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Everything posted by Kurzemiete

  1. Thank you for replying. Yeah, we, actually and especially me, don't do well with high glycemic index foods. So I have to maintain a kind of Paleo diet for myself. For example: corn has high glycemic index compared with quinoa and buckwheat or even wild rice. I try to avoid corn but I the budget is an impediment to eating a lot of meat and good fat proteins, fish, foul etc. Definitely trying to eat as whole foods as is possible for us.
  2. If you are reacting to some chemical then anything with a chemical solvent may be causing your reactions even the polish on your shoes, formalin in your bedding, furnature polish, traces of detergent on clothes and bedding, recently painted surfaces, traces of cosmetics. It took me several years to clean out the all the toxins from my home. You might also have molds growing in the structure of you house, especially the bathroom and kitchen. Would you happen to recall the name of this book? My daughter and I have this problem with gluten, dairy. I can't afford a totally G.F. diet. That is one of the drawbacks on having a really small income when one is on disability benefits... Anything at all that is helpful would be a great benefit to my family. Thank you.
  3. Hello. Been a while since I've been here. Not that I am necessarily better. But you've (the great peeps on this forum ! have been incredibly helpful and I know how to cope better, and I've made positive changes in mine and my daughter's lives. So, as you can see I am writing to ask you about this new EVIL I've just recently discovered is a neruo toxin, used often in frozen sea foods: Sodium triphosphate. For example; I've been eating frozen fish with gluten-free herbs and spices, added veggies for years and also frozen shrimp with hot butter and garlic. YUM! With no *apparent* side effects. I am not sure anymore...A few days ago, I had good serving of shrimp and the usual, butter with fresh garlic and a bowl of green leaf salad with olive oil and Himalayan salt and again garlic lol (a big fan of garlic here ) . Within an hour of eating, my abdomen was so bloated. I looked like I was pregnant and in my second trimester . Wow! ...Ok, I thought to myself: WHAT did I ingest with gluten or milk, that could be the cause for this?...Everything seemed ok, over the last few days. So I had to read the ingredients of this shrimp. I guess something like instinct told me to do it. And BAM, I came across that thing: Shrimp, water, Sodium triphosphate. I did some searching online and did not find too much except that 'The United States Food and Drug Administration lists STPP as "generally recognized as safe." ' https://en.wikipedia.org/wiki/Sodium_triphosphate THIS means very little to me personally. NOT reassuring at all. I found something which DID scare me: " Even though deemed safe for ingestion, this is one chemical you want to avoid if you've experienced reactions due to eating frozen fish. Check for seafood products labeled as "dry" which means they have not been contaminated with the chemical. Food products labeled as "wet" have usually been treated with sodium tripolyphosphate.STPP, is a suspected neurotoxin according to the National Institute for Occupational Safety and Health’s (NIOSH) Registry of Toxic Effects of Chemical Substances. Food-grade STPP may cause acuteskin irritation, and prolonged contact with skin should be avoided. STPP is listed on the U.S. Environmental Protection Agency’s Federal Insecticide, Fungicide and Rodenticide Act as a registered pesticide and it is also registered as an air contaminant under California’s Occupational and Safety Health Act. The material safety data sheet lists STPP as toxic to the lungs with prolonged exposure having the potential to produce organ damage. This neuro toxin also has the ability to cause internal inflammation from those suffering from autoimmune diseases. Inflammation leads to painful flare-ups." From this site: http://www.yourfibrosupport.com/fibro-relief-blog/side-effects-of-frozen-seafoodtreated-withsodium-tripolyphosphate It seems that there is one more evil to avoid. It's very hard to eat healthy, when you are on disability. It really is upsetting that even frozen fish which some of them I actually CAN afford, now are off the menu. The list just keeps getting smaller. I would like to point out that I have Candida, so it also means I can't eat things like Lentils or beans and the other gluten-free grains by the bucketfuls. I need to maintain a Paleo type diet. So, that's not cheap. We always have a lot of eggs at home and tuna and what meat I can afford, what is on sale, etc. Been considering looking into free range meats and so on but that's not cheap. So, if I go that route, I'd have to split it with a person or two and probably buy a large freezer. Oh god. Just thinking aloud here... I'd really appreciate any and all comments and suggestions. Thanks very much for being so kind, L.
  4. A young man of 23 is in hospital with Venous compression syndrome ( and I am not sure whether it is Paget–Schroetter syndrome, Nutcracker syndrome or May–Thurner). I know that this is a rare condition and these syndromes are usually seen in young, otherwise healthy individuals, Please note he suffers from IBS, is slim/ skinny, and cancer runs in his family, in men. (I do not recall if it is colon or prostate. I know that both his father and uncle did or do suffer from it.) The individual DOES consume gluten, and no testing has been ever conducted to determine whether he has the sensitivity to Glutens, or more serious affect such as Celiac. But since Gluten (sugars) atrophy cells and tissue, I have to pose this Question to this community please. Thanks so much for your time, L.
  5. Thank you so much for your advice RMJ and cyclinglady, it is very much appreciated !
  6. Hello Forum members : So my daughter who has been on the Gluten Challenge for about 8 weeks now, and we want to do the Comprehensive panel. -tTG IgA and tTG IgG -DGP IgA and DGP IgG -EMA IgA -total serum IgA and IgG (control test) -AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests We are not having any luck with a clinic that does all of these tests. I would be more than grateful if you can tell me which of these two Panels is more complete. Sorry , I do sound probably ignorant (and in these matters I am just beginning to learn ) and I am in desperate need of assistance. PANEL 1- (free clinic) -immunoglblulin GAM (IgA, IgG, IgM) -CRP -ESR (He also suggested the following tests: ALT, Alk phosphate, Vit B12, Ferritin.) PANEL 2- (Paying clinic) 1. Deaminated Gliadins IgG & IgA (DGP IgA) 2. Anti-Tissue transglutaminase IgA(tTG) 3. Total IgA (control test) we don’t offer total IgG as part of this panel ' 4. ESR I didn’t recognize AGA IGA and AGA IgG' was what the lab technician told me. Thank you so much, L.
  7. Ok I have an update from one of the lab technicians, in response to my letter to him. ' I have added the abbreviation to our test menu to make it more clear to you. (I didn’t recognize AGA IGA and AGA IgG) We offer EMA separately it cost $71.26 Celiac disease Panel (Panel 60): 1. Deaminated Gliadins IgG & IgA (DGP IgA) 2. Anti-Tissue transglutaminase IgA(tTG) 3. Total IgA (control test) we don’t offer total IgG as part of this panel ' '
  8. Thank you and likewise pardon my bold and not bold because as you said, they have modified this format. I appreciate your feedback. I just off the phone with our family DR (GP) and he maintains that the former test, it is sufficient.. and when I did ask if he knows of a private clinic that does the 'comprehensive gluten panel' testing he basically parroted back the words, re any walk in lab is adequate. So much for that... The three hospitals all have same policy: must be patient in order to have use of their labs (grrrrr!) One hospital is having some special admittance policy of new patients (wish some special criteria? not sure what that is even..) and I left them a comprehensive, polite message and I pray they will take on my daughter; as we just need a DR to facilitate the Gluten testing. I am facing a quandary, I am not sure how to resolve. I left a message at a prestigious (think $$$) clinic; well, they take insurance ( I have none, as I am on disability benefits). Most things (including visits) are not covered by our provincial health card there. So, I want to see 1- How much is the preliminary (unnecessary) consult and 2- what kind of and how much do the Gluten panel tests cost there. My daughter is FED UP with feeling terrible and as she puts it ' dumb' (she is in school) , etc. So really she just wants in OVER WITH (so do I, poor kid). At worst she will have an incomplete Gluten blood panel done: and that really greatly irks me, because we are a first world country and why should it be a problem, if i pay for these test to have the done? We need all the possible comprehensive answers we can get, she deserves that and so do I. My daughter never heard voices, however, she in the past heard what she described as whispers, which have abated since we try had to be as gluten-free as possible. And only in our former apartment (odd); maybe it was neighbors? Not really sure. But of course neurological issues are so prevalent with gluten consumption it is scary. I hope so too, that the Canadian lady you mention, NVSMOM, could pitch in here. Thank you, L.
  9. So we have some updates I would like to report and again to ask for your advice, dear forum members: My daughter is on the Gluten challenge for approx 7+ weeks and she is very eager to have it done with, and so am I ! When I presented all of the tests that Cyclinglady showed me, the DR at the walk in clinic said they only do -immunoglblulin GAM (IgA, IgG, IgM) -CRP -ESR He also suggested the following tests: ALT, Alk phosphate, Vit B12, Ferritin. The Dr. Prescribed for her Naproxen (which she did not fill out). He said the rest of the test are to be performed at hospitals. Unfortunately, it seems this is not as straightforward as i had thought. The DR who refers you to the lab at said hospital, must have working privilege at that hospital. I have called and left messages explaining we need a pt DR for this very reason and we have a steady GP (who does not have privileges at the hospitals), and could they please make an exception etc, etc. Now I wait for a call back. Ok so , next is to tell you that one homeopathic clinic, it sent me a list of tests they can do : Celiac disease Panel (Panel 60): Deaminated Gliadins IgG & IgA, Anti-Tissue transglutaminase IgA, Total IgA. The tests at the lab are for money but i am ok to pay, i just want her to be done with the suffering and find out the results already. But again, the complications re the naturopathic clinic: must have a thorough consult with a DR there, and if they recommend it, then we can get the tests...Sorry, this is just NOT ACCEPTABLE TO ME. Can someone please have a look at the two panels of tests and offer an opinion if this is sufficient or if I should still insist on the entire panel as suggested. (In the astounding, and really EYE opening and sobering book 'Grain Brain', by Dr. David Perlmutter, he states that (and this is news to me re the 12 sub units) 'A person may be sensitive to either of these proteins [found in gluten: glutenin or gliadin; italics mine] or to one of the twelve different smaller units that make up a gliadin. Any of these could cause a sensitivity reaction leading to inflammation.' Thank you so much, L.
  10. Thank you very mcuh ! We will request or if we must, insisit, on them all Really appreciate yours and others' imput, this is overwhelming and yes, scary. Plus we are moving, so as in life, timing is hardly the best
  11. Dear Cyclinglady , I would like to run this by you one more time so I know which tests to request of the Doctor. My daughter is going in a few days. Do I request all of the tets you mentioned, or should I leave out the last one? *-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests* Thank you so much.
  12. Thank you very much for the links, and your help cyclinglady. It is greatly appreciated. Now it is to see what happens once the test results are back. And, I am so concerned of the reactions to her glutening herself . I wish you a happy Summer and happy trails ! L.
  13. OK sorry , one more question here: To have a Gluten test done properly, my daughter must be on it at least how many weeks? I am confused because, I get anywhere from 3-12 weeks, depending on what source I go to. Thank you again.
  14. I really appreciate that cyclinglady (my bike is many times my salvation Thanks very much. AI stuff is a real ..ummm " " ...you know? Not very nice at all. Happy Summer and, thank you for the tip re NVSMOM L.
  15. Can you please tell me which Celiac tests are mandatory, besides the dreaded biopsy? According to this book the doctor suggest these ones as well : 1-Cyrex array 3 2- Cyrex array 4 (he sites this as optional) I know that the standard blood test run by my GP will be very limiting. So, I probably need a referral to a hospital in order to get the entire panel done. Hopefully, the Provincial health insurance will cover them at the hospital. Thank you
  16. Thank you so much everyone for your advice and links. This is frustrating and so much learning to do. I have the books out, BRAIN GRAIN and also WHEAT BELLY TOTAL HEALTH. According to the first book (the second book I haven't gotten far) , all grains ad even carbs (obviously sugars, processed food and additives etc) are harmful, even to non celiac community. L.
  17. That's great! I am happy for you that you are making it work My daughter and I have candida and so we have to eat Paleo style as well as gluten-free (or mostly gluten-free) diet, combined. It does get tricky (and the kind of meat we can afford is limited) to merge the two, when on a fixed income. Thanks for sharing.
  18. * I mean to say a site that talks about the differences between gluten allergy and celiac disease*
  19. Thank you for your reply, it is much appreciated . It corroborates some of what I know or suspect. Yes, we have visited an allergist who performed the skin prick, and it was a waste of time, and I realized how little they know about these issues. Her reactions happen within minutes to hour(s), and goes for day or days, it seems to vary. Can you refer me to any site that talks about strictly wheat allergies and testing for it? I will look for one myself, but, we are also in the middle of a packing for a move, so the testing and timing is less than ideal. In Canada, there are no genetic tests available ( as far as I know, I had looked into it years ago) . I would have to send away for it. And as you said, it's not admissible as diagnostic evidence.
  20. Oh gosh yes! I remember as a child I has frequent nose bleeds, also stress seemed to exacerbate them. I had headaches since age 11(still have mild ones every day, tinnutis since 13 and quasi fibro pain since age 13 as well.
  21. Hello fellow parents. I have not been here in a while. My daughter has lactose intolerance as well as gluten allergy and / or gluten sensitivity and very possibly celiac disease. She drinks almond milk. We try very hard to not eat glutened food because she has the horrific stomach aches , vomiting, diarrhea. After such episodes she is grey in pallor, sweaty and exhausted and she almost passes out (must sleep) for hours. She has infrequently the neuropathy in her hands and arms. Also , she used to hear whispering, or what she claimed to be whispering. (She is now in her late teens, and is claiming the whispering was in fact , our neighbours talking. So for me, it is hard to judge what did actually hear [that I am slightly hard of hearing, does not help in this situation] ... incidentally, the whispering occurred only in our home.) Ok so back to the core of my asking for help. Our family doctor claims that for her to show up celiac positive (and by default wheat allergic), she dos not need to gluten herself at all. Ditto for the lactose intolerance test. He is saying to do nothing and just show up for the blood draw(s). From the posts I have read , a person has to be glutening themselves for at least 3 weeks if not 8 or more. Regarding the lactose intolerance, I am not sure, I need to do more research. If anyone can shed some light on this, I would be immensely grateful. Thank you, L.
  22. Alrighty then ...Would you consider the hand bake method easier then, or the machiene method? Thank you ps i know the sell some machienes with the gluten-free settings in them but they are all quite expensive; this one I recieved from freecycle.com
  23. By prep work do you mean to premix all the stuff by hand initially? Sorry but I am a total newbie with regards to this ... Thank you I am also very interested in various flours, I have some recipes to make rye like breads and fancy sweet breads. If I can nail that down the road it would be such a thing of beauty lol! ~All of a sudden the hand method seems easier perhaps...lol
  24. I am very eager to bake with this machine some gluten-free breads so finally we can have a sandwich in our house !! However the provided recipes have me stumped as they are ALL designed for gluten baking. I have various gluten-free flours bought, also xanthan gum etc, so i am fairly ready to bake I know as a last resort i can just hand bake the loaves, but having some health issues, the ease of this machiene would really be a boon! I appreciate any advcie hints, recipes and tips, thank you in advance.
  25. Hi everyone. Both my daughter and I have tested negatve for celiac on the blood panel however I am as sure as is possible that we have it (perhpas in very mind form) or more likely, gluten sensitivity. There is a long history for me with neuro symptoms, i have firbro and epbsein barr, lyme came back indefinite 2x. On now to my daughter, and I am sorry there may not be a lot of details as I am very short on time. Any suggestions would be GREATLY appreciated. She has had GI issues for years. terrible pains, sweats and D following it. The pediatric gatroentestinologist after SPEAKING to us said she probably has IB. Oh boy, did we feel 'enlightened'. How typical of a regular dorctor to be so general, although this one was a specialist. Anyhow, this was several months ago. My daughter is NOT gluten free, when she is out of the house she gets it. The thing is because I have almost (but not entirely) eliminated it at home her terrible GI Symptoms have for the most part vanished, she just goes back to the old habits. Our family DR xwrote on the referral papar schitsofrenia(sp), oh gosh! I have a friend who is a neurologist and he said she DOES NOT have it. I have read that gluten DOES cause it and therefore it makes very logical sense that my daughter is expereincing hearing whispers as a glutening reaction. She is almost 16. Some one heard of this and we are in essence made to go to this doctor not of our volition... I will come armed with books and articles which link gluten to neurological disturbances. I hope very much she has an open mind and will not force any pill on my child. (even if this is the case I will very doubtfully allow her to take them...) It makes no sense that unless ALL GLUTEN which if i am not mistaken takes many months to leave the body, is GONE FROM THE BODY, to discount this, in light of her symptoms and my history. PLEASE if you have ANY AT ALL SUGGESTIONS I am very much grateful
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