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
Well, after a host of frustrating appointments with doctors of a general practice, I went to a holistic chiropractor last night, and let me tell you, he was absolutely wonderful, and I think that a doctor of his ilk--the naturopathic, holistic type of doctor, would be really able to help a lot of you out on this board. He did something with me called Contact Reflex Analysis, which consisted of him pulling out a briefcase of pure extracts in tiny vials. He told me to raise my left arm up to the side, and put random vials in my hands and pushed on my arm with each one. If I was able to meet his resistance, I was not allergic to that type of food, but if I could not, I was allergic. It's a gold standard of food allergies, and surprisingly enough, I was not allergic to wheat, corn or oats, but sugar, egg whites, soy and milk. All of my symptoms were mimicking celiac disease, but this doctor was not convinced that it was celiac disease, but a severe case of other food allergies. I am not sure, but for those of you who are uncertain as to if you really have celiac disease or not, I would definitely go see a doctor specializing in the naturopathic/holistic field. The raised IgA antibodies in my blood were due to an overwhelming content of yeast in my body, and it was attacking my other functions, such as the pulsating heart, lack of energy (due to an adrenal dysfunction), stomach pain, diarrhea, joint pain and intolerance to cold. He then used a type of acupuncture method (but without the needles), which consisted of a q-tip kind of machine, and was painless.. he touched it on various parts of my hands and fingers and my toes and feet, and that showed on the computer the parts of my body that were most at risk for developing problems--my small intestines and my lungs.
Anyway, he prescribed me dietary supplements to take, which are Zymex, Multizyme, Spanish Black Radish, Drenamin, and Lact-Enz. He wants me to take those 3 times a day, except for the Spanish Black Radish, which is only twice a day, while following a sugarless, egg whiteless, milkless and soyless diet for about a week, and wants to see how I feel on Wednesday. He told me something very valuable--that the body is capable of healing itself, and eventually, I will be able to eat those forbidden foods again, as soon as my body is fully healed, and I am taking these dietary supplements. That was such good news to hear, and I couldn't stop smiling after I heard that. I am so happy right now, and I would highly suggest that you go to a doctor of his sort, if you are frustrated with the primary care doctors, and are unsure as to if you really do have celiac disease or not.
Anyway, that was my story...hope it helped some of you to some degree! I will talk to you all later..
--Julie in Ma.
Yes, I can relate to the extreme exhaustion felt--and I was watching television last night with my mom, and saw a commercial for Altovis, which is supposed to treat extreme fatigue. It said that it didn't have any side effects, but the hope is that it doesn't contain any wheat proteins/stabilizers/starches/fillers. Have any of you heard of that? I'm going to a naturopathic doctor tonight, so he should be able to help me out in terms of vitamin supplements--I would suggest to a lot of people on this board to go down that route. Primary care physicians, with all their good intentions, just do not know what to do in cases of celiac disease, and I was even told yesterday by my primary care doctor that my symptoms, while they resemble celiac disease, are a mystery to him, because he doesn't know what to do from this point forward.
I have heard also that celiac disease is genetic, and I trust that, but I was diagnosed last summer at 22, and to my knowledge, no one in my family even has it. Looking back though, I was a wheat/oats/barley kind of pig--I used to eat 4-5 slices of bread, after I came home from high school, and made a huge portion of oatmeal, and in college, I craved the grains in beer, and couldn't stop at just 1 or 2 cans.. I overdid it a lot and had a case of alcohol poisoning when I was 18, and nearly died, and then, I ate pizza, and pasta and cakes/cookies as if it was going out of style. I also had mono when I was 20, and I never fully rested from that, because of course, I wanted to get all A's in my classes, and the mono wasn't going to slow me down..hehe. Do you think that maybe all of that craving for gluten predisposed my body to developing celiac disease? Maybe it just started to reject digesting it anymore? By the way, I am not Irish, but am a quarter Northern Italian, and I have heard that people of that descent are at risk as well.
Speaking of prednisone, when I was having mono, the doctor put me on that, but it made me itch everywhere, and I developed a rash on my chest and neck--any similar reactions if you were put on that? It might contain a wheat protein that wasn't aware of, but at the time, I wasn't exactly looking for that, because celiac disease wasn't even heard of to me then.
Anyway, those are just my experiences and thoughts--take care everyone, and I wish you all the best of luck!
If you don't mind telling me, what supplement are you taking to help? I have heard that B-12, B-6, calcium supplements and keffir have proven to be very beneficial, and I don't mind going down the vitamin supplement path--it seems necessary now, to ward of the still-existing symptoms, despite being on a gluten-free diet now for about 8 months. I do feel a lot better, but still have the joint pain, dizziness and even the stomach upset from time to time. Thank you--take care!
I had thought about what you had said before about the whole male doctor/female patient situation, and how a male doctor is more apt to say to a female patient that she is depressed, rather than attempting to dig deeper than that and find the root of the problem. I think you are right--and this other female doctor at that office (and yes, she was kind of mannish and very cold and clinical) seemed to think my problems were psychological, and I told her that it is human to feel emotion, and I'd rather express my frustrations with all of these doctors that cannot help me than just hold it in and say that I am satisfied with a ridiculous fake grin on my face. Yes, I think to a point, women are expected to swallow their complaints and learn how to deal with the "stress". I flat out told this doctor that I am not giving up and that I am going to get to the bottom of this and will not be brushed aside. I agree with you that you have to be an advocate for your own health, and as a shy person, this has really catapulted me to speaking up for myself..lol. I am going to a naturopathic chiropractor tomorrow at 5:00, who is actually my cousin, and I'd prefer going to him, because I trust him and maybe he'd be able to help me find a naturopathic doctor who can steer me in the right direction, with none of this "it's all psychological" crap. It is very scary what you went through, and I can imagine your fear when you thought that what you were going through could have been related to colon cancer, as your father had it--all sorts of thoughts must have been flashing through your mind then, but I am glad that through the colonoscopy, this doctor that you went to could finally help you and relieve your worries about colon cancer, even if he did diagnose you with celiac disease. I know that both conditions are horrible, but at least you can more or less control your celiac disease symptoms with this gluten free diet--how are you feeling, by the way?
Jhmom, did you ever feel like a lab rat when you were put through that whole battery of tests? It's almost as if you're the human lab experiment, because celiac disease is "so rare", or at least that's what they say, and would like you to believe. I am glad though that you stopped going down that route--it's almost a dead end, and you know your own body and what it feels on a day-to-day basis. The Enterolab results seem to solidify a lot of questions as to one's symptoms. IBS seems to be a popular misdiagnosis and it seems that celiac disease masquerades as that quite often, but then, what I want to tell these doctors is that "would I be feeling this bad if I ate all foods, or just gluten-containing foods?" Doctors don't seem to see that fine line between IBS and celiac disease, it seems.
Jessica, I am proud of you that you told your doctor off--it seems as if that was a long time coming, and I wish I could have said the same thing to mine today. I smiled when I saw what you had said.. Maybe your words will shock some sense into this doctor, or at least we can hope.
Tarnalberry, I have never thought of the possibility of the testosterone levels before, but it does make some sense--I am on yasmin-28, the birth control pill, and that could affect the testosterone levels in my blood, and I did have my thyroid checked, but it came out negative. Thanks for giving me another avenue to possibly check out soon. Is the testosterone issue something that you experienced in your condition? i'd be interested to know.
Ok, well, it is off to bed I go for the night--feeling very sleepy Take care everyone, and good luck to you all, especially on the night of luck--St. Patrick's Day..hehe..and by the way, Happy St. Patrick's Day to everyone!
--Julie in Ma.
Thank you so much for your time and support in your response. You and every one else on this board are truly god-sends--you have been more help to me than any of these doctors, and make me feel a lot better in the knowledge that I am not alone. I assume you have gone through the exact same thing as I have gone through, judging from your response. If only some of these doctors could go on to this site and check out all the posts, and then they will be quick to retract the charge of being depressed. I know, as I am sure you know, that this is a lot more complicated and hard to pin-point, and I can't believe that you were put on Zoloft for your celiac disease symptoms. I was put on Paxil in August, because my primary care doctor seemed to think that my frustrations were rooted in depression.
I have heard that the base-line Enterolab is about $99.00, and I would be more than happy to dish that amount of money out to pay for that, and see what that could do...at this point, I'd be willing to try anything that would be of slight help, if not more. I think that that would put my mind at ease a great deal. I have been on a gluten free diet now for about 8 months now, and I am seeing improvements, but do have occasional slip ups, because of the lack of food labeling. I am 23, but feel as if I am a little 99-year-old lady with all of these issues..lol. I'm currently looking into a naturopathic doctor now who specializes in celiac disease and also a nutritionist, and my mom and dad have been very supportive and understanding throughout this whole thing, as you and everyone else on this board has been. I am sorry about my rant before--I just got so angry, and felt that I had no where else to turn, and posting on this board really seems to help me, as i said before.
With that said, I hope that you feel better too, and continue to enjoy good health--thanks again for your response, and I hope that you are doing well!
--Julie in Ma.
It's me again.. how are you all doing? I just came back from my visit with my primary care doctor, because that is what the specialist in celiac disease in Boston told me to do, and yeah, he was a lot of help...not really. He said to me: "Are you sure you're not depressed?" This is the second time I have heard that at that doctor's office, and it's like no, I am not depressed..just pissed off and frustrated that nothing can be done for my celiac disease symptoms, such as the joint pain, nausea, stomach problems, bloating, fatigue and itching. He ordered a battery of blood tests, and since I did not know I was going to have blood drawn today, I was not prepared, fluid-wise. Needless to say, my arm is in a lot of pain right now, and the nurse did not get the blood..I almost fainted then and got nauseous. Anyway, it just goes to show you that primary care doctors do not know a thing about celiac disease or what to do--you come to them asking for help--about where to go from a certain point, and all they can do is throw up their hands and say "I don't know" or suggest an emotional psychological problem. Yeah, ok--I didn't just imagine that I lost 20 lbs. in a month, and all these other symptoms. The first thing I did when I came home was just cry and yell out of sheer frustration--this bouncing around from doctor to doctor and the patronizing attitudes of: "it's ok, dear.. you're probably just stressed" is really getting to me. I'd like to go to a good doctor for once who can actually help me--this is absolutely ridiculous. I heard about the drug Altovis, or something along that line, for the lack of energy experienced--have any of you heard of it, or have had experiences with energy depletion and fatigue? I just had to vent--I'm not a happy patient right now, and these "all knowing" doctors can just shut their mouths, because if I hear one more time that I am depressed, I am going to scream! Have any of you been given that line before when you've been trying to tell primary care doctors your problems? It's almost as if I shouldn't have bothered with him--I had a feeling that he wouldn't be able to help me. Anyway, I hope all of you are feeling well, and I am sorry about this rant--I just had to get it off my chest..take care! :-)
--Julie in Ma.
Mariann, I have thought that I possibly might have another food allergy, and it is interesting that you brought that up. Every morning, when I have milk in my cereal, I experience diarrhea, but then, that is the same with lactaid milk, and soymilk, so maybe I am just milk intolerant period..hehe, who knows. I don't think I am allergic to casein though, but I did discuss the possibility of the Enterolab with my mom, as she has been doing a lot to help me, and we both thought it was a great idea to look into.
Zippyten, thank you for your reply as well. I appreciate all the time you took in your response, and yes, it is frustrating that so called "experts" in gastroenterology/celiac disease keep on tossing me around in the game of "what-ifs"...I am sure you can very well relate to that. This doctor I went to is actually from Ireland and I have heard that the disease is quite prevalent there, which is why I am surprised that he made such a clear separation between celiac disease and other autoimmune symptoms...it just boggles the mind how an expert can just overlook the obvious. I suppose that he thinks it is rare that I can even have celiac disease, since it is thought of as almost unheard of in the United States, but that is where he is misinformed, from what I have read. I wish you luck in your biopsy, and hope and pray that you do not have any peptic ulcers in your system. Maybe you would test negative on one biopsy if you have not ingested gluten for awhile, being on the gluten free diet for a significant amount of time--the doctors tend to overlook that simple fact, but nonetheless, it's true. Anyway, I hope that you can feel better soon! :-)
I 100% agree with you--whenever I am feeling a little down about things and how I am feeling, I go on this site and read some of the posts. I know that celiac disease, while it is a huge life hassle, isn't exactly a death sentence, and the people on here really help to drum that into my head, which I so appreciate. I hope that you are feeling well, and continue to feel well for a very long time!
Thank you, Mariann, for your reply. Yes, I should look into this Enterolab situation, because I have a feeling that may be helpful. I don't understand the egotism of some doctors, and it seems as if you have been experiencing that same exact thing. It is not a horrible thing to say to a patient that: "ok, I was wrong, and tests indicate that you do have celiac disease", if even a small amount of the IgA/IgG is found. I do feel better living life gluten-free, but still do have some of the other symptoms, so maybe slight traces of gluten are creeping into my diet without my knowledge. Anyway, thank you very much for taking the time to reply to me, and I wish you a lot of luck and health!
-Julie in Ma.
Hi, my name is Julie and I am a 23-year-old with suspected celiac disease. More about my experience in Boston, Ma. with the gastroenterologist can be found in the doctor's section of this board. Wow, I can really relate to the post about feeling down and disappointed. Going out to eat at restaurants are not exactly exciting--I can only eat salads most of the time, and even then, I have to be careful of the wheat stabilizers in the dressings, and then, I usually am so hungry that as soon as I come home, I pig out on my stash of gluten-free foods. It's annoying, because everything that I see in the supermarket that appears safe has wheat fillers, protein, stabilizers, or starches, but then I tell myself that those types of things are poison to my system anyway, and why would I want to ingest poison? It's a psychological game I play with myself, but still, I do very much crave gluten a lot of the time, although it has significantly faded since going on the gluten-free diet in August of 2003. Sometimes, I do get upset and break down crying, and yes, my joints do hurt at times--specifically my knees and my wrists (and as a writer, I do not really want to develop pain there), and my hip bones sometimes jut out and hurt whenever I am sleeping on my side. This message board has really helped solidify the fact that I am not alone, and that there are other people out there that care and are living with this disease as well. As corny as it sounds, I derive much of my strength from you all, and I wish you all luck in your quests for good health.
--Julie from Ma.
Hey all--I just went to a gastroenterologist in Boston, Ma., and he is supposedly a celiac disease specialist. Well, let's just say that my experience was not at all positive, and I am frustrated to high heaven with all of these doctors who assume they know everything. Saying my symptoms: 20 lb. weight loss occurring over a span of one month, bloating, diarrhea, gas, stomach pains, gluten cravings, dizziness, nausea, fatigue, and bone pain, I was told that the autoimmune symptoms mentioned were not related to celiac disease, and that he did not think that I even had celiac disease, despite going through a positive IgA antibody test and a positive stool sample that showed antibodies. I did undergo a biopsy, but since I had only ingested gluten for two days, the test came back negative. Anyway, the doctor did not know what to do or say, despite ordering yet another blood test, which I am guessing is the IgG antibody test...I am still waiting for results on that one. He did not tell me what to do or where to go from here, unfortunately, and mentioned the gluten challenge, if the blood test came back negative. I am not sure if I want to put my body through that for an extended period of time, because the pain is so severe, but what does he know? He doesn't have to live inside my body for that time, and he doesn't know just how intolerable these symptoms truly are. I am just sick of getting bounced around from doctor to doctor, and being told that yes, I do have celiac disease, and then no, I do not have celiac disease. Which is it?? Needless to say, i left Boston feeling very confused, angry, frustrated and upset. This doctor only spent 5 minutes with me, if not less, and repeatedly interrupted me with his own comments. I might not be a celiac disease specialist, but I do know that some of the autoimmune symptoms I've been experiencing are indeed related to celiac disease, and I have a "gut" feeling (no pun intended) that I do have celiac disease. `I was told that: "well, we don't know", and that as a gastroenterologist he does not cover any other of those symptoms. I was just sick of all the hemming and hawing, and I was wondering if any of you experienced these same kinds of things... please let me know..I am so disappointed right now.