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Everything posted by melprkr

  1. Hey Palmtrees450, You are not alone. I am going through the exact same thing right now. I thought it was gone but unfortunately I ate something else that has triggered it again. After reading another article on here I am starting to think it is rice...yet one more thing to eliminate from my diet, have already given up dairy and corn, now rice. I have super high anxiety. Doesn't matter who it is or what is said I am over emotional and really struggle in day to day functions even down to just folding a basket of laundry. I do have Xanax but that doesn't even help anymore. I have actually stopped taking it because of that. Only thing that helps is time, rest and drink plenty of water. The rest helps me more because then I get to be still and not think about anything. Hard to function when you have what feels like 15 people in your head at one time talking to you but it is only your thoughts rushing through your mind. I truly hope you feel better soon. Just be cautious out there. Even down to making sure your kitchen is clean and that all of your utensils, plates, pans, etc. are washed extremely well as sometimes I feel like this is where some of my problem comes in at but I haven't figured all of that out yet.
  2. Brain fog is a common symptom. I had a hamburger patty from a local restaurant and am suffering the effects. Sometimes mine is bad and sometimes it is mild. This one feels mild, provided I am not "glutened" again. I have the exact same feelings when I am contaminated. I actually had 2 good days this week to ony have to go back through this again. The first day is just tired and want to sleep, but as each day goes on it seems like all I can do to concentrate and do anything. TV is OK but for me just standing up or moving sometimes makes me dizzy. Luckily I don't have the nausea but even sitting still I feel like I am in a swimming pool moving. You know kind of like when you were a kid and you got in the pool or went roller skating but then got out and and you still felt like you in the pool or skating? The anxiety and the depression is the worst. I am taking things to help with it but it doesn't always help. Only thing that seems to help sometimes is just going in to my room and laying there and not moving and just going to sleep. It will pass. Just be cautious about everything. I have opted to let my family know that I will bring my OWN food when we have gatherings. I don't mind being the odd man out because I am already the odd ball. One thing I have learned and that is people mean well but mistakes happen and we are the ones who have to pay the price. Hope you feel better soon.
  3. Everything I have learned I have learned through this forum or simply from my last EGD results and labs and then looking them up on the internet. The drs have given no information except for do a gluten free diet. My understanding is that a repeat EGD is needed to confirm healing. When I was tested about this time last year I was a Marsh3b. Which in my research is pretty serious. I am still having ill effects from god only knows what these days. I went strictly gluten free June 2015. I have had glutenings (not by choice) and the last one I had was because of an antibiotic that I took that has sent me through the roof with anxiety issues. I try to be as careful as possible but it is like it doesn't seem to matter how careful I am I am either aching and hurting in my joints, tired all the time or OK one minute and the next feel like crap and that my world is about to end. It is very frustrating to say the least when you go to the dr and you are expecting support or some sort of answer and don't get one. I have eliminated milk from my diet as of about a month and a half ago. That seemed to help, some. But I still have days where I hurt and ache in my elbows and in my hands. I have moments when I am about to freeze to death and sit with a heater and where I live the temps outside are 90+ degrees plus humidity and the AC is not even on. Most of this has just started happening I would say in the past 4 months or so. At night when I go to bed I wear sweat pants and a sweat shirt and sleep under 4 blankets and a sheet. They say my thyroid is fine. I feel like I have some issues with my nervous system but to be honest with you I haven't seen drs enough to mention this to them because all they are worried about is if I have diarrhea. Cycling Lady I will be keeping any all records that I have and continue to gather the ones for anything I have done in the future. . I have been through health issues with my husband and would keep all of his records and labs so we would have proof. Just seems like doctors don't care anymore. The last GP I went to actually listened to me and I will see her again next month after the EGD. I did give ALL of my records, EGD, labs, medical records, etc. to the new GI prior to our first visit back in January. She said she reviewed them. And told me we would re-draw the labs and schedule EGD to check healing when I went to her this month. We have scheduled the EGD but no mention of labs. JMG I am having the procedure re-done so that I can see if I am healing. Mostly because of all the ailments I still have or seem to be developing every day. I used to be a person who could remember things and get things accomplished but lately that has not been happening and scares me more and more every day. I understand that no procedure is risk free. I have had 2 C-sections, wisdom teeth removed and tubal ligation. Each one had its own issues after they were done. I am a person who has to see it to believe it I guess. If I don't see it, it is hard for me to understand it. It is hard to figure this out when I am the one who usually takes care of everyone else but then when I need to be taken care of, nobody knows what to do. I think that is it in a nut shell. All that ya'll have told me is a big help. Around here I have no support groups or even a good friend I can talk to about stuff that would even come close to understanding. My husband will listen, but he doesn't understand.
  4. Thanks so much for all of the encouragement guys. She really did make me doubt. But after going back and reviewing all I know and all of the records I have obtained and kept throughout this last year, I know I have Celiac. I will allow her to do the EGD only because I don't want to have to wait 6 more months to get in to see someone else. But I promise you that if I continue with her after this there will have to be an understanding. Really all I need her for is the confirmation of healing or not healing. As far as treatment, not so much. I know gluten-free is the ONLY treatment. I really didn't think I would run in to this but guess I was wrong.
  5. Just had my 2nd visit with a new GI doctor I started seeing earlier this year. I was diagnosed with Celiac by another GI in June of 2015. Wasn't happy with him because he said he "might" diagnose only one celiac per year. Told me to just do gluten free and sent me on my way. Diagnosis was with EGD biopsies as well as celiac panel. If I remember correctly (only because it has been a year ago) my biopsies showed Marsh 3B for villi damage. This new GI told me yesterday that she was going to re-do the EGD, which I agreed with, but then she added "so this way we can really determine if it is Celiac or if you are just gluten sensitive and might just even get you to add some gluten back to your diet." My response? No way will I be putting gluten back into my diet in any way, shape or form. I explained to her I know what it does to me. I have determined that the only service she can be to me is to do my EGD's and give me my results. This is ridiculous. You go to a doctor and you have prior results showing the damage. But they still want to try and get you to "gradually put gluten back into your diet". How moronic can you be? You are supposed to be helping me feel better, not worse. I have already had to eliminate milk, by choice because of constant aching and swelling in my joints. Which I did explain this to the new GI. All she seemed to be concerned with was diarrhea, but I told her I do not have the diarrhea. Only time I get that way is when I have had milk and then I have bad gas pains, bloating, etc. then can't eat for several days because every thing (regardless of what it is) sets my system into a tizzy. I can see why people get so frustrated. I don't understand why doctors just won't listen to you. And it just hit me that she didn't even order new labs to check my tTG-IgA. Go figure. Guess she will do that after the EGD. My specific question to her nurse and to her when I first saw her was do you treat Celiac's and the answer was yes. Starting to think this won't be the doctor I stick with. We shall see after the EGD is done. Feeling even more frustrated now than when I was first diagnosed. Does anyone else have any recommendations? I know I have heard stories where people have gone through several doctors. But it just seems like a waste of time when all they need to do is check for certain things. What good is it to go to the doctor if they don't know what to do with the test results. Can anyone else share their story for when they were first diagnosed until they found the right doctor?
  6. Thank you for the advice cycling lady. Where I live there are no such things as gluten free restaurants except of course my home. Have you found that each glutening is worse than the last? I am trying to eat at least every few hours to at least give my system a chance to heal. I have found the anxiety isn't near as bad after I eat.
  7. I was diagnosed Celiac in June 2015 and have been trying to make this gluten free diet work as well as possible. I have just had a round of antibiotics for a bad tooth, my son broke his arm and during the trip to the ER, we stopped and I was glutened by what I think was cross contamination from some fries because it was late and the place was getting ready to close. Mind you all of this was about 4-5 weeks ago and I am still feeling the effects. Mostly from the anxiety and the not wanting to eat. I was just curious if it is worth treating the symptoms that go along with the glutening or does it help at all? I have seen some who say it is and some who say not but I would like honest opinions here. This is the worst glutening I have had by far and am really hoping things get better soon. Any information ya'll can give me will be a big help. I have read and read and read until I can't read anymore but most of it is from way back. I know things change and the way people look at things change so any advice will be more than useful to me right now.
  8. I have just gotten over a glutening. This one was NO FUN AT ALL, as I know none of them are. But this one really took me back. Worst I have ever had. Anxiety was through the roof. It took mine about a week to show up full blown. I had small symptoms along the way. It wasn't until a few days after having a weeks worth of anxiety what was actually going on. I have done the same as you before however my symptoms were not near as bad. This one came from actually ingesting what I thought was safe waffle fries. I have been dealing with this now for about 3 weeks and am finally starting to feel more like me. Hopefully yours won't last like that especially since you have been gluten-free for so long. As everyone says we can all make mistakes. You just have to focus on getting better, because you will get better.
  9. I had been having some issues with a bad tooth and the dentist gave me a prescription for Amoxicillin. Seems like every day this week I have felt glutened in some way. Have pretty much finished the antibiotic but was wondering if anyone else has had the same reaction after taking an antibiotic. My stomach feels like it is in knots, I don't have an appetite, I don't think I have come in contact with gluten as I try to be extra careful. It is almost like my anxiety level is at a 10 and I can't focus like I could just over a week ago. Anyone have any suggestions?
  10. I feel that way as well when I have been glutened. Have gone as far as only having my food cooked in my own pots and pans and even use just my utensils that don't come in contact with gluten. Makes a difference, until I accidentally get glutened then can't figure out why. Glad you are feeling better.
  11. I have just been prescribed Vimovo and am curious if anyone else has had to take it and had good success with it as far as actually working and being gluten free. I am coming up empty handed and it will be tomorrow before I can call the mfg regarding it gluten content (if any). I saw a post from back in 2014 about Vimovo and it was somewhat saying it was OK, but was wondering if anyone else has had any success.
  12. I have gone about a whole week and have been having trouble feeling rested after a full nights sleep. I was accidentally glutenend a few weeks ago by a mere handful of French fried onions someone put in something I ate. I unfortunately did not know they were in there until a day or so later when I couldn't figure out why I was all of a sudden feels no bad again. Seems like ever since then I go to bed tired, go to sleep ok but wake up like I have just worked another 10 hour shift. Does anyone else seem to do that? I usually only have insomnia if something bothers me emotionally but with this I feel like I dream all night and can generally remember my dreams. I just feel like I have moved all night but yet stayed right there in my bed. I do not have RLS (restless leg syndrome) as my legs do not hurt and the covers are not strewn when I get up the next morning. I really would like just a few hours of peaceful sleep again.
  13. After being recently diagnosed with Celiac, and the more reading I do, the more this is getting to be a lot of information. After going strict gluten-free almost immediately after my diagnosis I started feeling much better within just a few days. Actually had a couple of good weeks after that. Accidentally ingested gluten and wham back to square one again. Seems like I have been getting "accidentally" glutened at least once a week in the past several weeks or at least it feels that way or there is something else going on. I have tried to be extremely careful all the way down to only eating things I know that I prepared or have had someone prepare under strict instruction to make sure NO gluten or gluten containing items are crossed with my food or food prep area. I have been trying to eat the simple foods as recommended however I still feel like some days it is all I can do to go or even think straight even though I know the food I ate was clean. I do love tomatoes and eat lots of potatoes and now as I do the reading these are considered nightshades and may be having an effect on my system instead of the gluten at this point. Can anyone shed some light on the most common nightshades? I see lots on the internet but some of the information does not have dates by the entries so of course it is hard to distinguish what is real and what is false. I am still having issues, mostly now in my joints. Some days better than others, and the depression is still there a good bit. Haven't figure out yet if that is just from having to decipher all of this stuff or if it is just the disease itself. Also would like to know, can't you just have allergy tests done to determine if you are sensitive to these foods? Just curious since it mostly is an allergic reaction but don't see where anyone has ever done allergy testing other than within their own home to eliminate things that may or may not irritate them. Any information or places I can go to that are trustworthy would really be appreciated.
  14. Made some vegetable soup yesterday and was "assuming" Veg All was gluten free. I looked at the can and the ingredients and all seemed to be fine. However I was wondering if anyone could tell me for sure that it was gluten free?
  15. Thanks to both of you. It is so hard trying to figure this out. Lots of good information online about food, etc. but it is still hard when the flare ups do happen. Was just so funny how good I felt yesterday then to wake up this morning and feel bad again. I thought the sick part was over because it usually lasts a few days if I have a small exposure to it but apparently I really did it good when I had something on Saturday that had gluten in it. Will definitely keep in mind that I will have good days and bad days. So glad to have a site to come to and see how others react, etc. and compare because it is hard trying to figure this all out on my own. We are in a rural area and I am not 100% convinced my doctor is aware of too much with the celiac.
  16. I ate a Popsicle Brand Grape popsicle last night and at about 1 AM this morning I felt like a mack truck had hit me, hard. I see on the Popsicle website that only 5 of the Sugar Free ones are considered Gluten Free but when I reviewed ALL of the ingredients on the box for the Grape, everything seems to be "safe". Can anyone enlighten me to what I am missing? I have contacted Popsicle for information as well. I was recently diagnosed approximately 2 months ago and am really feeling much better but can tell when I have eaten something that has gluten in it. Just can't tell if this is a residual effect from accidentally eating gluten a few days ago, as I felt great yesterday, or did the grape popsicle do this to me.
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