Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Posts posted by Jen_1984

  1. It seems confusing that a doctor would decide, even after 2 negative celiac panels that you actually have it and then take you off your immune suppressant medication. Is there any other reasons that the doc has that they may have this idea that gluten is causing your lesions? I just thought I would chime in here and let you know that I have never ever had lesions, but have had numbness, tingling, uveitis and cognitive issues and had one positive test on a celiac panel that was positive and I also have a milk allergy. When I cut out the gluten and dairy all the cognitive/numbness/tingling issues went away.  It is hard to say in your situation though because the doctor doesn't seem to have any real clear reason for changing your diagnosis. I would go to an allergist and get tested for any food allergies period. I would also get a second opinion on this new neurologist's diagnosis. I would be a little suspicious of it and that is just my opinion.  

  2. I also had one test that came back positive, which the deamidated gliadin IgG portion of the test. My labs were also sent to a gastro doc who also was very rude, said that I didn't have it at all and scoffed when he heard me say that I felt better going gluten free. I did end up finding out a month later after the celiac test came back positive that I have a milk allergy. I didn't feel completely better and when I found that out I went gluten and dairy free. That really made me feel so much better. I would go through with the colonoscopy and endoscopy but you may want to go to an allergist just to rule out any other allergies. You probably don't have any but it is better safe than sorry.

  3. Last year I had a positive Deamidated Gliadin IgG blood test and a positive skin prick test for a milk allergy at the allergist's office. I faithfully cut out gluten and dairy for 6 months, but as time stretched on and we moved and life started getting busier, I began eating gluten and dairy again. I was feeling better. but it literally took months to feel almost normal again. I even began losing weight and had a hard time putting it on after cutting out dairy. However now I am in my same old rut I was exactly a year ago, sick not able to et out of bed, hardly able to concentrate. I know many of you probably wonder why I am doing this to myself, but it has been harder than I thought with family and with kids and with my weak will power I guess to give it all up. Plus now that I have been ingesting it for so long, the symptoms seem worse and I am not seeing the results as quickly. This is a vent post and probably sounds dumb. I am reaching out in some small way to hopefully help myself again.

  4. I have a ton of eye floaters and issues with my eyes. I don't know what could cause it really but I have read other people on this forum say they have floaters and I have suspicions and it is my opinion that celiac maybe able to cause it. It is an autoimmune disease and effects every person differently. Gluten causes the autoimmune response. Now that I have been gluten and dairy free, I can count on one hand how many floaters I have had. Before I would see them several times a day. It is only my opinion and I am no doctor, but I feel there is a connection.

  5. Hi, I post here all the time, and I am newly dx'ed with celiac disease and a dairy allergy and I have since cut these foods from my diet. I have been off gluten for over a week, almost four days free of dairy. I already struggled with itchy, flakey and very sore scalp before I found out I had food issues. Well now that I have been gluten free, I have been getting itchy sores all over my scalp, and they kind of ooze some, and I also have been getting the sores on my arms, the inside of my fingers and on my neck, more the back and side part namely. Has this ever happened to anyone before after newly cutting out gluten or dairy? I have no idea if this is dh or not, but it seems strange that it seems to have gotten worse since cutting out the trigger foods. Any guesses on what is going on? Oh please not another allergy!! Lol

  6. 1desperateladysaved, I totally and completely can relate about the missing food or having issues with cross contamination. I feel like I am so dumb when it comes to hidden ingredients and I think I have poisoned myself without knowing a few times. I really do hope I am on the road to recovery, as I want to live as long as I can for my kids. Thank you for your advice, it makes me feel better having your advice.

    Powerofpositivethinking, my allergist said that he thinks that I have celiac. I am still headed to the GI to possibly confirm it, but I will say that after cutting gluten out, I feel way better than I did while on it so I think no matter what is done or said there I am keeping myself off the gluten. I also think we have alot in common and I have read your other posts too! ;) About the endurance thing, I feel a little better after cutting out the gluten and I have been able to FINALLY clean my house without falling asleep afterward and I have been able to run my kids around town for Dr.'s appointments without crashing at night with major knee pain and a general feeling of unwell. You should get your vitamin levels checked. You might be like me and be able to suppliment with over the counter vitamins and do okay if you need them. One other thing is that I also noticed that I gained the most weight when my diet was rich in dairy and gluten type foods. I know you may not have a dairy allergy, but with the gluten, you maybe able to lose that weight when you cut it out (your still eating gluten for your endoscopy, right?). I also lost weight 2 years ago with exercise and was feeling great, but that was short lived as I think the celiac reared its ugly head and halted that. I gained 40 lbs back in 2 months. :( Since being off gluten for only a week, I have lost 4 lbs and I have been eating rice noodles with gluten-free seasonings and olive oil. I want to say that I believe that in my own mind that I am in the possible early stages of celiac disease and that it was a warning sign when I recieved the positive DGP IgG that I needed to go gluten free right away. I am not a Dr, this is my own guess.

    This is why I am so grateful for this forum. I am scared, I feel depressed about all of this and my parents (even though I am 28 years old, I still listen to them) think its all just anxiety related and don't believe I have anyhting wrong with me, even after blood tests and a very obvious positive skin prick allergy test. I know I can come here and find answers to my questions. I can find better answers here than I can in all of the doctor's offices that I have been to. I have people I can relate to that are going through what I am and I have seasoned people that can chime in and help me with in depth issues. I am so grateful for this forum.

  7. I get headaches with milk, I know I have a milk allergy, but not sure if it is the casein or whey protein or both that I am allergic to. I also get anxiety after ingesting milk. My gluten issues are not the same I don't think and honestly I don't know if my gluten issues are as bad as my dairy issues. I am still trying to sort all of it out though and right now it is a mess. ;)

  8. I have had vitamin levels checked recently and I had low potassium and also low vitamin D, but I only took over the counter potassium suppliments and the doc didnt think my vitamin D was too bad so he decided not to treat it. I have also had a mild case of pancreatitis in the past. I hope that I can improve more, I have seen some improvement since going gluten free but I could tell I was getting sick from eating cheese and butter. So when the doctor dx'ed me with a milk allergy I was not completely surprised if that makes any sense at all. I feel a little depressed about the milk thing though. My diet seems so restricted... :(

  9. About 2 weeks ago, after a positive DGP IgG, I had suspicions that I had celiac disease . And I for about a week I have been gluten free and felt a marked improvement in the way I felt. My little guy has had some strange symptoms so I suspected he had a milk allergy. My daughter, he and I all went to the allergist and haf the prick test. My lucky daughter was not allergic to anything and my little boy does have an allergy to watermelon. However, I had a very strong, itchy welt and the doc looked at it and says "You are very allergic to milk"! He even gave me benadryl before I left his office. I felt sick and immediately got a headache in his office. I cannot believe I have milk allergy. Well I asked if the positive DGP IgG was related to the dairy and he said no that I probably have celiac AND a dairy allergy and he advised going paleo. He said its not uncommon to have both celiac and a dairy allergy. He said to stay away from butter, cheese, chocolate and any milk related food. In just a couple weeks after I basically found out I cannot eat gluten, I also find out I have a pretty bad milk allergy. I feel so limited as to what I can eat and feel overwhelmed. Anyone else have a milk allergy here along with celiac? See any improvement after quitting dairy?

  10. I (when I first became sick) had a low grade fever that would spike about an hour to two hours after eating. I would feel flush like and I would get terrible stomach pains and heart burn. I also could not sleep whatsoever. Then one night, my husband took me out to eat and I ate felafel. I know now has tons of gluten derived ingredients and had horrific stomach pains the whole night, running a low grade fever and so I finally took myself to the hospital where I was found to have panceatitis. It was mild but was painful. I think it may have something to do with celiac effecting an organ in the body. I have also been tested for lupus, RA and other autoimunes and nothing ever came out positive but celiac ever. Its crazy the symptoms besides the pancreatitis that I have had. Namely neurological, seizure like episodes, floaters in the vision, photophobia. Its been a crazy ride!

  11. I also agree that doing follow up blood work would be good. I have also wanted to see what my DGP would be. There is one study I found online that claims that the dgp can sometimes be falsely pos. And fall without taking gluten out of the diet. This is where the confusion sets in because many studies also show that dgp is extremely sensitive and accurate in detection of celiac. You may want to experiment with a gluten-free diet just to see if you begin to notice any difference. I have been gluten-free for about a week now faithfully and the change is astounding. I hope I continue feeling better. I really am curious as to what next step you will take and please update us! :)

  12. Hi everyone, I wanted to tell you all about an article that I came across as I was researching dsDNA and celiac correlation. When I had my testing done for celiac disease, my dsDNA was also detected which is a marker for SLE (Systemic Lupus Erythematosus) but my neurologist, family doctor and several other second opinions later, they all say I do not have lupus because of the low titer range being 1:10 and I never get the rashes nor joint pain association. I have had seizure type activity, photophobia, neuropathies, and weak muscles that I surely thought was lupus, however I never have had all of the criterion and things just didnt quite add up. I also tested positive for the deamidated gliadin peptide igG (DGP IgG) which indicates celiac disease.

    In doing research I found an article wriiten about a woman, Margaret Romero, who was diagnosed with lupus nephritis, and she found out that she had the genes for gluten intolerance. Her story is pretty remarkable and I wanted to ask you guys if you have heard of her before and what you think about her story. I will attach a link but I am not sure what the rules are for posting for links, but here it is, I hope that you can read it and see her success. http://celiaccorner.com/celiac-gluten-free-blog/surviving-a-dual-diagnosis-of-lupus-and-gluten-sensitivity/

    I also found this study for those with lupus like symptoms and even diagnosis which turned out to be gluten sensitivity. http://ard.bmj.com/content/63/11/1501.full I am not saying this is EVERY case because everyone is different. I think for learning and knowledge purposes it can be very informative. It also may offer some of us relief. I wonder if celiac really can be mistaken for lupus? Has this ever happened to anyone here? Thanks in advance and I really hope that it is okay that I am giving these links for others to read.

  13. One other thing I thought I would mention is that there are times when I feel also very dizzy right when I wake up and actually if I wake up too abruptly and get up, like to check on an upset child I pass out, and have done this a couple of times. It doesn't happen often but has happened a couple of times.

  14. I think at this point a CPAP machine would probably help me. I wish my doctor wasn't such a hard guy to convince of things. And regarding the sleep walk thing, I did that all the time as a kid and had very disturbed sleep patterns along with screaming in my sleep. I would not remember any of it. My parents would just tell me about it the next day and act pretty freaked out. Hahaha.

  15. Free t4 is the one thing that came out low on me which indicates hypothyroid. TSH always normal. I am still a newbie like you are in this whole scheme of health issues. But like Mushroom suggests, get ALL necessary blood work done. Thyroid issues are VERY hard to discover and I have heard even borderline results can give symptoms. I had weight gain and still have fatigue and free t4 was borderline normal one test and then low the next test so I am considered hypo but am not seeking treatment as the synthroid made me feel like I was on speed. Good Luck and please let us know how it all turns out.

  16. New here and I wanted to just ask if any of you have had issues with exercise, especially those of you who used to be athletic and then "came down" with celiac/gluten intolerance. When I was 21 I was very active, fit, had a great amount of energy and could exercise quite a bit, running for about an hour everyday and lifting weights. Then I came down with feeling fatigued, and feeling worse after exercise, feeling like my body was inflamed. I have been tested for lupus, RA, and several other autoimmune disorders and come out that they are negative. The only test to be positive/elevated ever was the deamidated gliadin peptide IgG. I miss exercising so much, but it seems like when I do, my body reacts negatively. Has anyone ever experienced this? Fatigue after exercise, pain in joints, lack of endurance and feeling like your body gets inflamed afterwards? I am new to the gluten-free diet, only been seriously on it for a day and a half so I haven't seen any major improvements in symptoms yet. Thanks in advance.

  17. Thanks for your reply, it makes me feel so much better having others to talk to and relate with here. I hate the way my sleep has been effected. Six years ago at the onset of my symptoms, I couldnt sleep no matter how hard I tried. I went two days without sleep. My symptoms have not only been gastro related but so many neuroligical symptoms. Like tingling, burning in hands and feet, vision problems, seizure like issues, feeling clumsy. Anyways, I cant believe how celuac can effect people, if that is what I have and I highly suspect it, because I have been tested for everything under the sun and the only positive result was the dgp igg. Anyways, enough of my rambling.

  18. Does anyone experience this along with being celiac? I have very vivid dreams, I don't think I am breathing that great during sleep, but I did a sleep study not long ago and the doctor said I had mild sleep apnea and that he wasn't going to treat it. My dreams like I said are very vivid and I wake up shaking, and feeling scared. I also notice at night I get bad stomach cramping. Can anyone relate?

  • Create New...