am 52 and I have been sick since 19. I have seen everyone and been given every diagnosis. I started vomiting 3-4 x per week at19. Severe dermatitis herp for 25 years, depression, no energy, muscle and joint pain, pancreatitis, gall bladder disease, blood cots in my brain with bilateral an d right juggular occlusions, rectal pressure feeling like I am delivering, teary, bloating and weight gain no matter what I tried, projectile vomiting, mono at 7, inflammary reactions to isothionolizones, low on vit d, sky rocket histamine problems, no libedo (god bless my husband who just happens to have severe rectal bleeding with gluten but testing negative), visual changes of frontal lobe fog with nausea and blurred vision. I have been through it all. I have begun to be gluten cosher. What do you think? I am just going out of my mind???? I a pediatric occupational therapist and thanks to my families, I have learned from all the ADHD, autism and behavior kids out there that gluten is my enemy. I am just learning about cc since yesterday. I am ordering a shirt that reads “I love Jesus but I cuss sometimes”. The medical community should off their high horse. I do have a good DO who is working with me. Oh yeah and one more thing. I want to derm to check out what this rash is and they never suggested anything, steroids only. At the same time , I asked for a spot on my face to be tested although they were not concerned. Squamous cell carcinoma! I’ll stop there. God bless you. Open to anyone who can contribute.

  29. Ross Jason Goldstein

    Hi Jess, long time no communication. Everything was going real well with the “diet” (off wheat products for a year now and my digestive tract is much different… However, I’ve stumbled across ideas that if a person has problem with gluten, they probably will have problems with zein in corn… I mention this because my wife and I spent December at her family’s home and on the road, where we found ourselves eating much corn tortillas and tamales and suddenly I found myself with very similar issues, as if the corn was mixed with wheat…

    But, this is NOT why I write you today. Thursday I had a heart attack… and I ran 3 miles in the middle of it… Since I thought the pain in my throat and lower jaw was from an alergic reaction to soy in chocolates I ate in the morning (since “high quality” dark chocolate caused immediate headaches and joint pains in January, while I have no problems with pure cocoa beans), I didn’t seek a cardiologist until Saturday, after receiving the results of bloodtests I had ordered on Friday that showed high AST and high Lactic Acid in my blood stream. Saturday evening I had an angiogram done and had two stents placed in two of my heart arteries. The artery that was blocked was the smallest of the arteries and the cardiologist said that it was too late to change that situation and that it really doesn’t make much of a difference. Towards the end of the placement of the stents, I had an allergic reaction to the Iodine placed in my heart for imaging… My pulse increased from 68 to 200 and my body went into uncontrolable shivering/spasms… all because no one asked me if I have a history of allergies to clams… I’ve eaten long-necked clams 3 times in my life and with the same horrible reaction… It took them 30 minutes to control the reaction. In the meanwhile I lost consciousness. And when I came too afterwards, I couldn’t see for a few hours… Although the mishap was the falt of the doctors or the nurse who didn’t ask me if I had alergies to seafood (a reaction to yodo in the image resonance ink supposedly is less than 10%, although this was the first time occurance for my intervention cardiologist), they still charged us for the cost of all of the medicine used to control the reaction.

    Considering this mishap or the lack of asking questions before prescribing powerful drugs, I’ve put on hold taking any of the 4 drugs the cardiologist prescribed me yesterday… One says, “not to be used if the patient has a history of asthma or respiratory problems” But, the doctor didn’t ask me if I was asthmatic (I was but supposedly ceased being diagnosable… my asthma has been called “Seasonal Asthma” and appears often in response to allergic reactions, like mold spores, dust particals and who knows what else triggers it…)

    Do you know anything about the risks of people using Statins and other drugs for arterioscleris who have a tendency towards allergies or who do not metabolize histamines adequately?

    As I’m sure you know, not taking the statins or the blood thinners or the platelet unstickers seems reckless on my part. Then again, taking whatever drug prescribed by a doctor who I can assure you doesn’t truly know all that’s behind how those free samples given him by his pharmaceutical rep, also seems extremely reckless.


  30. Jessica

    I am wondering if you have any experience with the at home rapid blood test kits that are available in Canada? I used one on my son and received a very faint positive for the celiac antibody. I’m worried that when I take him in to the doctor that it will be read as within the ‘normal’ range in blood work.

    1. Jess Post author

      Hi Jessica,

      I do not have any persoanlly experience with the rapid home tests but perhaps someone who sees this comment will have some experience using them and reply. I learned a little bit about them during a lecture at the International Celiac Disease Symposium in 2013 though.
      My limited understanding is that either way that a positive home test would need to be confirmed with a celiac antibody panel including at the minimum TTG IgA and IgG antibodies, and that your son would not be able to be diagnosed with celiac based on a home screening test alone.
      I wish you well.

  31. Leidy Suares

    I am 35. And I have been sick all of my life. I almost died of measles when I was a baby and after that, my life changed. My mother told me that I was limping when I began to walk but after some months I recovered (miracle or maybe a change in my diet). During my childhood I visited the emergency hospital almost every month, always the same motives: diarrhea, vomit and pain in one leg.Doctors only prescribed me antibiotics because they believed that was bacterial problem. Every morning, when I arrived to my school, I almost vomited my breakfast. I began to hate having breakfast and I became almost anorexic, I felt better when I didn’t eat. Then I developed chronic gastritis. When I was 15, I had a terrible acne that almost destroy my face. Dermatologist diagnosed me with cystic acne. I was diagnosed with Helicobacter pylori at 18. After struggle to finish my degree at the university, (my visits to emergency room were as always frequent. But doctors always told me that was because my gastritis and my esophagitis reflux), I moved from Colombia to Spain at my age of 25. That year I was sick all the year (maybe the big change in the diet because the difference between countries, in Spain the bread is used in all the meals). I was in the emergency hospital at least three times during a month. My doctor was almost crazy because he thought that I had cancer because I lost a lot weight. I couldn’t digest food. Doctors did many tests: gastroscopies, colonoscopy, blood tests, scanner. All were normal. I was diagnosed with dyspepsia. Five years ago, I was working in my PhD project with doctors and one of him took my case for trying to find answers. He did all the tests possible, even an MRI of my abdomen. He tested me for celiac disease by using biopsy. The results were all OK. He only found an abnormal thickening of my duodenum. The diagnosis was IBS. I have been doing a lot exercise since 10 years ago, spinning, running, almost every day. Five years ago I began with low back pain that goes and come and that made me stop of doing exercise during weeks. I always recovered with physiotherapy. But two years ago that problem was quite often then I had to change my type of sports. I began to do pilates but my back pain continued. I was diagnosed with scoliosis.
    I move again to UK. And again I began to worsen and again I changed my diet (I was studying at English school and for lunch I always ate a sandwich). Since one year and a half the pain is there all the time, most in my left hip. And one year ago, one day, I collapsed, my arms became heavy, my legs were weak. I developed depression and I began to suffer anxiety crisis. I barely could move. I was on the bed three weeks. I was diagnosed with fibromyalgia after all the tests came OK. I was tested for lupus, sclerosis multiple, arthritis, vitamin deficiencies, HIV, hepatitis. Doctors only used blood tests. Then I began to swim and to take vitamins and supplements, I went to therapies with an osteopath, I was at home recovering for three months, eating healthy but I was still eating bread. Although my heaviness in my arms stopped. My pain in my hip and low back is still there. Two months ago after speaking with my sister who is suffering the same since 5 years ago. She told me that her boss told her about the celiac disease because her daughter is celiac. Then I began to research about the non-celiac gluten sensitivity. I didn’t go to the doctors. They don’t pay attention to me after they decided to classify me as fibromyalgia patient. Then I began the gluten free diet. First week, and my anxiety crisis stopped. I was having one or two every week. I’m not anymore sad. The mouth ulcers stopped of appearing (before were almost every two weeks). My bowels are excellent. I’m not bloating anymore. Except that I had two allergic reactions that I have never had. I became allergic to grapes and beef meat. Is it common? That after the gluten free diet you begin to have allergies. I am still feeling tired most of the time. And I am still having pain in my left leg. I’m not sure if the gluten is the cause of that pain. It is clear that I don’t have any damage in my leg ( the pain is like a pangs). I don’t know what else I can do. I’m waiting that the diet also works with the pain. Could you suggest me something?

    1. Jess Post author

      Hi Leidy,
      I am just “catching up” on my blog and email. I saw that you emailed and I am going to respond to you privately very soon. I did post your comment with your story so that others who might be having similar symptoms can see that they are not alone in all of this.
      I will be in touch soon.

      1. Leidy Suares

        Thanks for your inestimable help. I am improving, slowly, but improving with the GF diet. But I mentioned, I am having allergic reactions to non-gluten foods. With your information, I am trying to figure out what is happening. I will keep inform. My doctor tested me again this week for checking my thyroid function because I am having tremors and heaviness in my arms, and extreme fatigue.
        Thanks again.

  32. Lea

    Hi Jess
    Thanks for sharing your information on the internet- it’s such a valuable tool.
    I have a question which revolves more around gluten sensitivity as there is conflicting information on the net. If you are unsure of my questions also would you recommend anyone with further knowledge?
    My family has a history of autoimmune diseases and intolerances to gluten. We all improved without the gluten and show up negative to coeliac.
    My daughter just turned nine (skin prick test was positive to wheat) at the age of seven. When she doesn’t eat wheat for a period of time her rash she gets goes completely. As we thought this symptom was not too severe we introduced wheat again. When eating wheat she suffers from joint pain , fatigue, tingling or pins and needles , nose bleeds and more recently neurological disturbances (2 occasions only). There doesn’t seem to be much information that I could find. Can you present with wheat allergy on skin test but not coeliac? Is there good information on the affects of gluten on the brain? Can you recommend the best articles to read?
    Thanks for taking time to read this and providing your website
    Look forward to hearing from you

    1. Jess Post author

      Hi Lea,

      Thank you for writing. I did write a bit about the effects of gluten on the brain and nervous system a while back and here are the references that I used:
      For further reading on the this topic I would suggest the following links:

      1. “Brain Abnormalities Common in Celiac Disease Patients,” by P. Harrison, published in Medscape Neurology News on September 10, 2012.

      2. Dr. Hadjivassiliou’s Lancet Neurology article, “Gluten Sensitivity: From Gut to Brain,” published in March 2010.

      3. Living Without Magazine article, “Gluten Attack: Ataxia,” found in the Feb/Mar 2011 issue

      I was also interviewed for an article about the neurological effects of gluten that was published in 2014 in Living Without Magazine: “Gluten and the Brain.” Interview with Christine Boyd for Living Without Magazine, April/May 2014 issue. If you’re unable to get your hands on a copy, please email me and I will send you a copy.


  33. Anne Cable

    Hi Jess! I came upon your site because I noticed you have both MCAS and Celiac, and you are the only other person I have heard of that has both these.. My immunologist is treating me with high doses of H1 and H2 medications, along with montelukast. My celiac is easy compared to the MCAS. I am on a low histamine diet (along with the gluten free diet), and that has helped, however I have “break through” swelling and have had 3-4 ‘attacks’ in the past couple months. Any suggestions on how to better manage so I can lessen the attacks any thoughts or advise would be appreciated. I would love to know more about your story with the MCAS. Thank you!

    1. Jess Post author

      HI Anne,

      I am sorry that you are suffering with both conditions too…my intuition tells me that they must be related but the science to support this is lagging.

      I’ve interacted with many with MCAS and celiac and it seems like we often have to take an individualized approach. I’m not allowed to give out medical advice on this page, but my symptoms improved with this combination: low histamine diet, strictly GF and sulfite free, H1 blockers, cromolyn sodium, quercetin, and a good quality probiotic. I’ve been able to do away with most of the supplements and am now on just the probiotic (Florajen 3, which is definitely GF) and Allergra once a day.

      At some point, when I really have time to dedicate to it, I will write an updated post on MCAS too.

      I wish you well. Thanks for reading and commenting.


  34. M

    I cannot believe how much your story seems like mine. I was told I was crazy and needed to take medication because I insisted something wasn’t right. That was in 2009 and I have been since diagnosed with Hashimotos, Celiac and for the past year or so I have been suffering from MCAS too. It is nice to know there are others out there that are going through what I am.

    1. Jess Post author

      Hi M,
      I agree with you. Although I hate to know that there are others who are in the same boat as me, it’s reassuring to know that we are not all alone in this. I can’t even start to tell you how many times people insinuated that my symptoms were all in my head too. It’s good to be on the other side though, and to no longer be walking around feeling like crud all of the time, isn’t it?
      Now we just have to figure out why so many of us have both celiac and MCAS…

  35. Anne

    Jess – I seemed to be unable to take any antibiotic without a Mast Cell reaction. Have you had any luck with antibiotics? Just curious! Thanks for sharing what you do to control your symptoms. I too swear by the low histamine diet and the sulfite free explains a lot too! Let me know! Appreciate your website!

    1. Jess Post author

      Hi Anne,
      I really can’t answer because the only antibiotic that I have taken since my MCAS diagnosis was a short course of Keflex for an early cellulitis. I did not appreciate having a mast cell reaction when I took it.

  36. Linda

    Good afternoon. I just happened upon your site and thought I would send a quick note. I was diagnosed at age 29 about 21-years ago; long before the gf fitness craze that now seems to rule the world. At time of diagnosis there were few gf convenience products available; most were mail order and all were very expensive. I live with a double-whammy as I also have a pretty serious (anaphlactic) allergy to all tree nuts. I do pretty well following my diet and have managed to stay active and keep my weight in check. I still have days when I don’t feel well and I’m hungry if I don’t plan meals and snacks. Eating is such a social part of our lives and this birth defect, as I like to call it, can be difficult. I get cold sores if I eat something with gluten and I can get pretty confused/unfocused. I’ve started to wonder how different my life might have been if I had been diagnosed at a young age. Thank you for listening.

  37. Em

    Hi Jess,

    Thank you for sharing your experiences and insight. I have celiac disease and have recently (in the last 6 months) had problems with systemic swelling and itching and fatigue. It’s also come with mild pain in the muscle/joint areas. Lupus/Lyme/RA/Sjogren’s have all come back normal and TSH is normal. I am very sick and suspect MCAD. My problem is that I can’t seem to find a specialist who knows anything about MCAD. I also suspect there might be an underlying form of Ehlers Danlos syndrome. Can you recommend a few physicians who can diagnose and treat a complicated case of MCAD? I am in Maryland, but will travel anywhere to find a diagnosis. My symptoms have been borderline disabling, so any help or guidance would be so much appreciated!!

  38. Jennifer

    Hello! I somehow stumbled upon your site while searching for information about probiotics and gluten sensitivities and I’m happy I did! Lots of good info.

    My 2 and a half year old had a major “ataxia” episode in January of 2016. Was hospitalized for 3 days. Between then and February he’s had a couple of MRIs, a lumbar puncture, lots of bloodwork, urine tests, an EMG, a nerve conduction study and genetic testing done. To this day the only thing we figured out (and I suggested this to his neurologist… no other Dr we saw thought about it) was that my son is sensitive to gluten. I took him off of gluten in February after discovering there was something called gluten ataxia. Do you know much about it?

    I also had his neurologist test him for the “Celiac gene” a few months ago and it came back positive for one of them. His Celiac panel came back negative though, back in February. So would this mean he has a gluten sensitivity and not Celiac? He does not have the typical Celiac gastro symtoms. It’s more neurological for him.

    My son got better being gluten free and when he did accidentally consume gluten, I noticed his symptoms coming back. He would get very “wobbly.” It took me months, though, to realize all the specifics about gluten- such as gluten being in foods you would never think of. I also didn’t realize, until recently, just how sensitive, I think, he is to cross-contamination and that just because something is “certified gluten free” doesn’t mean it has zero gluten in it. I think my son is even sensitive to trace amounts, so I try to make sure whatever he eats has less than 5ppm. The reason I think he’s so sensitive is because he still shows some signs of ataxia- it got better but lately he’s slightly unsteady, balance is a little off, hands shake like a hand tremor, has twitching in legs, knees give out/buckle in at times. I think he is still getting small amounts of gluten in him. Could he be THAT sensitive to gluten?? I also just took him off of his probiotic (Renew Life brand) for fear that even though it says gluten free it still may contain trace amounts. I just started him on it a month ago and it seems like he’s gotten worse since then. Have you read this article about many probiotics (even ones that say gluten free) contain gluten? http://nyti.ms/1AjlPzL

    I only purchase pre-packaged foods from company’s with a dedicated gluten free facility and I’ve also gone as far as to buy separate pots, pans, utensils, dishes for him. I’ve read that some people are so sensitive that they can’t have anything baked in the same dish that a non gluten free food was baked in. Seems crazy but I guess it’s really an issue, right?

    I’m really hoping my son’s issues DO stem from gluten, as that’s a semi-easy fix. 😉 I am praying it isn’t something else- like some sort of ataxia that only gets worse as time goes on. Could all these small amounts of gluten be building up in his little body and be causing the ataxia to worsen? The past few days his voice has become hoarse and I read that’s another symptom of ataxia. How long can it take for gluten to completely leave the body?

    Thanks for taking the time to read my story and for you’re wonderful blog. I look forward to reading through it more.


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