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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About CamiJ

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  1. Thank you all for your input. I do think that the pathologist was not in error. I've just been uncertain about the results because of what the GI said he saw, and what he showed me. I've been looking up pictures of blunted villi on the internet, and my own pictures do not look like the healthy slides. They're not completely scalloped in appearance, but they're more like the unhealthy than the healthy. My only thought is that the biopsies were from undamaged areas, or that the areas that appeared to be damaged were not really damaged. Anyway, I don't think I can afford to get another opinion even if I wanted to. I think that part of my frustration is stemming from a basic difference in beliefs and practices between me and the doctors I've been seeing. They want to treat my symptoms and "manage" my problems. I want to be cured or healed of my problems. If I were taking all of the medications I've been prescribed to treat my symptoms, I would currently have: anti-dizziness pills anti-depressants pills to help me create my own tears (for dry eyes with irritated bumps) steroid nasal spray nasal decongestant pills hormone creams headache pills digestive aids (lactaid, fiber supplements, anti-diarrheal, anti-inflammatory) acid reducers teeth sensitivity medication I know that this list is mild compared to what many of you have had to treat, but it seems like a lot to me! I'm 28! I'm a runner (when I'm well). I'm not addicted to any substances. I should be healthy. I'm concerned that if I just take the meds the different docs are telling me to take, the problems will not go away - they will just be covered or "managed". I will continue to get more and more sick. None of these meds fix problems - they just treat them. The reason I'm not taking any now is because so many of them have given me nasty side-effects, and they have not even helped. I checked out books from the library about all of the different symptoms I have, and the one common thread they all have is a food-related allergy or intolerance. That's just got to be it! (Or, all of my bodily systems are just coincidentally falling apart at the same time in a completely unrelated way - at 28!!!) I'm frustrated that the different doctors are only interested in their specialty (and the family practice doctors say depression is to blame), and they're just SO helpful: "take this pill, and you won't care anymore and it won't bother you so much! I don't know why you feel the way you do, but you'll feel better if you take this." Maybe I should just jump at the chance to feel better, but it just doesn't feel like the right answer, ya know? I feel like they're missing something important...If I take their advice, they admit that I may be taking these medications for the rest of my life. "We don't know why this happens, and there is no cure. This is just the way you are. You're perfectly healthy, but your body is just hypersensitive." By the way, my celiac panel was negative. New symptom today: itchy rash on my arm. Lovely. It sounds like a gluten or dairy problem to me (or both), but I don't know. I just don't want to get this wrong because I'm losing my ability to do anything.....How much longer will I have my wits about me to try to figure it out? I really hope this works!
  2. I'm still struggling to find an answer to my abdominal (etc!) problems. I really thought that the celiac symptoms fit everything that I've been experiencing - so the negative biopsy really threw me off. Here's the problem though: I just talked to the gastroenterologist on Friday and I asked him how it was that he thought he saw duodenal villi flattening (and marked it on his report), but the pathologist didn't see it? He showed me the pictures of my small intestine - showed the areas with cracked mud appearance, told me that it didn't look like a healthy intestine should. He said he thought it did look like celiac, and he took 6 biopsies. However, the pathologist's report said that the villi looked completely normal with no blunting or increase in inflammatory cells. My GI said that he cannot diagnose celiac just because the villi looked abnormal, but that the diagnosis had to take place on a microscopic level (the pathologist's area of expertise). I know that's right, but I just wonder.... Could he have missed it? My GI doesn't believe that food intolerances exist, and he says that true food allergies are very rare, so he ruled out the possibility that wheat or anything else could be making me sick (because I do not have anaphylactic shock reactions). Anyway, he wants to treat me assuming it's IBS (he admitted he has no idea what's making me sick - so he diagnoses IBS by default and goes into medication experimental mode - with me as the test subject). He said to take Immodium every day for the diarrhea - even if it's for the rest of my life! I'm beyond frustrated at this point. He's looking only at the abdominal problems in isolation (ignoring the other symptoms I'm having), and he's telling me to just get a handle on my stress and maybe the diarrhea won't be as bad. At this point, I'm feeling like I'm very alone - I am planning to go off dairy for the next month, and add gluten-free the month after that and hope for some results. I'm disregarding the GI's advice to take Metamucil, yogurt pro-biotics, and Immodium. I will try to manage the stress better, and I am going to try to eat more healthily. I just don't think that the dr's advice will help me right now (because I've done all of his advice before when I got my first diagnosis of IBS as a teenager - and it didn't help at all). I guess I'm hoping for some validation - or at least a voice of reason. Do I have a chance at solving this on my own, or should I trust the guy who saw what my insides look like and has a medical degree? My husband thinks that I should listen to the doctor - he says it might work this time. I went off gluten for a week, and quit because I didn't feel better, but then last week (back to normal diet) was horrible. I felt much worse than I had on Gluten-free Casein-free diet. So, I thought I should give it more time....Do I need a second opinion though on the endoscopy?
  3. On Oprah yesterday, Christiane Northrup (OBGYN, author of books on women's health issues), said that one in four women suffer from a gluten sensitivity. She deals with women's issues, so she didn't say whether or not those same numbers existed for men, or whatever. Also, I don't know where she got those numbers. But, if she's right, that's 25% of the population suffer from a gluten intolerance! The current celiac numbers are for just under 1%. So maybe out of those 25% affected by gluten, a much smaller number of people develop the ultimate gluten intolerance - celiac. Celiac can at least be diagnosed because it shows true and serious (and specific) damage - and can be deadly. For the rest of the 25%, they have true problems and symptoms and illness - but no tell-tale antibodies or specific mucosal damage. So, just think of that! Out of every 25 of us who get on this site with gluten-related symptoms - maybe one of us will have an actual diagnosis of celiac (if we're lucky enough to get a doctor to take us seriously and test it - and if they test in the right spot).
  4. I agree with you. It is good that they did not find damage. Not having celiac is a very good thing. I guess I was hoping for a little more effort on the part of the gastro in helping me figure out what is going on (it just seemed like he expected me to just be happy it wasn't celiac or cancer - I am! BUT - I still need an answer). And, I would like an explanation from him about the flattened villi he saw that the pathologist didn't see. I disagree with the gastro's statement that the blunting he saw was not of particular concern. I'm concerned about it, and I want to know what caused it, and what I can do to get my life back. I can't continue being sick like this. It's unacceptable to me. Anyway, I asked the gastro about food allergies (before my endoscopy), and convinced him to biopsy the esophagus too. Anyway, I think that the damage found there sometimes happens with food allergies, and he agreed. I eliminated gluten and dairy the day of the endoscopy. I eliminated soy yesterday, and corn today. Today I actually feel really great! I don't know if the gluten-free is finally working, or if the combo of gluten-soy-dairy-corn free is working. Or, maybe this is just a fluke. All I know is, today is awesome! I'm still open to other possibilities, so if anyone knows what else causes celiac-like symptoms, or has ideas what I can do to get well, I'm all ears!
  5. Well, I got the pathogist's report today, and I have to say that the amount of info these people are willing to give me leaves something to be desired! On the first page is a summary, and included is the clinical history (which looks like it was probably supplied to the pathologist by the gastroenterologist). Following a short list of symptoms it says, "duodenal flattening." So, the gastro saw flattening. Here are the descriptions from the patho: A. 4 biopsies of esophagus - "In fragments of squamous mucosa the basal layer was thickened and the vascular papillae were elongated. Lymphocytes were scattered throughout the epithelium. There were up to 4 eosinophils/hpf. There was no specialized intestinal metaplasia. (Note: the gastro suggested that this was chronic active inflammation due to acid reflux disease - and said to start taking prilosec otc for my symptoms - which I don't have - much). B. Duodenum biopsies - 6 taken - "No inflammatory process or diagnostic abnormality. The surface epithelium was intact without ulceration or inflammatory pseudomembrane formation. The villi were elongated without widening or blunting. Inflammatory cells were not increased in the lamina propria or surface epithelium. Brunner glands were present in numerous fragments." (Note: Gastro says: "no evidence for celiac disease.") Anyway, there were no pictures. It sounds like the biopsies were not taken from the flattened areas the gastro saw. Hmmm..... And, no one is questioning why my villi are flattened? Why the gastro saw flattening, but not the pathologist? Why do I have lymphocytes in my esophagus? What the heck is causing all of my other symptoms?! The descriptions appear to have been put together by a P.A., and the whole report was electronically signed out by one of the pathologists (MD). Does this imply that the pathologist didn't even personally review my biopsies? So, any thoughts about all of this? It's rather less revealing than I had hoped.
  6. I had negative blood tests too (numbers lower than yours). I was so sure I had celiac that I pushed for the endoscopy. (I've been symptomatic my whole life - got much worse recently, have family history of celiac - anyway, I really thought I had stumbled onto the answer). Anyway, my biopsy results were negative too, although they did find unexplained villi damage (not celiac). Anyway, I've been looking into other allergens lately, and it seems that many can cause the same types of problems and damage, but they are not as diagnosable as celiac (which is difficult to diagnose in the first place). Anyway, I'm going to try cutting gluten (there seems to be some evidence that you can have problems associated with gluten without having actual celiac disease), dairy, soy, and corn (all major villi damagers), and see what happens. I hope you get well. Will you keep me posted on your progress? You and I are in the same boat at the moment.
  7. I'm having the same problem - but I was not diagnosed celiac (just damaged villi). Anyway, I was trying to figure out what else causes damaged villi and celiac-like symptoms. Ravenwoodglass suggested to me to cut dairy and soy as well as gluten. I looked into that further too and I came across this article. http://www.dogtorj.net/id23.html The author talks about the "big 4": gluten, casein(dairy), soy, and corn. He actually calls them the 4 horses of the Apocalypse - and he believes that the majority of the world's chronic conditions and diseases can be linked to intolerances to these foods. Anyway, I know it's not a terribly scientific source, but he does have some interesting points. I noticed doing a google search of "GFCFSFCF" (gluten free, casein free, soy free, corn free), that cutting these allergens has been useful in treating autism, epilepsy, and a number of other conditions. The author of the article has celiac, and he said that when those with celiac fail to do well on the gluten-free diet, they can often find relief cutting out the rest of the big four. All four, he says, have similar molecular properties, and all are capable of damaging villi. (He also notes similarities to properties of MSG and aspartame (all contain glutamates)- which have been known to cause problems too. I personally cannot tolerate MSG - bad headaches!) Anyway, what I thought was really interesting was this: He says: ------ "The fact is that the Mayo Clinic and Johns Hopkins University published their incidence studies last year and found celiac disease to afflict 1:122 Americans. Yes, that is the new
  8. I have a gastric diverticulum - so not exactly diverticulitis. And, I haven't been given any treatment instructions yet (just found it last Thursday), but I do know a little about fiber. Beans have tons of fiber, and they're really nutritious and have lots of protein too. Brown rice has lots of fiber. Just because you can't have wheat doesn't mean that you can't have grains, right? Try quinoa (from a certified gluten-free source). Corn is pretty fibery (is that a word?). I found this on the NIH website (and omitted references to gluten-containing foods. There's quite a lot you can eat: Amount of Fiber in Some Foods Fruits Apple, raw, with skin 1 medium = 3.3 grams Peach, raw 1 medium = 1.5 grams Pear, raw 1 medium = 5.1 grams Tangerine, raw 1 medium = 1.9 grams Vegetables Asparagus, fresh, cooked 4 spears = 1.2 grams Broccoli, fresh, cooked 1/2 cup = 2.6 grams Brussels sprouts, fresh, cooked 1/2 cup = 2 grams Cabbage, fresh, cooked 1/2 cup = 1.5 grams Carrot, fresh, cooked 1/2 cup = 2.3 grams Cauliflower, fresh, cooked 1/2 cup = 1.7 grams Romaine lettuce 1 cup = 1.2 grams Spinach, fresh, cooked 1/2 cup = 2.2 grams Summer squash, cooked 1 cup = 2.5 grams Tomato, raw 1 = 1 gram Winter squash, cooked 1 cup = 5.7 grams Starchy Vegetables Baked beans, canned, plain 1/2 cup = 6.3 grams Kidney beans, fresh, cooked 1/2 cup = 5.7 grams Lima beans, fresh, cooked 1/2 cup = 6.6 grams Potato, fresh, cooked 1 = 2.3 grams Grains Brown rice, cooked 1 cup = 3.5 grams White rice, cooked 1 cup = 0.6 grams ------- I hope that helps!
  9. No, I didn't have any gene testing. I've heard that EnteroLab does that, but I didn't know if it was something that a regular lab would do. I'll check into getting that lab test done for myself (and possibly my family members). Celiac runs in my Dad's side of the family - he and I both have first cousins with it, his uncle died as a baby of it, and my dad has actually had celiac-like symptoms his whole life. He's never been tested. Anyway, I'm hoping that all of that history (and my own problems) will be enough for me to convince a pediatrician to do a celiac panel on my four kids. I have 3 that are having "iffy" problems. My oldest was a colicky baby - always gassy. He was big (as in tall - high on the charts), but he was always having some issue with food. He used to throw-up randomly all the time. Now he's a pretty irritable, skinny 6 year old. My 4 year old won't eat. He dislikes most foods - as a baby he always cried at meal time. I had to force him to eat. He's small and rather skeletal looking. The pediatrician hasn't been too worried about that but just tells me to butter both sides of his bread and give him whole milk. He tells me most days that his tummy hurts. My baby gets a little rash around her mouth and on her chin when I give her biter biscuits and crackers (all with wheat). She's a happy baby, but a little small. She's also reaching some milestones a little late. She's not crawling yet at 9 months. Anyway, I'd feel better if they were all tested.
  10. Thanks for all of the suggestions! It doesn't sound terribly daunting. The part that stresses me a little is trying to eat out. I do make a lot of whole foods at home anyway, and if I get my energy back, it won't be hard at all. I never felt that great with all of the processed foods in the first place. I am having some major cravings for ice cream this week, but if I feel better as a result of all of this, I'm sure it will be worth it. Do you make your own stock, or is there a good GFSFCF one that I can buy?
  11. It was also my understanding that blunting damage was microscopic - but I read somewhere else that sometimes the GI can see scalloping, or areas with a dried mud/cracked appearance that then turn out to be atrophied on a closer look. I'm guessing that's what the GI saw. I don't know yet what the pathologist saw, but I did request the report to be sent to me. I've been digging around a bit since my endoscopy, and I don't really know enough to say how it's all diagnosed, but I think that the pathologist looks for lymphocytes (killer T-cells). If there are enough of them in a particular section, the pathologist can then say that it looks like one's own immune system is doing the damage - and I would assume that this particular kind of cell is specific to gluten consumption or they would not be able to differentiate that type of damage from the kind that dairy or tropical sprue or whatever can cause. So, again I'm guessing, maybe the pathologist did see some damage, but it didn't contain the lymphocytes - therefore not celiac. Or maybe there wasn't any damage after all. I'm anxious to see the report for myself.
  12. Wow, you guys are great! Thanks for all of the suggestions. I did have my IGA tested, and I'm not IGA deficient. The idea of being intolerant to dairy is a real possibility. My mom says that cow's milk made me sick when I was a baby. I guess at some point I tolerated it better, but then as a teenager I started getting really sick again. I had a bunch of tests run then too without anything more than a diagnosis of IBS and chronis sinusitis. My teachers thought I was anorexic because I had lost so much weight (but I was eating a ton!). I didn't start menstruating until I was almost 16. I was prescribed a bunch of medications that didn't work, and eventually I just accepted that I was supposed to feel ill all the time. In college I finally figured out that dairy was a problem, and when I started taking lactase supplements my stomach problems improved drastically. I still didn't have normal digestion by any means, but at least I wasn't doubled over in pain all the time. Anyway, I'll definitely stay off dairy and see what happens. Soy is harder. Isn't it in everything too? I guess if I'm going to be serious about this, I should cut the major culprits and go from there. So, what do you eat if you're gluten/dairy/soy intolerant? About Lyme disease, my GI wouldn't test me for it because I live on the west coast and I have not been travelling east at all. He says it's highly unlikely where I live. I agree though that some of the symptoms seem to fit (mostly because it's another multi-system - bazillion symptom disease).
  13. Thanks for the reply! I've had the celiac panel run twice - by different doctors and different labs. They were both negative (low negative actually). I wish I were certain enough to push for another diagnosis, but at this point I feel like I should just accept it and move on. How many times do I have to be told "no" before I believe it? It could be something else - maybe I'm barking up the wrong tree. I don't know enough to guess what else it could be (I've had labs for thyroid, vitamin levels, metabolic processes, other autoimmune conditions - all normal.) Plus, there are only two places with gastroenterologists in my city (both have about 10 doctors). I don't want to go to anyone in the same office because they will not want to step on my doc's toes, and will likely concur with whatever he said without even looking. I can't go to the other because they do referrals only, and I can't get anyone to refer me. The other doctors I've been to all think that the symptoms are likely due to depression. I've told them I didn't think I would be depressed if I wasn't having headaches every day, but they just say that's the way depression works. It makes everything hurt. Of course, I haven't been depressed my whole life - - and I've never heard of losing so much weight while eating 3000+ calories a day as a depression symptom. But hey, I don't know.... Anyway, I'm on day 5 of gluten free/dairy free. It's going okay, though not as well as I hoped. My brain fog is gone, and I have better energy, but I've still been gassy and I'm still getting headaches. I'm not sure how to test this - do I just stay completely gluten free for awhile (months) and hope that everything resolves? Or do I stay gluten free for another week or so and then try something with gluten in it to see if I react? If I have a problem with gluten, I should have some kind of reaction, right? I don't know how long to give myself to allow for villi healing - I think it's reasonable to assume that I won't have great results gluten free until my villi heal (if they are in fact damaged.)
  14. I got the results from the pathologist today (following my endoscopy/colonoscopy last week). Everything is normal - stool studies, biopsies, all that blunting the gastroenterologist saw during the exam - all of it. I can't believe it. I don't understand. He did say that what they found was consistent with acid reflux (the one symptom I don't have all the time), and that I should take prilosec OTC. I don't know how that's supposed to help me quit losing weight, stop having headaches every day, not have diarrhea every day, make my joints quit hurting, stop my tingling fingers and toes, make the mind-numbing fatigue and dizziness go away, etc. So, I guess I'm now part of the self-diagnosed gluten sensitive (possibly) group. I'm upset and devastated.....I thought celiac was the answer. It just made so much sense! I know this is not a new question, but is there anything else that can do all of that? I've been sick-to-my-stomach my whole life (I'm 28), it got much worse after I had my baby 9 months ago. Maybe the doctors I've been seeing are right - that I'm just depressed. If I wasn't before, I am now. Where do I go from here?
  15. Yeah, I have a question about cutting out dairy - Does eating dairy prevent the villi from healing? Or, is it just that I won't be able to digest it very well until the villi heal? I've been lactose intolerant for years, so I'm used to taking Lactaid with nearly every meal anyway. I cut the dairy the day I cut gluten because I suspected possibly an allergic-type reaction to it (and wheat) - if not celiac. Along with the abdominal symptoms (diarrhea, gassiness, pain), I've been having sinus/allergy type reactions. I get stuffy and a sinus headache. So, since I've cut gluten and dairy (a few days ago), I'm still having digestive issues and sinus issues every time I eat. So, I think I can rule out an actual allergy (unless it's to something else that I haven't thought of). I heard Dr. Oz (on Oprah) say once that sinus issues could be caused by inflammation of the digestive organs. That would make sense - if my villi are so damaged due to celiac, I probably will continue to have sinus issues until it all heals, right? So, can I eat dairy with Lactaid, or should I stay away completely for awhile?