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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About natalieb

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  1. Hi Deb, I'm glad you wrote back. If there is anyone in this forum that I can help thru my exp. then I am glad. When I look back now after being diag. 3 months ago with sjogrens, it all fits. About 6 years ago, even before my celiac diagnosis, I would sit in my office and feel like I was flushed. sometimes, my cheeks appeared flushed and sometimes not. i would feel flu-like. i also exp what i thought to be bad vision, despite my perfect eyesight as things would sometimes go blurry and then it would go back to normal for a day,days, or months. I always ached, and to be quite honest, with that history, my gp thought that i was depressed, well, far from it. after my celiac disease diag, i started to get those mouth sores and then the bad thumbs. the time that i was the most scared was when i tried to push myself up with my wrists from washing the floor and i felt like they broke. during that time, i also had incredible jaw pain, (which now i know is where your paratoid gland is, that is involved with your salivary gland). as a reslut of sjogrens, i have rhum. arth. I was fortunate to have the good insurance to go to cleveland clinic. if I had not gone there, the rhum. here in pgh, were still guessing and giving me vioxx and telling me to take extra tylenol. also deb, when things got really bad I would notice that my eyes would get horrible if i were out in the sun or swimming. i thought it was normal for them to look blood red and burn after swimming. please be careful if you go to a rhum. regarding this as, i had a blood test called an ssa and ssb which is to test for sjogrens, both came back negative as well as a lip biopsy. however, my wonderful doc at cleveland said that you do not have to have every single symtom on a list in order to have sjogrens or many other diseases out there. I hope sharing some of this helps. if you have any specific ques. feel free to ask. i know that not everyone in this forum also has sjogrens, but it is another weird autoimmune disease. one would never think that if it is thesalivary gland then how can you have severe joint pain and weakness as well as tingling in legs, etc. by the way, that medicine has really helped suppress my immune system and i feel at least 8 years younger, I wouldn't say 10 however. lol. hope this helps. natalie
  2. I see you posted a while ago but I hope you read this. I have been posting all over here because over a year ago I was diagnosed with celiac disease, however, even after being gluten-free, I developed sores in my mouth, achy joints, bad red swollen eyes, and a dry nose, (I became nasal for the first time in 39 years), I would occasionally become hoarse as well. My number for gluten (blood work) came down in some areas and spiked in others. I had horrible doctor care here in Pgh. I then developed extreme stiffness in my thumbs. I also had joint pain everywhere, but partic. in my hips, and hands. I finally had had it and went to the cleveland clinic. They diagnosed me with sjogrens syndrome. by the way, sjogrens can accompany celiac disease. I am still gluten-free, but now I take an immunosuppressor called plaquenil. They have given me a steroid eye drop called restasis, however, I have recently had some problems with the drug so I have to call my doctor on monday. What made me want to write you is when you said your eyes. I just thought that it was normal for my eyes to look red, I mean blood red. I would also have sun sensitivity with my eyes and will forever. That is all due to sjogrens syndrome. Also, I had pain in my jaw, its not as bad now that I take the immunosuppressor. Actually, what sjogrens is, is an autoimmune disease that destroys your salivary glands which produce moistre in your mouth, nose, eyes, etc. I trust my doc from the cleveland clinic. He has given me something that no doctor here in my town of pittsburgh could do, he gave me a better quality of life.
  3. I just spent some considerable time posting about a disease that accompanies celiac sometimes known as sjogrens syndrome. No, I do not believe you have cancer....I believe it could be sjogrens. I am posting all over this place trying to get those who sound like me to listen. Over a year ago I was diagnosed with celiac. After being gluten-free for almost 8 months, i started getting sores on my lower lip and my tongue would feel weird. I thought that I had to be getting gluten from somewhere. I started reading this forum some time ago and noticed along the way people who sounded like me. I then got my antibody results back and while some went down, others spiked. I am a 39 year old female by the way. I just seemed to ache, esp in my hips, a little in my elbows, and then, it seemed like overnight, my thumbs began to lock on me and hurt so bad. I am a mom and have no time for pain, so I went to see a rhum in my home town who just told me that I needed to take extra tylenol for the pain, even with gastritis and duodenitis (also, these 2 things are common in sjogrens). I finally went to the cleveland clinic and was diagnosed with sjogrens. yes, I still have celiac disease, its just that this autoimmune disorder can come commonly with the other. Now that I look back and think about the jaw pain that I had, red tired eyes, stuffy nose, and ohhhhh those horrible aching joints, it all comes together. I take palquenil, an immunosuppressor and boy, the joint pain has really subsided. there were nights that it would hurt to turn over in bed and I'm only 39. I hope this helps. Just please, get a good doctor.
  4. I have had this question verified by several noted authorities both doctors and clinical nutritionists as when I first read some of the posts on this subject, I flew into a tizzy and went to whole foods on the search for gluten-free everything. Please.... everyone out there who is creating mass panic in telling people that they must have gluten-free shampoos, conditioners, lotions, etc, stop....The only thing that should be gluten-free is anything, and I mean anything thats goes into your mouth. This means lipstick, toothpastes, mouth rinses. I spent alot of money thinking that I had to watch every single thing.....obviously if you are getting a weird rash after using a shampoo, etc, then stop using it. I think we can create a huge mass hysteria by misinforming people.
  5. I am a 39 year old woman who had been diagnosed with celiac disease well over a year ago. Please listen to this.... I have been reading and posting to this forum for quite some time and occasionally ran across postings that sounded like some of the symptoms that I was experiencing after being gluten-free. For example, a year after being gluten-free, I was developing mouth sores, my tongue would hurt and look almost swollen at times, my energy level was at a new low, my antibody tests while seeming to come down in some areas, were spiking in others, also my nose seemed as if it had a clothespin on it, and my eyes would hurt sometimes, esp when I was in the sun. I finally went to see a rhumatologist here in Pgh who drew blood and I came back with a positive ana, rhum. factor, elevated sed rate, and elev immunaglobulin levels. During that time, I also became stiff in my thumbs which scared me to no end. Its just like it happened in one day. Well, the doctors that I saw at the top facility in Pgh told me "We think, it might be rhum. arth, but not sure, the puzzle just doesn't fit". After getting nowhere, I went to the cleveland clinic and was diagnosed with sjogrens syndrome. Sjogrens coincidentally is often found in celiac patients like myself and perhaps a few of you out there who I have read your post. Now that I have a proper diagnosis I am taking plaquenil, an immunosuppressor and feel like a new person. Of course I am and will remain gluten-free. The problems with my eyes and dryness in my nose has not decreased even with the medication, but the extreme fatigue and some of the gut pains are gone. Please please, if you have any of the above symptoms, please get checked, but be careful with the doctor that you choose. The rhum. here told me that I didn't have sjogrens due to a salivary test and an ssa and ssb blood test coming back negative. In fact, these same doctors told me that I needed to get on with my life and just take more tylenol for the pain, despite the fact that I suffer from duodenitis and gastris,(by the way commonly seen in sjogrens patients), So be careful with the doctor you choose. As for me, I will trust a doctor who fellowed at the cleveland clinic and has been there forever, thus, he knows that not all diseases, "fit a perfect puzzle". Just something for you out there to know.
  6. Hi, Are you sure that you haven't gotten a hold of gluten from something? I know that sounds silly but even certain sodas contain gluten. What about your medications or vitamins? I got sick about a month ago and was so upset because I had done everything to remain gluten-free. Turns out that I was taking a vitamin supplement and when I called the company to see if it contained gluten, they never gave me a straight answer and then never returned my call. I stopped taking the calcium plus D and within a week my stomach calmed down. I now take a different brand. Take a look in your medicine cabinet. There can be some real culprits in there. I know about the other food allergies too as most of the things you listed make me sick as well, especially one you didn't list, corn, (corn syrup, etc). They say that celiacs can really get sick from high fructose corn syrup, so I stay away from it. First off, take a look at any meds you are taking. I hope this helps and I want you to hang in there. It can get discouraging because you feel like you are working so hard to avoid what makes you sick and then you get results like that. You will find out what it is. Also, stay away from corn syrup, it can be bad news for people like us. Take care.
  7. Doctors

    I am 39 years old and suffered from undiagnosed celiac disease for 6 years. I finally got a good doc in pittsburgh who was able to dianose what my other gi doc couldn't do in 6 years. The problem is that I have soem nerve damage due to this disease. My gi doc recommended that I see a neurologist but he didn't give me a name. Needless to say, I found someone on my own and went to him today. It was a joke. You see, 4 years ago, I had a ct of my brain and there was calcification on my brain stem. Now that I know what is wrong with me I take no ones word. Due to the vision problems I have occasionally and the numbness on my left side (arm and leg at times), I wondered if all of this could be tied togehter. I stumbled across some research linking calcification of the brain and celiac disease. This doc today clearly knew nothing about celiac disease and the neurological effects of it. He is going to get my old ct scan of my brain and review it. That is, after he is done fighting with his contractor on the phone in his high glitz office in pittsburgh. I could clearly tell that he knew nothing about celiac. Can anyone recom. me to a neurologist that is knowledgeable with the effects of celiac disease or even knows what it is? I feel like I did 6 years ago when no-one believed in the medical profession that anything was wrong with me other than irritable bowel. Help please. natalie
  8. Hi, I read your comment about the spleen and it was like you described my exact pain. For seven years prior to being diagnosed with celiac disease I suffered from that pain and it can be gnawing. It is in the upper left quadrant. I believe that what you are feeling is your duodenum. Behing your duodenum is your spleen(I believe). Your stomach opens into your duodenum and my doc told me it can get inflamed. I was always told that I had duodenitis when having an endoscopy. The pain is out of this world when I ingest gluten. My old general physician told me 7 years ago when I complained of that pain that most "depressed" women get a pain in their upper left quadrant. What a crock! If I only knew then what I know now. I do get that pain and I understand 100%. Oh, sometimes, it also goes around the side and back, does yours? It always is on the left though.
  9. Dawn, How old is your son with celiac disease? I understand what it is like to have this situation as when I was diagnosed with celiac disease my doc told me to have my 9 yr. old tested as well due to the fact that she displays some classic symptoms. The test came back negative, but I noticed when she is gluten-free she does much better. anyhow, when I told my mother in law that I was going to have her tested she thought that I was out of my mind. In dealing with this, I have discovered that there are so many people out there who do not take this as a bonafide serious disease. It is a shame. Maybe that is part of the reason that they turn the other ear. Perhaps collecting as many articles on the subject, (Womans Day has an article about it as well in their Feb 17th edition), and presenting it to them. You will then have done all you can and must worry about your son. Obviously he got it from their side if your side of the family has no history due to the high genetic link. This disease however, still remains something that is in the dark. I actually had a friend tell me that once I healed my stomach that I could go back to have "a little" gluten here and there and guess what? She is a reg. nurse and has been for 18 years! Good luck. Remember though, you can only do so much and then guess what? It is up to them, they are big girls. Take Care. Natalie
  10. Ok...keep in mind, I am really trying to stick to this gluten-free diet. It has been 5 weeks and I had a craving for something sweet. My 9 year old daughter who hates everything I like, actually loved this. You must like lemons and raspberries. Also, I didn't measure a thing, this is just a dollup here and there thing but it is great! Edys grand vanilla icecream (as many scoops as you want) a dollup of gluten-free blackberry, or raspberry preserves a handful of cascadian farms mixed berries (thawed) 1 crumbled up Pams gluten-free lemon shortbread cookie on top Keep in mind this Edy's brand is gluten-free, it contains high fruc. corn syrup for those who can't handle corn syrup. It is sooo good though.
  11. Double Vision

    Hello Jean. I am a 39 year old woman with celiac and a history of thyroid disease. Unfortunately, my celiac was misdiagnosed for 6 years and I now have a great doctor, however, prior to my diagnosis of celiac, I went to the emergency room from work thinking that I was having a stroke or something. I couldn't take the pain in my left arem and my leg would ache and go numb on me. My reg docs wouldn't listen to me so after feeling awlful the whole day in my office I drove myself to the emergency room. They did a ct of my brain and found a large mass on my brain stem. This alrmed the docs and the report was sent to my general doc and he concluded that I had severe calcification which was known as osteoarthritis. Hmmm....well, now that i have celiac, I am rethinking as I have made an appointment to see a neurologist so that I can once and for all put that part to rest. My new doc told me that the pain in my legs and arms is most likely due to celiac. My vision has been blurred lately. It kindof goes on me and then returns to normal which is why I decided to see a neurologist. All of this so many years later. It all makes me sick. It could've been diagnosed so much earlier. Well, I also read that calcium will build up in various sites in the body including parts of the brain. So, in a long answer to you, yes I have heard of it. I will know more in a week or so as I have my appointment then. I would be int. to know more as to what your condition is. My doc at prebyterian hosp here inpgh would like me to give him the inof. that I found in some studies on the internet as he never heard of that kind of calcification and celiac. Take comfort in knowing that there are others like you. I will keep you updated when I go to the doc. I would like to know more about your condition though. Take Care. Natalie
  12. That is so weird because I too just had a relapse with my celiac and I swear that the calcium was to blame. I have called the drug company to have them tell me if gluten is in it but gee...what a surprise...the girl on the other end didn't know, she would get back to me. It has been over a week. Needless to say, I have not taken the calcium and started taking the liquid coral calcium that has been in my firdge and I feel fine. I t also has all the magnesium you need. I read the label on the coral calcium and the ingredients are clear cut. That bottle of calcium had ingredients that confused me and obviously the company. Next time your in a healthfood store, (a good health food store), see if they have the liquid coral calcium. I'm not sick after going back on it and ditching the pills. It is very pricey though thats the only thing. I would ask my doc first before doing that however. Take care. I know how you feel.
  13. I Give Up!

    You cannot give up! I was diagnosed in late August and went off my diet around the holidays. My excuse to myself was that it just wasn't working so what the heck. I don't know how bad you have celiac but I have it severe where I have neurological impairment. If you have it badly, do not expect your gut to heal immediately. Because I went off the diet, I had to go to the docs and I became even more anemic. My point is to give it time please. Actually, today was the first day I could go to the gym as my energy level was shot. Here are some things that work for me. There are some great soups out there that are gluten-free, and "whole foods Supermarket" has a great new gluten-free yogurt and a w2hole line of gluten-free frozen entrees that a really good. Also, watch what you are ingesting. The reason that I got so sick also had to do with some medication that I was taking that had gluten in it. Unfortunately this disease heals with time. I will pray that you can do it. You have to. If you go off you will so greatly regret how you feel. Are they sure you have celiac? Make sure of that. Take care. Natalie b
  14. Somethimes I have found myself unloading the dishwasher and putting the dishes into the fridge...does that answer your question about spaciness? You are not alone; however, your thyroid can really mess you up if not properly controlled. I know, I am 39 and had graves disease. This diagnosis was made when I was about 28. At 38, I was diagnosed with celiac. I am a college degreed career woman who was misdiagnosed by my old doctor for 6 years. Do not make the same mistake as me and let them tell you that it is irritable bowel syndrome or colitis. Get second even third opinions. The doctor that I had here in Pgh was extremely incompetant even though some people here thought the world of him. I got a progressive doc at presby hosp here and he saved my life. At last all these weird symptoms could be explained. Thyroid and celiac go hand in hand as they are both autoimmune disorders. If you have a doctor who isn't listening, get rid of him and demand the test for celiac. At least you know. You are on the right track. I wish you luck. Natalie
  15. Hi, I am 39 years old and very new to celiac but not new to living with autoimmune disorders, ie, thyroid disease. At around 32 I began experiencing what my gi doc told me was colitis. He then did a colonoscopy which showed that I had collangenous colitis. During that time I went from an energetic career woman to someone with numbness in her fingers, lethargy, colitis, pain in the upper left quadrant of my stomach, irritability, and severe leg pain. At 38, he did another colonoscopy and found an adenoma, it was benign, thank god, but I am terrified. After that I began listening to my inner self and got a hold of a doc at presby hosp in pgh. He was thorough and asked me every question under the sun unlike this other piece of work who put his kids through college by doing colonoscopies. Sorry but I can't contain my anger towards this highly regarded doc who couldn't do a simple blood test. Well, the doc at presby tested me for celiac and low and behold I had it. I am curious if there is anyone out there who has had colon polyps as well. I am so scared. Next May I will have another colonoscopy to see if any have dev. Is there anyone out there with these similarities? I have found no link whatsoever in what I have researched thus far. Help. Thanks, Natalie