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Everything posted by sandpiper

  1. Hi Amy, Thanks for your experience with your symptoms of being glutened, and you are so right about the added assistance with drinking the water and helping it all flush out faster. I really did feel as if I was loaded down with drugs, it not only effected my lower tract but the effect it had on my whole system was pretty scary for a week plus. Yes, I did actually call the doctors office and inquire about the drugs, and after speaking to one of the nurses, she was not able to give me a 100% accurate affirmation of the drugs not containing any gluten. At the time though, with the tooth causing me such pain and the infection going through my body, I was ready for it to just come out, taking the chance of the meds being unsafe, ( and I did make the call after the surgery), again I just wanted it taken care of. I agree with some of the others here helping me with their suggestions and input of the amoxicllian maybe being the cause and effect, and trying to replenish the gut being stripped of my good bacteria. I did follow the amoxicillian with some plain good quality yogurt, and things are starting to settle down. I want to thank all of you here with your help, and great thoughts of how to treat your body, when you have to resort to not the natural approach of helping your body heal, all sound and well put words of help. Thanks again. Hope that you are doing well Amy, and it is good to know that you are so "close" by. Best to all, Susie
  2. Hi to all, I have to apologize if this is not the correct area to place this question, and I did try to post it earlier this week, but have not had any responses. I had some dental work done a couple of weeks ago, and the surgery required that I had a general to pull this abcessed tooth, which I before hand was using the amoxicllian medicine to help with the infection. At the time of the surgery, the doctor also gave me a pain injection along with some other medicines which I am not sure of the type that they used. My question is when having a surgery of this type along with the amoxicllian that I was on, would there have been a chance that I was glutened? I did not feel too bad the day after the surgery, but the next few days I was miserable, very distended, I looked like I and felt like I was seven months pregnant, very tired, and depressed, this lasted for the most part three or so days. I am starting to feel better into the second week of post-surgery, but I feel like I and my clothes are telling me that I have gained about 4/5 pounds. If this is from being glutened, how long would it take to recover and to have the pounds start to come off? Please let me know what you think about having dental surgery and the safety of the kinds of meds that are used when going for dental work. Thanks for your help and input, as always it is much appreciated, Susie
  3. Hi Sonya, Well I can relate to your post, as I was just finishing my posts ( to all ) this morning my computer crashed. Everything is okay now, but well you know I just can't remember word for word what I wrote, sorry. I will try again..... first thank you so much for your post and you and your daughters experience with the genetic part of testing and learning. It is great to hear that you did not take the Enterolab's report and end there and have more unanswered questions that would have had you wondering. I did want to ask you how they finally dx you and your daughter? Pretty interesting with the DQ2 and us having the 1/2 version and not excluding us with the possible chances of having or getting the disease. I have often thought that my body was trying to tell me something was a miss, and I quess when you start with the immune system and breaking it down with certain foods it begins a downward spiral of other autoimmune diseases that might not have taken ahold of your body and it's effect down to the celluar level. We can I quess only try to help others (hopefully our family to start ) with what we have learned on our own personal journeys. Do you and you daughter have any other autoimmune diseases? Or did you have anything that you think would have been a certain trigger for you? Sorry, my mind is going on here. Glad to hear that you and your daughter and others here are starting to heal. Best to you, Susie
  4. Sorry that this has taken me longer to respond back than I would have liked. Been under the weather. I love your "deer in the headlights look" remark, I really can "get" that one, as I often have the duh look with all of this, and trying to keep it all straight and in my head is just about too much for me, but I do love the learning atleast trying to. Thanks for your help and I am looking into this with all of your help here. My doctor is an internist, and I have not seen a specialist, you are right she was in less informed than myself, as she ran the wrong tests first. Take care and thanks again, Susie
  5. Hi Nora, Thanks for your help, regarding the remaining test and results, it showed as follows : DQ2 Homozygous 31X relative risk, extremely high DQ2/other high risk gene 16X very high risk DQ2/DQ8 14X very high risk, DQ8 Homozygous 10X high risk, DQ2 heterozygous 10X high risk, DQ8 heterozygous 2X moderate risk, DQ2/other low risk gene <1X low risk, DQ2-, DQ8- <0.1X extremely low risk. Hope that this makes more sense to you than it did for me. Again these are the only tests that they ran. Who would be able to run a more detailed panel, I had a very difficult time getting this done by the request of myself to my doctor, who does not have any backgroung of studies in the disease, but atleast to be covered by my insurance company she complied. Best, Susie
  6. Thanks for your return. I am wondering what are the other genes you mentioned that are recognized with the disease? I thought that I had read that there are around seven different genes, is this true, and how would you find out more information about them? Yes, you are right about the autoimmune issues that take place with those type of diseases, and how it plays out with your daily living. I have graves disease and fibro and endometriosis and they have impacted my life and it's quailty. Best, Susie
  7. Hi to all, Please help me out here. Finally got the results back for the genetic from prometheus, which was the celiac plus panel. It reads that it did not show the main two genes the DQ2 and DQ8 to be detected and only in the <0.1X risk to be extremely low. It did result back with the HLA DQA1 *05 Alleles detected. It also reads with a breakdown of the over all risks for patient carrying the DQ genotype, which if you let me know I will post these as well. The labs interpretation said: Results do not exclude a diagnosis of celiac disease. I was asking the doctor to run these tests for my family and their possible chances of having the disease, if I showed the markers. I have been gluten free for four years and know how I feel when I get any gluten in by mistake, and I have to agree there is no turning back once you have felt the difference ( like those terrible migranes ). Wait to hear back from you all and your help is ALWAYS appreciated! Best, Susie
  8. Hi Linda, I don't feel that you were off-base with this post and to hear that your little girl is doing well now is wonderful. My own personal experience which puts my view on traditional medicine and the some times over-use of the many pharmaceutical approaches that are used so readily is just that the "over-use" of them and the effects short or long term that can occur. With myself and the way I react to them has landed me in the ER and at home going through nights of wondering what was going to happen ( those would be of course the worse experiences ), and the more common reactions that one can have, has put me on the fence with the now discussion of antibiotics. But please don't read this wrong, because I do believe that our bodies can't always use the most natural approaches and must be helped with a stronger choice of a remedy. Thank you again for your help and your daughters experience, I am very happy to know that she is better. Good health to you and your family. Susie
  9. Hope that I can respond with enough information with the questions you have asked as this is my sisters grandchild who lives states away from our state and they don't have the day to day phone contact as some might. With as little information that she was given a couple of weeks ago she did mention that the grandchild had a catherized test done, I am sorry that I can't say if and what this particluar test (s) were, but this does sound as if this was what you were asking about as they stated that her kidneys were functional. Does this sound right? This would be more than a second-hand communication so some of this again may not be that accurate. I am sure though that they will talk again soon to get a up-date on her Thank you for asking these questions as they might have some value in helping Emily out. Best to your health, Susie
  10. What a great site and read on the benefits of this natural product! Thanks so much Vicky, I will send over the article-site to her mom, this should get her attention right away. I appreciate your help and concern ( big hug )! Best to you, Susie
  11. Thanks Rick, Her mom has been following this with the needed flora care, and giving her daily yogurt, just hope that this is not a problem with dairy for her. We try and give our grandson the non-dairy powder form, this is a learning journey all the time for us all. Thanks for the good suggestion! Best to your health, Susie
  12. Thanks Vicky, happy to know that you are both in unison with these products and the help that it can give! I am just wondering if maybe her pH is out of balance, we suggested this to her mom and she is going to get the test papers at the store and give it a try. It breaks your heart when you hear of the little ones having to go through these conditions at such a young age, and to have them go through the tests, it is difficult. Take care, Susie
  13. Okay! You all are so cute! Thank you for the great ideas and the great minds thinking alike! Hope that Emily's mom will try this out and look into the more natural approachs and not resort to the antibiotics. Take care, Susie
  14. Hi to everyone, Please let me know what orange juices are safe and which ones might cause some problems if the companies cannot completely give a 100% answer and respond with the 200 codex concerns for people who are more sensitive than others. Thanks to you all for the incoming suggestions to come, as I am looking forward to a "good, safe " glass. Best of health to you all, Susie
  15. A Big hug and thank-you to you both for the quick suggestions and personal experiences! I will look into this ( D-Mannose ) and cranberry juice and also pass the information to my sis and her family. My thoughts are like many here I am sure, to apply as much of the natural remedies as not to over-tox our bodies and let ourselves ( our bodies ) heal and balance in their own ways which given half a chance will do. Antibiotics are pretty wicked and for a little one of such a young age, you just want to try and help with some other choices. Thanks again, and the best of health, Susie
  16. Hi to all, If anyone has some experiences with their little ones or themselves when they were younger and didn't know yet that they were a celiac/gluten intolerant with on-going urinary infections and no tests showing any kidney disease, would you please let me know. My sister has a grandchild by marriage not their own, (second marriage, her husband) who is having this problem and the doctors don't know why. Emily the child is eating gluten foods and also dairy (yogurt). The doctors have now placed her on a daily regiment of antibiotics to try and take care of it, which if I am not explaining this incorrectly has been done in the past, and it still is happening. Please let me know if this could be a problem with gluten or dairy? Thanks so much to you all, don't know what we would do without each other here and the help with your own stories and experiences. Best, Susie
  17. Hi Cindy, Read your post, and I have also noticed with the Lays potato chips ( I was eating the classic original ) ones, and getting some negative reactions ( and they tasted sooo good )! Just wondering if you or anyone here has this more often than not? Another question to you and everyone, can you suggest a orange juice that has no cc, as I was trying out the Minute-Maid no pulp version and really think that I was glutened ( called the company and they stated that this particular one was not confirmed a 100% product, with a codex count of 200 ). Does anyone here have problems with products that have this type of uncertain guarantee with that kind of count? I would really like to have a "good" glass of orange juice. Thanks for your help Cindy and all. Sorry, but I would also like to ask about the cereal by Health Valley, Rice Crunch-Ems, has anyone had a problem with this? Thanks again!! Best, Susie
  18. Hi Lisa, Thank you so much for this great sounding product(s). I have been trying to reach them, by phone, but have not had any success. Is this the best way to reach them? Did you order on line? I was hoping to actually speak to someone, to get more of an idea of what they are all about. I agree with your thoughts about the food relationship, this could be something to think about more, but I don't do alot of sugar, and try to eat whole foods every day, but that doesn't mean I don't have intolerances that could trigger these breakouts. I do though seem to notice the sun as a big factor and my reations with the time of exposure and breakouts. Ugh! and Ouch! Thanks again for the Everyday Minerals, Best to you, Susie
  19. Hi Patti, Thanks for your thoughts and support. You know it is pretty hard to take some days with these breakouts and our age factor, thought that was well behind me. I do thank you all for the suggestions with the Everyday Minerals, I want to try this product, but I have not been able to get a hold of anyone by phone the last two days I have tried, and I have left a message to please call me, with no avail. I will try tomorrow again, did you reach them and order by phone? I will also look into the Dakota Free bar soap, thanks. Best to you Patti, Susie
  20. Hi, Yes, I have recently had it checked ( I have Graves disease and was treated with the RAI, a few years ago ), and nothing has been the same since then, as I am unable to tolerate the hormone replacement very well, which is maybe some of my problem with the breakouts and reactions. Do you have a thyroid problem as well? Thank you for your input, which is quite right with the thought with the thyroid and problems with the skin. Wish the doctors would have put that together with my dx and how late it was in coming. Best to you, Susie
  21. Hi Rachel, Just read this post and the concerns. Actually endometriosis is an autoimmune disease itself, and I believe that ovarian cysts can greatly be effected by the hormones with a strong emphasis on the over-production of the thyroid in particular. Just some thoughts, hope this helps. Susie
  22. Hi to All, Please let me know where to turn to concerning finding a product that is gluten free for cover-up facial blemishes/breakouts, that would be hypoallergenic and sensitive-free, as I have very sensitive skin, and need to take extra precautions in whatever I try to use. This has been an on-going problem of late and it is not getting any better. I am post-menopause and I am not sure this is hormonal or maybe deficiencies in my body from the vitamin/minerals aspect. Does anyone here have this problem (that might be connected to some deficiencies)? I have tried some different brands of vitamins, but I even have a intolerances of these on a daily basis. So any kind of help from you all would be great with something to atleast cover these areas up as this is an embrassing condition and my self-esteem is not the best anyway. I have tried the oral meds to help clear this up but again I cannot take these as well. Thanks to all of you and your inputs forth-coming, Susie
  23. Hi Rachel, Sorry for the delay, as the last few days have been more hectic for me. I do want to thank you for your quick response and filling me in on some of your experiences ( it is so great to have these forums to do just that with one another and have the very best input from those who have traveled the path). It does sound as if you have had your "nightmares" with the doctors and their more than fumbling actions in undoing your health even more. One does have to start to fill in the blanks when the doctors lack the time and experience to help the individual patient, and we begin the journey of taking a hold of our own bodies and becoming our best advocate, as so many here have done (yeah)! Your story has such a familiar ring to it, with your intolerances and hyper-sensitive reactions, same for myself. Which brought me to the same conclusion with the dyes and changing over to the fifties and splitting the pills up to make my daily dose of seventy-five, a few years ago. I am though not the most accurate with cutting those pills in half. When I had my RAI ( which again I'll state, wish I knew then what I have learned since ), my levels really jumped quickly and at a TSH of 113 my doctor at that time didn't know how I was even walking around, I do have to admit I was feeling pretty bad. I also had just a week before being dx with my Graves, one of my parathyroids removed which is actually a rare condition, so at least going really hypo was so much better than dealing with these two diseases, it's pretty amazing what our bodies can go through. I have also done the switching around and trial and error with the med's and have tried the natural Armour, but not realizing it at the time ( gosh we have to learn alot, sometimes the hard way ), my ferritin, was at a 18 border line-low, and this just makes trying to tolerate the levoxyl increase almost unbearable with racing heart symptoms, so the Armour was just one pill and quickly taking a beta-blocker to help with the heart racing,and not to repeat. I am happy that for you it is helping and that you have found the "right" med and dose. Happy also for you that you did not have this on-going problem with the blisters and your skin. To answer your question about the break-outs, yes I was having them before the Graves dx, but this has waxed and waned over the years. The trigger for them is the sun and I have to think at this stillpoint with my health that it may well be an drug-induced lupus reaction and the only drug that I am taking is the levoxyl which can be one of the drugs that can promote this kind of adverse reaction and upon removing the offending drug can correct itself, and you know I can't do that. When I was in my hyper state my body was doing the same thing as it is now with the hormone replacement I have to take ( it is always so much worse when I go out in the sun ). What do you think of this theory? If anyone here has some input on this I would greatly appreciate their thoughts also. I realize that if this is the case I will more than likely have to have this a part of my life. I have tried the medicines to help calm the lesions down but I can't handle those. I have to apologize with this post concerning mostly thyroid to others here, but I do hope that it might help with possible problems that others might have and questions that often don't get answered. Thanks again Rachel for your help and I look forward to your message and from anyone else that has suggesttions. Susie
  24. Hi Rachel, Just wondering if you had looked into the epinephrine shots that don't have that in them? I know that like many I can not do this type of shot as I also have Graves disease that was not dx until much later in life ( I am now 59 ). With dental work, and skin cancer and other medical surgeries in the past and even before I was dx with the Graves, I had to explain to the doctors not to use that type of anesthectic as my heart rate would beat almost uncontrollably, causing shortness of breath and other problems. Have your doctors suggested using this kind instead? I would like to also ask you if by chance you have had any kind of skin problems before getting dx with your Graves? If so, what would it be? I have had breakouts on my forehead ( next to the hairline ) and a bit lower on my face. I had this for a number of years and the doctors could not figure it out. This did improve, but, now when I go outside in the sun even for a short time and this would be a more direct sun exposure I break out with a welt looking sore ( three-four of them ) that at first is a little itchy, and then hurts and they start to scab over ( they are filled a bit with a type of infection almost look ) this all takes place with in a few hours of exposure, sorry to get into this with such detail, and believe me it is so embarrassing if I didn't have bangs I would probably never go out of the house. These sores last for days as they try to dry out and heal. I have a few years ago been tested for lupus but it was negative. The reason I am asking you and any of our friends here who are on a hormone replacement for low thyroid ( and for sure you know ours is with being treated with RAI ), when getting too much of this kind of medicine it will show itself in this manner of the outbreaks for myself, let me add that I do see this connection when usually I am over-medicated. Again I am sorry to be so long winded with this question, it is that I usually don't get to "talk" to many other Graves people. If you or anyone here could help me with this I would greatly appreciate any responses as the doctors do not seem to have any answers except of course to medicate and I tried this and could not tolerate them ( as most medicines make my body react ). Thanks Rachel, the best to you and your health, Susie
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