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Everything posted by dfish

  1. Thank you all for your responses. I'm not sure about the soy stuff. I have recently had extensive allergy testing, both IgE and IgG testing (RAST, Great Smokies, regular skin prick testing, Enterolab, etc) and the only things that I showed a huge response to was dairy (off the charts kind of stuff). Even my gluten intolerance was low and almost did not show up, but the doctor said just to be safe consider it "moderate" for a while until I see how I do without gluten or dairy. I am actually supposed to do an "elimination" type thing with gluten in a few months because my results were so low that it's not even clear if I have any type of reaction to gluten. The doctor truly thinks that dairy and eggs have been my main culprits all along (Interestingly, I started getting really sick and began having all of these health problems about two years ago when I went on Atkins, which, as we all know, includes a lot of cheese and eggs. Before that I was fine). The other things I tested highly IgE and IgG allergic to were bananas, asparagus, cranberries, and eggs. Soy was perfectly fine, as was everything else. Would I still be reacting to soy after doing all of this testing and getting these results consistently? Also, I do not have cross contamination because I am the only one that eats in my house, I've stopped eating out at restaurants, and I bought all new stuff when I got my diagnosis two years ago. I also use gluten free products on my hair, skin, face, etc. and thought I had pretty much eradicated gluten out of my life as much as is humanly possible. I guess what I am hearing is that this is probably not normal and that something else must be wrong? Thank you so much again for all of your responses!
  2. After testing several weeks ago, my tests came back showing a huge intolerance to casein and all dairy products, a moderate intolerance to gluten, and no full blown celiac disease, just the intolerances. Well, I stopped eating all dairy products and gluten products, have a gluten free house, etc, and I've gotten worse, not better. Since I stopped eating gluten and casein and other various allergenic substances, I've had horrible stomach cramping and pain, heartburn that sent me to the cardiologist cuz I thought I was dying, my stools (sorry, this is where it gets graphic) are either rock hard and not wanting to "leave the building", causing some ripping and tearing, or very loose and full of mucuous. I am sicker than I ever was eating dairy or gluten. Also, my stools are "sandy", or "gritty" or something, have a consistency like an apricot facial scrub (again, sorry, graphic). Is this normal? I took some probiotic pearls prescribed by my naturopath and stopped taking them because I thought maybe they were causing the problems, but that was three weeks ago and I'm still all screwed up. Anyone else have these symptoms? If so, what was the cause and how long did it take for them to go away? Thank you!!
  3. Just wanted to throw out some suggestions for folks struggling with getting a diagnosis or information. After a two year battle of trying to figure out what the heck is going on with me, I think I'm finally getting the help I need and would like to share it with others. I contacted Great Smokies Laboratories (you can google them and get their website, I can't ever remember it offhand) after reading their website. They have a food antibody assay that includes both IgE and IgG mediated allergies, plus a full celiac panel, among several other tests. The catch is that they require a physician to order the tests. But, I emailed them and got a list of doctors in my state that will refer to them. I made an appointment with a doctor close by, a naturopath, and went in a few days ago. I told him my long story about all of this stuff and let me tell you, what a huge difference between him and other doctors! He spent two hours going over everything with me, ordered comprehensive celiac panels and food antibody tests, among a whole host of other tests, explained all of the tests to me, including their advantages and disadvantages, talked with me about all of my various options, talked with me about leaky gut syndrome and other things that he believes may be going on, talked to me about the stress and frustration of all of this and how that can affect my body (he was very sympathetic and kind about that stuff) and then asked me to call him every few days to just let him know how I was feeling and doing until my test results come back!! He was absolutely wonderful and I believe now that I am going to get some definitive answers. My thought is that most doctors that do refer to Great Smokies, which is kind of a "non mainstream" lab, will more than likely be similar in that they are willing to think outside the box and work differently than regular doctors to get a diagnosis. So, just in case anyone is wanting to try a different way to get some answers, I would suggest/recommend getting in touch with Great Smokies to get a referral list and getting in touch with one of their referring physicians near you. Although I can't guarantee it will be better for you, thus far this is the best experience I have had with a doctor regarding this celiac/food allergy question. Rachel
  4. Thank you for the nice response! It has been a huge struggle for me to try to figure out what could "kill" me soon if I eat and what's going to "kill" me down the road. I've done so much research on the topic, I seriously thought about going back to school to become an allergist! Might make all this time and effort worth something Anyway, I'm not sure what the "average" rate for skin prick testing is but I have seen in most documents that it is generally between 14 and 1700 dollars. I got the bill for my skin prick tests about three weeks ago and it was 1679.00; that didn't include the doctor's fee. Fortunately, I have excellent insurance that paid for it all, but it won't pay for an ELISA. Gotta love insurance companies!
  5. There is some confusion among professionals about what is an "allergy". They all agree that "true" food allergies are those that are mediated by IgE antibodies in our bodies. Those antibodies are the types that cause an immediate, histamine response by the body. Traditional "allergy" testing, such as skin prick testing, tests for true IgE mediated allergies, although they are more accurate for environmental allergies than for food allergies. What I have read (and I have been doing extensive research on this issue lately because I've had the same confusion) is that skin prick tests that test for IgE mediated responses to food are fairly accurate in ruling out IgE allergies (ie, a negative result is pretty much accurate) but not very accurate for ruling in food allergies (ie many false positives). And, this is for IgE allergies only If you have a food that you are highly allergic to, it will likely show up on a skin prick test and you will be told to avoid it. IgE mediated allergies are the type that cause anaphylaxis (ie, you accidentally get some cross contaminated soup with shellfish, throat starts swelling, pass out, shock, possible death, etc) and require people to carry around Epipens, etc. I had skin prick testing done to foods and had many that were "borderline" but four that were very, very high (strange ones like bananas, peaches, and celery and then all tree nuts). I now have to have an Epipen and have to make sure that I avoid these foods like the plague because, frankly, I could die if I eat them. Where the debate is among medical professionals is whether or not food reactions that are mediated by IgG antibodies can be considered true food allergies. Some doctors and researchers say yes, some say "no". I'm inclined to believe myself that an IgG reaction is also an allergy. However, they are NOT the kind of allergies that will cause anaphylaxis. Rather, IgG food allergies are the kind that continue to cause gut permeability, brain fog, GI symptoms, etc. They are still bad for you and, I've come to think of them as the "long slow painful death" antibodies (ie, you're not going to die from anaphylactic shock, but in about twenty years, after corroding your body this way, it's bound to take it's toll somehow). There are not really any accurate tests that your doctor will likely give you for these types of allergies because the ELISA, the panel used to test for IgG antibodies specifically, seems to have fallen out of favor with doctors. One theory I have read frequently is that they have "fallen out of favor" because they only cost about 140 bucks whereas skin prick testing, the kind your doctor will likely do if you tell them you think you have food allergies, cost about 1600.00 and your doctor can bill you a lot higher for them. However, York Labs does an ELISA panel for IgG mediated allergies (but not IgE). Also, Great Smokies Laboratories will test both IgE and IgG food reactions but you have to have the tests ordered by your physician. If you have a good doc, they may be willing to order these tests for you. My research indicates that this may be the most comprehensive food allergy testing laboratory out there, it's just getting your doctor to cooperate that is the problem. I should also note that, when talking about the accuracy of the skin prick tests in ruling out food allergies, that is only to rule out IgE mediated allergies. So, let's say that you test negative for milk on a skin prick test. It is fairly accurate that you do not have an "anaphylaxis" allergy to milk. But, you could still test positive to an IgG test for milk and that doesn't mean that the first test was wrong. It just means you don't have that histamine response to milk, but you are still allergic to milk. In sum, just because a skin prick test says "no" and that is found in the research to be accurate, it doesn't necessarily mean you should eat that food without first investigating your IgG antibodies as well. Food intolerances, lastly, are not mediated by any type of antibody. They do not cause any type of "immune" response in the body, although they do cause discomfort and feeling ill. Lactose intolerance is a perfect example of this. A person who is lactose intolerant likely does not have the proper ability to digest the enzymes in lactose and when they eat it they feel terrible, get diarrhea and bloating, etc, BUT they are not having any antibodies in their body identifying that food as foreign and attacking it. A person who has a true milk allergy gets an immune response in their body when they drink milk. They have either IgE or IgG antibodies that attack the milk proteins. Sorry for such a long post, but in my research, these are the conclusions I have come to. Food "allergies" are caused by antibodies and a true immune response in the body attacking the food protein as foreign. Food "intolerances" are a body just saying "eww, I don't like this and makes me feel yucky, don't eat that". Hope that helps if you were able to wade through it! Rachel
  6. Thank you so much for all of your replies. This is just so horrible and confusing. As it stands now, I'm allergic to wheat, casein, eggs, celery, corn, carrots, chicken, fish, shellfish, legumes, melons, citrus, bananas, all tree nuts, hmmm, what else? The list is huge and ridiculous! I guess what I am having such a problem with is one, figuring out what to eat when I feel like I'm starving all of the time and even hypoallergenic foods are bothering me and two, why I am now allergic to everything when I've gone on for thirty years eating whatever I wanted and not having a problem at all? It seems like the more I cut out of my diet the worse my allergies are getting. Someone mentioned hypersensitivity. What does this mean? Does it go away? I'm tempted to just start eating everything again because it seems almost like the less stuff I eat the worse my allergies are getting. I cut out gluten, didn't feel better, cut out dairy, didn't feel better . . . thus, the skin allergy testing. Even the results of that are confusing. According to them, I'm just as allergic to saline as I am to wheat and corn and eggs? Does this make sense? I can't get a straight answer from the allergist, he just keeps telling me to stay away from the stuff I was REALLY allergic to, like bananas and peaches, and to eat the stuff I tested the same as the saline to "as tolerated". Well, I'm not able to tolerate anything any more. I guess I'm wondering if other people have this "hypersensitivity" thing all of the sudden and if it ever goes away?? What can I do to stop this horrible pattern of cutting out things and getting even more allergic? Thank you again for all of your support! Rachel
  7. Okay, I am needing some guidance here. I'm thoroughly confused. I am gluten sensitive, tested positive to wheat and a whole host of other things in a traditional skin test (IgE mediated allergies); I have figured out the difference between IgE mediated and IgG/IgA mediated allergies and have come to realize that I have a bit of both. I'm avoiding the foods that I tested positive for as well as gluten. However, I'm finding that I'm having allergic reactions to almost everything now! I'm terrified of anaphylaxis, I mean absolutely terrified of having a reaction, I'm cooking everything from scratch in a dedicated kitchen, and I'm reacting to things I've never reacted to before. I eat a bowl of plain, organic brown rice and the next thing I know my head is totally stuffed up, my lips are burning, I'm getting little itchy spots all over my body . . . I eat an apple, same thing. I eat a salad with homemade oil and vinegar dressing, same thing. The weird thing is, I can eat a bowl of Spaghettios (before payday, totally broke, and only thing in the house leftover from the "good ol' days") and be totally fine. Just fine. No reaction. Not days later. Nothing. I'm becoming anorexic, to be perfectly honest. I am already hypoglycemic but I'm finding myself pushing how long I go between eating longer and longer and longer because I am so scared to eat. Things I didn't test positive for are now making me break out and itch and get stuffed up and sick. I am staying in a bad relationship because I am afraid to be alone/eat alone for fear of an anaphylactic reaction. I won't eat unless there's other people around and my boyfriend works nights, so basically I've stopped eating after about 2 every day. I can't get a straight answer from any doctor and frankly, this is ruining my life. Literally, I feel like my life is getting ruined because I can't even eat a freakin' apple anymore! Is this all in my head? Am I doing this to myself with my fear of anaphylaxis and food? Can anyone help me understand why I'm reacting to everything (and I mean EVERYTHING)? This has gotten really, really bad and I need help! Thank you!!
  8. I am needing some help figuring out all of my test results and am hoping that someone can help. Here is what has been determined so far: Antiendomysial antibodies: negative IgG: positive IgA: negative Enterlab: Slightly positive to gluten, no intestinal damage, no celiac gene (other "gluten sensitive markers") IgE skin prick tests: positive for allergy to wheat So, it's obvious that wheat is a problem for me, and that is fine, but I'm wondering if "gluten" is a problem for me. From what I've read, even on this site itself in the research articles area, antiendomysial antibodies are very conclusive for celiac disease, so since mine were negative, I don't have celiac disease. The articles also say that the positive IgG could be something else too because it is a less specific test. Everything I have read on the web about the gene testing says that it is "impossible" for someone without the gene to develop full blown celiac disease even with sensitivity. So, I understand that I am allergic to wheat and need to avoid it, but I guess I am wondering if I have to avoid "gluten" the same as I would avoid wheat. Due to a tremendous amount of other food allergies I have discovered, it would be nice if I could eat simply "wheat free" instead of gluten free. Help? Thanks!
  9. I can so much understand what everyone is saying here. I have not gone a year and a half without calling in sick at least one time per week. I went from having over 300 hours of sick leave when all this started to 4 currently. I am lucky in a lot of respects because I have a job that allows me to "flex" time, so when I am feeling good I work weekends and then can "flex" the time out later in the week. But this doesn't account for how I personally feel like a failure because I want to be a good employee. I also have several bosses who don't understand this disease at all and who have "talked" to me about my absenteeism. My retort has always been for them to look at my work product, look at how I always meet my deadlines, to talk to others that I work with who praise my work very highly, and then they can talk to me about how my absenteeism is affecting my job. Since they can't say that my absenteeism is affecting my job, they back off. I am also union represented and know from others' experiences that it would be like pulling teeth to get me fired for something like an illness because of my union representation. I know others don't have that luxury and that makes me sad. I would suggest for persons who are getting denied disability or long term insurance or are getting harrangued by managers that you go to speak with an employment attorney. Celiac disease is a true disease that is, in my understanding, covered under the ADA and Family Medical Leave Act. The FMLA allows a person up to 12 weeks per year leave, generally above and beyond any sick leave you may have (it's generally unpaid leave, but it's still twelve weeks). In my experience, employers bank on the notion that their employees don't know their rights and are so desperate to keep their jobs that they will tolerate anything. However, a good employment attorney should be able to speak to you about your options and these federal acts that are designed to protect people from just such employer problems. It may seem extreme and expensive to go speak to an attorney, but for the amount of suffering and stress you are already enduring because of this condition, it may be worth the money to get a little peace of mind about what your rights are. AND, it may be worth the financial and emotional recourse to "teach" your unsympathetic and inappropriate employer via legal action just how serious celiac disease is.
  10. Thank you for the ideas and kind words! It's funny because when I look at the list of things I can't eat, in the whole world of food and cooking, I can honestly see that it's not that much compared to what I can eat, and I've tried to keep that positive attitude. I also suffer from hyperinsulinemia, so I have to have protein with every meal, but when I can't eat any legumes or meats other than red meats, as well as eggs, that keeps my protein options pretty limited. It's even questionable about whether or not I can eat dairy, but I can't have a protein-less diet, so I eat dairy and just worry about the "consequences" later. Just eating rice and veggies at one sitting is not an option for me because of my insulin problems. But making a list of what I can eat is a great idea. It's just very frustrating because I am a cookie/brownie/cake person and it's extremely difficult to think about never eating these again. Just yesterday at work I had to bypass a morning meeting full of cinnamon rolls, scones, and muffins and a lunchtime birthday cake. The cravings made me unglued after walking by all that stuff that I love and can't eat. Thus, my failed brownie attempt when I got home. Carolyn, you stated that you stopped buying mixes. Do you still bake? If so, how? Is it possible to just substitute a general gluten free rice flour mix (although I can only use rice, potato, and tapioca flour, not soy or bean flours for me) and egg replacer into some general recipes? As a person who works sixty hours a week and attends grad school, all this "from scratch" cooking and baking is taking it's toll, but I'm willing to do it if I could just have a freakin' brownie!!! I'm also really interested in finding out more about this "rotation" idea. That is what is so confusing about what the allergist said. There are several things that he said "avoid completely", mainly eggs, bananas, peaches, celery, and all nuts, because those I tested the highest sensitivity to and eggs and nuts can cause anaphylaxis (I now have to carry an Epipen around with me and constantly think about my own mortality every time I put food in my mouth, lovely). But, with respect to the other stuff, including wheat, corn, soy, etc, he told me to eat them "as tolerated" because I only tested slightly more allergic to them than I tested to the saline solution control. What does "as tolerated" mean? I am also seeing an acupuncturist who has advised me that, after several months of acupuncture, I may be able to tolerate those foods again in small doses. How confusing? How does one "rotate" their diet when a lot of foods contain several allergens at once (ie a food with wheat, corn starch, and soybean oil all in one)? Thank you so much for your replies! It's so nice to not feel alone!
  11. I need to vent. Hope that's okay. Was diagnosed with celiac disease about a year ago. After doing some research, didn't trust the doctor who diagnosed me. Did Enterolab, which stated that I showed evidence of "gluten sensitivity" but no intestinal damage. Took that to my doctor. They said "not full blown celiac, should still avoid wheat and gluten". Fine. That was hard enough. BUT, I got totally away from gluten for a year and still felt horrible. Went to another doctor. Suggested an allergist. SO, went to an allergist. After some initial confusion about the results (which are still confusing), results showed that I am allergic/sensitive to chicken, fish, shellfish, eggs, wheat, corn, soy and all other legumes, nuts, peaches, bananas, melons, citrus, celery, and carrots. SOOOO, I now cannot eat anything but red meat and potatoes, basically. Extremely frustrating and I spent about a week being very, very upset. Now all I eat is red meat and potatoes and apples and feel gross, bloated, and nutritionally deficient. Can't even take vitamins because they have corn binders in them. Thought my life was bad before with just gluten BUT, I have tried to have a positive attitude because frankly, this last year has been horrible and has resulted in my almost getting divorced and losing my job due to depression and anxiety. OK, so I get a positive attitude, decide to try to live this way because it can't be any worse than feeling like crap all the time, right? So, I go to the store, spend tons of money on all of these specialty allergen free foods and mixes and flours and whatnot as well as meat and potatoes. Search for hours for recipes off the internet. Spend more time than I really have cooking. And, as peppy as possible, try to make these things so that I can have a somewhat "normal" life. And after attempting to do this several times, I only have one question: Who makes these products and who makes these recipes?????? I have bought a number of products from "reputable" and recommended celiac and allergy free companies and have spent a lot of money on this stuff, follow the recipes to a T, and end up with some kind of God-awful gook that I wouldn't feed my dog. Just this evening I went through 2 brownie mixes (total cost 16 bucks, ridiculous) only to find that one of the mixes stayed like dry powder mix and was useless and the other turned into an sticky, oily clump that wouldn't "glop" off of the spoon. When I did get it off the spoon, the brownies were so oily that, I'm not kidding, they were boiling in the oven. Boiling brownies??? And that's not to mention the hundreds of dollars I have already spent on supposedly tasty pizza crusts that come out like a brick, cookies that would make good hockey pucks, and muffins that you could block a car on. Or the hundreds of dollars I have spent on cookbooks that now I can't use because they all use soy or corn or xantham gum (corn-derived) or eggs. I can't win and I was frankly a heck of a lot happier when I didn't know what was wrong with me, felt pretty crappy, but could eat. And I'm now at the point where I've decided that it's not the end of the world to just eat real food and take Immodium every day and feel tired and crappy. It's better than the anticipation, hope, expectation of something that I can eat that might possibly taste good and be different than the five things I can eat, the tears and disappointment when I find myself throwing my hope, time and money down the garbage disposal, and the utter despair I feel when I think about spending the next fifty years of my life this way. Is there anyone, and I mean anyone (not the regularly touted products that I've tried already and that have failed miserably) that makes multiple allergen foods that are remotely edible? And if not, if I don't have celiac disease and most of the foods that I am allergic to are not anaphylaxis causing (except eggs and nuts which I'm not finding so hard to avoid) is there any reason why I shouldn't just eat the d&*@ stuff and move on with my life? Help?
  12. Hi folks! I recently had my diagnosis of celiac confirmed through Enterolabs; prior to that, I was eating gluten for a gluten challenge that was scheduled with my doctor. Since getting the Enterolab results back, however, I have ceased the gluten challenge and stopped eating gluten. I have also stopped eating casein. However, I am having some major problems and am just wondering if this could be related to celiac. I have also been diagnosed with GERD in the past and believe some of this is GERD related, but not all of it. I have been feeling just downright horrible these last two to three weeks. I have a cough that will not go away, feel extremely fatigued (cannot seem to stay awake longer than two or three hours), a "foggy" feeling in my brain like I just can't concentrate and almost like I am perpetually dizzy, some anxiety where my heart starts racing and I get some pretty significant pains in my chest, a feeling like I can't swallow, and some water retention/swelling. I have been to the doctor and have had every heart/lung test imaginable, all are normal with the exception of a bit of a respiratory infection that I am taking antibiotics for. The worst part is the feeling that I am just "off", that my brain and body are in total shutdown mode. I've missed almost two weeks of work because I can't even hardly drag myself out of bed I'm so exhausted and foggy feeling. Can exposure to gluten and casein, like in a challenge, cause this over time? I've only been gluten free for a week or so and realize I wouldn't start feeling better that soon, but are these symptoms that could even possibly be caused by gluten exposure? I have to get out of this haze/fog/sick thing or else I'm going to lose my job and I'm not sure what to ask the doctor to look for any more since we've tested for pretty much everything already! Thanks much!!
  13. Burdee: I have noticed more of a reaction from soy than from dairy in the past, so I am extremely interested in finding out what kinds of things you eat, including mainstream products, that do not contain gluten, soy, or casein. This is the diet that I think I need. I've been doing research for hours since I got my results back and am finding that most alternative cheeses, milk products, etc, either contain casein or soy. Could you please give me some ideas as to what you eat? I would very much like to be soy/casein/gluten free but to be totally honest, I cannot go home and cook from scratch every night and need some easy to prepare foods. I also react a bit to eggs, so having eggs for breakfast is not an option. My days of grabbing a yogurt are over and now I'm totally lost!
  14. Yay! I finally got my Enterolab results! But I have a couple of questions about them and am hoping someone here can help. Here are my results: Gluten Sensitivity Stool Test Fecal Antigliadin IgA 48 Units (Normal Range <10 Units) Stool Test for Autoimmune Reaction to Tissue Transglutaminase Fecal Antitissue Transglutaminase IgA 33 Units (Normal Range <10 Units) Stool Test for Small Intestinal Malabsorption Microscopic Fecal Fat Score: 104 Units (Normal Range < 300 Units) Stool Test for Milk Sensitivity Fecal anti-casein IgA antibody 34 Units (Normal Range <10 Units) Gene Test for Gluten Sensitivity Molecular analysis: HLA-DQB1*0604, 0303 Serologic equivalent: HLA-DQ 1,3 (Subtype 6,9) Interpretation: Analysis of this stool sample indicates you have dietary gluten sensitivity resulting in an associated autoimmune reaction to the human enzyme tissue transglutaminase, but no small intestinal malabsorption/damage. You also have antibodies to the main cow
  15. Throwing in my two cents . . . if Joe C was on Prednisone his whole life, it wouldn't surprise me in the slightest if he had to take "60 pills" a day. I'm not sure if anyone else who has taken it has had the same experiences as most people I know, but Prednisone is one nasty, nasty drug. I got prescribed it when I was first diagnosed for celiac and was on it for about three months. I got all of the common side effects, which include swelling, joint pain, "moon face", weight gain, and pushed into hyperinsulinemia (borderline diabetes) and had to get weaned off of it for another three months; now I'm diabetic and am supposed to take medication for that, too. My doctor just put me on it again two days ago for a different issue and after only one day my hands and knees are killing me and I already feel puffy and screwed up. Luckily, I'm only supposed to be on it for a week, but even with that short duration of a dose, I could still have side effects long down the road. Also, Prednisone suppresses one's immune system, so you become very susceptible to any contagious disease, including colds and flus, as well as more serious infections and viruses. When I read that he was taking Prednisone his whole life, one, I could understand why he was probably put on a whole bunch of other drugs just to counteract the effects of that one and two, I felt really bad for him because I can't imagine anyone having a good quality of life taking this drug for any length of time. It's a doozy!
  16. Thanks for the response, Barbara! I guess I am just so anxious to get my results because I do have a lot of faith in Enterolab from what everyone has said on this post that, when I get the results, I'm going to take them as gospel and quit messing around with all of these doctors! I feel like I'm waiting for (and they're overdue!) the answers that are going to totally change my life! And I want them now, kinda like a little kid!!
  17. Okay, maybe I'm just being impatient and bratty, but I am finding myself a bit disgruntled with Enterolab. The paperwork that they give you says that they process your specimens asap and that results are usually received within two weeks, but to please allow three weeks for the results due to their high volume of tests. I can respect that. Their paperwork and website also says to contact them if you do not receive your results in three weeks. So, three weeks have gone by with me very anxious for my results, but I've been pretty patient. In the meantime, I'm wandering around having no idea what I can and cannot eat. I made an appointment with my doctor for Monday the 11th to take my test results in to them because there is some "confusion" about whether or not I actually have celiac and I do not want to do a gluten challenge any longer than I have to. I made that appointment when I sent off the tests because my three weeks was up Wednesday the 6th and I figured the following week should be enough "grace time". I emailed Enterolab yesterday to let them know I had not gotten my results and was told (very nicely and professionally, I should say) that I should let them know again if I haven't gotten my results by the end of the week and that they do not have my results yet. The email also said that, if I tell them Friday that they do not have my results then they will "check with the lab". Okay, well, my doctor's appointment is 140 miles away, I have to take all day off work on Monday, and if I don't cancel within 24 hours they will charge me. So, I need to know by 9 am Friday (tomorrow) if Enterolab has my results, which, they should've had to me, by all of their paperwork, no later than yesterday. Has anyone else had a problem with Enterolab getting their results to them way later than their supposed "at the latest" date? How long should I expect to wait and should I just cancel that dr. appointment this evening and not count on getting my results any time soon? Thanks much!
  18. First of all, I want to say thanks to everyone who responded to my question about the testing kits. Once again, you are all the experts, since everyone said they think I got the second test kit in error and lo and behold, when Enterolab got back to me, they said the exact same thing! This may seem kind of silly because, well, common sense would say that anyone who tests negative would probably not be on this message board, but I'm wondering, has anyone ever tested negative through Enterolab? I'm just wondering because it seems like everyone has tested positive and it makes me kind of wonder if anyone ever tests negative? I'm waiting for my results but I am also really starting to think that Celiac is not what is wrong with me; My blood tests were inconclusive and I've been eating gluten for several weeks now in order to do a challenge with my doctor (that I will cancel as soon as I get the Enterolab results because I trust them more), and I don't feel bad at all. I've had no stomach problems, no diarrhea, no cramping, nothing out of the ordinary since beginning the gluten challenge four weeks ago. I have eliminated eggs from my diet and that has seemed to help more than eliminating gluten ever did; I also have noticed that about the time I began to get very sick last year, I was also trying the Atkins diet and eating eggs and chicken like a fiend. I don't eat either one of them any longer and feel better than I have in a long time. I have also been under a tremendous amount of stress this last year or so and that is getting dealt with too. What if I do test negative through Enterolab? Does that mean I absolutely do not have celiac disease? Thanks much in advance for all of your posts! I almost don't want to test negative because I enjoy reading everyone's posts and how friendly and supportive everyone is here
  19. Hi all! Thought you might be able to help me; I emailed Enterolab and did not receive any response to my question, so I figured I would post it here since so many of you have worked with them. I decided to do Enterolab testing and received my testing materials. I sent away for the Gluten Sensitivity Complete Panel that is including a Milk Sensitivity Test. I received two boxes from them, both with complete testing supplies (ie stool sample collection kits and gene sample collection kits). My question is, do I have to do both tests for both sets I received, or just do one stool sample, one gene sample, and send them back in separate boxes? There isn't anything in my instructions that tells me why they sent two complete kits and the instructions say to send off the gene swabs packaged "just like the stool sample kit", but why would they send me two complete collection kits? I would like to get these tests done and sent off tomorrow or the day after at the latest because I really, really want the results back so I can figure out what is wrong with me, but I'm not sure what to send back to them and don't want to do something wrong (it's quite a bit of money to waste, as you probably all know!). Any insight from folks who have done Enterolab testing would be great. Also, are they not very good at being contacted or getting back to a person with questions? I emailed them this morning and had hoped for a reply by the end of the day and couldn't find a phone number anywhere to reach them. Thanks much!
  20. Hello all! I'm just hoping for some suggestions because, well, I'm totally frustrated. I've been in the process of a gluten challenge for more testing because my other test results were inconclusive, but I decided to stop the challenge and just go for some Enterolab testing. I haven't felt any better or any worse, honestly, while eating gluten. I have decided that I want to try eliminating some foods to see if I start feeling better, but honestly, I don't know what to eat anymore and kind of feel like just not eating anything. From my personal "stomach" experience, I can't eat any grains, including rice, etc, dairy, soy, eggs, or chicken. I also cannot eat salads because they basically don't even digest, so that leaves out living on salads. Tomatoes hurt my stomach, as do citrus fruits, etc. What do people eat when they can't eat wheat, grains, dairy, eggs, chicken, or soy? I can't cope with not knowing what to put into my stomach and being totally terrified to eat. There's no rhyme or reason to what makes me sick. These least few weeks I have been eating gluten and felt the same as I did before when I was gluten free, I can eat rice with soy sauce and be sicker than a dog, but then I can eat cheese one day and I'm fine and the next day I'm a wreck; hence, that's why I've decided to eliminate most of the "main culprits" of food allergies/sensitivies, but what does that leave when even a lot of veggies hurt my tummy? Any suggestions on how to cope with such a limited diet would help. I should also add I live in a small town with very few options for specialty foods; basically, if I can't find it at Safeway, I can't buy it Thanks again!
  21. How does someone do a low carb diet if they can't eat eggs or dairy or chicken? I'm currently experimenting with my diet (partially because I'm in the middle of a fabulous gluten challenge) and am finding myself totally confused. I am borderline diabetic, so lower glycemic index foods are great for me and I've examined the South Beach Diet and Atkins and the Carb Addicts' Diet, but if I can't eat eggs or dairy or chicken, what can I eat? I'm not sure red meat is very good on one's stomach (I'm also trying to integrate some IBS type diets into my life and red meat is a big no no). I guess I'm needing to become a gluten free, dairy/casein free/low carb vegetarian? If that's the case, what the heck is a person to eat? PS: I'm also beginning to think I react to soy, so that leaves soy based dairy substitutes out, too. Should I just munch on kale and asparagus for the rest of my life? Any suggestions would be awesome!!!!
  22. I was put on Actos about a year ago for pre-diabetes and I gained 14 pounds in a month. You may want to get back in touch with your doctor. I don't want to scare you, but Actos is very hard on a person's liver and the information I received from my doctor was to contact her immediately if I noticed a great deal of weight gain rapidly because it could be water retention/swelling from liver issues. I went to my doctor when I gained that weight and she immediately took me off of Actos because of concerns about it affecting my liver function; I also took some liver tests when I went off of it to see if any damage had been done. I would highly, highly recommend getting in touch with your doctor and ask to be checked and/or put on something else. If you can stomach it, Glucophage is a diabetic medication that is not in the same class as Actos or Avandia; it may hurt your tummy for a while, though, and also requires some liver function monitoring but it doesn't seem to be as hard on someone's liver as Actos or Avandia. As an aside, I ended up going off of all of my diabetic medications because they were so hard on my stomach and I already have horrible stomach issues. I was not in full diabetes yet, so if I could get my diet and weight under control, my doctor felt that I wouldn't need the meds (my diet and weight are not yet under control, but I have lost a few pounds recently). Just be prepared for some significant GI issues with glucophage or metformin if that is what you end up taking.
  23. Richard: I wasn't actually feeling much better off of the gluten (which is part of the reason why I went back to gastro doctor). I was still having pretty bad diarrhea and stomach pains, and began having major heartburn, which is why I went to the GI doctor (I wasn't able to sleep because of the severity of the heartburn). The tests I had done previously only came back positive for IGG, not for IGA or anti endomysial antibodies. The doctor said that there's a number of things that can cause a positive IGG and that without the positive IGA or anti endomysial antibodies, it's not a conclusive diagnosis of celiac disease. Is that true? I don't know anything about this. Some information I've read online has said that my symptoms could even be caused by endometriosis! Ack! I know that I can pinpoint the date (to the date) that my stomach problems began over a year ago and that going gluten free has not been "revolutionary", I guess, in terms of helping my symptoms and has, in fact, made some things worse (like heartburn), but now I just feel MORE miserable than I felt before since I started eating gluten last week. I have also cut out caffeine, carbonation, fried foods, red meat, and dairy this last week thinking that I could at least isolate some stuff if I started feeling better even though I was eating gluten. Still feel, no pun intended, like poop. Is the info about the tests the doctor said true? Do I even need to bother with this challenge stuff?
  24. Hello! I was diagnosed with celiac disease 14 months ago after blood work and have not been very good about following a gluten free diet until recently (within the last month or so). I went to see a gastro because of some other concerns (he is not who originally diagnosed me, that was a general practitioner) and he's concerned about the results of my blood tests not being conclusive for celiac, so he wants me to do a gluten challenge. My next appointment to take blood is in three weeks and to possibly schedule a biopsy at that time. My question is this. I've been eating gluten for a week now since my last doctor's appointment, and I am miserable! If I stop eating gluten again now, is two weeks from my last ingestion a short enough time that my blood work/biopsy will still show some signs of celiac, or do I need to keep eating gluten and being miserable for another two weeks? I was kind of hoping I could get away with a week's worth of gluten and then stopping, especially since I have only truly been gluten free for about a month before starting to eat gluten again. Thanks so much for your time!!! This disease is so confusing to me and my family and friends that it's great to have a place to ask questions from people who know something about it! D
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