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.
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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
Where can I buy gluten-free stuff?
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Thank you for your post! There is one good thread on here comparing the GAPS diet to the SCD diet which I skimmed the other day. It does sound like GAPS applies to me almost perfectly though, so that is the one that I am going to do. I ordered the book + the cookbook last night. I'm not sure if I'm going to start with the intro diet or the full GAPS diet considering I already have been hopefully healing a little by being gluten free/dairy free for 3+ years plus a pseudo-SCD/paleo diet for the last couple of weeks/months.
I don't have a slow cooker yet, but I will have to look into getting one. Thank you for the link to that thread. I am also taking anywhere from 2g-6g of L-Glutamine a day to help heal.
I am very sorry to hear that you are developing more intolerances. That's really no fun. It's good to hear that your villi have grown back though! That's progress! My best wishes to your continuing healing process, and I definitely share your frustration with the Western medical system. It's really no fun dealing with when you have a condition such as ours.
Ok, so I have been doing more research into the relationship between antibiotics and gastrointestinal issues and found the following article. It sounds like it describes me personally. I think I'm going to buy her book and give that diet a go. Has anybody heard anything about it? Is it a sham? It makes perfect sense to me and I think it is the best fitting explanation and road-map to healing for myself that I have found yet. I wanted to check here first to see if anybody has any experience with it.
This is the introduction article that led me to the GAPS article:
This is the GAPS article:
I would really appreciate any opinions or personal experiences with this plan. It's giving me a little hope, so I hope it's not a dud.
And here is the "most helpful" review quoted from Amazon. It sounds exactly like what I'm going through except mine is of a lesser severity. I am thinking about starting a new thread for this but I'll keep it here for now to see if it gets any responses, and then maybe make a new thread if me or somebody else deems fit, in case it could help somebody who won't otherwise stumble into page 3 of my thread.
Also, here is the link to the book. The subtitle is a little misleading, as pointed out by some of the people in the reviews:
Edit: sorry, after a basic forum search (should have been my first move) I found a lot of information on GAPS. I'm ordering the book tonight. I'm really excited about the future!
A couple of other points. I recently was talking to somebody who was saying that ever since they took accutane (an antibiotic for acne) they have been having terrible issues with anxiety, brain fog, and digestional issues. I looked it up and apparently there is a lawsuit against them.
Hopefully that makes sense to somebody out there who might want to help me develop it.
Sorry it took me so long to respond. I have been keeping extremely busy with school, work, and health struggles.
Sorry to hear that you went through this too. It's really no fun. That's the stage I'm on now, trying to figure out what produces reactions and what doesn't. I'm hoping to get a better feel for that after school gets out in a week and a half. I am running under the assumption that I am gluten intolerant and dairy intolerant. I don't know if I would need to change anything if I changed my assumption to that I had Celiac disease, but it's worth a shot.
The digestive enzymes sounds very promising, do you have a brand that you use? I'll have to go pick them up next time I'm at the store. Are they different than probiotics?
I can't do pork, and beef is one of the main ways I'm getting calories on one of my days right now, I don't think I could cut that out. I was eating tuna on one of the days (6 cans) but I don't think that's a good idea, and other fish is very expensive, but I will have to look into it. I'm eating a lot more right now for sure. Here's some examples:
1/2# turkey burger
4 Kind bars (see what I mean about the food on the run)
1.5cups rice (dry) with carrots and green peppers
About to eat the other 1/2 pound turkey burger
1lb ground beef
Salad (romaine, peppers, olives, tomatoes, balsamic vinaigrette)
1lb ground beef
I also think that I have to cut out olive oil, I think it was making reactions worse.
Thank you very much for your help everybody, I really appreciate it.
I don't think I'm eating very much of those anymore. I cut out rice and most of the fruit. Snap peas on occasion still, no chickpeas, some nuts. I didn't know fruit and nuts had carbs in them. There's so much conflicting information out there it makes me want to scream sometimes. It's the biggest balancing act that I've ever seen. Very frustrating.
I'll post what I've eaten in the past few days if that helps at all. "Spices" refers to a blend of sea salt, rosemary, tarragon, garlic, white pepper, green peppercorns, crushed chili peppers, and cinnamon (store bought). I decided to start the rotational diet part way through Sunday.
1 Good Earth vitamin, 5000 IUs vitamin D
4 eggs fried in olive oil, hummus, 1 tomato, 1 jalapeno pepper, salt, pepper, hemp seed
1 Good Earth Vitamin
Broccoli with olive oil and salt
2 Handfuls of walnuts
1/2lb ground beef with spices
Roasted brussel sprouts with coconut oil and spices
1 green bell pepper
1 glass peppermint tea
Salad - Arugula, olive oil, balsamic vinaigrette, artichokes, sun-dried tomatoes, salt
1 handful pine nuts
1 can of tuna with olive oil and spices
1 pumpkin ALT Larabar (includes dates, peanuts, pumpkin, spices, and maybe a few other things)
Cauliflower with olive oil and spices
1 avacado with olive oil and spices
Probiotics, 10mg omeprazole (weaning myself off this)
4 eggs fried in coconut oil, hummus, spices
1 Good Earth vitamin, 5000 IUs Vitamin D
1 clove raw garlic
I have a couple of 10 hour days on campus and I'm at school full time and work 20 hours a week so it's hard for me to find things to bring with to last me a whole day while still rotating, hence still eating the snack bars twice. I need to figure out something else to do. I used to bring snap peas and brocoli, but that only covers me on one (or two if I spread them out) day.
Ok. I'm going to the store to pick up a glutamine supplement and probably some chicken, cabbage, and maybe something else (yogurt?). So I can introduce carbs in the diet? I thought that they were no good for the bad bacteria but I guess I need to balance that with weight loss.
Wow, at least you got a doctor who acknowledges that these problems are real. I'm on my 4th or 5th one now I think. Most of them just tried to push anti-depressants. So are you saying skip the rotational diet and just eat things? I was thinking about digging into this natural peanut butter but I already ate that for breakfast yesterday. I also have two cans of tuna in the house that I was going to try and wait 4 days to eat but maybe I should just soak em in some olive oil and go for it, with the peanut butter as well.
I would love to get out in the sun but we just got snow last night with more on the way today and maybe even tomorrow I've heard. I did start back up on my probiotics and vitamins (including Vitamin D) today.
Edit: so I was reading the back of my recommend 4-day rotational diet by the food sensitivity lab and it says that the first few days of it I might feel worse because of the withdrawal process. Apparently it could be due to a "temporary excess of toxins while antigens are being withdrawn". Maybe I should stick with it longer and just find higher calorie foods to rotate. I'm also thinking about reintroducing dairy into my diet for the natural probiotics. I'm worried about it though. I tested negative for a casein sensitivity but I don't know about lactose. Maybe I should just try it anyway. I haven't ate dairy in a couple of years now. Maybe it could help.
Are lentils and beans a viable option? Or do those fall in the same category as starches/carbohydrates?
I actually have almost no pain, it's just the mind fog and anxiety that gets to me. Plus it sometimes feels like my throat is very constricted. Whether that is prompted by anxiety or causes the anxiety I don't know. I have had a multitude of tests done but nobody ever knew what they were looking for.
I am sorry to hear that you are struggling as well. My best goes out to you. Maybe I should try reintroducing dairy into my diet. Extra calories and more food options sounds like a good idea. My naturopath didn't mention anything about antibiotics, just gave me probiotics and told me not to eat sugar, the rest I have looked up on my own. How would I go about getting these antibiotics? I've also heard that sometimes they can do more harm than good, but it sounds like they are helping you.
I guess I should probably figure out which type of bacterial overgrowth I have, I just don't know how to do that. I'm sick of doctors but really just want to get better. I'll do some googling and see if there's any way to do that around here. Thank you very much for your help.
I am taking a mental health day today. I have a lot of course work that I need to be doing but I think I'll make the drive to go and visit my parents. I just need a break.
Thank you everybody for more advice. I don't have time to respond individually to everything right now but all I can say is I've been having an awful 3 days. Really, really bad. I lost 3 pounds which puts me at 132 pounds as a 6' male. That is not ok, and I am paying the price right now. I need to gain weight and I don't know how to do that while I am on this rotational diet. I had to eat eggs today even though it's only been 3 days because I didn't have anything in the house that I haven't eaten over the last 3 days. I'm extremely frustrated and more importantly very scared. I just want this to be over. Is there anything I can do? I don't know if I can count on my gut healing before I starve to death. Maybe I need to eat a bunch of red meat and olive oil to gain a few pounds and then try again with the rotational diet. I just can't keep doing this.
You are more help to me than you could ever imagine. today was particularly bad. Very hopeless and scared all day. I'm glad I logged on and saw some more advice from you.
Instead of looking at this as a really bad day, I'm going to look at it as the motivation I need to finally heal myself. I ate my regular breakfast today and that was no good, I felt the mind-fog creep in full force starting in 5 minutes and being fully present 30 minutes after I ate. I did still have a little when I woke up but it got much worse afterwards.
I am going to start the rotational diet today. Here's my question, there won't be that many foods that I have in the rotation, so is it ok to eat a lot of the one food at a time? For example, if I'm having snap peas and broccoli for breakfast, can I eat a lot of them? I am worried about my weight so I eat a lot but I feel like that is probably making it worse instead of better. I started my food journal yesterday, and will be keeping detailed notes. I'm just wondering if I should keep taking the probiotics and vitamins or not. I'm not sure if they're helping or hurting yet. Part of me thinks I should keep it as simple as possible but I also don't want to leave out any possibly allies.
Thank you very much for your example for the rotational diet. There are a few things on there I can't eat. I am deathly allergic to shellfish, I can't have green beans or potatoes (sensitive), and I am going to keep the fruit out of there, but I'm sure I can find something to eat. Is say the difference between trout and salmon a big enough difference to count as a rotation? How about spinach and arugula? I'm just trying to make sure I do this right.
I am about to leave for work so I'm going to pick up some coconut oil on my way there and switch that out for my olive oil. I'll also drop the eggs/hummus/hemp seed just in case I am now sensitive to those (although they didn't show up when I did my food sensitivity test, my experience tells me otherwise).
Alright, I already eliminated coffee and alcohol so I will leave those out. I was using them more to self medicate anyway so hopefully I'll have no need for them when I am finished. No more spicy peppers either, got it. I did find a salt/spice blend that I really liked so I'll pick up more of that instead of more peppers for flavor, should help a little bit. I haven't been exercising much anyway but I'll keep that in mind. Does a 30-minute bike ride count as strenuous exercise? Maybe I'll ride in a low gear and go slower once it finally warms up.
Good to know on the fasting. I'll probably stop it but if I don't get better soon maybe I'll fast for a day or two and then jump right into a rotational diet. I have the spread-sheet covered in an old-fashioned pen and paper mini-notebook. This way I can carry it with me all the time so I can always make notes. I didn't buy those books yet so maybe I won't do the SCD but I'm going to look into it a little more anyway.
I can't thank you enough. You've really given me some hope today, and that counts for a lot. How long did it take for you to start feeling better once you stringently followed your diet? I'm assuming it will take at least 6 months to heal fully, but if I could start seeing signs of improvement before then I would be ecstatic.
A couple more things that I forgot:
-Does anybody have problems with coffee and alcohol? I read that these can make the membranes more permeable for up to a week after. I've stopped them already, but it would be nice on occasion.
-Does anybody have problems with spicy peppers? I read these can be an issue too, I'd hate to give these up
-Does anybody have problems with exercise? I read that can be an issue but I really don't think I could give that one up (I like bicycling and rock climbing)
Would fasting help? Either a juice fast or a complete no-anything fast? I did a 48 hour juice fast a while ago and I felt good (hungry) but I was also juicing a lot of apples which could have stalled the healing process. It seems like figuring out everything that gives me a reaction (which seems to be everything) is going to take years if it's not impossible. I guess it just depends on how long it takes the intestine to heal itself.
I just started my food journal again, so hopefully that will help.
I am also going to buy the Mark Pimental book recommended in this thread and the one I am more excited for is "Breaking the Vicious Cycle: Intestinal Health Through Diet". It sounds like this one that covers the specific carbohydrate diet will be a lot of help to me.
Juliebove - Thank you very much. That is good stuff to know. The only fruit I am eating right now are the dates that are in my snack bars (I'll drop those) and I just bought some bananas, I'll have to look up the sugar content of those. I am also avoiding rice and quinoa as well. I eat snap peas all day long and broccoli too, so I'm good there. I can't have green beans as those are one of the foods that I am sensitive to.
Carolynmay - Thank you very much. I'm sorry to hear that you have struggled with this as well, it's not fun is it? Sometimes I can get so hopeless. I will look into the acupuncture. I've never been good with needles but honestly I'll give anything a shot. Something has to give. I'll do some googling to see if there's a specialist in my area. I will pick up some olive leaf extract when I am next at the store too, like I said, I'll try anything. I did just buy some new Super Earth vitamins, I had read good things about them. You can see what is in them here if you're curious: http://www.luckyvitamin.com/p-29583-bluebonnet-nutrition-super-earth-multinutrient-formula-iron-free-90-tablets (I actually bought them off of Amazon, but Amazon doesn't list what is in them, can't speak to that store that I linked to at all, and forgive me if I'm not allowed to post links to stores). I am definitely concerned that I am not getting enough vitamins and minerals. I'm hoping those vitamins help. I also take 5,000 IUs of vitamin D every morning and I've been considering additional supplementation with magnesium. I'll have to look into zinc as well (my vitamins have 125mgs of magnesium and 15mgs of zinc per day). It is very hard for me to avoid fluorescent lighting, as it is in my home and I rent, but I'll try and spend more time outside and less time inside.
Sometimes I feel like the probiotics are making it worse too, maybe I should try going off those for a week and see if that helps. I have heard that other people weren't able to tolerate them either. I will add the Mark Pimentel book to my shopping cart right now, thank you for the tip, that is a lot of super helpful information. I did an adrenal function reagent test with my naturopath as well. It showed that I have low urinary chloride which apparently means I have, "adrenal hyper-functioning causing an increase in aldosterone secretion from the cortex of the adrenal which leads to an increase in renal resorption of sodium and chloride ions which leads to a decrease in urine chloride ions" (makes sense to me, I'm anxious and stressed all the time). I already add liberal (ok, copious amounts of salt to my food, so I don't think that will be a problem.
GFinDC - Thank you very much. Apparently the gluten sensitive test should have caught my sensitivity even if I wasn't eating gluten (I know the common blood one that medical doctors do doesn't, but I did one that was supposed to catch a sensitivity not just Celiac's). I stopped eating gluten 3 years ago (give or take) and haven't eaten any since (except once on purpose and a couple of times on accident/cross contamination). I don't care what the test said, I don't feel like adding gluten and dairy back into my diet. After not eating gluten for so long it doesn't really appeal to me anymore. Even if I can eat it I won't be surprised if I am gluten-free my whole life. I did have an upper endoscopy and a colonoscopy a couple of years ago but I think they were looking for ulcers and something else so I'm not sure if it would have shown if I had damage to my villi. I am very skeptical of medical doctors now and try to avoid them (all they did was try to shove anti-depressants down my throat, but I knew that wasn't the actual problem), but I guess I'll consider checking for villi damage if I can't do this on my own.
Stri8ed - Good to know, thank you. The way I was diagnosed was through a urine reagent test. I am trying to find the sheet of paper that I have that explains it but I can't seem to find it at the moment (I'm tearing my house apart looking for it). The results of it said something along the lines of, "severe bacterial dysbiosis, "leaky gut syndrome", consider comprehensive stool analysis". I'll find the sheet sooner or later to get more information. From what I remember it was something along the lines of the reagent binding to the toxic metabolites, and a certain amount of drops is required to turn the solution clear. More drops meant more toxic metabolites.
I have been looking for my "trigger foods" for 3 years now and all I ever do is eliminate another food only to get reactions to still be getting reactions and then I attribute it to a new food and eliminate that, I was running out of foods to eat! It is really hard for me to do the rotation diet because my diet is already so limited (no corn, gluten, dairy, fruit, grains). There's not much left for me to rotate. I will try and do that, but I definitely love having my eggs in the morning. I feel so helpless not being able to eat anything. I will definitely look into coconut oil. Doesn't that have a lot of natural sugar though? Olive oil is another one of the things that I love but if it helps me get better I'll do whatever it takes. I know there are a lot of places around that sell coconut oil so I'll pick some up next time I'm at the store. Shoot, it looks like my hemp seed that I love so has a 3:1 ratio of omega-6/omega-3's. So it looks like I should probably ditch that too and switch to fish oil for my omegas. I wonder if there are any food sources of omega-3's that are low in omega-6's. Lot's more research to do.
Sorry for the post that jumps around, I was trying to address everything that was posted but there was a lot of information! I really, really appreciate all of the help everybody. I was starting to worry when there were no responses for a while. Sometimes I get really depressed, anxious, and scared about what's going on in my body and more specifically my head. It's hard to do this and it sounds like a lot of you are in the same boat. I hope we can all help each other and support each other while we go through this. It's no fun, that's for sure. I don't wish this upon anybody, but I am also glad I am not alone. My eternal gratitude goes out to each and every one of you.
Hello everybody. I'll get right to it. I've been having issues with anxiety/depression/mind fog/stomach issues/intestine issues for about 4 years now. At first I thought I was gluten intolerant so I eliminated that (about 2-3 years ago). It helped but not enough. Then I eliminated dairy (about 6 months after), and it helped but not enough. Even after strictly adhering to that diet for at least 2 years (and being worried about cross-contamination to the point of paranoia) my mind fog is still very prevalent. That's the worst symptom by far, although I also have achy joints, anxiety, depression, sensitive eyes (they feel painful sometimes, lots of residue of bright light "auras", water a lot), and probably a half dozen other things wrong. I also am down to 135 pounds from 170 (I'm a 6' male, that is uncomfortably thin in my eyes, and it is causing me problems).
I was tested for pretty much everything. By my regular doctor we did the blood test for Celiac which was negative. I had a colonosocopy that didn't show Celiacs as well. I recently went to a naturopath doctor and we did the (Company Name Removed - They Spammed This Forum and are Banned) food sensitivity test. I thought I would have a lot of severe sensitivities but it came back with very few sensitivities (including no to gluten/gliadin, casein, and other foods that I thought were really awful to me). I had severe allergies to pork and green beans, and mild sensitivities to about 10 other foods.
We ended up doing a reagent test with my urine and found out that I have a severe bacterial dysbiosis, or Leaky Gut Syndrome.
This would seem to explain a lot (all) of my symptoms. My doctor gave me two different types of probiotics to take and told me to avoid sugar. I feel like there's more to it than that though. While I was on the gluten free/dairy free diet my diet consisted almost entirely of fruit (and some eggs and nuts). I've been doing that (avoiding sugar and taking probiotics) for a couple of weeks now and my mind fog is still as bad as ever and is making it very hard to participate and be active in life.
I was doing a little research here and this is what one poster said:
Ever since getting the news from my doctor my diet has consisted of:
A lot (and I mean a lot) of olive oil
Bell peppers and hot peppers
Sugar snap peas
A lot of rice/qunioa (it sounds like this is a big no-no)
Fruit/nut bars (such as Larabars)
Some ground beef (1lb per week)
That's pretty much what I was eating for the last 2/3 years and am still eating now. I was vegetarian at the start but I needed to gain weight any way possible so I added meat back (not that it did anything).
I used to make juice with apples, kale and ginger but I'm scared of all the sugar from the apples. I did make some kale/spinach/ginger/lettuce juice the other day but it wasn't nearly as good. I miss the sweets (that's why I have to have those Larabars, I just crave them). Do I need to get rid of those as well? I shop exclusively at a co-op and buy organic and additive free. If there is one blessing of having all these things wrong with me for years is that I am hyper-conscious of what I eat and of what I am putting into my body.
I cut out dates and apples which were two of my favorite foods. I also read that coffee and alcohol were a big no-no so I cut those out as well (and now I don't have anything to wake me up and help me concentrate, I would also drink to subdue my anxiety, no healthy I know but I was trying to deal with what I had). I only cut out the coffee and alcohol a couple of days ago.
My question is this, how do I get better? I can't keep going like I'm going. I really miss being able to think clearly. I would appreciate any advice or tips from people who have been there or know anything about what's going on. I hate being scared to eat. I haven't gone out to eat in years. I hate eating because I know it is going to make me feel awful and not going to be able to think but at the same time I crave food and need to eat a lot of it (and am still losing weight).
Not to say anything about the effectiveness of wearing a surgical mask, I wouldn't be able to do that at work. Our kitchen is out front in front of customers.
I think the mask would stop you from directly ingesting any gluten. I also imagine there would be contamination on your counters and cooking wear. If you don't mind that, I feel like it would work, but do your own diligence. I'm no expert by any stretch of the imagination.
Wow, that kale sounds really good. I will shy away from tofu, it sounds like a lot of people are recommending against it.
That Egyptian Red Lentil Soup sounds absolutely delicious. I kind of want to go to the store and make some now, I'm hungry.
I added the Vegetarian Cooking Under Pressure to my list but I'm not sure if a pressure cooker is in my budget now, I will check it out however.
Thank you very much again. What a great thing, to share helpful information like this. It's always very refreshing to see positive human interaction.