Comments on: The Celiac Disease Epidemic: Why Gluten Free Isn’t Enough https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/ Solutions for sensitive people with gut health issues. Tue, 11 Dec 2018 16:13:02 +0000 hourly 1 https://wordpress.org/?v=6.3.2 By: Lori Jo Berg https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-806867 http://scdlifestyle.com/?p=3001#comment-806867 In reply to Stephanie.

Hi Stephanie – we’re here to help! You an email us at support@scdlifestyle.com as that sounds like a better option for your situation.

]]> By: Stephanie https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-806810 http://scdlifestyle.com/?p=3001#comment-806810 Hi Jordan,

I am currently in a medical crisis. I need some insight and possible advice.

Waiting for the atTG-ab results to come in to determine whether it is celiac or a parasite. I had typhoid six years ago. I’ve had “IBS” for a decade. I have a battery of autoimmune conditions and it’s LITERALLY exploded in the last few months.

Before I share my story, I want to know that this site is still active and someone will reply. I don’t want to type it all out and never hear back — I’m truly looking for support, answers, suggestions, and experiences.

Thanks in advance,
Stephanie

]]> By: Lori Jo Berg https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-795867 http://scdlifestyle.com/?p=3001#comment-795867 In reply to Stephen Stead.

Hi Stephen – sorry I’m not clear. Are you trying to lose or gain weight? Either way, healing the gut will help stabilize your weight so we’d recommend starting with the webinar in the article.

]]> By: Stephen Stead https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-795759 http://scdlifestyle.com/?p=3001#comment-795759 Hi I have celiac I’ve had it since I was very lil and I’ve only really noticed now Iam 30 my weight is never the same it goes up and down loads with in no time at all I was wondering if there was anyway of keeping my weight down

]]> By: hgh https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-780536 http://scdlifestyle.com/?p=3001#comment-780536 While working in the southern Philippines (age 38) I had an onset of severe diarrhea after eating some locally prepared food. After 7 days of GI distress I began a 30 day battery of antibiotics (US licensed physician treated and US supplied meds). The battery of antibiotics consisted of 10 days of amoxicillin (no improvement) followed by 10 days of ciprofloxacin (no improvement) followed by 10 days of flagyl and a simple diet of rice bananas and apples with improvements. The diarrhea along with abdominal distress bloating and brain fog would return upon gluten ingestion. After 3 x GI physicians diagnosis of celiac disease I finally accepted that my days of wheat barely and rye ingestion were over. Learning to manage my diet to avoid inadvertent gluten ingestion was another interesting journey…
Hopes this helps,

]]> By: Lori Jo Berg https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-777963 http://scdlifestyle.com/?p=3001#comment-777963 In reply to kathy.

HI Kathy – really sorry to hear this. First, we have a ton of free information on our website, including a free quick start guide that would be a great place to start: scdlifestyle.com I also think your time, efforts, and energy would be best invested in a one-on-one consult with a functional medicine practitioner. They will be able to assess all the details and get you the attention you need to get healthy.

We have a recommended practitioners page now so you don’t have to look very far. Here are the details: https://healthygut.com/practitioners/

]]> By: kathy https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-777771 http://scdlifestyle.com/?p=3001#comment-777771 In reply to Ralph Tribbey.

Hi I’ve had ceglisc axlmost my entire life. I was only off of just wheat as a toddler though because my parents couldn’t find a doctor who knew what celiac was. So I somehow grew up but very skinny& sickly. I finally landed in a hospital in approx 1970 and had a small bowel biopsy which confirmed celiac. I stopped gluten& managed to have 3 healthy children but after the 3rd, I got hyperthyroidism& had radiation& take levothyroxine for life. I began getting sinusitis too& had a 2nd sinus surgery last April.(i think it was unecessarry). Anyways, I’ve been infected chronically ever since& am now very depressed. I gained a ton of weight too without hardly any calories. I had a Bld test that showed antibodies attacking my thyroid& that I’m lacking proper antibody response to respiratory infections so I had to get 2 vaccinations& am to get my blood retested the end of this month& if I do not react properly, I we told I will need immunotherapy in a hospital for life! I am scared to death! My primary doctor tells me I’m complicated. My 1st husband divorced me over my health status after having kids& ripped me off financially. I’m remarried to a good man but WE are low income& I will probably end up on aid I’m assuming. Idk what to do anymore. I hurt my back too a long time ago& had 3 spinal surgeries too. Any suggestions on what kind of Dr could help me out? I’m getting diarrhea Jeff& there in the am after taking my levothyroxine. No one cares at all about this! I’m really feeling bummed out big time! Pls give me some advice. I’m taking good vitamins too.

]]> By: T Pat https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-777090 http://scdlifestyle.com/?p=3001#comment-777090 I too am celiac. You have a good informative post. You need to consider that you may have other food intolerances as well that can lead to inflammation and be causing more of your distress. It does not stop just with gluten. It is helpful to find a provider that tests for a host of immediate and delayed food sensitivities and also does work on your gastrointestinal tract (GI) or what the media and many call the gut. I was diagnosed with celiac when I started grad school and that changed the path of where I was headed and I pursued functional medicine. Look for a group that has medical professionals that do testing for food sensitivities and works with the GI tract. It does not end with celiac. It does help to find out what to avoid to reduce the inflammatory rudeness in your body.

]]> By: ross phipps https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-771239 http://scdlifestyle.com/?p=3001#comment-771239 Just a tip for celiacs looking for a good bread . I have found SHAR white bread to be really good. Its from germany but imported to the u.s. I buy it from AMAZON PRIME ITS A LITTLE PRICEY but good

]]> By: Mariel Heiss https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-771199 http://scdlifestyle.com/?p=3001#comment-771199 In reply to Samina.

Hi sSamina – to heal fromC celiac we have found you need much more than a “gluten free” diet. We recommend you check out this article for more info: https://healthygut.com/celiac-disease-101/

]]> By: Samina https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-771152 http://scdlifestyle.com/?p=3001#comment-771152 Hi i am also a celiac patient since birth just dignose 8 month before i am totally on gluten free but still bloated what could be the reason please help

]]> By: Mariel Heiss https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-764457 http://scdlifestyle.com/?p=3001#comment-764457 In reply to Sonia.

Hi Sonia – I’m so sorry to hear what you’ve been through! I recommend checking out this article for info on a more comprehensive way to treat your celiac disease than a gluten-free diet: https://healthygut.com/celiac-disease-101/

]]> By: Sonia https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-764412 http://scdlifestyle.com/?p=3001#comment-764412 Hi,
Just wanted to tell my story in 1996 I was diagnosed with acute lymphocytic leukemia my brother who has celiac disease was my bone marrow donor. We were told that it would not be able to be transferred through transpant. Years after I suffered from chronic diarrhea stomach problems n rashes.. 6 or more years went by before I was diagnosed with celiac disease. I believe I had it before my cancer and that it caused my cancer. I am 58 glad to be alive but suffer daily from chronic fatigue syndrome pain rashes and nerve pain and numbness. I follow a strict gluten free diet. I see a list of Dr’s who have no answers….I trie to eat organic as often as I can… I have found little to no relief. ……

]]> By: rizwana https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-760106 http://scdlifestyle.com/?p=3001#comment-760106 Hi,

this is very nice post….I am not sure whether i have celiac disease or not,
But whenever i eat foods that contain wheat,my body generates so much heat,and wont be controlled even i drink so much water…..uncontrolled heat in my head is causing so many problems ,eye sight prbm and so many,,,,dont know what happend to my body,,,unable to figure out .

]]> By: Mariel Heiss https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-754172 http://scdlifestyle.com/?p=3001#comment-754172 In reply to Chris.

@Chris – we are so sorry to hear everything you’ve been through with your health. We hope we can continue to support you as you heal and are thankful this information is available so your kids don’t have to go through this as well.

]]> By: Chris https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-754157 http://scdlifestyle.com/?p=3001#comment-754157 I have suffered from Celiac symptoms since childhood, did the igg blood allergy test as diagnosis. I have all the wheats, dairy,egg etc. I had literally no vitamin D3, NO testosterone, magnesium, calcium left in my body. I’ve been jacked around for 30 plus years, no one would test me.. I’ve had RA for 39 yrs, Graves dusease for years, deafness, tinnitus, leaky gut etc.. you are right, physicians are the biggest morons living!! I’m still having issues, went to ER over weekend, medical workers are clueless as to what celiac even means?? I’ve barely worked the past 4 years, just after my youngest was born I went into my present episode which has just about killed mr. My father has the non Hodgkins lymphoma, my one sister died at 45, all grandparents on both sides died young of intestinal disease, and we can’t get any mainstream doctors to even test our children!!!!! The Lord sent me to a D.O. who is treating me and my children now, but I trust NOBODY in the medical system, as they will only push drugs on your already wasted gut. It’s embarrassing as an artisan contractor to know that a human body is treated with much less care than people’s homes.. problem with these plans and all is that most are probably just like me, been bled dry from doctors, diet and working avg 2 days a week.. Everyone’s after your money in this godless culture.. I hope to someday heal as I’m having pancreatic issues now.. I’m only carrying on for my children, so they can have a life and have the answer that I and my family weren’t privy to by the medical association. Thus is WW ll technology folks!!!!

]]> By: Mariel Heiss https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-753086 http://scdlifestyle.com/?p=3001#comment-753086 In reply to Donna.

Hi Donna – thanks for commenting!

We’re so glad you found SCD Lifestyle – have you considered trying a healing diet like SCD to help your stomach heal? it is the step beyond going gluten-free.

We hope your new doctor can help you. If you ever have questions, reach out to us at support@scdlifestyle.com

]]> By: Donna https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-752821 http://scdlifestyle.com/?p=3001#comment-752821 Great article. I too received a note from my doctor, you have celiac…go in gluten free diet. I lived for years with joint pain and muscle cramps, allergies, skin issues. But no stomach issues. At least not until a few months before my diagnosis. I was left to figure everything out on my own. 6 weeks later, I am up and down. I found a new doctor and am waiting to get in. I have bouts of stomach pain, daily muscle cramping, fatigue, headaches. it’s all very scary and new!

]]> By: Sharon Thomas https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-752369 http://scdlifestyle.com/?p=3001#comment-752369 Some people are non-celiac gluten intolerant and have all of the same symptoms. There is no test for non-celiac gluten intolerance, so you may never get a “diagnosis”. However, you know your own body. If eating gluten free (and that includes hidden sources of gluten like mustard, processed meats, vinegar, most bbq and other sauces, coke (any pop or foods with caramel colouring) “modified” foods, etc. not just wheat, barley and rye makes you feel better it is likely ONE of your problems. Most people who have either problem generally have other intolerances like milk protein (casein) or lactose and allergies (like oils). I can eat eggs and the occasional “soft ice cream,” but cannot eat yogurt, cheeses, puddings, hard ice cream, or drink milk. As I’m a tea drinker, when I go out, I can tolerate a creamer of 2% milk in my tea without any symptoms (which were mainly diarrhea). There are many “gluten free” products on the market that I cannot eat because of these other allergies or intolerances. I found from my specialist that most of the leg and feet cramps were due to a diuretic included in my blood pressure medication. He changed this prescription, told me to buy the spray on magnesium at a health food store and rub the “mist” into the cramp. I get almost instant relief from this and have little cramping now that my medication was changed. I use cornstarch to make gravies for my meals (not flour) if I want a treat and eat some gluten free bread with sliced meat. You must constantly check to see if a product contains gluten and I usually go to the website and type in the question. Living gluten free is a whole new world and many, many people suffering from an autoimmune disease have the problem but don’t get diagnosed. Gluten intolerance has been found prevalent in persons suffering from schizophrenia, bi-polar, Parkinson’s, Multiple Sclerosis, psoriasis, fibromyalgia, Crohn’s, osteoporosis, Arthritis, autoimmune lung, thyroid or liver diseases etc., etc. In my 50’s, I also found that I was suffering from “hot flashes” across my neck which my doctor wrongfully attributed to menopause. That was when I discovered that the chronic (and embarrassing) non-controllable diarrhea, 12-15 kidney stones each year and swelling in the back of my neck, and the redness that appeared in the base of my throat disappeared after I stopped eating dairy products. I discovered that, dairy produced a “sporadic” attack on my para thyroid glands and once I stopped eating dairy, I have NEVER in 9 years had any symptoms like these since (unless I cheat on my diet). I spoke to my nephrologist (kidney doctor) about this, and he said, I could be right but there is NO RESEARCH available on this and a doctor couldn’t confirm it because of this. He added, you know your own body and if it works for you, you are probably right.

]]> By: Kathy Handyside https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-752035 http://scdlifestyle.com/?p=3001#comment-752035 I wonder if all the genetic engineering and hybridization of food has something to do with it, too.

]]> By: Mariel Heiss https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-735650 http://scdlifestyle.com/?p=3001#comment-735650 In reply to Leigh Ann Clark.

Hi Leigh Ann – thanks so much for your kind comment 🙂

We’re so glad we can provide resources to you and your family. If you ever have questions or need more support please feel free to send us an email at support@scdlifestyle.com

]]> By: Leigh Ann Clark https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-735372 http://scdlifestyle.com/?p=3001#comment-735372 Dear Jordan,
. I am really thankful that you took the time to share you and your Mom’s story with other people that could possibly have Celiac and never even know it. I’m sorry to hear about the loss of your Mom & think it’s amazing how you decided to conduct further research into Celiac for those that have been suffering as well. I have lived in silence with Celiac for several years now with ZERO answers as to what could possibly be going on with me! Just this past week I finally found out that it is in fact Celiac. Now, I have to get all 3 of my kids tested as well. As you can see, everything is just NOW finally coming to light. It’s going be a long road ahead for me and my family now that Celiac has entered the equation. Anyways, I wanted to take the time to express my thanks to you for making all of this Celiac mess much easier for others to understand. My thought’s and prayers go out to you.
. Sincerely,
. Leigh Ann Clark

]]> By: Lori Jo Berg https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-718608 http://scdlifestyle.com/?p=3001#comment-718608 In reply to Brenda.

Hi Brenda, please feel free to check out all of the helpful information on celiac Disease here: scdlifestyle.com

]]> By: Brenda https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-717620 http://scdlifestyle.com/?p=3001#comment-717620 Jordan,

I feel your pain. My mom passed in 2011 from colon cancer, stemming from undiagnosed celiac. I got tested and came back positive as well. I also feel that GF is not enough for me. Staying positive
Brenda

]]> By: Clement https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-621360 http://scdlifestyle.com/?p=3001#comment-621360 Good day! This post could not be written any better!
Reading this post reminds me of my previous room mate!

He always kept talking about this. I will forward this page to him.
Fairly certain he will have a good read. Thank you for sharing!

]]> By: Why Go Gluten Free If No Celiac Symptoms | my gluten free diet https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-619667 http://scdlifestyle.com/?p=3001#comment-619667 […] The Celiac Disease Epidemic: Why Gluten Free Isn’t … – About the author. Jordan Reasoner is a health engineer and author. He was diagnosed with celiac disease in 2007 and almost gave up hope when a gluten-free diet didn …… […]

]]> By: Lori Jo Berg https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-573511 http://scdlifestyle.com/?p=3001#comment-573511 In reply to Paleo Lady.

Hi Jess, thank you for reaching out! You certainly do not need a test to confirm anything if you do not want one, as your body will tell you what works and what doesn’t. Many, however, do want those objective results and therefore get the test. Continue to build your safe food zone and listen to your body.

]]> By: Paleo Lady https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-568968 http://scdlifestyle.com/?p=3001#comment-568968 Hi there! I suspect that I have Celiac Disease. I have been reading up on the disease, testing, and treatment. I am left with one question. If the treatment for all gluten related problems, including Celiac is to change my diet, what is the real benefit of having the diagnosis? If there is no difference in treatment, does it really matter? I was given a genetic test for Celiac and I tested positive. My stomach issues disappeared when I started Paleo 8 months ago. Recently I started cheating on my Paleo diet by eating wheat products a few times a week. At first, there were no issues, especially when my gluten was eaten along with a probiotic. My issues gradually got worse until it was apparent that I had to stop. Within a couple of days of stopping wheat, I was fine again. Does it matter whether I have a Celiac diagnosis or not? It seems obvious that I should stop eating gluten regardless of what official condition is bothering me. Still, everything that I read suggest that once a person has eliminated gluten and re-introduced it to confirm the issue, the next step is testing. I don’t understand what is gained from the additional testing. Please help.

]]> By: Barb https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-202760 http://scdlifestyle.com/?p=3001#comment-202760 I have asked two doctors to test me and they both said I don’t have it and won’t give me the test. I was just allergy tested and show high intolerance to wheat, rye, barley, most of the grains. Why don’t doctors just test? What is the big deal.

]]> By: Kimberly Bush https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-168234 http://scdlifestyle.com/?p=3001#comment-168234 We have been in the hospital since November 21, 2013 with my 6 year old son, Jayson. He had intermittent nausea/vomiting for a few days prior to the night he was admitted to the hospital through the E.R. On that night he woke us up with terrible stomach pain. It took several tests, ultrasound, CT scan, MRI and blood tests and after 3 days the doctors say is down and started he had tested positive for Celiac Disease. This was the first time we heard of it. But the doctors said there may be something else and scheduled a biopsy to confirm the celiac. On the day of the biopsy, the surgeon came out to tell us he had removed a tumor and a section of our sons small intestine and that he had cancer! We were devastated….Upon researching CD we found that untreated Celiac could lead to tumors yet the doctors denied this. My son has also been diagnosed with Non-Hodgkins Lymphoma stage 2. This broke my heart! I felt that I should have noticed the weight loss, or that something was wrong. He did not have constant diarrhea or vomiting. The only symptoms was the few days he threw up and some weight loss. I am concerned with the doctors not relating the effects of untreated CD. I refuse to believe that he suddenly had cancer AND CD. Our whole world is now turned upside down. We have completed 3 of 5 chemotherapy treatments. Yes, my 6 yr. old in Chemo. I feel like there has to be more research, treatment, and education of CD. As far as his diet, we were given a handout (2 pages) on celiac disease. Nothing more. I did more research online sitting in the hospital and gathered my own information. I want my child to be able to live, thrive, and eat healthy foods. No child or parent should have to experience what we have. There has to be more focus on preventing, detecting, and treating this disease before it claims many more lives. I will be introducing the SCD diet to Jayson and our family now that I have this information. Thank you Jordan and everyone who posts their story. People will gain the knowledge to take control of their health and live long healthy lives.

]]> By: Ralph Tribbey https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-167156 http://scdlifestyle.com/?p=3001#comment-167156 In reply to Kitt.

Just to set the record straight here. Corn gluten is not the same as wheat, barley, or rye gluten. Corn may not be all that healthy in large doses, but it does not contain the harmful gluten that celiacs cannot have.

Also, oats are normally not gluten free because of the fact that most of them are grown next to wheat or barley fields, not because they contain gluten. Inevitably, typical oat farms will have “cross contamination” from neighboring fields. You can find oats that were grown isolated from wheat fields, therefore, are gluten free.

I know from 5 years of personal celiac disease and research.

I do agree with the fact that 20 ppm is not gluten free.

]]> By: nancy henderson https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-153967 http://scdlifestyle.com/?p=3001#comment-153967 i have been GF for a few years now. same story: experienced some relief, but still
had problems. after beg SCD i noticed a change right away, for better, however, i now
am very bloated since incorporating more meat. i have a hard time digesting meat b/cause my pancreas is insufficient due to my auto-immune disorder called Sjogren’s, which the doctor and i believe has been attacking the pancreas for years. i take “digest gold” enzymes and hydrochloric acid, both w/every meal. i struggle to keep weight on.any suggestions?
encouraged, now concerned

]]> By: Steve https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-151014 http://scdlifestyle.com/?p=3001#comment-151014 I have gone through a similar experience as you have. Near the end of my years in college, I was on the brink of death, but had adapted my lifestyle to feeling sick all the time. Living gluten free in my family was nearly impossible, but while I was traveling out of the country, I noticed my symptoms go away. It was amazing to me because I believe that culture simply didn’t cook with wheat. In the US, people dust things with flour just because, or throw a cup of flour into a soup or stew to “thicken” it, even though it is really unnecessary.

I see my brother and mother suffering from being bloated all of the time, but they refuse to admit that it is abnormal. I fear something similar may happen to my mother, and yes, because no one will test her. They are likely distracted by her other symptoms, such as obesity, low energy, and bloatedness.

The real reason I wanted to comment is that (1) I have never tested positive for Celiac Disease. I have a self-diagnosed allergy to anything containing wheat or lactose after thousands of dollars spent with a gastro-enterologist. And (2) recently I started eating gluten-free chex mix with lactose free milk in the US, and some (though not all) of my symptoms have returned. Have you had any experiences having to cut out gluten-free products that are similar to wheat-based products in the way they are made (using, for example, baking powder or baking soda)?

]]> By: Steven Wright https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-143366 http://scdlifestyle.com/?p=3001#comment-143366 In reply to Cathy.

Hey Cathy – Keep reading the series of article Jordan wrote on our site. He he breaks it all down for you. He like your daughter didn’t benefit much from the GF diet.

]]> By: Cathy https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-143296 http://scdlifestyle.com/?p=3001#comment-143296 I have a daughter who was diagnosed with celiac disease. Her symptoms arent too bad, she just gets nauseous when she eats gluten. Her doctor told us that the only cure is to completely eliminate gluten from her diet. She has been gluten free for quite some time now, but her symptoms havent disappeared. I read your article, and I noticed that you said eating gluten-free isnt the only cure. Im not sure if maybe I missed the part where you told us what the other cure is or not? It would be great if you could respond and let me know what the other possible cure might be.. thanks!

]]> By: Kitt https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-141768 http://scdlifestyle.com/?p=3001#comment-141768 This may be obvious but is this partially because CORN, a gluten grain, is still considered “gluten-free”? And oats, which have a natural 5ppm gluten content. These are the “gluten-free” foods people are eating. Gluten-free isn’t working because gluten-FREE, isn’t “20ppm or less” it’s ZERO. Zilch! None!! If you are consuming corn, or oats on your “gluten free” diet, you aren’t gluten free period. You won’t escape symptoms. You won’t feel better. Stop eating ANY food with gluten, do your own chemical research on grains, and discover for yourself how to be ACTUALLY gluten-free, not “what some book tells you.”

]]> By: Steven Wright https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-131325 http://scdlifestyle.com/?p=3001#comment-131325 In reply to MADHORAM OJHA.

I would start with the same plan that Jordan used to stop his symptoms which was a dairy free and egg free SCD diet.

]]> By: MADHORAM OJHA https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-131317 http://scdlifestyle.com/?p=3001#comment-131317 I am 48 years old. I am suffering from CELIAC DISEASE since birth. But I came to know only a year ago. I am following gluten free diet. But diarrhea is still happened once in fortnight so diet is not sufficient to me. Most of the symptoms have been confirmed. What should I do ?

Madhoram Ojha, New Delhi

]]> By: The man-made GLUTEN INTOLERANCE…Almost-SECRET EPIDEMIC … conspiracy? « TheUnitedStatesOfAmericaIsLyingToYou https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-77502 http://scdlifestyle.com/?p=3001#comment-77502 […] kill a person. And sometimes, living gluten-free isn’t enough.  Read this story to learn more: https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/ (a series of scientific posts uncovering why gluten-free isn’t enough for many).  Mayo clinic […]

]]> By: Celiachia - Naturopatika https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-49235 http://scdlifestyle.com/?p=3001#comment-49235 […] scdlifestyle.com via Juli on […]

]]> By: Updates « Getting Over Food https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-46342 http://scdlifestyle.com/?p=3001#comment-46342 […] here is a fantastic article series on celiac disease and glut-free eating if you’re interested (yeah, should have listened and not had that oatmeal last […]

]]> By: Celiac Disease and Gluten: The War Inside Your Body | Celiac Disease and Gluten Free Diet | Celiac Corner https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-45632 http://scdlifestyle.com/?p=3001#comment-45632 […] Gluten-free diet could end the entire process and break the cycle of autoimmunity.  But remember, in the last article about Celiac Disease I pointed to recent research showing only about 40% of Celiac patients fully heal on a Gluten-Free […]

]]> By: Jag och bloggen | Skafferi Glutenfri https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-36390 http://scdlifestyle.com/?p=3001#comment-36390 […] The Celiac Disease Epidemic: Why Gluten Free Isn’t Enough […]

]]> By: Cathi https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-34390 http://scdlifestyle.com/?p=3001#comment-34390 Thank you for sharing your heart about your mom. It makes me think of my kids and my desire to want to be well for them. I am 54 years old and have 3 beautiful adult children that I love very much, plus a wonder new Daughter-in-law, and the all want me to hang around for a long time. Anyway, my story is much like many who have written here. I have probably dealt with Intestinal/Stomach issues since I was a kid. By 21 one I had been labeled with IBS and Acid Reflex. The Doctor at the time said my upper stomach and esophagus was totally inflamed and of course they stuck my on medications that I weaned myself years later as I learned new things about diet and exercise. But even after a while that didn’t work and I was exercising about 3 hours day at the time and eating a low carb diet and not losing weight. I had gone from a size 7 junior size to a size 14 misses in my 40s doing the right thing. Oh, and after exercising all I wanted to do was sleep and my body was really starting to hurt, joints, muscles and migraine headaches . My husband then said to me, I think you’re having problems with your Thyroid, why don’t you get it checked out. Sure enough I was tested positive for Hashimoto’s Thyroid Disease, which has been a struggle in itself finding the right doctor that would managed that properly. I still continued to eat a low carb diet, because I had a sister who died from Diabetes at age 60. She was in a horrible condition when she died. The disease was nasty to her. It was awful to watching her life decline and her death was mortifying and ugly. So, I continued to eat low-carb, and one thing that began to stick out to me was when I didn’t eat bread or pastas, which one doesn’t eat a lot of on low carb diet, I wasn’t having as many intestinal issues. Especially in the first phase of the diet, you don’t eat any breads or pastas, I was totally eating just meat, low carb vegetables and some low carb fruits and that’s when, I felt my best of course along with taking my Thyroid medication. But I noticed that I started feeling sick, after introducing breads. I had just made a banana nut bread with a very high gluten flour and splenda. Oh I was so sick, I thought it was the splenda and never used it again, it didn’t connect with me that it was the high gluten flour that I was using at the time. But as time went on my brain began to connect the dots as I did research. Finally in my early 50s, my adrenal gland started having problems and one of my doctors was considering to use natural bio-identical cortisol to help a slowing adrenal gland, since it was causing problems with bringing my Thyroid levels up to a normal number. Anyway, it was at this time I went and got myself tested for Celiac Disease and I used an unconventional testing that is not yet peered reviewed along with getting my DNA checked at EnteroLabs http://www.enterolab.com/. The test came out not just a little sensitive, but of the records crazy high of the charts high in every area that I was tested for Gluten. Plus my DNA came back positive as having one DNA GENE for Celiac. So, in my mind there was no way this was a false negative. If, my numbers had come back really small or slightly, as it did with Casein sensitivities, I would have just ignored it. But the numbers, plus DNA said RED FLAG. I have Celiac Disease, so I started on a Gluten Free Diet. It sort of helped, and intestinally I began to feel better and bloating started to go down then was at age 52. My Doctor kept saying it’s probably going to take a while, because I have had this all my life. He never told me I may not heal. I heard that from the person who lead our local chapter for people who had celiac Disease. Anyway, it is now been two years exactly, since that test and me going Gluten Free. Yes, it is a learning curve to learn where glutens are hidden, but I think that I hate the most is that I have worked hard to getting glutens out of my life and I am very diligent to check and call companies, when I am using their products. My Kitchen has been gluttonized. There is not a speck of it in my home. I even bought new pots and pans and went to using glass containers, instead of plastic. Make-up such as foundation and lipstick was changed along with all types of things one uses, including toothpaste. I have been diligent on this diet, but I still have problems. So, I was beginning to ask my Doctor, could there be anything else that could be brothering me and causing these problems. And he basically told me it would be a waste of time to figure it out and not to worry about it. Besides what would you eat since you already eat low-carb, your Gluten Free and you also don’t eat dairy, corn or soy. What else could you be having problems with? I mentioned I think rice might be a problem, which I was eating occasionally. He said look, you’re going to get bored with eating and you’re going to cheat, if you take anything else out of your diet. AND I’m concerned that you won’t being eating enough healthy foods in your diet. At that point, I was a little bugged by what he said, but I didn’t get angry with him. I just want to feel better and was hoping there is an answer. But I was also a little bugged, because I was noticing that some of the supplements that He had been giving me had rice in them and also rice malt dextrin, which is supposed to be safe Celiac or Gluten Sensitivity. One or the products, I gave back to him was a protein type powder with mainly rice protein, was really making me sick when I used it, so I gave it back to him. He just kind of laughed and didn’t believe me. Then I began to realize that the HGH supplement that I was using also had Rice Maltodextrin in it, but I finished those off, because I didn’t want him laughing at me. But as I used them my Acid Reflex really got bad and by the time I was finished using the product. I was having really bad Acid Reflex. I was happy that he didn’t want me to go back on them again. Maybe he believed me about rice, I don’t know. What really drove me crazy is when I found out that one of the Virus medication I had been taking had Wheat Starch in it. For months I had been talking this product, and I was trusting my Doctor that it was a safe medication. It wasn’t until, I received this medication in its original box this last time that I could finally read the ingredients for myself and on the box was Wheat Starch. Well, I didn’t panic right away, but now I had the info to call the company to see what they meant by wheat starch, because Wheat Starch pharmaceutically is supposed to be free of Wheat Glutens. Well, it wasn’t and the company that made the product could not tell me how much wheat gluten was in it, but they new it was under 309pp, because that was all the Wheat Starch they were allowed to use in the product. But they told me if I was highly sensitive to Wheat Glutens that this was probably not a good product for me to use. Wow!!!! Here I had done my part to keeping myself clear from glutens, and I’m getting it in the medication I was taking. Wouldn’t the Doctor know this? Well, Companies don’t always report to doctors, when they have changed a product. Yes, originally the product that I was taking was Gluten Free, but two years prior in 2009 the company decided to change the product to using Wheat Starch. They did not tell Doctors of this change, but they did posted it on their web site not in real big print, but it’s there. How can a doctor keep up with this for all their patients. So, I didn’t get mad with my doctor, until my husband brought the medication back to the office and he did not really respond with any positive remarks, “Like I really feel bad that this happened and we will have to be more careful, but will make sure it doesn’t happen again. Instead he barely talked with my husband at all and just said oh Well, I guess we will have to do better and walked away without any remorse or concern for me. My husband was livid. Of course he kept it all under control and thank goodness the office refunded are money for the medication. Anyway, this has been a frustrating journey, and now I will be visiting a brand new doctor on March 22. It’s possible that she will be putting me on the SCD diet, which is what an e-mail from her office mentioned might be a possibility for me. So, I have been researching it to try to understand it. My concerns is the use of Honey and some of the High carb fruits later on in the diet. Anyway, my journey still continues and I hope this new Doctor will have a better idea of what I need to do for diet. If it’s the SCD Diet, I don’t care. I just want my life back. My family needs me.

]]> By: Steve https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-33163 http://scdlifestyle.com/?p=3001#comment-33163 So many folks think Celiac’s disease is much less serious like lactose intolerance or other discomforts from eating. With every restaurant we interview, what’s most important is that they have GF options AND that they have a process in the kitchen to minimize the risk of cross contamination for any food allergy. Only 10% of restaurants “get it”. Having GF options alone, isn’t enough. Be careful but don’t let Celiac’s limit your social life!

Steve Rosenbaum, Founder of AllerDine.com, the Celiac and Food Allergy Restaurant Guide

]]> By: Jordan Reasoner https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-33037 http://scdlifestyle.com/?p=3001#comment-33037 In reply to Cathy.

Thank you for the awesome comments… you inspire me to keep pressing on with this series!

@Cathy – Dr. Will Page-Echols in East Lansing, MI was the one who first intro’d me to the SCD Diet. Here’s his website: http://fullspectrumfamilymed.com/

]]> By: Cathy https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-33032 http://scdlifestyle.com/?p=3001#comment-33032 Jordan,

Since we live relatively close, I was wondering if you could share your open minded Dr.’s name with me. Half the problem with these diseases (and many others for that matter) is the Dr. is trained only in conventional methods and not willing or able to explore other alternative forms of medicine. Thanks, Cathy

]]> By: Celiac and Crohns mom https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-33023 http://scdlifestyle.com/?p=3001#comment-33023 Jordan, Thanks for excellent overview of celiac. Our daughter was diagnosed almost 8 years ago and has been gluten free ever since. However she was also diagnosed with Crohns 3 years ago. I have heard from numerous doctors that there is no connection. I disagree! Since starting SCD 7 months ago, we finally have seen perfect lab results along with a healthy growing girl who is introducing her 4th grade friends to spaghetti squash and lettuce wraps. Adhering to any diet GF or SCD has challenges – but we are witnessing the healing power in our house and that is motivating! It is refreshing to see how far Gluten free has come in 8 years – here is hope to the fact that SCD might make it there as well.

Thanks for sharing your experiences on these topics – the more we can educate the better!!

]]> By: Debbie https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-33016 http://scdlifestyle.com/?p=3001#comment-33016 Hi Jordan, Sorry about your mom. My mom died at 49 had some digestive issues but never went to doc, we’ll never know if that’s where I got celiac. Totally agree with you that a gf diet is not enough! Low carb and exercise makes me feel so much better. Yay for Make Over Your Morning!

]]> By: Maureen https://healthygut.com/the-celiac-disease-epidemic-why-gluten-free-isnt-enough/#comment-32976 http://scdlifestyle.com/?p=3001#comment-32976 After reading your story I don’t fell alone. I have been suffering with a diagnosis of IBS for 30 years. Doctors use IBS when they can’t figure out what you have. We’ve all been there, diarhea- hits at the most inappropriate times and worse when you are away from home! I’ve missed so many occasions that I lost count. I’ve spent hours in public restrooms that I was so embarassed and used the ‘stomach virus’ excuse to avoid questions. Finally, after years and years of suffering I decided to do my own research. A friend has CD and she said you could be gluten intolerant. I told my doctor who said he would first try a bloodtest, which proved negative. I told him I’d like to do my own test, stop eating gluten. He said, well it is possible that you could be gluten intolerant or gluten sensitive and no test will tell you that, and by eliminating gluten will tell you how you react in time. I gave it 6 months as a first marker for my goal. I have to admit I did feel better within 30 days, and as each day went by I felt better. But still out of the blue would have my attacks which I could not figure out. I was following a strict gluten free diet, or so I thought. From all of my research, talking to people that have CD, it is a life long committment and the damage done to your intestines never heal 100%. Am I better? Yes, I now can go out not wondering where is the bathroom in this place? But I know that the attacks will surface because somehow not everything is 100% in life. Learning to buy gluten free was an education in itself. I’ve learned to cook differently. I know what I can and cannot eat. I read labels. Gluten has other names for it. I also discovered that gluten is hidden in so many things that it is impossible to completely avoid it. It is in soaps, cosmetics, and toothpaste. But each day I learn more and more and hopefully one day I will be able to be 99% better. It is so comforting to read that there are others out there that understand what I experience. We’ve come a long way and more awareness needs to be done so you can go out to a restaurant and not feel like you may or may not make it home in time as the chef cooked your meal in a pan not dedicated for gluten free meals. I wish everyone on this posting much luck and good health.

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