Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Thursdaysangel77

  • Rank
  1. Update - All of the parasite, H. Pylori and other tests came back negative so my Doctor is sending me to a GI doctor for a colonoscopy, endoscopy and biopsies. Mainly it is to search for Celiac Disease but it is also to look and see if they can find anything else wrong, in case it isn't Celiac, though my Doctor seems to think it could likely be Celiac. The appointment is set up for February 17th, so around three weeks away. That is not the date of the procedures though... I think... I think it's just an initial appointment where I'll meet the GI and talk to him about what is going on, etc. Any advice or info I should know before this appointment? ~ Thursday
  2. Thank you for the reply. I will read the thread you linked me to since I am not sure which one you were saying yes to... ~ Thursday
  3. Hello everyone, I just have a question because I have seen some conflicting information online. So I was wondering, is it possible to have negative antibody tests and a positive biopsy? That is of course prior to going Gluten Free, as it would certainly be possible at that point. I am just confused because I read that Antibody tests can only confirm you do not have Celiac Disease, which indicates that false negatives are not possible? But I read elsewhere and always thought that false negatives were possible? Are false negatives only possible if you've gone gluten free before testing or are false negatives also possible if you are still consuming gluten? My doctor told me if the test came back false that it doesn't mean I don't have it, but according to this article http://www.uchospitals.edu/pdf/uch_007935.pdf a negative blood test confirms that you do not have Celiac. I am so confused. Any information to enlighten me would be a big help. Thanks! ~ Thursday
  4. Hello Corabelle, Yes, I agree with NoGlutenCooties, we really need the reference ranges used by the lab that performed your tests. I will add to that though, that there are quite a few more blood tests that can be useful in evaluating Celiac Disease and if you wanted, you could consider asking your doctor for a more complete panel. If you do get the other tests ordered, just try to eat as much gluten as you can tolerate up to the day of testing. Have a piece of toast or cereal for breakfast, a sandwich or sub on regular bread or a regular bun for lunch, pasta for dinner, or soup with noodles and regular crackers, etc. Just a suggestion, eating gluten containing foods, while it may make a lot of people sick, it's not very hard to accomplish. Even cheeseburgers with and some without buns from fast food places or restaurants can contain gluten. If it were me, personally... I'd try to have something containing gluten at every meal or roughly three times a day until my tests were done. I myself am chomping at the bit to go back to being gluten free too, but I am choosing to wait until all my testing is done. Though many people just go gluten free and enjoy how much better they feel. It really depends on how important it is to you or or family and the present situation... to officially get diagnosed or figure out whether you have Celiac or NCGS. For me, it's important that I find out if I have Celiac or NCGS or a different AI altogether. For instance, I have several 1st degree relatives that have symptoms of Celiac but no one else is in a position to find out, so if I find out... and it turns out that I do have Celiac, it will make it more of a priority for them to undergo the testing as well and quite possibly help them to feel better. Good luck and I hope they figure out what is going on with you and your son.
  5. pricklypear1971 - Thank you so much for your reply! It was like a light switch turned on when you said that I "Went Into Remission" - During pregnancy! I had no idea that AI's could cause remission during pregnancy, nor did I even make the connection that I could've been in remission. All I knew was that I felt incredible while I was pregnant, I had an amazing pregnancy and for the first time since I had gotten sick, I was able to gain weight! Eat dairy, eat anything I wanted actually... and not be sick at all. My insomnia was cured, my circadian rhythm immediately fixed itself, my depression vanished, so did my anxiety and panic attacks. I felt healthy and young, like a teenager again. I was upbeat and energetic. Being pregnant made me feel 20 years younger, lol... and that sounds silly since I am only 27 but I've felt more like 40 or 50 years old since 2009. I didn't even go through morning sickness really during my pregnancy, lol, I thought it was really odd that I had more nausea before I was pregnant. You are right, I should have a complete thyroid panel too and more seriously pursue the possibility that I do have an autoimmune disorder. I was thinking of giving up... I know that all of you wonderful people on this board understand how hard and defeating it is when you're told for years that you're fine. My anxiety was such sudden onset I can tell you the exact month it developed, November of 2009. I seen one Physician's Assistant in 2010 who made me feel so bad... He told me everything was in my head, caused by anxiety and to go on meds and go away. I stopped seeking answers for a long time after that. But I know he is wrong. It's just hard to keep hearing "Everything is normal." - It's easier to just suffer in silence. pricklypear1971, if I went into remission during pregnancy, could I have immediately went out of remission within a few days of having the baby? I guess I am just wondering if that may have been why I got so sick and suffered so many complications after having my son. To be honest, if it weren't for how terrible things were after having my son, I'd have another... but it really was terrible. I swelled up about 5 times my normal size, I was so swollen and so much heavier than I was just 24 hours earlier, that I could hardly move, walk or lift my legs. I had to literally use my arms to pick up my legs and I could hardly get around or get out of bed or get to the bathroom... it was like a night mare. Otherwise, I'd totally have another but I'd like to figure out what is wrong with me and get it under control and treated first. NoGlutenCooties - Thanks for the input, I'd like to go ahead with the biopsy and EGD since my doctor would like me to have another Colonoscopy. If he orders the Colonoscopy, I'll ask for an EGD and Biopsy too. I will definitely ask them to take at least 5 or 6 samples. Last night I was thinking about my sisters third child, he is only 14 and has had a lot of injuries, including two broken wrists (each wrist, not the just same one.) and a bunch of other stuff. Which occurred to me that could be a sign of Celiac as well. I was speaking to my mom last night and we were talking about how all four of us girls suffered from gastrointestinal issues first before any of our other symptoms or AI's or issues set in. I think it would be beneficial to request a more complete set of Celiac blood tests as well. I have seen quite a few board members who only show positive on the DGP-IgG test, so I am definitely going to ask for that and a few others. The abbreviated panel I received was only the Serum IgA and the TTG-IgA and I just don't think that is thorough. I am with so many of the posters on here, I cannot understand why doctors don't order full panels or do complete testing! It's a waste of time and money to do incomplete testing and brush everything off. I too have been told it's just anxiety and IBS and that otherwise I am perfectly healthy, my husband and I really beg to differ, I do not feel or seem healthy. I finally might have a decent doctor who will bare with me on this though. ~ Thursday
  6. Hello nvsmom, Thank you for the insight. I really appreciate your reply! I have been eating gluten since roughly August of 2012 and the IgA and TTG-IgA tests were run 3 days ago on January 10th, 2014. I have had my TSH tested a couple times since 2009 because I have been feeling unwell for that long. They always come back within normal ranges and I have heard that's really common. I don't know why Doctors don't test for free t3/t4, etc. Probably the same reason why they think running one or two Celiac tests is effective. I do not have a family history of Celiac Disease but I have a family history of Autoimmune Disorders. My sister also has a Wheat Allergy. Also my sisters, my mother and I have only been getting sicker and sicker for a very long time. The symptoms of Celiac Disease seem to correlate a lot with all the various and random things going on with the four of us, but I am the only one of the four who has been tested for Celiac and of course that came back negative. I have been tested for a lot of things, Lupus, B12 Deficiency, Peripheral Neuropathy, H. Pylori, etc. All negative. My Dr. is currently running a culture, ova & parasite, another H. Pylori and an occult blood test on me right now. If these come back negative I will request the full Celiac Panel. Thankfully, though not perfect, my doctor is somewhat open minded and at least mildly informed because he told me even before doing the IgA and TTG-IgA tests - that they may come back negative and that doesn't mean that I don't have Celiac Disease necessarily. So at least he is aware of false negatives and he is fairly open to me requesting tests. He told me a biopsy is the best test for Celiac Disease and has been contemplating sending me in for a Colonoscopy, so if he does send me in for a Colonoscopy, I'll request an Endoscopy and Biopsies at the same time. That way I don't have to be put under twice. Though I think my Dr. might be getting a little fed up with my "random" and "all over" symptoms... he doesn't know of anything that could cause all of my symptoms. I think the recent development of pins and needles, burning and tingling has really thrown him but I have read all over the place that Celiac Disease can cause that. He sent me in for an EMG but that showed no notable nerve damage. So he keeps talking about sending me to a "Tertiary Care Facility" a few hours from here, somewhere with more specialists and better tests and stuff. I don't know if he will actually do that, as it is... he isn't setting up another follow up with me... : ( Basically he would like to "wait and watch" all my symptoms. He said he'll contact me via phone with my results. ~ Thursday
  7. Hello everyone, (Warning: Extremely Long Post!) I am brand new to the forum and quite the confusing case. My not feeling well all began in late 2009 with extreme brain fog, mild tummy issues, mainly stomach burning and fatigue. I began breaking out in strange rashes off and on and seemed to be having peculiar reactions to food. At first I was so confused and caught off guard because I suddenly became Lactose Intolerant. I couldn't consume dairy without getting stomach cramps, gas and having to run to the bathroom. I seen a GI Dr. and was tested for Celiac back then (around the end of 2009) but it was negative and I have no idea what tests were run, the numbers or reference ranges that came of that test. Dairy continued to make me sick every time I had it. I appeared to react to everything from Dairy to Doughnuts and for some reason all sweets were making me kind of sick, so I thought maybe it was a sugar problem. I went to an alternative doctor and he suggested I go on a Dairy Free and Gluten Free Diet. Which I did - and I felt a lot better but not 100%. I'll admit, at the time I really didn't know a whole lot about Gluten Free diets and I have no idea if I was totally Gluten Free or not, it was a long time ago and I was a newbie. I indulged in quite a bit of supposedly gluten-free processed foods and even still ate oatmeal until oatmeal seemed to also make me sick. Then I removed oatmeal from my diet and still haven't eaten that to this day, I am too worried about it making me sick again. After eating that way for probably 3-4 months I developed an intestinal blockage in February of 2010. The ER Dr. said my intestine twisted shut on itself. I was referred for a Colonoscopy in March of 2010, they did an Endoscopy and Colonoscopy at the same time but were not looking for signs of Celiac specifically. The results were that I have a hiatal hernia and everything else appeared normal. (no biopsies were taken, as they were not looking for Celiac) I fell off the gluten-free Diet but remained Dairy Free almost entirely. I would occasionally consume a bit of dairy to make sure it still made me sick, which it did. So I ate pretty much everything but Dairy till mid 2011 where I went on a very strict, almost Grain Free (it allowed brown rice) - Nut Free, Sugar Free, Still Dairy Free Diet. And I felt really well eating that way because before going on that diet, it seemed like everything made me sick. A bowl of oatmeal, a tuna sandwich, you name it. I had been diagnosed infertile with high likelihood of Endometriosis in 2011 - I had been trying to conceive for two years at that point, so my doctor told me I was infertile. Till 2012 (after 3 years of trying) when I became pregnant! I have no idea how I was able to conceive but I suspect it may have been the diet I was following that helped. And I ate that diet from Mid 2011 till August of 2012 where my 1st trimester pregnancy cravings got the best of me and I began eating pretty much anything. I didn't feel well after going off my diet but I assumed it was just pregnancy stuff. I also discovered that miraculously I was no longer lactose intolerant. Which pretty much brings us to now, I ate whatever I wanted during my pregnancy, had my healthy, perfect son 9 months ago and my health has been going even more down hill since then. I am suffering from Chronic Diarrhea, Nocturnal Diarrhea that wakes me from a dead sleep, not every night but increasing in frequency. I am going as much as 2-8 times a day, most days but not every day. My Lactose intolerance seems to be coming back as I can only occasionally tolerate dairy now. This has been going on for several months and I am losing weight. I am Vitamin D. Deficient again but I was diagnosed Vitamin D Deficient back in 2010 as well, so that is no shock. Brain fog, fatigue, intestinal cramping, tummy pain and most recently Burning sensations, tingling and painful pins and needles in my feet and hands. Cold hands and feet, except when they are hot and burning. Still getting rashes off and on. Which prompted a B12 test that shows a huge decrease from 4 years ago but still good serum levels, no B12 Deficiency. I am having weight loss, unintended of course, my Dr. thinks it is most likely due to the Diarrhea. I have lost over 11 pounds in about 2 months despite having a pretty big appetite and having dessert after every meal and not trying to lose weight. My Dr. ran an IgA test and a TTG-IgA test on January 10th 2014. IgA 188 (Normal is 80-340) So that is normal. TTG-IgA <1.2 (Normal is 0.0-3.9) So that is normal too. I am kind of at a loss, I seriously thought maybe Celiac was the answer for me, since so much seemed to fit. The Nocturnal Diarrhea, the weight loss, even the fact that I was able to go back to eating dairy after the special diet, I thought maybe that was from my Villi Healing and that now I am Lactose Intolerant again because my Villi are getting damaged again.. Even how I was able to conceive after being on my special diet for almost a year but who knows, I'm confused now... any suggestions? There are quite a few Autoimmune Disorders in my family. I have a Sister with Lupus with Kidney Involvement, I have another Sister who has 2 AI's, she has Eosinophilic Esophagitis and Areata Alopecia. My Mother is also sick but hasn't gotten a diagnosis yet and I have a cousin with MS. I am sorry for the long post, thanks for taking the time to read this and any suggestions or comments would be greatly appreciated. Thanks so much! ~ Thursday
  8. Hello all, I am new to the board and don't post much but I really wanted to reply to this thread. Any of you with "food getting stuck in your throat" symptoms been checked out for EE? Eosinophilic Esophagitis? According to NIH.gov it is also an autoimmune disorder, like Celiac Disease and other AI's - only different. EE effects the throat and esophagus. My sister was diagnosed with EE a few years back and I can tell you that she experienced things getting "stuck" in her throat, especially dry things like bread or meat but NOT all foods. It seemed very selective and kind of random if you ask me. From the outside looking in, it appeared that she had issues when she would eat, she would drink water and try to get the food substance down. As the EE progressed and got worse over time, she had increasing difficulty trying to get the food to go down and subsequently wound up throwing up what she couldn't get to go down later in the course of the EE - but still before getting diagnosed. I am not sure whether or not throwing up is part of EE or if my sister also had a bad combination of EE and a sensitive gag reflex or something. In either case it is diagnosed via Endoscopy or more recently they are also developing a gene panel test for it too. I wish you all good luck in finding out what the issue is and my description is not all-inclusive, nor is it a 100% accurate representation or description of EE. Merely just a suggestion for you guys to look into EE, research it, google it, ask your doctors about it if it seems to fit, etc. I am sure there are many facets and intricacies of the illness that I did not mention, I personally have never studied it, I just have a sister with it. ~ Thursday
  9. I am new to this whole thing and correct me if I am wrong but if someone has been gluten free for 8 months, wouldn't that potentially make antibody testing (Blood or Saliva) invalid? I am under the impression that you must be consuming gluten for the tests to be truly accurate and that your body can only produce the antibodies when you are exposed to gluten. Now of course, the levels can remain high for some time after discontinuing gluten consumption but more than likely testing after being gluten free for so long would result in a negative, whether you have Celiac Disease or not. So I am pretty sure you'd have to do a gluten trial regardless of the method you wish to test with. As far as the validity of a Saliva test in regards to Celiac Disease, I have no clue what it's efficacy is. I'd go with the standard blood tests if it were me but remember to research first and make sure you are following correct procedure to give yourself the best chance of accurate test results and I believe that would require gluten in your diet. Again, that is only if you wish to pursue it. Good luck, research everything and my apologies if I said anything inaccurate. Someone wiser, please correct me if I am wrong on anything I said. ~ Thursday
  10. Great article, very informative! Thank you for posting this.
  • Create New...