This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I think were haggling over words. Healed vs. Cured. I guess for me cure is defined by evidence. I have arthritis and if my body no longer showed evidence of the disease I would consider myself cured of it. I have a skin disorder that is healing itself...once I have fully recovered from it I will consider myself cured. Likewise, Dr. Haas had patients who were symptom free after returning to a regular diet, which he and they considered evidence of a cure. I think it's a fabulous bit of information worth looking into. If I ever get to the point where I feel my body is healed and I can resume a diet that is healthy (which would be far from the typical american diet btw) I would also consider myself cured of the disease. Ha...hasn't happened yet! I agree with you all who say 'there is no cure' but I would qualify it by saying, "To date conventional western medicine has not recognized a cure for celiac disease"...however that doesn't mean there is no cure for it, or that it is incurable.
I think it was 1952, unfortunately there is so much more to learn about this disease and we, along with millions of others, are proof that the conventional treatment for Celiac Disease is grossly inadequate. The current conventional treatment for Celiac is antiquated and ineffective long term...There is a real need for more research to be done.
Phew...that's a relief. I think it's likely a very individual thing...some claim they are cured.
Indeed I do!
Clearly there is so much more to be learned about this disease. I'm not sure I actually said "I" believe the SCDiet will cure Celiac, but that Dr. Haas was known in his day as having discovered a cure. The banana diet is fun to read about. In the end the SCDiet was what he concluded was resolving his patients intestinal issues, bananas were not a big part of it, except that eating very ripe ones is on the allowable food list. Elaine Gottshall gives a very good explanation of the science behind why his diet works in her book Breaking the Vicious Cycle.
I wish my drs over the years had been better equipped to instruct me in the area of diet...most of us are left on our own devices to figure it out. So it's a relief to have some practical advice with scientific backing.
Let's not be naive about the popularization of certain kinds of treatments. The gluten-free food industry is a good example of that...over priced packaged foods, many of which could be classified 'junk food'...it's a total money grab. I'm leary of any 'remedy' that is a marketing scheme.
For me personally Celiac disease was not the first autoimmune disease I developed, which I'm more and more convinced was caused by leaky gut syndrome...(but where did the leaky gut come from? did gluten cause the leaky gut or did the leaky gut cause celiac disease?---I lean strongly toward the latter explanation.) The remedy for leaky gut is starving off pathogens with special diet and other means and rebuilding healthy intestinal flora with probiotics. Doing this seems (for me personally) to be reversing all my autoimmune diseases...slooowly. Others have experienced the same thing.
(We seem to have more than one train of thought happening in this thread and I apologize to the original poster if this is veering off into outer space. We could move it elsewhere.)
Ya, SCDiet doesn't work for everyone, the author of the modern book on it was a biochemist who spent 12 years studying the science behind the diet. She says if you aren't improving after a month on the diet to discontinue. There are people who just don't respond well to it and you are clearly one of them.
I hope the kefir helps you and that you can find more foods that work...it's frustrating. Don't think I was ever down to 10 foods but close and I've eaten so much fish I should look like one. I was digesting virtually nothing for a time and living between my bed and the bathroom. There are some good supplements out there designed to heal the gut wall...I was on GI repair for a while. Have you tried anything like that?
What helped me at that stage of things was sticking with meats, fish and poultry (the most nutrient dense foods) and well cooked veggies (the ones you can tolerate). Make sure to get some healthy oil in your diet as well for calories which means energy (ie. cold pressed olive and coconut oil). If your energy is low adding more oil will increase energy. Start with smaller amounts of the oil and build up to a couple ounces per meal. Ripe bananas (with spots on them) are usually well tolerated. Take bone broths (homemade) as much as you can with sea salt. Keep a food diary and record your symptoms to see what works and what doesn't work for you, stick with it and it gets better.
Also, I have taken whey isolate with no reaction (best to take the ones without sweeteners and excess flavorings and cold processed). Boost and Ensure etc all have dairy in them so those were never an option for me. Whey isolate is lactose and casein free and is normally tolerated by people who have problems with dairy...gives you some calories and protein as well as a bunch of amino acids.
Great stories...mine usually involves a huge piece of pizza ooozing with cheese (which I was not able to tolerate either for a long time). Phew...what a panic to wake up to that. Oh we're a unique breed aren't we? lol Da big bad PIZZA monster!
I haven't tried store bought kefir. It's very easy to make at home if you are into that sort of thing and want to know more about that there are youtube videos and many places to buy the starter online.
I've been advised to start slow on any probiotics. (I can tolerate as much as I want now and feel great on them). Start with a tablespoon/day and see how your body responds to it. If you do ok on that amt for a few days, then increase the amount and keep going till you are at your desired amount. You can take a cup or two a day once your body adjusts.
When you start on probiotics of any sort it's important to start slow and build up to more. What happens is the probiotics (good bacteria) go to war with the bad bacteria in your system and you can have some side effects for a short time as your body adjusts, ie. gas, diarrhea. If that happens it just means the probiotics are eliminating bad guys...which is a good thing. I like to add kefir to my smoothies, and have taken water kefir (the non dairy version) for a while now...just started on the milk version and have no problems with it so far...had two cups of it today.
I forgot to mention I have been gluten free since 1998...will stay that way for life likely, but then who knows...I will continue to read about the experiences of others who have walked this path before I decide to retry it. I was also dairy free for 25 yrs and am now tolerating and thriving on certain kinds of dairy.
Remember I'm sharing my experience...not trying to convince anyone of anything...just answering the topic of the thread...what has worked for me.
Ya, there's likely more to it than what this guy is saying...I think he's only got part of the story on the cross reacting stuff, but for me reading this was confirmation that coffee causes me problems and this might be the reason way.
Well apparently it worked for Dr. Haas' patients...and those who continue in that kind of treatment today. I offer the information for those who are interested in researching it for themselves, not to start an argument.
I was offering that as an explanation for my relapse, and for me personally coffee is not good. Others clearly are not bothered by it. I happen to respect the views of doctors of various disciplines and personally have been helped more by those who are not MD's.
I'm sorry you had to go through that. I've mostly read that raw foods are hard on the intestinal tract and should be avoided until things are healed up. It is important to research and discern. I find the best sources of information come from those with the diseases I have who have been successful in finding ways to heal..and have stayed healed long term. All of the resources I mention in my post were written by people with first hand experience with healing themselves. To me that gives them credibility.
Not sure what you mean by this but first you have to be convinced it's what you want to do to try to get well...for me it's not hard to make dietary changes, but I'm very motivated to have a life and this is giving me my life back...so I willing go out on limbs. I'm not saying anyone should jump on the bandwagon with me, just offering up my experience and some resources to look at if you want to.
Yes, any probiotics need to be started slowly. They create a little war in there for a few days trying to get rid of the bad guys.
I agree...fasting isn't something that I've ever seen anyone advocate for healing this stuff.
Yes! Bone broths are very good and I try to have them often. Always better to take real food than supplements. One of the things I appreciate most about the SCD diet...no pushing supplements of any sort...just healthy diet specifically geared toward healing.
Entirely true and this is part of what I've done with the advice I've received...not all the foods on the scd diet list work for everyone...you fine tune it to what your body can handle.
You are right coffee does not have gluten in it...it has a protein that is similar to gluten protein and for many with Celiac Disease it causes problems...I'm apparently one of them. For me it was a factor.
In 1952 the mainstream of medicine took the approach that gluten protein alone was the problem underlying celiac disease but the problem is more complex than that, prior to that...
Dr. Haas treated over 600 cases of celiac disease with his Specific Carbohydrate Diet, maintaining his patients on it for at least twelve months, and found that the prognosis of celiac disease was excellent. "There is complete recovery with no relapses, no deaths, no crisis, no pulmonary involvement and no stunting of growth."
In 1951, Dr. Haas, together with his son, Dr, Merrill P. Haas, published The Management of Celiac Disease, the most comprehensive medical text that had ever been written on celiac disease. With 670 references to published research, the book described celiac disease more completely than had ever been done before.
Fortunately this information is now available and more and more people are finding they are healing from more than just celiac disease on this diet.
A copy of Dr Haas book can be purchased at amazon here.
Another good link that explains things much better than I can is found here. There is so much more info online if you start to search. I figure we owe it to ourselves to be informed as much as we can.
I personally think that's an awesome plan right there...lol...course I'm kidding.
The topic is 'best leaky gut diet'. I personally believe that leaky gut syndrome underlies almost all gut issues as well as a number of other autoimmune diseases. What's worked best for me in combination with an scd diet (please never assume you can eat everything on any list--our internal ecosystem is unique to each of us and some foods work for some and not for others) is probiotic foods...not the pills in a bottle, although they can be helpful too but are inordinately expensive and low in probiotic power in comparison to homemade probiotics. Let me explain.
I have had celiac disease for many years (over 20). A gluten-free df diet helped for a while but my health never really turned around, I just maintained a degree of ill health and was managing for many of those years. Then I had over exposure to extreme stress emotionally/psychologically plus was in an environment that was gluten infested (and didn't know it)...airborne gluten btw. This turned things for the worse, I had some improvements and got out of a stressful marriage which helped some, but a year ago my entire body was descending into hell (pardon the expression but seriously!). I had some exposure to mold and bacteria in water that I think tipped things over for me. Let's just say I developed a very intimate relationship with the bathroom.
Long story short...after a year on a diet that was grain free, dairy free, sugar free, and with many other food intolerances eliminated, I lost inordinate amts of weight but my health started to turn around...even was seeing another autoimmune disease improve. I ate mostly fish, poultry and veggies that were low carb as well as lots of coconut oil and olive oil. I was taking a small amt of probiotics as well...mostly from a bottle and some other supplements to heal the gut ie. l-glutamine, gelatin.
I reintroduced decaf coffee which in case you aren't aware coffee has a protein in it that is similar to gluten and many people with celiac react to it in the same way they react to gluten. I think the coffee made me relapse...after a month or two of the coffee my body was going backwards fast and digestion just stopped happening. I didn't connect it to the coffee until I read about the cross reaction with gluten.
Zoom ahead...less than two months later (took about a month to see a big turn around) on an SCD diet (important) and large doses (i built up to this) of homemade probiotics, I can eat many things I was intolerant to a few months ago, my intestinal tract feels and acts normally (the first time in 20 yrs???) and I can feel my body regaining strength by the day. I am convinced that it is the probiotics that are the key, but the diet is also an essential part of it. Why?
My theory, and it's substantiated medically, most gut issues and many other health problems are the result of opportunist pathogenic invaders, ie. yeasts, parasites, molds, bad bacteria overgrowths, etc.
The SCD--Specific Carbohydrate Diet (GAPS is build on it) was designed by a Dr. Haas a famous NY Dr who is known for curing Celiac Disease...he worked for 50 yrs with patients (was a pediatric doctor who worked with celiac patients). He was still actively working in his 90's. Wrote a book called Management of Celiac Disease that was published in the early 50's(?). He advocated eating a special lactose free (homemade) yogurt along with the diet which together starved the pathogens and over time (1-2 yrs) many of his patients were able to return to a more varied healthy diet and be fine. Elaine Gottshall the author of the SCD book Breaking the Vicious Cycle, went to him with her young daughter 8 yrs old who was literally dying of Crohns disease...they were ready for radical surgery when she found this dr. and his diet cured her...the dd is still around today and living a healthy life. Elaine carried on Dr. Haas' (and his son Dr. Haas) diet and spent 12 yrs researching why it worked...she is a biochemist. Then she devoted the remainder of her life to helping people get well. She died in 2005.
I am using homemade milk kefir (just started this today), water kefir, kombucha tea, yogurt and I'm experimenting with fermenting veggies.(You don't have to do all of these things...many people do fine on one good homemade probiotic like yogurt or kefir. After 23 yrs of ill health, with more than 10 yrs of extreme limitations and bodily dysfunction (living on disability and practically being a recluse) I'm starting to feel like 'normal' and 'functional' might again be words that describe my life. Diet alone won't do it, the probiotics are absolutely essential, and stress-reduction, exercise, etc. of course all play a part as well.
Books I have read: lots on celiac disease that were not all that helpful over the years (I was a religious adherant to the gluten-free diet), The Leaky Gut Cure Karen Brimeyer...very helpful (still following her diet with a few minor moderations), Listen to Your Gut by Jini Patel Thompson...very indepth and helpful...still reading it, Breaking the Vicious Cycle by Elaine Gottshall...essential for everyone to read...I'm following this diet currently, some books on Paleo diet, which is similar, The Healthy Urban Kitchen...great information and good recipes (not all fit my diet), Sally Fallon Nourishing Traditions, and want to read Body Ecology Diet. I would really like to read Dr. Haas' book but it's out of print and expensive to buy used. I'm a little irate that there was a medical Dr who found a cure for Celiac but his work is largely ignored in the medical arena and still today most doctors are oblivious. It seems if there is not a prescription medication to give you they don't know what to do with you. On the other hand, a 3 min call with a naturopathic dr. got me researching leaky gut syndrome and lead me to the answer.
Sorry this is so long but I wanted to share what has worked for me.
Well living in the boonies is not beneficial to one's health...I was to see the gastroenterologist yesterday...gave him my story...he suggested I do a gluten challenge for 2-3 weeks and have a biopsy to confirm celiac...I said "NO" well he said it is your body...indeed!!! I said I don't need to get sick for you to tell me I am sick...and you know I have my doubts he would be able to tell me anything after only 2-3 weeks...I have been gluten-free for years...except that now I realize my vits which were supposed to be gluten free may in fact not be since the more I took the more the fatigue, pain and muscle spasms increased etc...
I am totally wasted today from the 8 hours trip to the specialist yesterday but over the past 12 days or so of being dairy free again and not taking any gluten lased vitamins I have been progressively improving...have a long way to go tho and we are hoping that all the other weird blood tests will slowly return to normal too if the celiac disease has been the root of all of this...and not some other funky autoimmune probs...So far blood tests have shown that I have elevated parathyroid hormone, increased cortisol, extremely high folate (which makes no sense at all), too much creatinine. I am also osteopenic, have osteoarthritis, hypothyroidistis and vitilago...the hypothyroidism and vitilago have been around a while...the other stuff is new in the last two years.
Anyone else here every have a return of symptoms after a period of feeling great? My problem was that different symptoms showed up the second time around...mostly musculoskeletal...which threw me off...I was thinking no gastro probs meant I was doing ok with the celiac disease and developing other things....My gastro looked at me when I explained these symptoms and said well it sounds like you need a rheumatologist and a neurologist....hmmm...and all these symptoms are evidence of malabsorption are they not which is a gastro prob? Gotta love doctors...
Yes, there is hope...I had a year of great health after being gluten free for two years in which I saw steady improvement. I have been getting bits of it in hidden places...I have resigned myself to avoiding any packaged foods that are not expressly made by gluten free manufacturers...have a great gluten free company called kinnikinik that I don't think I have problems with...I am keeping a journal of everything that goes in my mouth and recording symptoms...assuming that I remember, that is...I am way more educated than I was a few years ago thanks to the internet...I also have an MD at the moment who seems to know more than the gastro dr...and who is determined to get to the root of all this... thankful for that...
Any old veterans around here who have dealt well with this for long periods of time??? Would love to hear anyone's input...
Thank you for your responses...It is amazing to me that I have not made the connection until now but this is making some sense...I had no idea that all this neurological, joint, and muscle pain could be related to celiac/casein...just such a lack of info out there when it comes to this stuff especially from MD's. Looks like I am going back to the drawing board with my diet and see if I can turn this around with time...thank you...still rejoicing in finding this website and message board...and thanks for those blessings and prayers...think this journey may take a turn for the better...well, one can only hope...and hope is a good thing. Blessings to you!!