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
Thanks - I'm now done with week 10 - 2 weeks of antibiotic + 8 of the diet. I've been able to add rice back into my diet without problems. Today I'm eating black beans and they also seem to be fine. Four more weeks to go until in theory, I should be able to eat like a person without food problems!
I know you all get what a big deal it is to be able to eat more foods than you could before.
My hope is that my story will also help give someone else avenues to pursue. I'm impressed that several of you were tested - I don't know if i went to lame doctors or what, but the response I got from doctors over and over again was to just not eat what bothered me. The trouble was that the list kept growing as i became more and more sensitive to foods that had previously been ok. no one even suggested further testing for me.
My best wishes to all of you - keep looking for answers to your issues! No, your digestive issues are absolutely NOT in your head.
I wanted to drop back in and pass on what i've learned in the past year and a half since i started this "what's wrong with me?" journey. I thought I had food allergies/intolerances all my life - diarrhea when I eat has been my companion for 45 years. Digestive enzymes and probiotics have kept me alive and able to eat for the past 20ish years.
The post with most of my story is here: http://www.celiac.com/gluten-free/topic/99411-i-think-youre-my-people/
Nov 2012 I was tested for the celiac gene and antibodies. In a lab error, my blood sample was sent to 2 different labs - Prometheus Labs and Peace Health Labs. Prometheus Labs developed the tests, by the way, so are considered to be the most accurate.
Everything from Prometheus came back negative. The Peace Health labs were all negative, except the anti-tissue transglutaminase came back as a weak positive. I went gluten-free (100% and I am confident about that, right down to shampoo and toothpaste) for 7.5 months. No change in my digestive woes. Not worse, but not better, and my face was still breaking out (i'm in my 50's.)
After 7.5 months, I went to oregon's premier research hospital in Portland and saw 2 gastroenterologists. They said I didn't have celiac disease, that if i had, i'd have begun to see improvements right away. Instead they said I had IBS - which was the first time any doc had told me that.
Months passed and my youngest daughter's (20ish) digestive problems got worse and worse. She saw a naturopath, and in the course of her visits told her doc about me. The ND said it sounded like I had SIBO - Small Intestine Bacterial Overgrowth. I read about it on http://www.siboinfo.org and thought it sounded like me. I went first to my primary care doc to ask for the SIBO test, who sent me to a gastroenterologist, who said i absolutely didn't have SIBO and that i had a gut that "ran fast" just like some people's legs run fast. He also said if i'd had diarrhea for 40 years statistically, it wasn't going to go away. that was helpful, of course. I said "I'm not dead yet" and decided i wasn't done looking for answers. I made an appt with my daughter's ND 2 hours away in another town, was tested for SIBO, and it came back positive.
I took Rifaximin for 2 weeks, then started the low FODMAPS diet to starve any bacteria that remained in my small intestine. I'm on week 6 of the 12 weeks I need to be on that diet. I'm also taking low-dose-naltrexone (good reports on healing the gut with crohn's disease) and several supplements to help heal my intestines.
That treatment all started 8 weeks ago. I've now been able to eat the first two foods that i was ever allergic to. I have bacon every day - that allergy developed when i was 9. I have had 5 oranges now - and i've been allergic to them (i thought) since i was 15.
Everything says that this is working for me. All the evidence is that my gut was damaged by bacteria being in the small intestine, where it isn't supposed to be. Now that the bacteria is gone from there, my intestines are healing, which prevents food particles from leaking through my gut into my body, creating an allergic reaction.
I'm afraid to hope that it's going to be a cure for me, but the evidence says it might. I woke up on day 7 after starting the antibiotic feeling the best I have felt in 40 years. It was amazing.
I'm wanting to share this in case others of you, like me, don't get better on the gluten-free diet. If that's you, or it helped but doesn't eliminate all the problems, i hope you'll explore the possibility you have SIBO. it's a simple breath test to tell you if you have it. You can even order the test yourself, from Commonwealth Labs in Boston, and they will send you the results. For $175 you might get an answer. If a doc tries to check you for bacteria using a stool test, insist on the breath test. You can read on the siboinfo.org site why that is the only test that works to check if you have bacteria in your small intestine.
It is also possible to have BOTH celiac and SIBO.
People with IBS have constipation and/or diarrhea. The SIBO test measures for hydrogen (which is put out by some varieties of bacteria) and for methane (put out by other bacteria.) If you have hydrogen gas-producing bacteria, you have diarrhea. if you have the methane-producing bacteria, you have constipation. Methane has been shown to slow down gut motility by as much as 70%. You can have both types of bacteria.
There is also a suspected link between the endotoxins produced by the bacteria in the gut and Fibromyalgia. I don't have it, but i did have a fair amount of muscle pain - i just thought i was getting achy but i didn't know why. When i took the antibiotic, the muscle pain stopped. i used to go to the chiropractor all the time because my neck would get so tight and hurt - and it's completely stopped. no more aches!
My youngest daughter turned out to be negative on the SIBO, negative on parasites but positive on yeast overgrowth. She's now started treatment for it and we're hopeful for her too.
I have never gotten the help i needed for my gut from conventional medicine. This naturopath, however, has turned into a blessing in my life and now, i'm offering this as hope to the rest of you.
If you aren't getting completely better on your gluten-free diet, look into SIBO, parasites and yeast. I'd recommend the SIBOinfo.org website, the book by Dr. Mark Pimental "A New IBS Solution: Bacteria, the Missing Link" is about SIBO, IBS and why some things improve your gut but don't cure the problem. A good companion book is by Elaine Gottschall, "Breaking the Vicious Cycle."
It was about 20 years ago that doctors discovered that stomach ulcers were caused by h.pylori. Prior to that, docs thought they were because you were a type A person, told you to drink milk and calm down. Then they discovered the h.pylori bacteria and ulcers became treated with an antibiotic. Now, research has shown that many of the people with IBS diagnosis have bacteria in their small intestines, where they shouldn't be, which is called SIBO. Rifaximin is the antibiotic that is best to treat it. It's a hugely expensive AB ($1,025) but my co-pay for the whole 2 weeks was $35.
Hopefully, some of what i've included here will help someone else. Wishing all of you the best!
Please post if you have questions - i'll check back by and try to answer any.
I can't eat many of your list of foods - probably 2/3 of them, including cinnamon, which seems like a weird one. i also can't eat oregano, basil or mint. i went gluten-free for 8 month - also fanatically so - and saw zero difference. I use Enzymedic Digest every time i eat - you can find it online or i buy it in a local co-op type store. i take probiotics and lactase enzymes. Those help me tremendously.
http://www.vitaminshoppe.com/p/enzymedica-digest-90-capsules/kt-1004?sourceType=sc&source=FG&adGroup=40-60&keyword=KT-1004&cm_mmc=Google+Shopping-_-Product+Listing+Ads-_-40-60-_-KT-1004&gclid=CJKc75fg6LwCFUNffgod1kQA1A&gclsrc=aw.ds (I don't buy from them, but this is the brand. There is a weaker version, Digest Basic and a stronger one, Digest Gold)
http://www.digestiveadvantage.com/digestive-advantage-lactose-defense-formula-32-count (I take 1-2 of these daily and they help with any lactose you encounter - i would take a probiotic if i wanted to eat ice cream, but for things like sauces these work for me.)
There was a study done - can't lay my hands on it now - which said that Align is the probiotic that is most helpful to people with IBS.
I recently went to a gastroenterologist who said if a food bothers me don't eat it. that was very helpful, as you can imagine. It made me furious. My daughter had discovered a naturopathic doctor and was seeing her (in another city) for the same kind of problems. I made an appt with her and have just finished testing for a couple of things. Don't have the results yet.
one is for the MTHFR genetic mutations: http://mthfr.net/ This is apparently a common mutation and it has extensive implications in the body. I read through this and thought it described many of my issues and those of my family members. Look carefully at that site, because if you have the genetic mutation it keeps you from being able to "methylate" folate, which affects everything.
The second testing I did was for SIBO. You mention it above, but i'm unclear if you had a stool test done that looked for it or if you did the breath testing. My understanding (i'm not an expert) is that the breath testing is the appropriate way to test for it. Here is an excellent site with a lot of good information: http://www.siboinfo.com/ If you haven't done the breath test, you might try it.
If you're not using digestive enzymes when you eat, that would be a great first step. I don't think they can hurt and they may help.
I have taken Betaine HCL which increases the amount of acid in your stomach in order to break down food. I prefer the digestive enzymes, but last night i read a site about how we tend to need more acid in our stomachs and not less. I wasn't familiar with the site and don't know how accurate it is, but someone passed it on to me. fwiw: http://balancedbites.com/2012/01/why-you-want-more-stomach-acid-not-less.html
I don't think the pills i've mentioned above substitute for figuring out a cause if possible, but in the meantime they may get you out of pain and help you process the food you are eating. I have felt like the digestive enzymes have literally kept me alive for the past 15 years. i have had chronic diarrhea after eating for about 40 years. not a good time.
Good luck to you! Your situation sounds dire and i hope you can get some help. If you can't get help from the gastroenterologists, i wouldn't hesitate to try a naturopathic doctor.
so curious that your antibodies were lower before you went gluten-free. i don't have any idea how to explain that.
re your nasal spray - i developed angioedema from Becanase, an allergy nasal spray. evil stuff for my body. my hands, feet and tongue would swell up horribly in a "rare" side effect to it. i thought it was going to kill me. apparently i was reacting to a preservative in it. Five years of suffering with that off and on until i finally connected the dots and saw it pointed to the Becanase. Stopped using it and haven't had it since - probably 5 years now without symptoms. Glad you were able to go off of yours.
i agree - it sounds like this could be something serious. i don't know how turning blue could be anything other than circulation-related, somehow. Have you done the symptom-checker on Webmd? It's pretty good. It came up with a few possibilities for you, solely on the skin discoloration symptom. the one i wondered about is Thrombocytopenia, bleeding under the skin. That can be caused by drug side effects.
i don't know the answer to your question, but am wondering if you were also checked for antibodies.
the whole thing of testing is very interesting. through an error, my blood sample was sent to Peace Health labs first, then the exact same blood sample was sent to Prometheus. The genetic testing was only through Prometheus. The antibodies were done by both - and the results do not match.
for example, the tTG test through Prometheus was 1.3u/ml, with a reference range of <10.3 U/ml. that would say a pretty clear negative.
the tTG test through Peace Health was 29, with <20 negative, 20-30 weak positive and >30 positive. That's so close to a definite positive, it would say positive.
how to explain it? it was the exact same blood draw sent to both places. I think it just says the testing is not the whole story. i'd go with your gut (little pun) and if you improve on a gluten-free diet, just stick with it.
yes, thanks for clarifying that. i meant there might be other food intolerances, or something else could be going on. i just read a study this week about people who hadn't completely cleared up with a gluten-free diet.
ok, here's the study - they can say it better and more accurately than me trying to tell about it. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3319961/
anxiety seems to be strongly connected to celiac disease . . . wouldn't it be nice if yours went away as well? here's an interesting link, a powerpoint about the links to neurological effects of gluten in a sensitive person: http://www.mybrainhealth.org/files/Gluten-induced_neurological_disease_Feb_8_2011.pdf
kinda nice to know there's a reason for how you feel. the link above includes links to the medical studies behind their information.
oh, btw, if you're not using digestive enzymes, you might try those right away. they won't affect any testing, but will likely help your digestion immediately. I use the Enzymedica Digest Basic (take one every time i eat), the Schiff Digestive Advantage Lactose Therapy (take 1-2 per day - for me, these work better than Lactaid taken with milk) and Accuflora (i take 1/2-1 of these when i have ice cream.)
Between all of these, my food issues got under control in spite of me eating gluten for the past 35 years. All of those supplements I mentioned above are available over the counter and would be harmless with the meds you are taking.
oh it sure sounds like it - getting those tests is a great idea. don't go gluten-free before your blood tests, but then you could start a gluten-free diet.
just so you know - anxiety, depression and insomnia can all be related. if a person has damage to their small intestine, nutrient absorption can be hindered, even if you are taking vitamins. my understanding is that the small intestines produce a lot of our seratonin (feel happy hormones) and if you are lacking in tryptophans because of malabsorption, you might have insomnia. anxiety seems to be part of the package deal.
i had a zillion canker sores when i was young, my youngest daughter is your age and she always had a lot of them. gut problems are what we all of think of as related to celiac disease, but neurological symptoms are common as well. here is a link that's got some good info, including the studies that they used in the presentation:
if you are interested in researching, one way to come up with the actual studies is to google "pubmed+celiac+ whatever symptom you're curious about." PubMed is the publisher of all the medical studies. They can be hard to read if you don't have a science background, but there is a lot of good info out there. For example, if you want to research to see if the depression is linked, google "pubmed+celiac+depression."
I'll just give you the quick version of my daughter's story. She had canker sores and bad teeth growing up - lots of cavities. She had trouble following more than one direction at a time and even now can't remember childhood events. She's had a constant low level of anxiety since maybe 14 or 15. At about 17 she started developing diarrhea from various foods. She tested allergic to a number of foods so avoided those (while eating in the university food service and being vegetarian and picky as well.) Over the next 2 years she kept having reactions to more and more foods: peanuts, almonds, tomatoes, peppers, soy, strawberries, raspberries, kiwi . . . the list kept growing. the school doc prescribed an EpiPen for her after the kiwi reaction - it just took minutes for her mouth to begin swelling. Last fall she had a major relationship upset and she started posting conspiracy theories on facebook - like 20 posts a day. I thought she was developing schizophrenia, because it runs in my family.
A friend recommended I talk to a celiac specialist - I did, and she said that she has seen people with untreated celiac disease "look" like they have schizophrenia and she has seen it resolve upon a gluten-free diet. My daughter met with her and has now been gluten-free for about 2.5 months. Her mental state immediately improved - seriously - after 4 days I could see the difference. I wouldn't say she's 100% mentally, but her stomach issues have mostly resolved and her mental condition has definitely improved.
She chose not to get tested, but if you want the univ cafeteria to provide you with gluten-free food under the ADA, you will need a diagnosis. She just went gluten-free and never has looked back.
Consider if you think you will need an official diagnosis. If you might, get tested. If you can't see any reason for needing the official diagnosis (and there are some mistakes made with testing), just give yourself a gluten-free trial and see how you do. If your problems resolve, you've got your answer. if they get a lot better but not completely resolve, then you can explore further.
From your description, life is pretty much hell for you right now and you've got nothing left to lose. I will add that I almost would've written the exact same post as yours when i was in college too. I had to get up from the table every time i ate to head for the dorm bathroom - which is a special kind of fun, as you know. i only just got diagnosed in november - so even though this is awful, at least you have a possibility of figuring out what's wrong now while you are young and preventing any damage to your body from auto-immune diseases in the future.
regarding the anxiety issue - apparently because of the damage to our small intestines, many people with celiac are deficient in tryptophans. this affects one's ability to make serotonin and melatonin. i took 5HTP for a couple of years and it helped me SO much with sleeping at night (put me out cold and i slept all night) and anxiety. melatonin helps you sleep at night. serotonin is your feel happy hormone - the opposite of anxiety, and tryptophans are used by the body to make serotonin and melatonin.
when i started taking it i thought i'd found a miracle supplement. i handed out samples to several of my friends and not one of them found it helped them sleep. i couldn't believe it. But my son took it and it helped him sleep and it also reduced his anxiety attacks. now it turns out that both of us have celiac disease.
it seemed like it stopped working on me a few months ago, so i stopped taking it. took it a couple of weeks ago and it didn't do a thing. so i guess i'm not deficient in it anymore.
think of it like making bread - if you haven't got flour (of some sort!) you can't make bread. in your body, if you don't have enough tryptophans you can't make serotonin or melatonin. I read lots of info about it and then asked my chiropractor/naturopath about it. she sold me a bottle and - well i had a great couple years of sleep and less anxiety. i buy the one made by Thorne Research Labs, figuring that made by the research lab might make it more reliable since supplements aren't regulated. You can get it online from Pure Formulas - or other brands you can buy at your local drugstore.
i would say i have very few problems with eating gluten foods - i'm only 2 months gluten-free, and i did get tested but the tests were mixed and not clear-cut that i have celiac disease. some things were high enough to register, some were not and i didn't get the biopsy done.
here's what keeps me gluten-free, however: my mother's side of the family (i'm pretty sure my mom had celiac) has auto-immune diseases galore. i don't want them. my grandmother and 2 of my 3 uncles had diabetes and none of them were overweight and all lived an active life (farming & construction work). i think 7 of my 15 cousins have diabetes. i have a cat that's been diabetic for 2 years - and i don't want it. my mom had and one cousin has ulcerative colitis; my grandma had crohn's disease.
i've had stomach problems since i was a teenager and i have enough symptoms that i'm positive i do have it. so even though my stomach was only upset perhaps once every 3-4 weeks while i was eating gluten, i'm trying to be 100% gluten-free because i don't want those auto-immune diseases that seem to come with the antibodies from celiac disease.
it's not fun avoiding gluten, but it's more fun than the prospect of developing those diseases. maybe you don't have a family history like that so it's not as scary of a prospect, but it's sure working for me. i didn't actually know of all of my cousins' problems until i went gluten-free and opened a conversation up with a bunch of them on facebook.
i'd just encourage you to look at the big view - as a college student i'm assuming you're 20ish and you'd like to live another 60-70 years and be healthy as possible for those years.
hang in there! you'll figure out how to manage things. having food with you so you don't feel compelled to eat others' food is a great idea. i wouldn't think twice about saying "i'm allergic to gluten" either. i had lots of food allergies by the time i was in college and people were great about understanding and not pressuring me. your real friends will help you out and whatever the rest think doesn't matter.
For 2 months now, I've been reading and commenting on this board, and i have to say how glad i am to have found you all. It's like i've found people who are "my" people!
My first food allergy was at 2 weeks, when my pediatrician had my mom giving me orange juice, and i vomited it across the room. That was the start of the food fun, i suppose. I've had terrible teeth and saw a few posts in the past week about others with that problem, so i looked online and found that celiac is the underlying cause of it! I've been allergic to citric acid since i was about 15 - but never met another person who was. And here there are a bunch of you that have it in your sig lines! Citric acid is evil stuff!
At about that same age, I became lactose intolerant, too. i've been taking digestive enzymes since i found them about 15-20 years ago and no doc could ever explain to me why i needed them to be able to eat - but here there are many people who use them. i've had all these food allergies/intolerances and other than my mom, never known anyone else who also had so many. When I order in a restaurant I have to ask "does this have cinnamon/oregano/basil/thyme/pork/citrus/blah blah in it?" Now I add gluten on to the list. I had the worst acne of almost anyone i knew - and a lot of people here also have skin issues.
I just read someone's post that said they were in their 50's and the first sign that they'd gotten glutened was their face the next morning. YES! I get that face too!
so i know this is a bizarre post but i just had to say thanks for being here. I'm learning so much by reading everyone's posts - so many of my "odd" symptoms seem to be connected to celiac disease. I wouldn't wish this on anyone, but at the same time, am thankful for me not being the only person with all of this stuff. I think people here understand - and after feeling like the weirdest person around, I'm glad for some company living in Food Intolerance Land.
my 26 year old daughter has had boils in her groin, mostly under the underwear elastic line in her leg creases, since she was 3 years old. i took her to several docs for it and no one had a diagnosis. she had terrible acne, incuding cystic acne on her cheeks, neck and back, throughout her teenage years. i had the same thing - absolutely terrible acne for probably 10-15 years and even now still break out sometimes. i had boils in the creases of my legs as well, although not the level of issue with boils like she has and i haven't had them now for a long time.
i got diagnosed in november and all 3 of my kids went gluten-free. for the first time, her boils are healing. it took about 6 weeks to begin to fade, but they finally seem better. they have been a nightmare - she's seen dermatologists and even took Accutane for 4 months. talk about a terrible drug and it didn't do a thing for them.
i wonder if DH has more forms than just the one symmetrical itchy-blister appearance and researchers haven't connected all the dots yet on it.
there is an RN here who specializes in celiac disease that we've consulted with - she told me that it was very likely DH that was causing my daughter's boils. the RN was diagnosed through DH herself, and she's been completely gluten-free for 6 years. she said it takes a long time for the antibodies to leave the skin. after 6 years, she still has some itching on her legs - and she's fanatic about no gluten. she says she gets sick for 10 weeks from a literal crumb of gluten.
i think docs simply don't know much about celiac around here. i've been to many and mentioned my stomach problems to every single one and not one ever suggested celiac disease. my mom had ulcerative colitis, and after researching celiac disease, i'm certain she had it as well. i would trust my own experience and research over the doctors, unfortunately.
anyway, all of that would support your thoughts and experience. you might want to just give it a little more time before trying a powerful drug - if you can stand it, that is.
is it Reynaud's Syndrome, where your extremities react to cold and turn blue? are you in a cold or warm environment, or does it happen in both?
blue skin can mean lack of blood circulation, which is one reason why it connects to the cold. your blood goes back to the body core to keep your organs going. have you had your heart or circulation checked? i think i would make sure that was ok, if it was me.