Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

2 Neutral

About cszymanski12

  • Rank
    Top Contributor

Profile Information

  • Gender
  • Location
    West Lafayette, IN

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Thank you, and I agree completely with you on the idea that I dont want to put myself through it all again. I had a grocery list of symptoms and systems that were affected and I was so sick. I have the diagnosis of gluten intolerance by my GI right now which is still better than not having the doc diagnose me at all and having to self-diagnose. However, I wish he would have been a little smarter and tested me for celiac blood test wise before he did this so I wouldnt have been placed with this burden of choice. I Feel maybe i should suggest having the non invasive genetic testing done which is a good option but im not sure exactly if that will give me confirmation directly for celiac or not??? If anyone has experience and can help me understand that, that would be great. I have enjoyed eating and living my life little by little thanks to gluten-free, even though im still adjusting and im still not too well but I know it takes time to heal. But I understand that my doctor has pretty high suspicion of celiac but he decides this all at the wrong time. I agree it is better under some aspects to have that on paper diagnosis for celiac so you can have the insurance help. But i have the gluten intolerance diagnosis hence far so that at least will stand for something to my insurance. My mother is getting tested for celiac, but if she tests positive yes i have a pretty good chance of being full blown celiac but thats not always the case. I could just be not full blown celiac, however as we know that can turn into full blown still. I think as mentioned its ultimately the idea of is it worth it to put myself through that just for that paper confirmation? I myself refer to gluten as a "poison" to my body which im sure many of us do. THe only thing that sits in my mind is that if its not 100% sure to rule out full blown celiac and I stay with the diagnosis of gluten intolerant and dont test and I really am full blown celiac I could still potentially be causing pain to myself. The skin biopsy should help and the genetic testing, even if it is the eczema skin condition celiacs have which is of course diff because it is a severe form and I have heard it misdiagnosed before. I guess Im just really torn between the choices here because I dont want to hurt my body for a test that per say does come back neg I did it for nothing. So I would rather do the tests that are the other options that i can count on and that will not have to allow me to harm my body. This whole thing has been bothering me and if theres any advice or help I can get or that anyone else has please share, the opinions on here I trust the most.... I am glad that at least your diagnosis came through relatively quickly and you didnt have to go through the common journey many have to go through. Its also good because then you can start healing your body now and getting used to the new life style. Thanks for the advice and good luck with everything!
  2. I have been fighting this journey for a couple years now and after all the numerous doctors the one I have finally has a brain (at least one that comprehends this disease).... However, it took my allergist to push him to get to me getting currently diagnosed with Gluten Intolerance. Well my doctor is not the smartest, because why wouldnt he have just done the celiac blood tests etc. before I started my gluten free diet when he diagnosed me with GLuten Intolerance after that test. Im having a biopsy done of my skin from the dermatologist that im going to see who is thankfully been recommended to me and has experience with being able to properly diagnose the skin conditions that celiacs have. At that time I am having the blood tests done, because he cant read a medical record to see that they never did the blood test at the first GI only the biopsy which was only one and screwed me over. I am having this done in almost a month on May 9th. I much more educated on everything since I have vigorously researched, bought books, and of course all the great help on here. I know that being gluten-free can cause false neg on your blood tests and the only way is to not take the test or go back on gluten before testing. My question is how long before I have this done do I have to go back to gluten??? Also I was told and read to eat like 6 pieces of bread a day until the day of testing is that correct or what should I eat??? I dont want to go back on the gluten becasue first of all i have the diagnosis i have already and i dont want to put myself through that its awful I never want to feel like that again. I felt like I was going to heal over and die on so many days. However, I could be full blown celiac and I know its important to make sure to officially know that you are full blown or just intolerant because it can be dangerous. So I am torn between choices here. I dont think that my skin condition is DH but i could be wrong but my rashes are just unbearable. However, I know that would be an auto confirmation if it was. I also know that of course the treatment is the same for both. But they are still different and its not like I have all the tests done and they just keep coming back neg no matter what. THen i could prob just leave my diagnosis where it is. I understand its my choice but i just dont know what to do. I know there are other options I was told I could do the genetic testing and when I was reading it also said that its non invasive. However, how do I go about getting my doc to do it??? I know theres other options too but I just am so lost in what is best. I love how the gluten-free has helped my life start to come back together. I know that the skin stuff still needs to be figured out and I need to get the hang of being gluten-free and realizing all the little things I need to be careful of and watch the cosmetics issue and shampoo and all that. Im getting better each week even though I have made several mistakes but just learn from them and write down not to eat that. I still dont feel too well but I have a feeling its because it takes time as I have learned from reading and the little mess ups make an impact. Also the more gluten-free i go the better ill be most likely. But if i am a full blown celiac is it possible thats why Im getting so sick when I have a mess up??? Because I get just really sick afterwards and usually its for a whole day after. Now, if its all dependent upon how much adn wat is in the food. But I would of course worry if I am full blown celiac beyond being gluten intolerant then im actually hurting myself when im making mistakes. I at least am having the skin biopsy, but as far as the blood tests any thoughts on what to do should i do it or pick a diff route??? If so what and how soon should I go back on gluten??? I can live with being gluten intolerant because it is very similar with the exception of its few diff from full blown celiac. We all know there are so many diff variations to how bad u may be. Partial atophy or its DH which could be less GI more skin, patchy flattened villi etc. So I just want to have that for sure as to cross of my list full blown or then my diagnosis would change. Ive been having a rough too weeks so Im really sorry for just ranting but I have to get it out and no one else understands for the most part. I am open for any helpful tips, or ideas!!! I know this takes years to become an expert so the more I learn the better. Thanks!
  3. OH!! Speaking of you mentioning the test and being gluten-free for 5 weeks and then getting tested. Well I have been gluten-free of course but they are going to do the blood test or again for celiac and then he wants to do the one for the genetic thing. But I know that it will affect my test so how soon before do i have to eat gluten again before it??? My appt is for the 9th of May. I absolutely hate that I have to put myself through it and im so upset and scared to but I know if i want to protect myself and get the right answers Ill have to. Also what would you recommend I eat I know it might sound dumb, but I was told like 6 pieces of bread a day but idk for how long I forgot. Just additionally, is there anything else I should have them do as far as tests I know what diff kinds there are but I know that the doc has to make sure its the right one etc. I just want to get it all done and get results processing so I can get back on my gluten free and away from that poison. If you have ANY suggestions regarding that Im open for any that will be of help. THanks!
  4. Book sounds great I just looked it up I have come to learn that books, others such as many of us on here, and friends or family that have it are our best choices. I too had the help from a friend that has celiac and a instructor I had on clinicals in school that I still keep in contact with. I completely agree, they were the ones telling me no screw the doctors its the gluten its obvious. Screw the neg results get a new doctor fight for this you have to if you want to save yourself years of misdiagnosis and pain. So I did, I have seen numerous doctors and the one im going to see in May for my other testing with my skin etc is a new one as well. If one started to BS me with stuff that was just a trial thing to see how it worked I walked out. I knew that I had to find a doctor that was going to help. Strange you mentioned you went and ended up having you PC help you. My friend her PCP helped her as well as she got her diagnosis really fast. I am so glad that I havent given up even though I still havent won the battle and still have to have some tests and such beyond what they have already confirmed. I thought for so long that I was never ever going to be heard or feel better. And you and everyone else knows this disease makes you sick and I mean sick! I thought I was going to die for a period of time, and I didnt have as bad as some with osteo, and everything else and for my immune system alll that I was experiencing was enough including the liver problems I had with my enzymes all because of Gluten. I love that I feel like everyone on here is like family and were all in this together and anytime we have a random question someone always has an answer its great. Then when I do have children some day in the future depending upon my PCOS but I will put them on gluten-free as kids if they arent already coming back positive for celiac or intolerance. And the nice ironic thing is your friends and family learn so much about it through you because they have to kinda cater to your needs. Again I appreciate the super helpful advice.! Part of it for me is because im only in my early 20's and this is a huge change cant do the same types of things I was used to and especially at least right now and from what i have heard I wont be able to wear dresses like I used to if I go out with my friends or my boyfriend. I guess its all dependent on the person and how bad it is. I know my mom cant wear shorts ever becasue her legs are so bad and so scarred. But as long as Im happy and can eat and enjoy it without the suffering and have energy again i am willing to sacrifice anything small or so i need to. Take care
  5. I couldnt agree more I think that the rest of the house needs to be free of gluten as well. Not for the temptation but more the sneaky little things that get into our food and things we use that make us feel icky. I have thrown away almost everything, still working on accepting that I have to make a new life. But it is well worth it because its not worth feeling so sick and horrible everyday with all that. I think thats the hard thing is going to be getting everyone to convert or be open to slowly progressing to going gluten free. But I have a few friends that I became close with that helped me get to where I am now that are celiacs as well. Both of their husbands are gluten-free and they actually dont like the taste of foods that have all that gluten and other stuff. I think the biggest thing is realizing that literally everything you need to get rid of. My hand soap, hair spray, everything and I didnt know that I really had to go to those extremes. But all of it really makes things alot harder if I dont. As you said it will get easier as I go along. I will learn the bad and the good. And instead of getting down, write it on my list of No No things and keep going. I think the manner of this entire disease and dealing with it is about strength. We are all strong individuals for having to go through the grocery list of symptoms and go through them daily for years etc. Having to go through the tears and pain from getting told there is nothing wrong with us. Until we finally get our answers. We have all never given up hope. I feel that the support here keeps us all going. I don't know what i would do if I didnt have an outlet when I feel like Ill never get through this. I hope things continue to get better for you, for what its worth for how ever long you have been getting through this you shared great information with me it was greatly appreciated!
  6. Thanks so much!. Oh my I just looked and yes this Aveeno has the oats no wonder why Im feeling twice as bad using it. Im stopping it immediately and im going look into that lotion you mentioned. I get so angry when I realize things like this. Its hard maybe because im so new at it. But I am making the little mistakes with things that are small but are the source of some of my problems. Im trying to work on being better about really understanding everything that is in the product I am going to eat or use for my body. I know that it takes time and patience. Its just disappointing when you realize what you have done wrong and that you need to be more careful. I have learned that not everything that is gluten- free is truly gluten free! There is sometimes still wheat or other hidden ingredients. I am trying to get together some of these recipes and cook for myself so that i can be sure. Or purchase the brands we trust like UDI's etc. I understand what you mean with cosmetics I think its best to hold off on those until the skin calms down and heals. I would rather wait then try to use a product too early and then it cause me more problems. I will have to check at those other posts and see what others have said about the cosmetics and DH. Im hoping for the lesser of the two and that its the eczema/psoriasis that we all tend to get with this health condition. Thanks so much for the advice especially with the Aveeno!!! I hadnt even thought twice since my allergist had recommended it for me, but this was of course before I got the rest of my results for my diagnosis. I should have asked about it, but now I know thank you!
  7. I am familiar with food its a good one that you do not have to get a prescription for in order to have your kitty on it. I am still in the process with getting used to everything myself and I have realized so many little things can cause a fork in the road for complete recovery. I am going for a biopsy of the rashes i have in the next 2 weeks to find out specifically what I have so I can get on a cream or something to help. I did not realize how my shampoo and body wash all that was making a contribution to everything as well as my cosmetics, toothpaste etc. I havent gotten a new cosmetic like my coverup because im not sure what my options are? Do you know of any that would help ? I am using johnson's baby shampoo and such and i have the safe toothpaste now and i put aveeno lotion the one with ceremides that the allergist said to get until my appt. But I am not sure what everyone uses as far as hygiene products to help with all this??? Im open for any suggestions, and i seriously cannot wait til they get this rash looked at by the dermatologist and tell me exactly what it is. I am not sure if its DH its pretty bad but I know its common with what we have to have that severe eczema/psoriasis I just want to be able to wear t-shirts and such because its awful right now that I cant. Glad that your kitty is on good food and that you figured out the source of that problem All the stories and tips that everyone puts on here are very helpful because some of these things you don't even pick up on until you realize it.
  8. i read your little story and I have a suggestion that can be of help. Im a veterinary professional so I myself had to pay attn to my cat's food and treats. There is a diet call d/d venison and sweet pea both dry and canned cat food by Hills. Its prescription so you will have to see your local veterinarian to be able to get it. My one cat actually after I tested him at my facility I placed him on d/d because he has horrible allergies is allergic to everything and he does great on it and there is no wheat starch etc. Even if your cat doesnt have allergies necessarily they can still be placed on the diet, if you explain your needs with gluten free the vet can help you. I placed my kitten who has no allergies on it as well because of my other cat cannot eat anything but his food because hell have horrible itching, diarrhea and coughing episode later. Then i have to calm that whole situation down and he has grown wise to sitting still. Also, it makes life easier for me and not having to worry about contamination. There is also d/d that comes in duck and sweet pea but alot of kitties love the venison. There is also z/d which is a completely hypoallergenic food. It has a very interesting consistency but kitties that have really sensitive cases can be placed on this. There are also hypoallergenic treats by Hills that you can purchase also cats go crazy over them and they are safe for us to handle. All of these diets are also available for dogs. I just figured if in the future you will be looking into something like this I would give you options.
  9. I actually have a question regarding eating gluten again before you are going to get tested which for me will be the second time. I am non-celiac gluten intolerant but my GI wants to do the tests at his office so he is comfortable with my diagnosis. I dont quite understand why he didnt just do them and then have me get the other tests but he seems to do everything out of order. I am content with what my diagnosis is currently and its the same treatment I never wanted a serious diagnosis and as long as I get to my old self I didn't care. Little by little I have been feeling so much better with gluten-free and the elimination of the soy which i had no choice and lactose. You guys were right its remarkable how much better you will feel. Do you have a suggestion on how soon before Im going to get tested I should start loading up on gluten? I don't want to go through the battle any longer than I have to, I have read and heard that 3-4 weeks before you should go back on it but I figured there might be variations to that. Also, I know this might sound strange but for the best interest in getting the most accurate results possible is there anything that is recommended to be eaten specifically I was told bread by a friend that is a celiac she said like 6 or so pieces of bread a day. I have a little over a month until my test again so I wanted to make sure I would ask since I always can count on everyone here for help.
  10. I just read your comment and this book sounds like a great one. Do you have any suggestions where I would have the best luck to find it like amazon or any stores?? This would be a huge help for me since I too am non-celiac gluten intolerant. I have become very fond of reading these books and they are also very comforting. The one that I also have that I love if you look at one of my responses I placed above I think you would also find helpful since it gives you so much helpful information and helps you understand the difference and how to best manage with which ever you are diagnosed with, even though they are very similar except for the true celiac has villi atrophy which i seen u also mention. Just a suggestion Im willing to share my resources with everyone.
  11. There is both the biopsy which so many doctors love to call the "gold standard" which it can be and there is the blood test which will test for the antibodies in the blood. Yes you can have neg results and still be a celiac, however there are different variations to that. My post above yours explains partially about testing and I know many of the more experienced members can elaborate on that for me and explain that to you a little better I do not want to mislead you with the specifics of the blood tests. In some cases researchers have found that celiacs can primarily appear as gluten sensitive first because they have not had the length of time for their villi in to become flattened and its caught early enough. If left untreated then there is a grave possibility they can/will become full blown celiac. However, they have still seen some that are GS and go gluten-free and later in life are then full blown celiacs. I find loop holes in some of the research sometimes but its a growing process still. The sooner you go gluten-free the better you will save yourself so much by doing it. I cant speak for much because i didnt go decades of being misdiagnosed but years in my case and you only will get sicker. Its not worth it to be too late. If it is the case where the symptoms are showing up as celiac but the test results are neg you may have an early start to save your body the extensive damage and its in the best interest to go gluten free. I would suggest trying it and see how it works for you, which im sure you will see the difference. WHen going gluten-free it takes commitment so you have to really be careful and stick to it and its hard I am still dealing with the emotions of the life change because Im only in my 20's this was not how I pictured things. You need to start to get yourself better. Im not sure if you have had any testing at all yet?? Biopsies?? If not and you are scheduled to get them soon or you think it will be soon wait to go completely gluten-free until after the blood test because it can cause a false neg because it will mask your symptoms and will then cause a "error" in your test. The more you know the better off you are especially becaue if you havent already learned you will that doctors are not very good with diagnosing this disease and the repetition it takes to catch it at the right time and in the right manner. But trying gluten-free things just to see how it reacts with you I suggest if you havent gotten the ball rolling with tests yet. Hope this helps, good luck
  12. Reading your post brought me back to not too long ago how I felt/still do feel. It is something that many don't understand besides those who may be going through it. The most unfortunate thing is that the patients (us) know more than alot of these doctors. There is so much research continually being done to try to help those who are fighting for their diagnosis and better health to find it sooner rather than later. Im in my 20's now and I cant tell you how many doctors I seen. Each time walking out of the office in tears wondering if I really was crazy. I researched everything and I educated myself because I knew all along that was what was going on with me. I had friends who had it who pushed me to keep trying to get a diagnosis and that there was a doctor out there that would help me I just had to find them. My diagnosis is still in its process even though its been almost a little over a month since I was diagnosed. My GI actually didnt even end up diagnosing me my allergist is the one who pushed the matter and the tests. I guess having another doctor push my doctor helped a little. I am having my biopsy redone and my blood test in upcoming may so that my GI can make see from him doing both things that I am coming back as positive for celiac or not. Which, if those come back neg it doesnt mean that I necessarily am not celiac. I have the confirmation that I have GS right now and thats enough for the time being to give me a small amount of closure. There are sooooo many different ways that celiac disease is misdiagnosed or the tests are improperly being handled, selected or interpreted in regards to the patient. If your biopsy is neg it may not be a true neg. You may have patchy areas where the villi have atrophy, or if you have only partial atrophy the blood test will not pick up on it and it will come back neg. My friend's mother actually had villi atrophy in her colon that her GI found. THere are several tests for sensitivity including the stool/mucosa, and that ENTEROLAB test is very reliable and I would recommend it I myself had often considered it. There are also other sensitivity tests that can be used. THere is one other method that I have heard very little about being used specifically because its invasive. A tube is swallowed by the patient and the GI takes a sample of the intestinal fluid and very often they find the antibodies in there as well. You know your body better than anyone do not give up just because someone who wears a white coat with a degree and has the title to diagnose you stop you from getting better. I have nothing against doctors because there are many who will help their patients but that number is so small. I myself am in the medical field I am a veterinary professional and we treat our patients with the very best care and no diagnosis is left out nor unsolved. I am so sorry you are going through what you are going through, however, you are not alone and many of us have been in your shoes and still are at one point or another. Everyone is here to give advice and share the knowledge that we obtain as we get stronger in dealing with this. Many have also self diagnosed themselves and NO that is not at all a bad thing to do. If the gluten-free is working then screw the doctors I dont know how many told me that on here and regardless if I would have gotten a diagnosis or not I would have done it myself. I have other health relations aside from this now and I imagine it only getting worse if I was untreated. You will be surprised how things unfold in the end. A allergist and the nurse practitioner are what helped me get to where I am and I never imagined that. I was placed in the hands of a better doctor who is doing so much more for me and has found me a proper dermatologist to take biopsies of my skin. I have medication for my IBS and I see such a difference. Even though Im no where near out of the "fog" here I am somewhere further than before. gluten-free is what has saved my life and many others as well. I now cant have soy either or certain types becasue I found out it triggers my IBS. My advice is any questions you have ask them on here I have just been amazed how much help I had gotten and my dear friend who has been a celiac for a good 5 years now helped me immensely. I learned so much including that I had to get gluten-free toothpaste and to use Johnson's baby shampoo/lotion to shower because of the rashes being opened and the risk of the reg products and cosmetics i used getting into my skin. There are also several books and I HIGHLY recommend them they are reliable hence far in my experience and I love them. THere is one that is wonderful its call "The Gluten Collection" by Shari Lieberman. Its fantastic Im serious it has extensive information on Gluten sensitivity and celiac disease as well as the differences. Most importantly the very many things that celiac is misdiagnosed as case studies of examples and recipes, ingredients to stay away from and the good ones. ALso tests and so much more its honestly like a bible to me I refer to it so often. And once you start to get the hang of it which is my current issue because its been so emotional for me is the food. THere are so many gluten-free options now and stores have sections in them and stores are supportive of us and the food is actually very good and regardless I wouldnt ever go back to what I had before because of how god awfully sick I get its not worth it. Restaurants are also steadily adapting their menus to celiacs as well. You can still enjoy food u used to love u just have to find the safe version of it which is what is hard for alot of us. I loved bread and its so frustrating to not be able to ever eat my italian bread again but my gluten-free bread I have made my favorite now because I know that its whats best. I hope this has helped you and I hope you get to feeling better soon. I still am not myself but slowly getting there it takes a while and your body may still get ill on gluten-free but give it some time. You will be amazed how everything you have been experiencing pieces together to this source and its scary at first to think that gluten can be so poisonous to our bodies. My mother was tested and she tested positive and shes almost 60 now and shes been so sick but never got help she learned to live with it and now has osteoporosis, anemia, arthritis, and IBS almost IBD now etc. THose of european nationality have a predisposition in a form as well. You dont have to be born there but someone down the line was. In europe now everyone is tested for celiac disease and there is a Codex law which inquires that all food labeled gluten-free is gluten-free 100% and free of wheat etc. guaranteed and most food there is gluten-free now. I am 50% Polish and 25% German all makes sense to me now. And this isnt the case with everyone just another thing that can vary from case to case with celiac. I apologize for the extensive response but I want to help others as much as I can especially since I myself am still learning. Feel better soon
  13. Thank you! I will have to try Kroger, I am more than open to go wherever I can. I feel like it is different with each and every one of us what we can tolerate. We all at least have in common that gluten is an absolute poison. I feel it is just super hard to get a grasp when buying something because Ill see its gluten free and want to get it but then I realize that I need to look closely at the other ingredients because of the soy issue and such. I noticed on some products also its the wheat that sometimes can be easily missed too. Its these other names that they have on the ingredient labels that trick you because it doesnt just say wheat or oat etc. I feel like I am going to be playing it safe for a while but I dont feel like thats a bad idea. Would it be a bad idea to get a nutritionist?? I have read that a few on here have had them but havent heard the opinions on how well they have worked or not. I have learned that mexican food is ok in some cases. The corn tortillas and such are ok. The ground beef is not something to get because of the thickeners they put in the sauce with it. I heard a few other things on the menus that are ok as well. However, for many of us there are still lots of restrictions with the condiments and I personally dont do very well with salsa and now starting gluten free im not even sure if thats safe. I know it was always a bother for me because its spicy and with my GERD it caused a lot of irritation and made it worse. I feel like I have so much to learn still. I also have learned that flour is something I cant be near. I mentioned on here once that I was making cupcakes with my roommate and the flour slit out of the bag and some got on my arms and my thighs and my rashes were horrible I couldnt believe it within hours what had happened. Are there any problems with nuts or any specific kinds of nuts?? Any certain kinds of chocolate?? Sorry for so many questions Im just thinking about the things I liked every once and a while and I am hoping that there is a way to still enjoy them in some way.
  14. Hey everyone just an update here. I went to the grocery store and got my start on strict gluten-free foods. I got rid of everything that I had that I knew was going to be tempting. This I mean in the sense of just the foods all being in my pantry and missing being able to eat those things. I wont go back now because feeling like your going to die is not worth it to have that cookie etc. But I just had such a hard time shopping. I went alone but I have these books I bought that are supposed to help with grocery shopping. It is just so overwhelming because Im flipping through the pages and trying to see if the couple ingredients Im reading are ok or not. Its easy when it says gluten-free but some things are not so easy. I wanted to get pasta sauce for my gluten-free noodles but I didnt know what kind to get I seen organic but I seen some ingredients that I was iffy on so I didnt get it. I also am eliminating soy because it has been a big issue for me as well. But I feel like Im never going to get the hang of this. I took like two hours and I didnt have a ton of food when I ended up leaving. I got basic things like pretzels, the Lara granola bar things, UDi's bread and cookies, popcorn, mac and cheese, cereal, banana chips, peanut butter and some other gluten-free things which I tried to get the soy free as well. I really love UDI's bread its soy, gluten, nut free. But I did get some fresh fruit and veggies like carrots and such. I am going to keep nightshades in my diet and see how this all goes. Thankfully I didnt have a problem getting the meats I enjoy chicken and turkey but I honestly played it super safe becaues Im scared if I get something and what if it has something in it and I get super sick again its a constant fear in my mind. Also I have a question I made a grilled cheese sandwich today on my UDI's bread with cheese but I felt bad after. I additionally was constipated this evening and with my IBS thats just a battle I hate fighting. I am wondering is it better to get the unprocessed cheese then?? If anyone has any tips for shopping or foods that are safe that can help me expand my current selection that would be greatly appreciated. I did notice betty crocker had some things i was pleased. But its def not cheap I can say that. I thought back to how I used to pay like 1 dollar or 1.50 for a loaf of bread and now pay 6 dollars. I of course understand why it costs so much its just both an economical and emotional change for me and ill take all the help I can get. I am just concerned a little at the end of next week when I go to the metabolic specialist if anything will affect my testing. If this doc kicks me to the curb I am just going to stop there with the diagnosis fights. I know that I have it and the gluten-free has immensely helped my symptoms. Today was my first day of ALL gluten-free and I started crying when my mom called me because I felt like I had just been granted a wish that I thought was impossible. I know that I may have to still tweak the cheese and other things and get started on supplements especially Iron prob because I know I have been anemic that all the doctors have agreed on. Its something that you almost feel you couldnt tell anyone else because they wouldnt believe that almost all of your symptoms and things causing u to feel like your going to die just fade. My mom is getting tested next week now as well shes way worse than I am shes got severe osteoporosis and IBS, migraines so bad she is in the ER when she gets them and Immetrex (i know thats not the spelling) doesnt work, and she has horrible arthritis and I have no idea what else. She is sick all the time its awful. I hope my mom gets her diagnosis and can start treatment along with me even if she has the diagnosis and not me. As I have said on here before my entire moms side has super bad GI issues and her, my aunt, and grandpa had hip replacements. She cant even wear shorts anymore because of the blisters she had/still gets on them and her lower back. She just learned to live like this she said when I was talking to her about it. Who knows my dad's MS may not be what its said to be either even though I actually think he really has MS. But sorry for the rant, I would like some advice on this diet and supplements as well I feel like theres so much coming at me. Thanks everyone as always!
  15. I am going to the store with my friend who is a celiac tomorrow! Thank you everyone. I feel like I have a extensive network of family on here almost. It honestly would top anything a doctor could ever present compassion upon. I additionally send out prayers and hope for anyone else who is going through this beginning stage, and those who have been fighting it for years or their whole life. I trust what I hear on here from everyone more than I ever would a doctor. So no point in wasting money. I know its going to be rough a big change for me. However, I would trade it for how I am right now. There are lots of resources, friends, and the extensive wonderful people on here that are so kind to share their advice and tips to help others. I hope sometime down the line I will have that knowledge and be able to help someone who I will see is in the shoes I am in right now. I will still see the specialist, but Im going to start my diet because everyday I wait is another day that is causing damage to my body. I can always go back on it briefly before the test is done, and the villi dont heal that quickly usually months from my understanding or longer so if it is going to test positive it still should. Either way like others have said the test is not and have been proven to be extensively wrong. I am glad that many agree on that. If the diet is working then that alone in itself is a fair enough answer. I can always take out soy, nightshades etc if I am still feeling ill. I feel i will need to do soy as well with the gluten it is causing issues I feel as well. i am going to jump into this tomorrow I hope that I can start to get the hang of it all as time goes on. Thanks
  • Create New...