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
Saw my gastro on Monday. He discounted the probability of food poisoning and is convinced it was a reaction to gluten exposure. He said what I was describing to him was this immune cascade and that I am just extremely sensitive to gluten. That I have had so few exposures in the last five years is a tribute to the support I have gotten from my family (who is not gluten free.. rather.. "gluten lite") and the fact that I have been very cautious Thing is, right now, I just feel like withdrawing from the world. It took me several years to venture out into social settings at first and, in a way, I feel like I am mentally back to square one with that. I suppose it could be my body's proctective mechanism saying that it's too early to risk re-exposure in light of the most recent episode. Things are not back to normal but are also not near as bad as they were several days ago. Small steps.
well, for the first time in the last five days I actually slept for more than 45 minutes last night. Made it a little over four. The rash is something I have had in relation to Epstein Barr virus that has plagued me for more than twenty five years. When something pushes me over the edge I will end up with this bloom. I am wondering if something shut down at the cellular level with my energy metabolism. I have been exceedingly weak to the point where I suspect intestinal transit time was a result of things just sliding right on through. I know most would say you need peristaltic action in order for there to be transit time, fast or slow, but to me it felt as if there was no muscular activity save for an occasional severe cramp. I am weak and tired but am now tolerating drinking water without it going straight through and am on my second mini meal of the day. It takes me forever to eat, though as it is tiring me out. To go from having to run to the bathroom every half hour to forty five minutes to now going on six hours is a major relief. Energy has always been a problem for me. I still have a mouthful of mercury amalgams. I know some people tolerate them with no problem but a key to my initial healing a few years ago was when I included a heavy metal detox on a daily basis. I have not been able to do any of this in the last week so I wonder if that is contributing to things. I had five of my largest amalgams removed when I had my root canal teeth taken out a few years ago and the results were pretty startling. My hearing immediately improved and my tinnitus all but disappeared. But, I still have 11 substantial fillings remaining in addition to two porcelain over nickle crowns that are not a good combination. I could run a small radio off my teeth if I were stuck on Gilligan's Island. Anyway, it appears that the worst is over and I will be seeing my Gastro on Monday for whatever followup he deems necessary. Until then it will be lots of napping. Thanks for theconcern and suggestions. The avoiding Anti-diahrreals was, I think, a good suggestion. I was contemplating going that route and am not sure it would have been wise since I am not 100% sure as to the source of this.
I can't believe I managed to stay away from here for so long. You all got me through some of my darkest hours in the early days of my recovery. Things have been going so well. I have been on a steady road to recovery for many years now with very little in the way of complications. When I saw my Gastro last year it amounted to "You are looking great, keep on doing what you are doing and unless something changes I will see you in another year." Hard to imagine it reached that point. Back to heavy workouts and exercise machine building, subbing on a regular basis and not freaking out in classrooms full of gluttonly sweaty careless middle and high schoolers. Educating them every chance I can and helping a few otherwise silent celiac sufferers as a result. So gratifying when I have them come up to me after I have shared my health journey and they have all sorts of great questions. Given the opportunity and good information kids can make good decisions but they live in such a toxic environment that is hampered by educators who are shamefully using the most unhealthy foods as rewards. Ah, but I am drifting way off topic.
Monday night I was eating some food I thought was from a trusted gluten free source. I eat very little processes food anymore and usually stick to organic, locally sourced and ethically raised antibiotic hormone free. So, I thought my little indulgence of all beef hot dogs from Applegate (normally trustworthy in the past) tasted off. Since it is the only processed food I have eaten I feel safe in finally implicating but Mods please feel free to pull out the name if you feel it unfair to them. I have now used more TP in the last 96 hours than I typically use in 6 months (yes, I have been calculating!) cannot eat anything of substance without it going straight through and even though I am not eating have bouts of watery D every 45 minutes or so. I bloomed full out with a rash all over my chest, back and thighs down to my knees and have been extremely weak. I wanted to think it was flu or some other malady but the way all my mucosal linings are feeling I am pretty sure it is a result of gluten exposure. I have checked out everything in my environment to see if it might be from something other than food. CC or something. My family is really very careful about that issue and we can't find anything. They are miserable to see me this miserable. Things are starting to settle a bit today. I can't get in to my Gastro until Monday but have had several times when I almost made it past two hours without needing to run to the bathroom. Such a severe change from the last several years. Any food I try to eat gets on the rapid transit so I know my lining of my GI tract is very unhappy presently. At first I thought I might have picked up some sort of bug and threw off my gut flora but as the days wear on I am pretty sure it is a glutenning. So rare for me that I just can't say for sure. I can't take in more than a few sips of water here and there for the time being. Any observations or survival tips appreciated.. or just tell me to grow up and get a real job or something like that.
Uh, tons wrong with it! We get into so much trouble when we try to outsmart the innate intelligent our bodies possess. Lack of clear thinking gives the (P)harmaceutical industry the opening to exploit our lack of total understanding. If you parse the numbers in almost any safety study you will find the risk numbers being calculated on one scale and the benefit numbers on another to make it appear so much better than it actually is. The simple answer. Gluten free. Simpler answer, real food, even simpler, grow your own or get to know a local farmer. Create micro economic climates that don't support the industrial food complex that is ruining the health of a world.
In the early days of my recovery (and leading up to it for many years) I seemed to have lost the ability to handle any sun exposure. I would burn easily and had to be very cautious. Have they been monitoring your vitamin D levels as you recover? I was put on megadoses of D3 and still my D levels were not adequately recovering. When I added a lot of healthy fats and cholesterol from trusted sources, pastured butter, coconut oil and lots of pastured eggs and stayed away from vegetable fats like crisco, corn oil, canola oil, soy oil, cottonseed oil, my D levels began to rise and I was able to begin tolerating sun exposure once again. I went from being pale and pasty to having a more natural color year round. I don't overdo exposure but certainly tolerate it much better now. The paradox of sunscreen is that you are spreading a toxic substance on the body's largest organ that blocks the body's ability to synthesize vitamin D naturally. The mechanism of producing it requires ample supplies of cholesterol, so if you are trying to eat low fat/low cholesterol it seems you would be setting up the mechanism where you remove the very things that the skin needs sun exposure to make for good vitamin D levels. Vitamin D which is now being understood to be crucial in the prevention of all sorts of disease mechanisms.
I know I haven't been around here much in the last year or so but that's because things have been going relatively well. I was a bit discouraged for a time because my gastroenterologist, whom I trusted so very much during my whole diagnosis process, had sort of disappeared. He left he practice at Alliance Community Hospital and there was no word of whether he retired or was going to resurface elsewhere. I got my records from his practice as I was not interested in the new doctor there.
I was referred to another gastro closer to home and went for an initial visit. He is on the teaching faculty at NEOUCOM and so I figured there might be some potential for meaningful discussion. I was wrong. He wasn't at all interested in why I was getting better and dismissed me with a "see you next year" send off. Well, next year rolled around and I discovered my original Gastro, Dr. John Park, had resurfaced with the doctors at Clinical Gastroenterology, Inc. in the Belden Village area here in Stark County.
I cancelled my yearly follow up previously mentioned doc and scheduled with Dr. Park. He sat and patiently questioned what I had been doing since we last talked. He listened. His assistant took copious notes. He was very pleased at my progress. The last time he had seen me was after my last upper endoscope which had raised the specter that I might have to be considered as having refractory celiac as there was not the healing he had expected in light of my strict compliance with gluten free. I related much of what I had been doing to address gut flora health and spelled out my radical diet. After a physical exam he encouraged me to keep on doing what I have been doing as it was obvious to him that it was working well. We talked about some endurance issues. He explained that, although I was doing so much better there might be some ongoing issues with endurance as a result of celiac but that my overall improvement was encouraging and not to be too concerned about the endurance issue.
He said that unless I encountered any sudden changes in my health that I was good to go for another year. So different from when we were in crisis mode early on when nothing was under control and things were looking bad. I know that doctor patient relationships are sometimes dependent on how the dynamic works from individual to individual but I would encourage anyone in the NE Ohio area who is in need of a good Gastro to consider Dr. Park. I hope I am not out of bounds by suggesting this but I had to relate my good experience. It has been a difficult journey but things do get better as you figure things out. Best to all.
And yet, here I am after a very rough stretch of days. Granted, It is nowhere near as bad as it used to be .. but... Ate some organic stuff that slipped under the radar as far as having some ingredients I haven't had for years. Honest mistake.. but.. my joints feel like one of those barbequed chickens from the store that you could just pull apart and I have had intestinal spasms. Yes.. it certainly seems that all the reactions are far worse once the culprit is identified and removed from the diet. It's like it's this red flag that emphatically says "no more....EVER!" I often wonder where I would be had I not had a lifetime of fallout from all this. People like to say I am so lucky to have figured it all out but the wounds go so deep it's hard to get anyone to really understand. I look so much better (well.. that's a matter of opinion) so when I have a day like today, as rare as it has become, I still have a hard time and feel like I need to explain why I just feel like doing nothing until the pain, nausea and discomfort go away.. And yet I press on doing what I can.. I also worry about the long term consequences of such severe systemic inflammation and wonder what it has done to my outlook for longevity. Because of that, I try to live much more for today. That has been, perhaps, the greatest upside of this.
Long time since I have been hanging around here. I miss everyone and all the passion and support that got me through the darkest times in all of this. I agree with so much of what you are saying. I hate to hear the old standby suggestion to "make sure you keep eating gluten (uh.. poison) until after all the testing is done" garbage. I tested negative but the evidence was so overwhelming that the doctor did the scope anyway. Thing is, I was fortunate to have a good gastro who did it right.. or maybe was lucky. The damage can be very spotty and the samples they take from random locations might miss it altogether thus giving the appearance of no atrophy. It didn't matter in the long run whether I got the ok from the doctors or not. There was no way anyone was going to get me to "challenge" by eating anymore poison. I was dying and when the light bulb went on, there was no turning back. I knew and that was all that really mattered. It's nobody elses' business as to what my official DX was (even though I did get a positive DX for celiac.) oOf course, that's a lot easier for me to say now than it was back then. It was brutal at first. All I know is that when I went rigorously gluten free that I went from dying to recovery and from recovery to living and from living to thriving. Granted, I still have a ways to go but just this past fall I was talking to some rheumatoid arthritis researchers about how, after my celiac diagnosis and switch to a very low carb gluten free diet and strategies to restore my gut flora, that my supposedly irreversible joint damage sort of kind of began to reverse. My hands, which used to be claws are almost completely back to normal. My elbows, which I could no longer fully straighten to within about 15 degrees of straight, are now capable of full range of motion. I have no gel time when it used to take two plus hours to get past shuffling. Thing is, according to the initial blood work, I shouldn't have received the scope. Even with all that Fasano is doing and that others have contributed to the field, I don't think we're anywhere close to putting it all together in a way that is truly helpful. I think that the commercialization of the celiac diet has messed things up so severely that many are no better off than pre diagnosis because of it. I live and eat on the lunatic fringe now but do so happily because I have my life back. The perfect storm, the confluence of so many food and environmental and medical (pharmaceutical) changes that have happened over the last fifty years are wreaking havoc with our genetic expression and we are the proverbial canaries in the cage.. but the cage is getting mighty crowded. Anyway... rant over. I have way too much catching up to do here and I hope I see some old friends.
I understand the emotional turmoil. It's odd when you appear to be ok to everyone.. at least by some sort of minimalist standard, when you know that nothing is working right. It's enough to make you crazy at times. Then, when the doctors don't really help it is frustrating as well. You already made a valuable decision. I stopped glutens before I ever got a positive diagnosis by way of biopsy. No way I was going to restart something that I knew was harming me so much. You have my permission to trust your gut instinct (you don't really need it... just thought I would offer.) It seems like so much of the medical runaround I went through was to make the doctors happy with themselves. I already knew the answers and yet it seemed like I had to have some official badge to prove to everyone else I really wasn't crazy. That's crazy! Be strong.
I can relate to so much of your pain and I cry for you a bit today. You have been one of the very important people in my life as I have struggled to recover from this. You are an angel here on earth and I only know you through this forum. Pets are family and I understand your loss. Prayers from here to there for you.
Just have to throw this out there for what it's worth. I have been using raw dairy now to great effect for 4 months. I was not able to get to the farm (out of state) recently so I decided to try some Kefir from the local health food store made with pasteurized milk. Got very ugly boils all over my hips and the tops of my thighs. Kefir was the only thing different and this is similar to what I would get when consuming regular pasteurized milk years ago. Stopped the kefir and the boils are healing up and going away.
Dairy is pasteurized thus potentially causing problems for many. When I switched to raw dairy I no longer had problems. That's just me though. I have good cows and a good farmer. Not saying that will be the case for everyone. It is expensive to get raw dairy but worth it for me. It has helped tremendously.
Corn and soy are so heavily GMO now that there are many potential problems there as well. Soy is estrogenic and there are implications for difficulty there as well. It is the GMO component that is of most concern to me. Somewhere in the neighborhood of 80% of all con and in excess of 92% of soy in this country are GMO. This allows for the application of up to 86% more herbicide by farmers and is residual in the product. This can effect the stomach and lining of the intestines.. already a problem for those if us with celiac. Gut permeability issues also heighten this as a problem.
Legumes are high in lectins and those with gut permeability issues want to decrease gut permeability thus the need to avoid legumes.
From personal experience I can say that all grains cause problems for me. Cutting them all out was a necessary step to my regaining a considerable amount of good health and gut function. It also makes compliance to gluten-free much easier.
All, of course, IMHO.
Thanks for the support. That's why I love this place so much. I was worried I was over reacting at first but am learning I have to educationally verbal as I advocate for the cause. The level of other comments on that article just reminds me of how fortunate we are, in this cyberspace planet, to have such a safe haven of truly wonderful people here.
I was pale and prone to burning when I was at my worst healthwise. As I have recovered and vitamin levels have returned to more normal ranges I have found that my overall color has gotten much better. I received a number of comments to this end as recently as yesterday. Have you had your Vitamin D levels checked?