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'm in kind of the same boat---I was diagnosed in September '08; my antibodies were checked in January and were down to 39, and when they were just checked again at the end of June they were down a bit to 31, but still not "normal." It's really discouraging---I am really really careful about what I eat, so I'm hoping that it's just taking time and will keep going down to the normal range. I'm going on 11 months now since diagnosis---the whole process is much slower than I had thought it would be.
My house is not gluten free (my husband and 5-year old son aren't gluten free), but I try to be really careful--I use a different toaster, different colander, different pots for cooking pasta, etc., different cutting board. And I never put my food directly on the counter and am pretty compulsive about wiping the counters and washing my hands well after I make a sandwich for my son, etc. We do keep our dog food in the kitchen pantry---do you think that could be a problem? I usually dont' feed the dog, and if I do I wash my hands really well after I feed her.
I'm still having a fair amount of GI symptoms as well, which I guess may just be indicating that my intestines aren't well healed yet. When I was diagnosed, my doctor said that I had near total villous atrophy. On the plus side, I haven't had a migraine since I've been diagnosed, and my anxiety levels have been much lower in general......
...but not so low that I don't worry about ending up with refractory celiac, or thinking that the longer it takes my intestines to heal the more at risk I am for cancer, etc.....anyone else have the same worries?
I thought I'd share my timeline so far as well......
I am a 39-year-old female, and I started having GI symptoms about 5 years ago after the birth of my son. I also have a history of anxiety/panic attacks and migraines, as well as another autoimmune disorder (ITP--a chronic low blood platelet count), which I had for about 12 years. Just when that seemed to get better, I began having all of the GI symptoms.
I was diagnosed in September '08 by a positive blood test and positive endoscopy---according to the pathologist, the damage to my intestines was pretty severe (I think it was near total villous atrophy). I have been strictly gluten free since then, and my antibodies have come down, but they are still not in the normal range, which is very discouraging. I still am having GI symptoms frequently too, although I guess it makes sense that if the autoimmune reaction is still taking place, it's not surprising that I would have symptoms. I haven't gained any weight (I'm slightly underweight), and my bloodwork showed a vitamin D deficiency. A bone scan showed that I have mild osteopenia, and I still show some signs of malabsorption (fat in the stool---sorry if that is tmi!). Ugh---I really am so careful about my diet and food prep etc. and don't think I am getting cross contaminated.
The good news is that I haven't had one single migraine since I went gluten free, and my anxiety level definitely seems lower.
But I'm just feeling discouraged that things seem to be healing so slowly. And (being the anxious person I am!), I worry that the longer the healing takes, the more risk there is of things like malignancies, etc. I know some people who felt 100% better within weeks of going gluten free, and that's just not been my experience.
I'd love to hear any of your experiences---good luck (and quick healing!) to all of you.
I'm sorry to hear about your daughter. I am certainly not an expert at all, but I just wanted to share with you that I have now been strictly gluten free since the beginning of September (after being diagnosed by blood test and endoscopy), and my antibodies are still elevated--I just got them tested a few weeks ago, and they are lower than when I was diagnosed but still not in the normal range. It's discouraging, but my doctor said that it can take some people up to a couple of years before the intestines heal and antibody levels get back to normal. Do you know what your daughter's level was both times she's been tested? Has it come down at all?
With regard to the dairy, I'm pretty sure that it wouldn't be causing the antibodies to stay elevated, even if your daughter has a lactose intolerance or a casein allergy, or just can't digest dairy because of the damage to her intestines. For what it's worth, the last time I saw my doctor, I asked her specifically whether there was anything else besides gluten that would trigger the autoimmune reaction (and therefore elevated antibodies), and she said no. But I'm obviously not a doctor, so I'm not 100% sure.
Has your daughter had a second endoscopy since her diagnosis? I'm anxious to get one done just to assess the degree of healing that (I hope) has taken place.
Sorry if this wasn't too helpful, but I do sympathize and know how frustrating this can be--and I can only imagine it's that much more so when it's your child.
THanks so much for thre reply--I hope your daughter is feeling better. I've been on them for about 5 days now, and I seem to be feeling a little better, but it may just be wishful thinking.....we'll see! Thanks also for the info about the enzymes that turned out to contain gluten---it's hidden in so many places!
I was diagnosed through positive blood test and positive biopsy 9 months ago. I'm still not where I want to be in terms of my symptoms even after having been gluten free for 9 months, so my GI just prescribed Creon (digestive enzymes). I read that they are normally prescribed for people with pancreatitis or cystic fibrosis, and I'm wondering if anyone else with celiac has been prescribed Creon, whether you have had any significant side effects, what dosage you're on, etc.
I'm always a little skittish about starting a new medication and worry about side effects....any personal experiences would be very reassuring. I read that Creon is derived from pigs' pancreases, and that there is a "theoretical" risk of viral transmission to humans.........particularly with the whole swine flu thing, that just makes me a little nervous (I'm sure I'm overthinking it....)
I hope you are all doing well. Jenn, welcome to the thread, and I hope you begin to feel better--in my short time here, I've gotten really great advice and support.
I had an experience over the weekend that sort of re-committed me to SCD and reminded me that we really need to listen to our bodies. I went to my GI on Friday for a check-in, and she took some blood to check my antibody level (I had it checked one other time since my diagnosis last fall--it was lower, but still not "normal"). I won't find out the results for a week or so. I told her that I was still having symptoms and that I'd been trying SCD for about a month or so.
I think she's a very good doctor, and is kind of a specialist in celiac, but I left feeling like even the "experts" don't have all the answers. She said that she knew of some people who have had good a good response on SCD but that it was very restrictive and took a big commitment to follow, and that people tend to lose weight on it and that she didn't want me to lose any more weight. She said that I probably just needed to give the gluten-free diet more time given my level of damage (almost total villous atrophy according to the endoscopy last fall). She also said that as long as I wasn't ingesting gluten, even if I did have some symptoms, it wouldn't be doing any further damage to the intestines.
So, I (stupidly) decided to take her advice and try some other foods this weekend and see how it went. In a word: BADLY. I know I did it in a stupid way, by introducing way too much too soon, but I guess I was just using the fact that a medical professional told me I could eat more things as an excuse to do so.....I had ice cream on Friday, Bob's gluten-free hot cereal (with brown sugar!) on Saturday and Sunday mornings, fresh mozzarella and roasted potatoes on Saturday night....Needless to say, by yesterday morning I felt horrible, and am now back to the intro diet to try to settle things down.
I'm convinced more than ever that SCD is what my body needs right now, but it was just discouraging to me that it just seems like there are no clear-cut answers, and that even the doctors don't always point us in the right direction. She did prescribe me some digestive enzymes (not sure they are SCD-legal, though---maybe I should just keep taking the ones from GI Pro Health?).
Sorry to write so much---just wanted to let you know that I'm very grateful for this thread....otherwise, I think I wouldn't have had the motivation to stick to this.
Michelle, I noticed that you eat the goat yogurt--I'm thinking of trying this since I had a bad reaction to the SCD yogurt I made with regular milk. Have you found it easier to digest?
Pele, I just wanted to let you know that right now I'm sipping a cup of mint tea sweetened with honey, and you're right--it's really good! So much so that I actually think I might be able to wait until a normal lunch hour to eat my lunch (my work friends joke that i'm often eating lunch while they're all still eating breakfast!). So thanks for the suggestion!
Thanks so much, everyone. I will definitely stay clear of the Welch's from now on. I think I'll stick with just the cooked pineapple for the rest of the week and then maybe try introducing a new fruit next week and see what happens.
Thanks also for the suggestion about coconut oil---I just bought some today and will give it a try. It looks different than I imagined....looks actually like more of a solid than a liquid oil....is that right?
I'm going to my gastro on Friday and will mention that I've been following SCD and think I'm noticing some improvement on it.....I've never talked about it with her before and hope that she doesn't "pooh pooh" it (not that it would make me stop following it, but it would be nice to have her support).
So I think you were all may have been right about the fruit---today is my second day with no fruit or juice except for a little bit of cooked pineapple (just baked with a little water for about 45 minutes). So far I have not had nearly as much bloating and gas (I hope it's not just in my head.....I really want to figure this all out!). I've just had scrambled eggs for breakfast, some meat and cooked vegetables for lunch, followed by a little pineapple, some chicken soup when I'm feeling hungry in the afternoon, and then some version of meat/fish/cooked veggies for dinner. Not very exciting, but I think maybe I'm onto something.....I definitely look forward to being able to expand my diet, but I'm willing to wait if it seems like things are progressing.
It's interesting too, because at the very beginning I had trouble with the gelatin I made with the Welch's grape juice, and I thought it was the gelatin, but now I'm thinking that it probably was the grape juice that was giving me trouble.
Another thing I have started doing is cooking my scrambled eggs with a little olive oil in the pan---I was using PAM, but I noticed the other day that there is soy lecithin in it......what do you all use for that kind of thing?
Thanks for all your comments. Today was a fruit-free day so far (including no grape juice or cider), and it's hard to tell if it's helping, but we'll see.....it wasn't as hard as I thought--I think I'm a very habitual person, and I have gotten very used to my smoothie after dinner (just like I used to be addicted to my bowl of coffee ice cream!)---it's kind of interesting, actually, to realize how so much of the eating I did before I was diagnosed was so habitual and not based on anything physiological.
I think I also have to get away from feeling like I should feel 100% now just because I'm on this diet---it sounds like some of you who have been on it for a long time (year or more) still have some digestive issues from time to time. I guess it really is a process.....But how do you know the difference between feeling not 100% because it takes time, or because you ate a food that you aren't ready for?
Ali and Mia,
Thank you so much for your responses--it's very helpful. My doctor actually tested me for fructose intolerance a couple of months ago, and she said I was negative, but I'm sure that you can still react to too much fructose when healing is in its early stages.
I think starting tomorrow I will try to cut out the fruit for a few days and see what happens....I just feel so limited at this point and fruit is kind of my "treat"----without the fruit, I'm down to eggs, meat, fish, and vegetables. And I just feel so hungry a lot of the day between my meals, and I feel like how much meat, eggs, and vegetables can a person eat?? Maybe I'll make some chicken soup and start having that between meals instead of the fruit to tide me over.....
And Mia, I did just start taking magnesium along with the calcium--thanks for that reminder.
Thank you so much--this is very reassuring. I agree that it probably just takes some faith in the diet and patience (which I'm not very good at!). And you're right, it takes a while to actually make yourself realize that just because a food is "legal" we might not all be able to digest it.
And I know what you mean about thinking that the diet should work and giving it time---the other day I was tempted to "cheat" (not with gluten, but with non-SCD food) since I was feeling discouraged, but I didn't, and I'm really glad I didn't......when I really thought about it, it just didn't make sense to me to start eating something that I know is harder to digest because I wasn't feeling better on a diet of things that are easier to digest.
So....I will just try to bide my time and trust in the small improvements....I think you're right that sometimes you're so focused on the end result that you don't see little improvements along the way.
I hope you are all doing well---it's been a while since I've been on.
So now I'm probably into about week 6 of the diet.....still haven't tried the yogurt again since the first time, but I think I will try to make the goat's milk yogurt as soon as I get the non-dairy starter sent to me (keeps getting back-ordered from GI Pro Health....any other sources for it that you know of?).
I think I'm seeing small improvements, but I'm wondering how long it's going to really take......I had to totally give up on the peanut butter (even though I LOVE it) because that seemed to bother me, and I've had to stop eating anything with almond flour because it really doesn't seem to agree with me. I guess I must be having a nut problem.....
The other thing that is bothering me is that I'm wondering if I'm eating too much fruit---I'm having Welch's grape juice in the morning, with lunch I have some baked apples and pears (baked with apple cider and cinnamon), and then after dinner I make a smoothie with banana, frozen peaches, frozen blueberries, and apple cider. After I eat any of those things I tend to get a very bloated, full feeling and end up belching more (sorry if that's tmi). But with such a limited diet as it is, I can't imagine cutting out the fruit.......any suggestions?
The only other thing I'm ingesting is my supplements (acidophilous from GI Pro Health, digestive enzymes from GI Pron Health, Frieda multivitamin, Frieda calcium, magnesium) and my daily 20 mg. of generic prozac (which I was told may contain trace amounts of corn startch).
I really want to stay on the diet and want it to work, but I would just like to know at what point you have to decide that the diet just isn't working?
thanks for any feedback! I'm going to my dr. (at the Celiac Disease Center at Columbia U.) next week and hopefully can get a blood test to see if my antibodies are going down. 9 months gluten free since diagnosis now.....hoping things begin to really improve!
Thanks so much for the support---I guess I'm going to back off on the peanut butter for a while (which is hard...I LOVE it), and probably cut out the gelatin too for now. Good luck with your healing too!
Thank you so much---it's reassuring to be reminded that I'm still very early in the healing process. I do really like all of the food on the diet, and I love to cook, so I'm not really having any trouble sticking to the diet (although I've never made so many dirty dishes in my life!)....just really eager to see some positive results.
I will look into the supplements you mention---there's so much to learn!!