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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where 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 want to ask some of you who've been on the diet for a while now - how much have you gotten better overall? How much more do you have to go?
I'm nearing 3 months on the diet, and while there are some days when I feel great, there are many others when things seem to be sliding backwards. In the past week or so, some symptoms that I had thought were long gone (itchiness being the main one) have returned with a vengeance. Although I've cautiously added a few foods recently, there still hasn't been much expansion of my diet beyond the few core foods I've been sticking with (proteins and a few vegetables). Just eggs, coconut oil, bananas and a couple others. I'm going to try skipping the eggs and coconut oil for a few days to see what happens.
Reading all your posts is very encouraging, especially AliB's as she seems to have been on the diet the longest and has a good handle on everything. I'm just not sure if I could be doing things better, or whether its all just a matter of time and being patient...
Same as me, I can have Bananas (though I suspect they cause C), but everything else gives me trouble. Tried pineapple today actually but didn't fare too well.
I tried L-glutamine around when I first started SCD. It just made me feel really tired and I stopped after a couple days. Maybe I'll give it another go sometime. The brand I had was Jarrow, I remember looking into it and confirming that the ingredients were good to go.
Olive oil does not take to heat very well, as its chemical structure is changed and loses its healthy properties. I highly recommend Virgin Coconut Oil, it is thyroid-boosting, anti-fungal/bacterial/parasitic and tastes great to boot.
I am about 10 weeks in and I get the same exact reaction from fruit. Even fresh juice from a juicer gets me bloated, though not commercial juice. That means that tiny bit of pulp in fresh juice is still too much for my system to handle. Walking through the produce section of the grocery store is unbearable at times, but I'm hoping that I'll be able to tolerate fruit in a couple more months.
As far as commercial juice goes, I find that Bolthouse Farms Clementine Juice is really well tolerated and delicious (though expensive). It is very tangy so I dilute it heavily, with almost twice as much water. I drink their carrot juice sometimes as well.
I tend to have juice all through the day (though always at least 45 minutes before or after each meal). Do you guys think it would be better to just have it in the mornings?
It is definitely tough without any kind of "treat", although I enjoy eating meat so much that it kinda does the trick for me. I go for pretty fatty cuts such as pork belly and beef ribs. It is strange but I notice a clear difference in how well I tolerate different cuts of meat.
My favorite fish is Mackerel, which is both ultra fatty and supposed to have pretty low mercury/PCB contamination. Very filling.
Here is a good site that shows contamination levels of different kinds of seafood - http://www.edf.org/page.cfm?tagID=17694
It shows Atlantic Mackerel at the bottom, saying it is safe to have more than 4 servings a month. I certainly hope so, since I eat it every day
Thank you for the encouragement
Going through this diet has been the hardest thing I've ever done, and because everything is uncertain and ambiguous, it's so easy to get discouraged and frustrated. But on those days when I see progress, I realize that there is light at the end of the tunnel.
Figured it was time for an update..
So since my last post I've been following the diet to the letter. I went on the intro diet for a couple days and have been in stage 1-2 since then. I would cautiously say that I am feeling better. My eyebrows nearly stopped falling out for about a week, then I had a sudden flareup of symptoms (with horrible joint pain) and since then my eyebrows are still falling out. Joint pain has been much better since then though.
I am not sure what caused the flareup, it was right around the 1 month mark for me (could be that dieoff that Elaine talks about). My best guess is that it was caused by eating too much fat, as I definitely seem to have trouble digesting it. I found that my digestion is best when each meal is somewhat balanced in terms of fat and protein.
I feel like I've made a lot of progress regarding understanding my body and the signals that its giving me. Eyebrow loss seems to be a very sensitive indicator of how things are going and reacts within 1 day to any gut inflammation or food that I cannot tolerate. Joint pains are more of a lagging indicator that are caused by the overall state of my gut and how things are progressing. Lethargy and energy levels are directly related to my digestion.
I started taking Betaine with Pepsin 3 days ago and have mixed thoughts on this. It's hard to tell whether my digestion feels better, but it definitely isn't worse. Since I started taking it, my joint pains have been close to nil, although the trend seemed to point towards improvement even before. However, I have noticed that I feel really lightheaded when I stand up after sitting for a while. This wasn't really a problem before. My tongue also feels quite sore, I know this is a traditional Candida symptom but it wasn't there before either. So I was wondering if you guys had any guidance/thoughts regarding this.
Once I get all this sorted out I'm excited to step things up a notch with Yogurt, etc. Would love to be stepping more lightly as well..
Thank you everyone for your advice. The bit on eating small meals and not having too much of one thing at once was particularly helpful. It feels a lot easier to just be constantly munching on little things that are simple to prepare (like boiled veggies doused in olive oil). Before, I was trying to eat 2 really huge meals a day in hopes of loading up on calories, but spreading everything out is much better. I'm pretty sure I can't take any nuts, but I'll make up for it with oil. That's not a problem right, eating tons of oil, split up between many small meals? I realized that one thing that is holding me back is my general lack of common sense regarding health and eating. I'm sure that its absence has had a big role in getting me to this point, but I know that changing will be instrumental in getting better and staying healthy once I do. I've started to also try to maintain a steady sleeping schedule (which used to be absolutely chaotic), spending time outside in nature, eating slower/chewing more, etc. These are all things my parents had been telling me about my entire life, but they always just went in one ear and out the other.
Also, where do you draw the line on what foods you tolerate or not? I can tell that fruit makes me a bit tired, and eggs gives me some bloating. So I know that I'm not digesting them with flying colors, but they are better tolerated than some other foods. I haven't been able to connect them with larger symptoms. Is it ok to keep eating them in small amounts?
As far as where I stand in terms of stages, I would really like to do the intro diet but it just doesn't feel feasible for me at this stage. I realize that I may not get the full benefit of the diet, but I'm willing to accept that at this point. I know that on Pecanbread it says that people who skipped the intro can go back to it later on for additional improvement. For now, I am just looking to find a stable equilibrium with a manageable number of foods from which I can get enough calories to sustain myself, while keeping advanced foods far out of sight. I think that keeping it real simple, a couple fruits, about 5 kinds of veggies, meats & fish, and lots of oil is the way to go. Lots of juice as well.
Candida is probably an issue, but I don't think I can worry about that right now. I figure my diet is still a lot better for battling Candida than it ever was, so improvement is still being made, and if I can recover the ability to eat dairy and nuts down the road than I can get to tackling the Candida.
Finally, do you guys have any other recommendations on foods that have a lot of calories? There has to be something..
So the last few days have been pretty eventful. My foray with nut butter was disastrous and I finally saw the connection between them and increased symptoms, especially brain fog, fatigue and joint pain. But even after removing nuts, I still don't see a significant improvement in joint pain or eyebrow loss on the SCD. I also got really discouraged because I am continuing to lose weight. To put things into perspective, I am 6 feet tall and I have dropped down into the 130s. So this is a significant constraining factor for me. Because I absolutely cannot eat nuts or dairy, there is a huge limit on the amount of calories I can eat while still being SCD compliant.
I started thinking that maybe the SCD wasn't right for me, so I tried eating some brown rice and it made me so tired that I immediately fell asleep. The day after that, I decided to start over on the SCD with the intro diet. I made a beef bone broth yesterday that tasted pretty good. It had nothing in it other than beef and sea salt. After my second serving of it, I started to feel a lot of discomfort in my stomach and eventually woke up in the middle of the night and vomited heavily. I also had pretty bad D.
I see three possible causes:
-The meat was spoiled
-My body is rejecting meat because I've been having way too much of it
-My body couldn't digest all the fat (the meat and soup was pretty fatty)
At this point, I am really not sure what to do. I believe in the SCD and would like to follow it, but it simply does not provide enough calories. Even drinking tons of juice and adding olive oil to everything doesn't help. I'm starting to think that heavy meat consumption is what has been making my joint pain continue despite going gluten-free and eventually moving to the SCD. If I can't even eat meat, than there simply is nothing for me to eat. My doctor is being a dick and pretty much trashed the SCD. I am feeling pretty cornered as there seems to be no solution that manages to satisfy all the constraints.
At first, I saw losing weight as a "taking a step backwards to take two forward" kind of thing. But at this point I have nothing left to lose, but I could see myself dropping to the 120s pretty soon. What do you all think??
Hey guys, thanks for all the advice.
I'm nearing the end of Day 4. After initially feeling great, I've been getting muscle aches, lethargy and excess mucous for past couple of days. It feels like I have a cold (not sure if I really have one or it's just withdrawal). Joints and eyebrows are looking alright though.
I was at the natural food store and I found a supplement that has tons of D3 and Glucosamine, MSM, et al. It is SCD compliant so I figured it was just what I needed. I also picked up some Turmeric, which I'd been using for a while but stopped because I didn't know if Nature's Way is gluten-free.
I tried some Macademia Nut Butter and it's really good. I think it made me feel tired though. I always felt like nuts had that effect on me, not sure if it's just because they are high in fat or because I'm not digesting them well.
As far as social issues go, I agree that I need to become more comfortable with everything. I've been mostly avoiding my girlfriend since all of this started - she's been very supportive but I feel that it would be easier if I just toughed it out on my own.
I feel really grateful that I found this at a young age.. I have worries about how it will affect my social/romantic life going forward but I'm just trying to take it one day at a time. Luckily, this is my last semester before graduating, so I have a lot of time to devote to cooking and increasing my knowledge.
I definitely think rampant NSAID use contributed to the current state of my gut. It's just a vicious cycle (lol).. my joints hurt so I take NSAIDS.. which hurts my gut.. which makes my joints hurt. That's interesting about red meat, I didn't know that. I could definitely see that contributing to my additional pain since going gluten-free, but as of now I can't think of any way to reduce it without losing too much weight. I'll try some more nuts today.. I already tried the almond nut butter (hopefully I tolerated it okay) and I'll go for the macademia nut and cashew now.
I've been eating fruit on its own, 2-3 hours after a regular meal. A lot of fruits seemed to give me trouble when I was just gluten-free, so I'm trying to be really careful. I think juice is okay though. I remember some talk back in the thread about Welch's grape juice becoming illegal because the formula changed, do you know anything about that?
As for my eyebrows, they seem to be skin-related. I usually have dry/flaky skin and it seems that the skin under my eyebrows is flaking up like crazy. Kind of silly, but this symptom bothered me so much more than all the others (my dad has really thin eyebrows now and I don't want to end up like him! ). I felt like it really put pressure on me to come up with some kind of answer quickly, before they all fell out. Some days are worse than others, but they have been falling out less since I started SCD (fingers crossed).
Hrmm hopefully there are no thyroid or adrenal problems going on. I never had a big problem with my energy levels, and they definitely saw an improvement when I went on the diet.
I don't have a regular doctor, other than the one who did the endoscopy/biopsy for me. Some of my labs came back and he said my vitamin D is low, and I'll find out the rest on Monday. I guess I should try to get some more sun, since I don't think my skin has any malabsorption problems
So this is Day 4 of the SCD..
I've mostly been eating meat, fish and vegetables. I've always been a big meat eater, so I don't really mind. It does feel like I'm eating way more meat than I should, but I convince myself that traditional notions of healthy eating are completely wrong. I'm pretty much in Stage 2 a la Pecan Bread, and I'm doing a rotation as well. Since there are not many vegetable choices open so far, that really limits what I can eat. I don't really mind though. Since all my meals are cooked at home from scratch, I am 100% compliant, except for the NSAIDs that I unfortunately have to take. Anyone know a brand that is ok with SCD?
So far, I'm very impressed by how I feel. I don't want to jinx it, but I must say that my mind is clearer than it has ever been. Depression/mood swings are nil. Neurological symptoms seem to be the first to ease up for me, as they also showed the most improvement when I went gluten-free. The way I feel on the SCD is leaps and bounds ahead of gluten-free though
However, my joints still hurt, although they seem to be getting better. My eyebrows are still falling out (a very recent symptom that developed in the past couple months).
Something I found weird is that my stomach has been making a lot of noises after I eat, also I've been gassy and constipated - all of which I never have been before (I had no GI symptoms before except for bloating). So I'll take them as a sign that things are changing down there!
I felt a lot of cravings for the first few days, and it was difficult to concentrate at times. Things seems to be better now. I quit smoking cold turkey a few years back, so I am pretty experienced with cravings and laying down some iron clad self control
Right now I am broiling a rather impressive cut of beef and boiling some green beans. Hopefully I will be able to expand my food choices soon, as all these recipes you guys have been discussing sound delicious. Fruit seems to have been giving me trouble so I've been avoiding it except for juice. I tried almond butter for the first time last night, not sure if I tolerated it ok. Since I am still going through dieoff/withdrawal, it's really hard to tell which foods are giving me trouble. Some make me itch, so I avoid those, but there seem to be some silent killers. How do you guys know if a new food isn't working out for you?
Another newcomer here. I'm a 23 year old male college student, a bit different than the typical member here wouldn't you say?
Most of my life, I got a variety of symptoms but mostly ignored them. Refusing to go to a doctor, I just accepted them as the way things were. These included joint pains, mouth ulcers, bloating, depression, anxiety, mood swings and brain fog.
Over time, these symptoms got worse and they started to affect my life in a significant way. My joint pains made it impossible for me to work out or exercise. My mouth ulcers were getting more and more frequent. All the neurological symptoms were starting to really affect me and drag me down. Because I had so readily accepted these things as part of who I am, they started to really make me pessimistic about the future and give me a negative outlook on life. I did a lot of research into joint pains and arthritis and concluded that I had some form of auto-immune arthritis. This worried me a great deal. I also lost about 50lbs over the past 5 years - this didn't really bother me for the first 30 lbs or so but after a while people started telling me that I was too skinny, etc.
One day, I randomly came across something that said that joint pains could be caused by gluten intolerance (it was a comment to an article in the NYTimes out of all things). The wheels started to turn. I drastically reduced my gluten intake for a while and noticed that some of my symptoms got a lot better. I tried challenges and would feel horrible the next day. I had a hard time accepting it at first, but eventually I came to see it as a blessing in disguise, as I would finally be able to rid myself of problems that had been bothering me for my whole life. I went to a doctor and got an endoscopy/biopsy and blood panels done, the results are coming out next Monday, but my doctor said that most likely things are pointing more towards gluten intolerance over Celiac. I went completely gluten free and starting cooking every single meal for myself (quite a challenge for a 23 year old college student ). After about 10 days, I noticed that most of my symptoms had shown improvement, but my joint pains had become SO MUCH WORSE. I also started reacting to seemingly random foods that I had been fine with before. I was baffled and frustrated, as well as discouraged. I tried to analyze the situation and figure out why. I did a ton of reading on the forum in search for knowledge that would help me understand. One day it just came to me, that as a replacement for gluten, I had started eating tons of rice. Everything clicked. I also compared this to my past history and realized that my joint pains had flared up in periods when I was eating more rice.
So here I am with the SCD. I intuitively realized that SCD was the "heavy-duty" diet, that people use when others things don't work out. As for me, what I found attractive about the SCD is that it would put my health into my own hands. I could go on a gluten-free diet, wait around and hope that my gut heals itself, or I can take action and do as much as possible to help things along.
Well, I just wanted to take a moment to introduce myself. I really want to thank all of you, as I've read every post in this thread and it has given me a lot of encouragement and knowledge.