A digestive disease that interferes with the way we get our nutrients from food, celiac damages the small intestines from an immune response to gluten. Those with celiac disease (celiac, for short) can’t tolerate or digest gluten…a protein mostly found in wheat, rye, and barley. While gluten is found mainly in foods, it may also be found in everyday products such as medicines, vitamins, cosmetics, and even things like barbecue charcoal.

When Celiacs eat foods or use products containing gluten, sometimes even the tiniest bit, the villi which are the the tiny, finger-like protrusions lining the small intestine can be destroyed. The villi allow the nutrients of the food we eat to be absorbed into our bloodstream. As a result of this, no matter how much nutritious food we eat, without healthy villi we become malnourished almost as if we are slowly starving to death.


Celiac disease runs in families, meaning it is genetic. In some people it never becomes active, although their blood test shows the genetic marker. In others it is triggered by stressful things that happen to our bodies like surgery, pregnancy, a bad infection, or severe stress. In many Celiacs the disease is showing its symptoms to one degree or another but we do not know it because it is being mis-diagnosed as Irritable Bowel Syndrome, Crohns Disease, emotional illness, or growing pains. Unfortunately most Celiacs don’t know they have it for at least six years after their symptoms are actively showing up.

What are Celiac Symptoms?

Even though celiac is mainly a digestive system disorder, symptoms can show up in many other systems and organs as well. Some of the most common early symptoms of celiacs are:

  • abdominal bloating and pain along with diarrhea (sometimes chronic)
  • unexplained weight loss (in some cases weight gain)
  • irregular and/or constipation and other issues with stool

In children, especially during the years when nutrition is critical to a normal development, celiac can cause delayed growth and short stature, late onset of puberty, and problems with their permanent teeth.

When celiac symptoms show up in adults (after not recognizing or having symptoms as a child) one can imagine what happens to our entire body, mind, and soul from years of not getting the right nutrients from our foods. Years of celiac disease going undiagnosed can result in one or more of the following:

  • Anemia or iron deficiencies and chronic fatigue
  • Unexplained joint pain or arthritis
  • Bone loss or osteoporosis
  • Anxiety, depression or other mood challenges
  • Unexplained seizures
  • Issues like missed periods, infertility or miscarriage (often multiple)
  • Canker sores inside the mouth, rashes, hair loss, brittle nails

…and in severe cases as a result of long-term lack of nutrients, whether symptoms ever show up, it is now understood that Celiacs may have:

  • Cancer, especially of the intestine
  • Autism & Asperger’s Syndrome

Why are there are so many variations in the symptoms?

Mainly, it has to do with the amount of damage to the small intestines. The longer you go before knowing you are a Celiac, the more gluten you have consumed therefore the potential for extreme, irreparable intestinal damage.

Research is ongoing about why celiac affects different people in different ways. Some important early findings suggest that the later in life we start eating food containing gluten along with the amount we eat on a daily basis are two key factors. Some studies suggest that the longer we are breastfed also plays a part on when symptoms show up and how severe they will become. The bottom line is the longer we go undiagnosed and untreated the more likely we are to have a more severe case with a greater number of symptoms and complications.

Understandably one of the main reasons for the creation of Jennifer’s Way, due to so little understanding of celiac, even in the medical community, is to inform and guide others in hopes they do not also go through years of medical misdiagnosis, pain and suffering.

How do I get diagnosed?

Recognizing that you have celiac is really difficult since the symptoms are very similar to so many other diseases and medical conditions. It is often confused with menstrual iron deficiency anemia, diverticulitis, infections of the upper and lower GI, chronic fatigue syndrome along with the chronic conditions mentioned above (IBS and Crohns).

It is now estimated that over 2 million Americans (1 in 122) have celiac and among those who have a family member with the disease it could be as high as 1 in 22. Celiac also tends to show up more in people with other genetic problems like Downs Syndrome and Turner Syndrome, a chromosomal condition in females. The good news is that reliable blood tests are now available and the medical community is becoming more aware of the seriousness.

If you think you have celiac disease and intend to get diagnosed it is imperative that you do not change your eating habits. It is important in this case as it is thought that eliminating foods with gluten can produce negative test results even if you actually have celiac disease. Without changing your diet, ask your doctor to have your blood tested for celiac.

Next, if your blood test suggests a high level of antibodies called tissue transglutaminase and you are experiencing other symptoms (mentioned above), your doctor should then perform a biopsy of the small intestine to see if the villi are being damaged. In a biopsy a tiny sample of tissue is removed from the small intestine with a tube called an endoscope. Some Celiacs (from 15 to 25%) also have a symptom called DH (Dermatitis Herpetiformis), which is a blistery and really itchy skin rash usually on the knees, elbows, scalp, back and the buttocks. Amazingly, those with DH show very few if any of the digestion related symptoms of celiac. In those cases a skin biopsy is usually taken before the intestinal biopsy.

How is Celiac treated?

Celiacs MUST maintain a gluten free diet. Depending on the degree of damage to the body, some people show immediate improvement in symptoms after removal of any food or products that contain gluten. Reading the ingredients for everything you put in or on your body is very important and key to finding relief.

Some people, unfortunately, show little or no improvement even after total elimination of gluten from their diet because the intestinal damage is too severe. This is more common in older people who have gone undiagnosed for several years or decades.

Gluten is everywhere and in an astonishingly high number of foods, as well as vitamins, drugs, cosmetics and other items in which we come into contact. It’s also important to be aware that even products that claim to be “gluten-free” can be contaminated with microscopic amounts of gluten from another part of the factory or kitchen. Cross contamination can happen very quickly and easily in restaurants or at markets (organic or not). Fresh meals are being prepared with the intent of being gluten-free but are contaminated during preparation with a knife or cutting board that was exposed to gluten.

What can I do beyond eliminating gluten?

After years of damaging our bodies internally, we Celiacs are learning that eliminating gluten is not the only answer to finding relief. Our systems are used to eating in a certain way so a dramatic change in diet can affect us in ways we do not expect. In other words “withdrawal” from gluten based foods can create mind, body and soul symptoms that can be as debilitating as the physical symptoms from the disease.

The creation of Jennifer’s Way was motivated by so many aspects of having celiac disease. The journey to being diagnosed, the search for useful information, and the motivation to learn to live again. Did you know certain herbs and spices in foods and beverages have calming, anti-inflammatory, energy increasing, soothing and/or other beneficial effects? This site will be rich with suggestions, ideas, recipes, resources, and thoughts that promote better, healthy and wholesome living. It will also include some of the positive results I found myself in my quest for a wholesome life.

Ever Onward ~ Jennifer

This Post Has 67 Comments

  1. Kristine ODonnell

    Omg the skin thing you’ve described it’s everywhere you said exactly! Again drs said its “just” from auto immune! Really? How sexy do I feel? It’s horrible I’m freaking out about this too, because they said its a new permanent thing. I mean really? Crohn’s, R.A., plus other form of arthritis now this! After 5 surgeries, countless hospital stays not just a day I’m usually hospitalized for weeks at a time. And now this skin thing is driving me insane, like not having an ounce of energy, taking a simple shower knocks me out then the constant itching and the scaly thickness I’m just shocked. Thank you Jen for writing this!

    1. Jen Brown

      I had the blisters too all over my legs as well as a ton of the other symptoms. It’s awful! Because of Celiac my body wasn’t absorbing the nutrition and I was severely lacking Omegas. My natural dr put me on 13 Omega 3 Salmon oil capsules a day that had DHA and EPA. The blisters went away. If I take less than that, they come back. I wonder if that is just my case

    2. Alma

      I can tell you the skin problems you are describing are the EXACT thing I have had, and no doctor would tell me it was possibly celiac…even said it was scabies…so the meds he gave me made it worse…he did a biopsy, but tested me for cancer in stead of celiac , then just in passing when I mentioned I had all the symptoms of Celiacs he just shrugged and said Eh…try gluten free if you want but I think you need allergy testing….well I did the gluten free and never looked back…the sores were crater like, I scratched until I couldn’t scratch anymore, all over my back, knees and elbows…it cleared up in a matter of weeks! all from changing to gluten free….also it is the ONLY thing that helped me…also use gluten free soap, Vanicream and Wheat free Hairspray and products and lotions. Thank you so much Jennifer for writing this! you are an inspiration! what you do is very very important to many people!

      1. Dave LaBranche

        I had the rash too. Elbows, hands, ankles … Sometimes my face. At least I’m a guy, I’d grow a beard and not shave until it went away. I’d scratch myself raw tho and it hurt so bad. The dr kept telling me I couldn’t have Celiac cuz if I did I wouldn’t be fat, I’d be withering away. He kept telling me my weight was my problem. After fighting, finding a new doctor who listened to me and didn’t dismiss everything as it’s cuz your fat, I started really thinking I was going crazy. The old doctor told me I needed to eat more wheat and that made things worse. The he told me it was stress related, which duh. I’m in my 30s. I know my body and I was terrified. I saw Jen on Katie and was like oh my God! I have some of these very same symptoms! My new doctor did the blood test and put me on a gluten free diet. Weight is falling off me. Partly because I feel so amazing that I can’t sit still and partly because I’m eating better for MY body. I no longer feel sick after meals. I’m already down 10lbs which I know is likely due to my swollen insides. I feel so amazing finally. A million thank yous aren’t even enough :-)

    3. Trey Marie Alvarez

      Miss Kristine
      I know it may sound crazy but my daughter uses Dr. bronners shampoo (the light blue label) not only on her scalp but she uses the same shampoo on her body and the next day after using it, NO KIDDING, we saw a HUGE difference. On her scalp all the scaling was COMPLETELY gone! I could not believe my eyes. She has used it now for two months and her skin looks back to normal. The only draw back is your hair will feel like straw so you really need to condition.
      I hope this works:)
      Trey Marie

  2. Kristine ODonnell

    Jen we don’t have this kind of bakery where I live Kent Island, Md. Ever think of franchising ? Oh how I’d love that, also do you sell your flour? I love to bake and want to try your recipes, but I don’t know where to begin to find all the ingredients. I’m new to all this and just taping into your site. First things first though, I’m going to tell my GI Dr to test me, if he can tell me I have crohns after being diagnosed with MS, lymes, RA, etc… Give me colonoscopy every six months and endoscopy and blood test after blood test, then he better hear me! Thank you for all this, sorry for all the comments, I’m just excited someone else out here knows what I’m going through!

    1. Dorothy

      I was “diagnosed” by something called applied kinesiology (muscle energy testing) by a chiropractor if you are interested in a less invasive method–? You may come off as sort of a nut but I tell people I fell so much better not eating the gluten and they really cant argue :)

  3. Denise


    Thank you for being an advocate for those of us whose voices cant be heard. Thank you for using your celebrity status to help bring attention to what we go through and what it means to live with this.

  4. Keri

    I agree with Kristine! I live in Portland, OR – and I feel like there are some ‘gluten sympathetic’ cafes/bakeries/restaurants, but you should franchise! Portland would love it!!

  5. Mike

    Jennifer, Were you able to attend the Gluten Summit a few months ago? Cyrex labs has a number of arrays to sort out Celiac, gluten sensitivities, and cross-reactivity (once the person’s immune system reacts to gluten, it turns on other items that approximate it – ie dairy, etc.). Go through the online video/audio interviews and they will rock your world! It is not only genetic, but predisposition and toxic load from the biocides that are weakening our immune & digestive systems. By the way, they are finding that gluten expressions are traversing the blood-brain barrier (meaning headaches, depression, mental fog, etc. – what you experienced). Here is the website: http://theglutensummit.com/order/

    1. Johnh Schuler

      Hi Mike,

      Thank you for the information. However I’m a little disappointed that there is a cost to get the information on the website. It is no different than when we go to the store or restaurant to buy “gluten free” it is always at a higher price than non-gluten free items.

    2. Mairi

      Mike, I agree with you on what you have to say. I’m having multiple difficulties and was excited to click on your link. However,the cost and no accessible information was highly disappointing.

      1. Michael Schneblin (@Schnebsy)

        Hey, guys! I’m sorry I can’t get you a discount on the talks. I can send you one or two of the transcribed talks. The cost for the programs, though, I think are very inexpensive considering the trouble of collecting all these interviews with scientist, researchers, doctors, naturopaths, et al. Just one consultation with any of these cost $90. So, I’m sorry that you can’t enjoy them and really don’t understand your disappointment. The simplest first step is to cut out all gluten-oriented foods for a month and see how your body responds. My arthritis and headaches definitely dissipated. If that honeymoon period wears off and it kicks in, again, your immune system may be attacking substances that might closely resemble gluten (we call it cross-reactivity). You don’t have to pay for the privilege to get some relief. Give me an email and I will send you the cross-reactivity pdf. It would be a disservice to send any more than that.

  6. Johnh Schuler

    Jennifer, Thank you for being on Fox News Today! I have been on a gluten free diet for many years and still find it hard to stay on the diet. I was sick for over a year before I was diagnosed. My joints and muscles hurt to the point it was hard to make it through the day. I would get dizzy spells to the point it only helped if I laid down. I had chest pains and the doctors though it was my heart. I landed in the hospital several times with chest pains. Finally after whole body scans, chest x-rays, and lastly an endoscopy I was diagnosed as “gluten intolerant.” After going on a gluten free diet my symptoms improved immediately. Even though I follow a very strict diet there are times that somehow I get gluten in my system which results in diarrhea and stomach cramps. We rarely eat out because of the lack of knowledge of this disease in the restaurant industry. Thanks again for sharing your story which will help in making more people aware of this disease.
    John Schuler

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  7. Helen

    Hi…. im so frustrated with being misinformed by doctors. I had severe symptoms for years and was diagnosed with irritable bowel syndrome, and told to pay sttention to what worsened my symptoms and cut it out of my diet. Gluten appeared to be the culprit, so out of my diet it went. I accidentally “glutened” myself and had horrific symotoms and went to see a doctor (at a new practice) who said that he believed I have celiacs. However because I’ve been gluten free for so long (12 months) the celiac test won’t be accurate, so there is now the possibility that I my have to do what theyre calling a gluten challenge to get a diagnosis! I really dont want to make myself ill and am well and truly fed up now. Why did no one think to test for celiacs in the first place?

    1. Shelly Binkley

      I had a DNA test done through Dr. Peter Osborne through gluten free society. org He told me several years ago to get off the corn and rice (white and brown) and my migraines/headaches went away (most of them cause by these two foods) and I dropped forty needed pounds. And the DNA test doesn’t matter if you been gluten free x amount of time.

      1. bobbobwhite

        Corn and rice don’t have gluten in them unless they have been cross contaminated by being processed in machinery also used for wheat, or by a careless kitchen staff mixing knives, spoons, bowls, etc. in the same manner. Corn and rice milled in dedicated processors(e.g. Bob’s)are two of the grains celiac sufferers can typically eat without problems. Are you sure you have celiac? Seems to me something else unless those you ate were contaminated with gluten.

  8. Carol

    I saw you on the Katie show last night. I couldn’t sleep (usual for me) and Katie was replaying at 1 am. Thank you Jennifer!!! I now know I’m not crazy. You listed all the symptoms that I have had all my life including panic attacks. Though I have taken most gluten out of my diet for 2 yrs now, I still experience problems. I really believe I have celiac. I look forward to reading your book and website. Wish I was in NY to go to your bakery. Keep up the good work!!

  9. Ellen

    Hello Jenifer, Ty so much, I saw you on Fox News this morning, all the symptoms you said I have , I was not diagnosed yet , having colonoscopy
    And endoscopy today, I have autoimmune problems , sjogrens , fibro , Ra, raynauds, ibs, herd, I am going to try to eliminate gluten slowly , I find when I don’t eat wheat I do feel blah , I know I am toxic, lymphatic involvement

  10. Jorge J. Wellmann

    Dear Jennifer,

    My name is Jorge J. Wellmann and I am a Celiac… It feels so great to be able to say it and know what my diagnosis really is and how I can begin leaving a healthy life without feeling unheard, accused of faking my symptoms, or spending money that was intended for schooling. On April 30th, 2014, I sat in a waiting room at my DRs’ office listing my various symptoms, past surgeries and procedures. This is when because of your Celiac Awareness campaign I was informed that my symptoms were just like the ones you had experienced in the past. The doctor explained that Celiac is often misdiagnosed (I was told I had Crohn’s) and had been suffering for the past 10 years + my entire childhood. Because of your doctors and your advice I asked the doctor to please conduct a blood test to confirm if I had Celiac’s… Two days later, I received my confirmation and I knew I had to find your book, website, or contact information to become more educated on ways to overcome the 28 years of damage to my body. I appreciate your website, cause, and willingness to share your experiences for the benefits of others. What you have listed in your website is exactly what I have felt or experienced… Including the rash on my back that my dermatologist wanted to treat with a medication.

    Thank you and God Bless,

    Jorge Wellmann

  11. phyllis

    Hi Jennifer, I saw you on the chew today, I need ask you., my little girl gianna is 6 years old and has Prader-Willi Syndrome, she sees doctors after doctors, and they keep telling me she is obese, watch her diet, endocronologist says i am doing everything right by no sugar,watch the sugar etc. but should I have her start doing the no gluten. I am so lost because I have been so blessed with this little angel of mine but I do not know where to begin, I feel so all alone not understanding how to begin what and how to make,bake cook excercises for her. I recently lost my job i am a single mother and it seems like the only thing I can do for my little girl is hope and pray someone can hear my cry., and I feel that maybe you have helped me to try something different without wasting my money on the doctors that keep telling me unfortunately there is nothing we can do.I thankyou so much for giving me some hope and strength to helping me and my little daughter.

    1. Michael Schneblin (@Schnebsy)

      Phyllis, if you cut out gluten, you will cut out a lot of the carbs (which is sugar in a more complex form). Try it for a month and see how your little girl does. Go to this site for gluten-free recipes. You can do it! Stop with the doctors and touch the hem of the Great Physician! : ) He will guide you and Gianna.


    2. Julie

      Remove dairy, rice, corn, soy and processed foods as well.
      Buy organic mea+ and produce if you can.
      Coconu+ oil, coconu+ milk are wonderful for us.
      Almond milk is good +oo.
      Seeds are a good source of pro+ien.
      Ea+ veggies everyday. (I make a big po+ of soup wi+h coconu+ milk, organic chicken, and a+ leas+ 5 +ypes of veggies – lo+s of greens-kale, bee+ greens, cilan+ro…), wa+er and clean seasonings.
      Goa+ cheese is good in salads wi+h frui+ and nu+s.
      S+ay away from nigh+shades veggies – +oma+oes, po+a+oes, eggplan+, peppers.
      Swee+ po+a+oes are okay and yummy mixed w/coconu+ milk.
      Make smoo+hies. Include greens.
      Make Chia seed cereal wi+h coconu+ milk and frui+.

      One +hing a+ a +ime. No perfec+ion. Google every+hing. Follow your hear+.
      Bless you on +his sacred journey.
      Julie :)

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  12. Debbie

    I have had stomach and “allergy” problems for years. I finally met a Dr who knew enough about celiac to test me. I proved positive with the skin, blood, and endo test. Now I am trying to go gluten free and finding it so frustrating. I am broke out with bumps and blisters, and went to see my endoscopy dr today and he told me that” my gi series proved hat I don’t have ulcers”. After chocking, I told him that he had tested me and found me celiac positive 6 months ago. He left the room and came back and started over. My point being, some Dr.s don’t pay attention. I want help not the wrong diagnosis and a 2 minute exam. Also, since he is a gastrologists, he want prescribe meds for the break outs. That requires a dermatologists. I appreciate your column or blog and appreciate anything Ilearn from you. Debbie

    1. Jennifer

      Since the Celiac blocks some nutrient absorption, I went to a natural chiro/kinesiologist dr who tested that I was super low on EPA (Omega) Oils. I have to take 10 fish oils a day to keep the blisters and headaches away. As soon as I started taking them, the blisters were gone in 4 days. Worth a shot. I find the natural drs are able to help a lot more with Celiac.

  13. Breanna Harr

    I have been diagnosed celiac for almost 6 months now and have been going through tests for almost two years. Nothing seems to help. I have an abnormal kind of celiac where I gain weight consistently and am always suffering from constipation. My lower abdomen is always bloated no matter what I eat. If anyone has any advice I would love to here it!

    1. Jennifer

      Have you tried getting muscle tested by a natural dr to see what it may be? Dr. Pepi is in LA. She does phone consultations too. She has helped so many people including me. Look at her website. I was suffering for over a year, had seen 12 doctors, and she diagnosed me within 15 min of an office visit.

    2. Heather

      I have celiac disease and I’ve gained weight from it. I also suffer from severe abdominal bloating and constipation. Increase your water intake. Also eat lots of grapes, watermelon, and other fruits/veggies. My symptoms improved greatly with the addition of more water and fiber.

    3. John Moore

      Your symptoms may be due to Small Intestine Bacterial Overgrowth (SIBO). My GI at Mayo Clinic says he often sees SIBO and Celiac together. There is an easy test for SIBO (hydrogen breath test) and it is treated with antibiotics. Unfortunately, the best antibiotic, rifaximin (fewest side effects because it is mostly not absorbed) is very expensive in the US. I have been buying mine overseas at my doc’s recommendation.

  14. John Burlingame

    Hi, I’m no one special, I have been having all sorts of weird stuff happen to me, my wife always complained about my yellow skin, I have been having constant panic attacks joint pain for at least 15 years. all the doctors have looked at me, and said your Ok, here is some happy medicine. And looked at me as a head case. I thought I was having strokes, I thought that had to be the answer. I’m fat 5’10″ at 280. And I feel like shit. I thought all these sinus headaches had finally eaten threw the wall of my bone and had access to my brain. I’m in a fog. All those symptoms fits me, now maybe I can show my parents I’m not crazy. Its always been something new, unexplainable. I’m going nuts. Suicide had been an option. I saw your show on Jon Stuart. I’m now crying. you have given me the answer I needed. I hope from now on I may actually live a good life. I’m making an appointment for the test. God I hope it comes out positive. I don’t think I can take much more of this.

    1. Mike

      What test will you be taking? You are not going crazy! The petrochemical and ag industry is not giving us the full story on what they’ve been doing. The USDA and FDA are not protecting us from their incessant spraying of biocides, especially, glyphosate (aka Roundup). They are using it to dry down the wheat by killing it more quickly with herbicides. Your liver is trying to get rid of the toxins and it is inflamed (causing you to be yellow). I’m no doctor, but living overseas, you know hepatitis and other liver ailments that cause you to go yeller. You need to cleanse and get the necessary nutrition to your organs without causing more inflammation. I can help you with that, but you’ll need to give me permission with a return comment.

  15. Shawna

    My mother suffered for 9 years with digestive problems. It was diagnosed as ulcers and depression. Part of her stomach and small intestine were removed, but it did not help. She had a feeding tube inserted into small intestine with no improvement. Her body would not absorb nutrients from food. She was starving to death right in front of our eyes and the doctors had no explanation. She was in so much pain she tried to commit suicide. After 9 years of wasting away she died of pneumonia when I was 17. After learning about this disease I think that this may have been the problem. Now I can get tested to see if I have the marker for this and get some concrete answers about my mother’s death in 1997.

  16. James

    WOW, I live 2 blocks form your bakery and didn’t even know it existed until I saw you on the Daily Show. “I seriously need to get out more”.

    I was never diagnosed with Celiac but my health was so messed up that I started searching the internet for solutions to my acid-reflux which according to one doctor if left untreated I was on course for esophageal cancer.

    I found links to Celiac disease and gluten sensitivity.
    It was hard but I went Gluten free immediately.
    In 6 weeks my Acid-reflux went away.
    In two months my migraines which I’ve had for 40 years and lasted 10 days every month disappeared.
    And in 4 months I lost 35 Lbs.(at 5’11′ 245lbs. I was easily 70lbs over weight)
    Now 5 years later I feel much healthier and don’t even feel the need to cheat my diet with a ‘Two Boots Pizza’ (It’s an East Village thing)

    Great to know that your Bakery is there for those of us that like to eat & eat healthy.

    1. Mike

      That’s a fantastic story, James! I’m sure you’ll inspire others with it. Thanks for sharing. I’ve been away from this thread a long time! Giving care to aging parents takes a lot of time and focus…

  17. Kirsty

    I think my mother has this. She has chronic fatigue, IBS, plantar fatitus, sty’s, sever almost fatal iron deficiency, depression… the list goes on. Most doctors dont’ seem to know whats wrong so they give her the lable chronic fatigue but no pain killers ease the pain and cause pain in her stomach. There are half a dozen foods she just can’t eat and nothing seems to make her feel better. This is the first time I’ve heard of anyone else having the same symptoms she does all at once. You are doing great work! Thank you for sharing this information for those who suffer and are not believed or understood.

  18. Tina M

    My love and prayers go out to you and your sister. I had heard of celiac before but didn’t know any thing about it. Thank you for your strength and hope in enlightening use to the challenges you both face.

  19. vince caporale

    been going to dr for years and he tells me its just a heat rash. i have ibs and painful breakout rashes that are very painful. i also have dizziness and anxiety disorder, ringing in ears and whooshing balance problems. i play music for a living and its not fun having panic attacks. i do not drink because it makes me worse. i can eat only one or two meals a day and have loss of appetite. its terrible and my doctor has no clue whats wrong with me. my blood pressure is ridulously hihg and i sometimes feel like passing out. can you help me please? thank you i just cant live like this any longer please

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  21. Tiffany C

    Thank you Jennifer. I always feel terrible stating that I have Celiac the few times I attempt to eat out. I always clarify ” I am not just ‘trying to be cool, I will get extremely sick.” Then I feel like I am being a pain in the tookus and asking for ‘special treatment’. I am always extremely grateful to those who at least have an idea of the severity of the situation and I SO appreciate that you’re getting the word out and helping to correct the wealth of misinformation that is out there. We needed a voice and we needed the truth; thank you for all you do.

  22. bob keenan

    From what I have read, many people who suffer from Celiac go undiagnosed for 10-15 years. I am curious how they determine that one does have Celiac – what test do they do? I heard you say that you took many blood tests and they revealed nothing. Did you try any food sensitivity tests? While I am not Celiac, my issue was that I suffered from a debilitating chronic cough for many years. I saw every medical specialist there was and they could not find anything wrong. Not one mentioned diet as potential causal factor in my problem. Then I stumbled upon someone who had taken one of these commercial blood tests. I took the test, removed the offending foods from my diet, stopped coughing within 1 week, dropped 20lbs with no change in exercise and stopped taking all my prescribed medication. Not sure if I may mention the company names here and if not, feel free to edit them out (ALCAT test, MRT Food Sensitivity Test) and no I do not work for these firms or know anybody who does. It angers me that no-one seems to know these tests are available. When I told my GP, who is a wonderful and conscientious doctor, she just smiled and said that she is glad I feel better. My purpose for the post is that it may help undiagnosed people with Celiac and lead to a solution quicker and with less suffering. Also, it may help people relieve symptoms from a whole host of undiagnosed symptoms from the food we eat. Wheat, dairy, carrots, coconuts and chicken were some of my most problematic foods. I wish everyone a path to better health.



  23. Samantha Hipsley

    I have a 7 yr old with tons of allergies. IT is so hard to feed him. He can’t eat much. I did the blood test with a Naturopathic doc so far. I didn’t like her so I will move on. My husband also just passed away of Bone Marrow Failure after six yrs of struggling to save his life. I can’t stand doctors. I guess some of them want to heal patients but most just want to make money. This country looks at the medical industry as a CASH COW, period!!!!
    IN my opinion go to a doc that specializes in clinical genetics. They can get to the root of the problem for you. You have to want to be healthy and be healed and fight to make it happen or you will suffer slowly b/c doctors also have a know it all attitude. The fact is that they only know what they have studied or experienced.

    Ok, end of rant!! Hope this helps someone in need:)

    1. Michael Schneblin (@Schnebsy)

      On the same page with you, Samantha. Have you looked into NAET to see if that will help trim down the allergies your kids are experiencing? My naturopath has employed it for years, here in So Cal and has had striking results with children and adults. The acronym represents Nambudripad’s Allergy Elimination Techniques. You can find their website using their initials, naet.com

  24. Jim Thompson

    Two years ago, I was diagnosed with papillary type 2 renal cell carcinoma. Surgery removed half of my left kidney, and I return every 6 months for CT scans. At the same time, I developed psoriasis. About 8 weeks ago, I suddenly developed the rash – water blisters, red spots, and an itch like I never have experienced before. Went to the doc’s thinking that I got into some crazy infectious plant, but she immediately had suspicions. After a blood test, she called and said that I tested “off the charts” for celiac. I’ve een on the diet ever since, and the rash has vanished almost 90%. Now, my wife and I are trying to deal with this new lifestyle.

  25. Milette Corteza

    I am a Filipina, and I lived on rice and meat in the Philippines until I was in my thirties, but when I came to America I developed what appears to be Lupus (an autoimmune disease). I have a question; Could Lupus be a result of celiac disease?

    P.S. My husband saw you in “Backflash” and is smitten by your beauty.

  26. Susan Lauinger

    After seeing a million doctors, I finally came upon celiac after watching Jennifer on Jon Stewart. Since it sounds so much like my issues, I went off wheat (not necessarily all the way gluten free with shampoos etc…) but I felt better immediately. But then the skin rashes started on my upper and lower lips and neck. Steroids is the only thing to take that itch away–my goodness I feel like my very soul itches when I get that. But the tests keep coming up negative for celiac so I tried to go back on wheat but I get so much sicker (non functioning). Now I’m not sure what to do–suffer for 3 months eating wheat to get tested again? What should I do? I’m a single mom on limited income and already so stretched. Going fully gluten free would be so difficult and I don’t want to unless I am truly celiac.

  27. Maria

    Hello Jennifer and everyone!
    My name is Maria Im 29 years old and I was diagnosed with Celiac about two years ago I removed gluten entirely from my diet and I don’t eat meat or diary. I feel very frustrated because I thought by removing gluten from my diet I will feel much better but no, there’s times that I do no have the energy to get up from bed. My doctors tell me that it’s the stress and it’s all my head that I need to be active! I have no social life, I don’t eat out due to cross contamination and there’s those embarrassing trips to the restroom that happened when I do go out. So when the doctors tell me that it’s all in my head I just feel like giving up. My husband has been very supportive of me but I know that he feels the frustration of not knowing what to do when he sees me like this. If anyone else feels like this please share your story. I am running out of options on what to do. I will not give up I can not!! This disease will not defeat me

  28. Jenifer Wright

    I was diagnosed with Celiac back in 2013, did not know where to look for information and it was extremely hard. I mean the doctors tell you what you should be eating but, I still needed support. So I searched, bookmarked and rummaged through articles all over the web.Now in 2015 I have good control over Celiac and I help others find the right information on the web. Anyways I love your blog and this post had me reminisce over my time when I 1st was diagnosed. Found alot of information from the collections of professionals on liv360 and from forums all over the web.

  29. annefatihah

    I think I have celiac. When I ate food like pizza, cakes, bread and food containing gluten I feel so bloated. I have Anemia Iron Deficiency and always bloating, I also overweight. I googled and found this site. i try not to eat food contain gluten and my bloating gone away & lost a few kilos… however, my friends make fun of me, thinking i’m avoiding gluten food because I want to lose weight..it is so hard to explain to other people about my condition.. I just want to be healthy…

  30. Elaine Mackenzie

    My daughter and I have recently been diagnosed with Celiac. what a mind bend. Looking back, I can see so many times, even as a child, that the “symptoms” were there, they were just diagnosed as something else. 100 years (or seemingly) they all seem to make sense now. I didn’t have typical symptoms if CD, at least, not what I deemed out of teh ordinary, but then again, I’ve been livingwith these “symptoms” for YEARS, so they were normal for me. Reading this just now was brilliant as was seeing your interview with Katie Curic on youtube.
    I mistakenly thought that once I took gluten out of my diet, I would start feeling better almost immediately. HA! The withdrawal you mention is spot on. I felt worse and at times still do. (recently diagnosed I mean the past month only) I’m looking forward to when I start feeling what “normal” is actually supposed to be. While I’m reading every label meticulously, I don’t find the change in what I eat overly different. I’ve always maintained a fairly healthy diet. yes, gluten was involved, but things like treats, bread etc I’ve always made myself. Very little processed food ever made it to our cupboards, however…I had no idea just how many food items out there have gluten in them! It’s almost invasive. Oh…and trying to find a GF beer is not something I’m looking forward to. I don’t drink much or often, but a hot day in August, a cold beer is a wonder.
    I’m looking forward to really taking a good look at your website, following you on Twitter and going through some of your recipes. (I haven’t made it there yet)

    thank you for bringing more information to light.

  31. DocLove


    DAVID KOHN JAN 12, 2015
    Doctors aren’t entirely sure what triggers rheumatoid arthritis, a disease in which the body turns on itself to attack the joints, but an emerging body of research is focusing on a potential culprit: the bacteria that live in our intestines.
    Several recent studies have found intriguing links between gut microbes, rheumatoid arthritis, and other autoimmune diseases in which the body’s immune system goes awry and attacks its own tissue.
    A study published in 2013 by Jose Scher, a rheumatologist at New York University, found that people with rheumatoid arthritis were much more likely to have a bug called Prevotella copri in their intestines than people that did not have the disease. In another study published in October, Scher found that patients with psoriatic arthritis, another kind of autoimmune joint disease, had significantly lower levels of other types of intestinal bacteria.
    “This is frontier stuff. With the microbiome, we’ve added a new player to the game.”
    This work is part of a growing effort by researchers around the world to understand how the microbiome—the mass of microbes that live in the gastrointestina l tract—affects our overall health. The gut contains up to a thousand different bacteria species, which together weigh between one and three pounds. This mass contains trillions of cells, more than the number of cells that make up our own bodies. Over the past several years, scientists have compiled a growing collection of evidence that many of these bugs may have a major effect on our well-being, with some triggering chronic, non-infectious ailments such as rheumatoid arthritis, and others protecting against such diseases.
    “It’s become more and more clear that these microbes can affect the immune system, even in diseases that are not in the gut,” says Veena Taneja, an immunologist at the Mayo Clinic in Rochester, Minnesota, who has found clear differences in the bacterial populations of mice bred to be genetically prone to rheumatoid arthritis. In those more susceptible to the disease, a species of bacteria from the Clostridium family dominates. In mice without arthritis, other strains flourish, and the Clostridium strains are scarce.

    “This is frontier stuff,” says Scher, the director of the NYU’s Microbiome Center for Rheumatology and Autoimmunity. “This is a shift in paradigm. By including the microbiome, we’ve added a new player to the game.”
    Scientists are especially intrigued by how these bacteria influence the immune system. In recent decades, the incidence of many autoimmune diseases has been increasing; many microbiome researchers argue that at least some of this rise is due to changes in our bacterial ecosystem. Altered diet, the explosion of antibiotic use, and decreasing contact with the microbe-packed natural world of animals and plants have all combined to transform the bacteria that call humans home. “Our microbiome has changed significantly over the past century, and especially over the past 50 years,” says NYU microbiologist Martin Blaser, who puts much of the blame on widespread use of antibiotics. “We’re losing microbes with each generation; they are going extinct. These changes have consequences.”
    “These organisms are part of our developmental choreography. They’re part of who we are.”
    Blaser points to his own research on a species of bacteria called Helicobacter pylori (so named because it looks something like a helicopter). He sampled the gut bacteria of a group of U.S. children, and found that Helicobacter pylori existed in only 6 percent of them. By comparison, other research has shown that the strain is common in the vast majority of people from many parts of the world, especially in developing countries. The decline of Helicobacter pylori in the West, which is likely related to the spread of antibiotics as well as improved sanitation, may have medical consequences: Some research indicates that the bacteria may reduce the risk of asthma, perhaps by curtailing the body’s immune response to airborne stimuli. Blaser suspects that asthma is one of the illnesses affected by our changing microbiome: Rates in the U.S. have been climbing for three decades, and grew by more than 28 percent between 2001 and 2011.
    Blaser argues that H. pylori and other gut microbes are so deeply involved in our bodily operations that they shouldn’t really be considered aliens. “They are part of who we are,” he says. “These organisms are part of our developmental choreography; they have an enormous amount to do with how our immune system develops.”
    In fact, these bacteria have a powerful vested interest in controlling how our bodies respond to interlopers. Blaser and others say that it appears that many of the bugs that live inside us have thrived by modulating the immune system to avoid being recognized—and attacked—as invaders; in essence, these organisms train immune cells not to be trigger-happy. A microbiome with the wrong sorts of bugs, or the wrong ratio of bugs—a situation known as dysbiosis—may unbalance this immune system, causing immune cells to assault not only bacteria, but also the body itself.
    Microbes are especially influential in the gut, which houses two-thirds of the body’s immune cells. As the pathway for digestion, the gastrointestina l tract must deal with a constant stream of food-related foreign microbes, which must be monitored and, if they are harmful, destroyed. To do this, our intestines have developed an extensive immune system, whose effects reach far beyond the gut. Immune cells in the gut seem to be able to activate inflammatory cells throughout the body, including in joints.

    But while many scientists are confident of the link between the microbiome and arthritis, they haven’t pinned down what particular role bacteria play in triggering the disease. Scher says Prevotella copri may stimulate an immune reaction that then targets joint tissue. Or it may crowd out beneficial microbes that keep immune-system attack cells being too aggressive [a theory supported by the fact that people with high levels of Prevotella copri also had reduced amounts of the bacteria Bacteroides fragilis, which seems to restrain the immune system. Scher suspects that a similar mechanism may explain the results in the psoriatic arthritis study; the missing microbe species—Akkermansia, Ruminococcus, and Pseudobutyrivib rio—may signal the immune system to ease off.
    Dozens of researchers are looking into a range of potential strategies to use bacteria as medicine for immune disorders.
    Scher thinks that eventually, it will be possible to treat arthritis by adjusting the microbiome. Dozens of researchers, including Scher and Blaser, are looking into a range of potential strategies to use bacteria as medicine for immune disorders. Already, millions of Americans ingest probiotics—cocktails of supposedly beneficial bacteria that claim to treat everything from acne to insomnia. Scher, like many microbiome scientists I spoke to, is skeptical that these products are useful. “Probiotics are generally safe and almost completely untested,” says Scher. “There’s this idea that you can simply replace certain bugs that are missing. I don’t think it’s as simple as that.” For one, he says, it’s not clear whether most microbes from probiotics can survive the digestive process.
    Scher puts more faith in modifying the microbiome through diet. He notes that some patients with rheumatoid arthritis have benefitted from cutting out meat, or adopting a Mediterranean diet (high in fish, olive oil, and vegetables, and low in meat and saturated fat), though scientists don’t know exactly why this helps. In a separate study, Finnish researchers found that a vegan diet changed the gut microbiome, and that this change was linked to an improvement in arthritis symptoms.
    Others are focusing on particular bugs over diet. At the Mayo Clinic, Taneja has found that a species of Prevotella bacteria, P. histicola, can prevent or halt the mouse versions of both rheumatoid arthritis and multiple sclerosis, an autoimmune disease of the brain and nerves. She is hoping to begin studies on humans in the next few months.
    And some scientists are focusing not on the microbes, but on the compounds they produce. B. Fragilis, for instance, may ease autoimmune disease by releasing a molecule called polysaccharide A, or PSA. Harvard University microbiologist Dennis Kasper, who discovered the compound, has found that when given PSA, mice are protected from certain autoimmune diseases, including MS.
    “I don’t see why it can’t happen. This isn’t science fiction.”
    Kasper says PSA may be a more effective and reliable way to modify the immune system than adjusting the balance of microbes. PSA also has an advantage over medicines now used for autoimmune disease, Kasper says: It is subtle. Rather than suppressing the entire immune system—an approach that has obvious disadvantages to the patient—PSA instructs immune cells to continue to patrol without going after harmless targets. “This is a molecule that we have lived with for eons,” Kasper, who has recently begun working on ways to turn PSA into medicine for humans, told me. “We know that our bodies can live with it.”
    Right now, doctors aren’t using microbes or their metabolites in patients with arthritis or M.S., but Scher, like Kasper, is optimistic: “In 10 or 15 years I think the microbiome will be a key therapeutic option for some of these diseases,” he says. “There will be challenges, but I don’t see why it can’t happen. This isn’t science fiction.”

    1. AM

      I have leaky gutt, which is a similar auto-immune condition similar to gluten intolerance. There are studies that suggest that Prevotella copri is the main culprit associated with the degradation of the intestinal lining associated with gutt leak.

      The study found that whole grains either contain or foster the propagation of P. copri in the gutt and intestines, whereas those with a refined flour diet (white flour) had very little of this bacteria present in the gutts. Furthermore, switching between a whole-grain and more refined flour diet actually saw a reduction in P. copri population and an overall reduction of gutt-leak symptoms.

      This bacterial has been linked to a number of conditions, as referenced all thought to be auto-immune diseases. It is a naturally occurring bacteria in the body, but in moderate levels. When populations spike under the right conditions (right kind of food, changes in pH balance due to hormonal spikes), problems arise.

      It’s also the same family of bacteria that cause BV in women (common bacterial imbalance that’s been linked to hormone changes = changes to pH).

      Different bacteria thrive under different conditions, so it’s not strange to think that changes as a result of hormones (stress, biological changes) or different foods could cause different bacteria to be present in our systems.

      Interestingly enough, I thought back to when I started seeing my symptoms associated with gutt-leak, and it was back in my early twenties, a few years after I made the “whole grain switch”; chose to eat more whole wheat and whole grain foods because the extra fibre is supposed to be good for us.

      So, I tried my own experiment, and found that going off whole grains or limiting them in my diet saw a reverse in a lot of my gutt-leak symptoms after about a month.

      Taking acidy foods (pickles and other vinegar-based foods) or supplements like apple cider vinegar is also supposed to help maintain good pH of the stomach and gutt, and managing stress to mitigate hormone spikes is also supposed to help.

      Maybe something to talk with your doctor about more if people are interested. I don’t know that this would help with full-blown Celiac Disease because of the body’s conditioning to attacking the gluten protein (I suspect this is where the bacteria lives) may be hard to reverse. However, those are mildly gluten intolerant might be able to reduce the likelihood of developing full-blown Celiac disease if they look into this further.

      Wide spectrum anti-biotics like metranidazole have been used to control Prevotella in women with BV, so maybe this would help with gluten intolerance too? The anti-biotic alone will only reduce the bacterial concentration, and a follow-up course of probiotics to re-inoculate the gutt with other healthy bacteria would need to follow, otherwise if all other conditions remain the same, the bacteria can come back.

  32. Rebecca

    What have you found if any to lose weight?? I have eliminated gluten, dairy, eggs and soy from my diet, workout 4x a week, boot camp, body pump, total body strength and I have gained almost 30 lbs in 6mo!! Everything has gone haywire since I had my gallbladder removed.

  33. Soccer Nutrition

    Shooting, passing, dribbling, and individual defense all require
    time spent perfecting them. Lower body plyometrics include exercises
    such as, two- foot hops, squat jumps, split squat jumps, tuck
    jumps, single-leg vertical jump, lateral push-offs, power skips, bounds and depth jumps.
    ve been pushed way out of my comfort zone, have experienced fear on a level previously unimaginable, but the
    basics I learned as a kid have helped.

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