Jump to content

sandpiper

Advanced Members
  • Content Count

    44
  • Joined

  • Last visited

Everything posted by sandpiper

  1. Just a quick thought about your symptoms and your recent tests that are back. Have you had your thyroid panel done recently? If so, did the doctor run more than just the normal TSH? Running your free T4 and free T3 is a better test to check, as these tests will start to be a more accurate judge of how and what your thyroid is doing. Also getting a ultra sound of the gland. I don't know if you mentioned your age, but alot of woman more than men will have a thyroid issue after fifty, or having given childern. I was dx with graves disease way too late and suffered with it for years. Heat intolerance and sweating racing heart, fatigue, mood swings, and alot of other "fun" symptoms can go along with this disease. I went gluten-free about seven years ago and decided to challenge it back in my diet to be tested, I could only take this challenge for two weeks as I felt the results too much. If your tests have come back negative, as many will probably state here and agree if eating gluten free does make you feel better then that could be an answer enough for you. Hope that you can get some answers soon and feel better. Best to you, Susie
  2. Hi gfpaperdoll, Also sorry for this delay, and do hope that you are feeling better from your cold, this has been a harder seaon than most for alot of us, ( even if we are doing better things for our bodies with our diets), it is hard to dodge the bullet. Enterolab, sounds like the place to start for some answers that have been having us go in circles for way too long, and I agree with so often not getting anywhere with the medical field and them dismissing our symptoms and going just by the experience and labs. It really sounds as if you have been through so much, and I do feel for your hardship for those years. Did you also use the enterolab for your other food intolerances, if so, what kind of testing did they use for that? I find it very interesting to connecting the dots with our family's history and the way it can come into play with celiac disease. The condition of hemochromatosis and celiac and you doing the researching with the link, wow, I love how we all are finding these possible diseases/connections. I was also doing some reading and found the melanoma association and hyperparathyroidism (which is rather rare), just wish for us all that the doctors would start to do some of these researches with the history of the patient and looking into the celiac tie. Maybe this will happen in the future with celiac coming into the forefront these past couple of years, and to stop the suffering. So right about really getting into one's health and the importance of what goes in and the effects, short and long term, it is about the body being in balance and check, and our bodies are so amazing with their ability to heal when we don't get in our way, and stop and listen, to know our own body and just be centered with it, is steps of the continual journey to being true to ourselves and to our very essence. Take care, and I am very happy for you that you are feeling so much better, Susie
  3. Hi Glutina, It sounds as if so many of us here are getting the same type of reactions (and that's not fun). You did mentioned that you get a rash on your forehead? Would you please let me know what this looks like? I have had some issues with breakouts on my forehead and don't know if I am getting a hold of some gluten somewhere, I have tried to do the best with checking all the foods/body products out, and after not eating gluten (atleast I don't think so) for a number of years, around 4-5, I can't figure out why I still am having these breakouts. Do wonder if I have some rosacea. Does anyone here have a problem like this or has been dx with rosacea? I don't have these breakouts all the time, and I have somewhat connected this to maybe being seasonal active. By chance do you have a thyroid disease? Thanks for your help, Susie
  4. Hi Fedora, Hope that I can give you some insight on this as I just looked into the link a couple of weeks ago. I went with our youngest son to the dermatologist for a mole we were concerned about, and the doctor asked if there was any melanoma in the family ( this was a new doctor, not the doctor that dx my melanoma back in the 90's). I told that I had a history of it and she asked if our son was biologically mine, I said yes, she then told us that it is not just by the exposure to the sun but also by the gene connection. Okay that got my mind in over-drive ( as it often does, which drives me nuts sometimes), and I went home and research it with just using those two easy words, celiac and melanoma and it said that you are at risk just as the risk for having the small bowel cancers, etc, we have all learned about with this disease. I am not saying that this is what one should conclude is the cause and effect but you know it does help you try and understand why (as myself) have had so many experiences with my health over the years. I also read that hyperparathyroidism which is actually quite rare puts one in the same class with the risk and association with celiac, I have graves disease also. So when you add it all up it starts to make some sense. Has your grandmother been dx with celiac? I was tested too late, as I learned after the fact going gluten free for a couple of years and putting it back in was a negative blood result. I do want to get the gene testing, and not just for myself, but for our sons and their health and grandchildern. It is amazing the generation to generation loop that can take place and how we can start to help this end of it with our own awareness and final dx. You know even if I am not a true celiac, and gluten intolerant, this for myself is enough of a dx, but for the rest of my family I still will try and do the best in ruling out all the rest to help them, and I will try to learn as much as my mind will let me ( have a hard time doing this, wish I could retain things better). I am glad to hear that you got a good report back for your concern with the melanoma and please let me know if your grandmom is dx and following a gluten free diet, the best to her, as melanoma is pretty scary. Take care, also I love your picture it is very beautiful, Susie
  5. Hi Kathy, Thank you for your help and percentages, it does help to try and get a whole picture with the input of others and their personal historys. Our sister was not eating alot of gluten for the last few months, but was doing a barley max product from the Hallelujah diet that is supposed to be gluten free? Yikes is all I can say, I myself am not that brave to give it a try. Have you heard ( I have asked this already here) ) of anyone trying a barley that is stated gluten free, and if so if they have had any kind of negative reaction (s)? When I get the (smallest amount) to being glutened I will have reactions, bloated feel like I have gained 3-4 pounds over night, and migranes. I quess for alot of us here we don't need the actual dx because we know that taking it out and staying away from it does the trick, and if we get some unkind remarks from family members in their unsupported interactions it is alot easier to "stomach" than doubting ourselves. Be true to yourself first, it is your body. Kathy, sorry to sound a bit on the defensive, quess I am feeling that for our sister and her health we are back to square one. Best to you and to your health, Susie
  6. Hi Nanny B, Thank you for your return post and your input with your experience and family's dietary responses ( which I am glad to read are favorable). What you wrote is also what I was thinking about the lab and their responsible job on their end of testing and handling the tissue/blood samples. I don't think that our sister has been eating too much gluten, she has followed the Hallelujah diet for a few months. One thing as I just posted and mentioned, they have a product that is a barley max and they do say that this is a gluten free supplement. This is a continual learning thing for me, but I have always thought that this is a big problem as the wheat and rye, I do understand that oats might be okay for some if handled right. What do you think of this? Sadly I don't know if she will follow this diet now as the test have given her the so called answer, and she will probably not be concern now that this is going on and she will not investigate any further. If I might ask what kind of neurological symptoms were you having? With myself I was tested after challenging the gluten back in last year and it was negative (by blood), but I had been gluten free for a couple of years, and I do know now that you will usually not get a positive result by the blood if you have been off of the gluten that long, ( I also could not challenge it back in any longer than two weeks, I felt terrible), and I could not do the challenge any longer, which if it does show in the blood takes much longer. So yes if it feels better you know it is working. I do have graves disease and also had one of my parathyroids removed which puts me at a higher risk, as I carry the gene connection, also was dx with an melanoma back in the 90's which also has that celiac link. It is amazing how our bodies are effected and how it all ties together when connecting the dots. Thanks again for your help and I am glad to read that you are feeling better after going through the years of being gluten and it's effects. Susie
  7. Hi gfpaperdoll, Thanks for your return. How do they test for the DQ1? Is this by blood? Is it always a accurate result? What I quess I am understanding is that your neurological symptoms are the same as one would have with being dx as a celiac, with the damage to your nerves and the nutritional deficiencies that go together? What kind of neurological symptoms were you having? I don't think that our sister was actually eating too much gluten for some time. I would mention though that she has been following the Hallelujah diet which has one eating their products that are barley (barley max) which for me still is a bit disconcerning always hearing that barley is a no-no for us. The company does state though that this product is gluten free as the barley is harvested before it goes to grass. Does this sound right to you? I wonder if anyone here has heard or tried this? I totally agree with so many here that trial and error go together with this disease and intolerance as so many food intolerances can and do have the impact on our daily health. Thanks again, and wait back for your input. Susie
  8. Hi to all, Please let me know with your testing and results with this being a 100% accurate. Our sister today just got the news that she is not a celiac, with the upper endoscopic/blood tests done last week. Are these always right? How often do they miss something? If she is not a true (autoimmune) celiac, then is she having a problem with gluten intolerance? How many of you out there have come across this? How long can they keep the blood and tissue ( they made a mistake and forgot to run the test and they were looking for something else, yikes scary, and so they had the blood/tissue for almost a week before the actual testing. When gluten intolerate do you have everything that can go along with like being a dx celiac? Please let me know what you all think, this is a bit depressing as we thought this might be an answer finally. Thanks to you all for your help, Susie
  9. Hi to all, Would like to ask if anyone here has had or has a infection of the colon before being dx with celiac or just after stopping the gluten? Our sister, who I have posted about recently, was dx with colon cancer a couple of years ago. She just had a colonoscopy on Monday as she is having 10-12 bowel movements a day, and that would be the D kind of movements. She is quite anemic and also having a PET scan last week (thank goodness it was clear of anything), they are trying to see what else is going on. I have strongly suggested to her to get her blood tested (this was after she was dx with the cancer), she just had this done on Monday, and we are waiting. She also had a upper endoscopic with the biopsy test. I would like to see if anyone here had a problem with an infection of the colon with celiac, as the doctors did pick this up on the colonoscopy on Monday. They are treating the infection with an antibiotic. Please let me know what you think of this being possible and if anyone has had this connection made. Thanks to all, and the best to you and your health, Susie
  10. Hi to all, I would like to ask if anyone here has tried the gluten free products that are made of barley? I understand that if the barley is harvested before it reaches a certain level that it does not contain gluten. Does anyone have more information on this and if so, if you have tried eating barley that is gluten free if there was any kind of reaction from it? Would this fall into the same trial and error of dedicated oats that are starting to come into the mainstream and not being a problem for some of us? How many of you have tried the oats? I will tell you that I myself have not tried eating any gluten-free barley, but we have a sister who has been following the Hallelujah diet and she is having alot of problems with the D word. She also was dx with small bowel adenocarcinoma cancer last year. I have tried to encourage her to get tested for celiac, for a feel that she could strongly be a celiac/gluten intolerant. Please let me know what you all think about this. For me this is always a learning disease, I felt like my head had been buried in the sand not knowing about the gluten free barley, ( which puts me at an uneasy feeling of just thinking about eating some). Thanks to all, Susie
  11. Hi AliB, Thank you for your family and your own personal history with gluten and all of the symptoms you have been through it does help to hear about it. I am sorry that I have not been in contact sooner, I was down for awhile with some bug that lasted for a few days. I always try and get back with people when they are kind enough to respond and help out. It really does sound as if your family has had their share (and still are) with the problems that go along with being glutened. I did the same as you did with going gluten free and then waiting too long to do the testing, I also did not have the biopsy, and the blood test came back negative. This is really a on-going lesson of the right and wrongs for ruling the disease out. I do agree and that is probably almost a 100% for us all that taking the gluten out and following the diet to the letter is often the best way and the best "medicine", since alot of us here also have been over-looked and placed on too many drugs to mask the actual problem. I do love how you said in your post (the end) in the pudding.........and breakfast, dinner and tea, how cute was that!! Perfect! I do feel for your family and especially the little ones, my heart goes out to you and to them, to have to suffer and to do this needlessly when we can change it so easily with our diets. What a blessing though when you think of it and your continual knowledge and own-awareness to be able to help your family and others. It is great to hear that they are making the changes. I do hope for this with our son. It is difficult though to even talk to him (most of the time), so if I can gather more insight to the experience of others who have had to walk this path, it is more of the type of concrete information that might nudge and encourage him to take more of the steps for his healing. If you don't mind me asking how old was your mother when she passed? Our mom is 86, but as I mentioned she does seem to have some of the problems connected with gluten. Your son, I wanted to add is tall like ours, who is 6'2, and very thin, (although, he does not eat alot), but I will tell you he loves, LOVES pizza, and he could probably live on it (actually, I think he does), and chocolate milk. I see a pattern with our youngest grandson, and him having immediate reactions to cows milk and peanut butter, and I do believe wheat, he does the classic pushing up on the nose, and will also display being hyper. I can't tell you (know that you do understand though) how this will always upset me to see and that I just want to help him so badly. He does though when he comes to visit, which is atleast once a week never, never eats gluten, only whole foods. Okay, I do make him chocolate chip cookies (gluten-free), so I do try and help him in these ways. I have tried to talk to his mom and dad, but to no avail, so he (they all are) in my prayers and hope to see these food behaviors start to turn around. AliB, when did you become diabetic? Are you only on medicine for this? Do you have anything going on with your thyroid? Hopefully you have a great doctor to check it out with all of the right panels, not just the standard ones. Have you had any gene testing done? I have been doing some reading on the connection of celiac genes and thyroid genes, which if I am reading correctly are very close. If anyone here has more information on this I would love to hear about it. I realize if you don't have the gene then you don't have celiac, but could have the intolerance. Maybe another good way of testing just to rule out the autoimmune connection? Better close for now, I do hope for the very best for you and your family, again it sounds as if you are doing the best that a wife/mom/grandmom can do for them, keep it up. Take care, talk to you soon, Susie
  12. Hi Nikky, Thank you Nikky for the great suggestions about talking with some of the others here. David is 35, so I am not sure about this particular approach for him and his age. Just to get him started and to stay on track with his desire to check this possible link and connecting the dots will be the very most we can hope for him now. Please keep the great thoughts coming, that was very sweet of you, and so right on with how one (or more) can help each other. Take care, Susie
  13. Hi Happygirl, Thank you for your return and the postive advice on the not so typical symptoms one sees with this disease, and being over-looked with the correct dx. Would the occipital calcifications include the same end results as migranes? Our son has almost daily headaches, and some would be the true type migranes, which puts him down and out for the count of most of the day. Have you talked with many who have had this happen with their main symptom? Also with the dental enamel defects is this from a loss of calcium in the teeth, how would the enamel defects appear? I am constantly learning about this disease and it's profound effects it has on one's life from the nutritional stand point and how our bodies suffer at the cellular level. We do hope that our son will decide to investigate his symptoms and not dismiss them as the doctors already have. When his body is practically screaming out to him, you would think the doctors could hear. It is a journey though for us all and with the help of forums as this and people who have had their experiences and now reach out to help others in need is one of our most valuable resources. Thank you so much for your great input and help, I look forward to connecting with my new friends here for all of their much needed advice. Susie
  14. Hi ravenwoodglass, I did just join the forum on the 15th, and have posted a couple of message/questions, with no returns. I might not be doing something right, but I would love to hear back with some help and input for our son. Reading your post and your past experiences it sounds as if you might be someone to ask about the neuological aspects of the disease and it's effects. My thought are to be able to get some printed documentation on the ongoing pain from the nerve damage that is done from being gluten, and it does sound like you have had to live through this terrible pain (I am very sorry to hear that you had years of this) reading one of your post in particular about your leg pains and the suffering you endured. I did call the university of Maryland and spoke to the nurse in the research department, and said the connection with the neuopathy was common and I am waiting to hear back and see about them sending some information that I can sink my teeth into and physically hand it to our son who is in constant foot pain after four attempts with surgery and is on heavy duty pain medicine that still does not seem to "take care" of it. To mention some behavioral mood swings alone would be enough to say that he is not willing to do some of the investigation on his part with the possible connection to having celiac and wanting this to be his of his life and life syle change. After being gluten free for four years myself I know just how bad I can feel if getting a hold of anything close to gluten. So if I could get some more information to give to him and to try and see if this approach would leave an impression on him to atleast check it out it would be wonderful, because as a mom it is too painful to keep watching him go through all this pain and not getting any relief. Thanks for listening and I do hope to hear back from you and for your help, Sandpiper
  15. Hi, Would you please let me know what co-enzyme B's you are talking about. What brand? Is this well tolerated for most of us? Thanks, Susie
  16. Hi, Just wondering if you would please let me know just how the neurological problems can effect one. I did post a message a few days ago and did not get a return on the experiences of this concern, maybe I was doing something incorrect with posting as I am new here. Can you have foot pain (in just one foot)? This would be daily pain and with four surgeries nothing is taking it away. Our son is putting the celiac testing off for the last, as he does think or wish this to be his problem. Please let me know if this sounds as if this could be his problem. He does have a number of the other symptoms that go along with the disease. Thank you all so much for your help, Susie
  17. Hi holdthegluten, So sorry about not reading the complete post with you being 27 and the daddy!!! Yikes really sorry. Not to say that the guys don't have problems with the thyroid, but when we women start to have the childern we do tend to trigger the immune system and the endocrine connection. Again please except my apologies, and congratulations on your new baby. Another thought (if you want it), low potassium can give you some of the symptoms you are having. Take care, Susie
  18. Hi holdthegluten, Just read your post, I actually just joined today. Sorry to hear that you are having this problem. This sounds as if it could be thyroid related, you did just have a baby last nov? I have graves disease and was treated, on the daily replacement now and when I am getting too much of the meds I will have leg weakness and in the thigh area in particular. Also you mentioned the cold/hot sensations, our thyroids keep our thermostats in check. Just a suggestion to see how your levels are, and when the doctors are doing the blood work they most often will only do values for the standard TSH, since you have had a baby recently doing the free t3 and free t4 and antibodies are important. Hope that this thought helps you and that you start to feel better with some answers. Take care, Susie
  19. Hi everyone, This goes out to you all with the experience of yourselfs and families in helping to encourage our oldest son to get tested/or at least do a short trial run of taking gluten out of his diet. Our oldest displays many of the symptoms of being gluten or a true celiac. The big ones are almost daily headaches, that can range from being mangeable to down and out migranes. He also has tooth discloration (his dentist, just told him last week, you must have been very sick when you were around five or six) this is the first time any dentist has brought this up, this is a new dentist by the way, and I believe said that he had some calcium lost, please let me know if that sounds right. He also which really concerns me has, foot pain neuropathy, and has had four different surgeries in the last two years that still has not made a difference in his daily pain (which is bad) and he has to take heavy duty pain medicines. He is also depressed and has some big mood swings ( don't know if this is related to his pain meds). He is thirty-four years old, and this is not getting any better for him, it breaks our hearts. I might mentioned we are pretty sure that he has sleep apena. Our family history is big time thyroid diseases, myself, have graves disease and believe that I do have celiac disease, I was not tested until too late, I had been on the diet for two years or more, and did try to challenge it back in but I could only handle a couple of weeks and I felt terrible. Our youngest son is gluten free and when he gets anything close to gluten he does not feel well ( his story is longer with his health, and I could message this some time later, if you would like). Our mom has thyroid disease and our grandmother had graves disease. I have thought for a long time that our mother is a celiac, I can't get her to be tested. Please let me know if any of you have had the problems with your history, especially the teeth and the neuropathy. Thank you for all of your input and suggestions a head of the returns. Best to all of you, Susie
×
×
  • Create New...