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laurie9141

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About laurie9141

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  1. Hi! you answered your own question! you dont want to waste your time ans probably money, and social life eating expensive stuff.. that no restaurant cooks and no one in your fam understands. so get the gene test, get the biopsy... call GI drs until you find one that will listen and do it... if Celiac is not found, then move on from there.. but at least exhaust the diagnosis All the rest of the drs will order andtidepressants, tell you its anxiety, or order a whole lotta other drugs and will spend years wondering ... so get it done... You have to take care of yourself...You know your own body.. Prayin for your strength and wisdom...
  2. Hi.my NUMBERS ARE tested at every dr I see,everyone wants to do their own.. they all want to blame how I feel, on my thyroid... I do have 20,000 antibodies in the testing... or use an antidepressant.. the ssri's have interacted w my headache meds no one knew at the time ( only a few years ago!) so I ended up w a heart cath. stress test and cardiac monitoring for 2days. they said Im just anxious and take my meds again and go home.. I knew that wasnt it.... so got off SSRI couldnt get off the headache stuff... saw a thing on TV about the interaction and that WAS it!SSRI's they have found, cause damage and chest pain when taken w triptans for headaches... I took Armour thyroid and it is regulated as it can be from animal... when I did find a dr to give it to me it was the same bottle same company same everything... switched to synthroid under pressure for dr's to be able to SEE my NUMBERS... am back to hair falling out, cold, and dry skin... I had a few drs write for it. but they werent covered in my ins. and their appts are expensive and long.. so its easier to do it myself. as I said before, no one seems to care how I feel, they only care about numbers and getting the patient out as quickly as possible... I know, I ve been an RN for 20+ years. but I digress... I want to know what to do next? D8 + D2 genetic test? endo biopsy? what? been too long and Im tired. gonna give it 2 more weeks on the synthroid and cytomel.. if too much hair gone, and still cant get warm.. will be sooner... would appreciate ANY imput ... thanks laurie
  3. hi, have more and more tests get definitive answers! Im 47 and have been struggling to find the answer... NOW doing it myself! if dr doesnt send you to gastro / celiac guy.. then find one yourself... like you, I have no interest in eating an expensive, tasteless, never-can-find-a-food-to-eat-in-a-restaurant diet. if I dont have to... have been off of gluten (that I know of) for only a few days, still taking ambien. hate it... this diet is by no means easy...and I am hungry! I have alot of other food sensitivities, you may have them too.. so when you DO see a dr.. insist on allergy tests too, at least for the major stuff like dairy, oats, tomatoes, rice!! no point in substituting crap like almond milk, or oats for dairy and wheat, if like me, have sensitivities... wont be able to discern the difference! spend time feeling bad or spending money and get it right.. waiting to schedule the endo test myself... No one is going to really care how you feel, but you.. I am finding, even w a so called "Cadillac" insurance.. You have to do it yourself. would have saved thousands of dollars on medicines and copays and tests and YEARS of my life if I'd have found this sooner.. like 24... stay strong..
  4. I think I am celiac have all the s+s plus. Have Hoshimotos.. have 160 speckled ANA several different doctors. no one is taking reaponsibility for any.. each orders one little thing and doesnt like how the other did. have leakey gut too it looks like. I guess I should just have the endotest done and get it over w? anyone know? switched to synthroid at my husbands urging.. but only if I could take cytomel (T3) because I knew I dont covert t4 to t3 very well. Now Im back to being cold, hair is starting to fall out by the handfuls, skin is dry.. Hate the celaic diet. might be easy some say but tastes like crap and I am at a loss to go out to eat w friends,but it looks like I have many sensitivities anyway and cant have nitrates and now tons of common meds either. Heres my point, after getting done complaining for a minute. what do I take synthroid or armour? and why? can order armour online or waste yet another copay to see a dif dr. or stay on synthroid I recently switched 2. Psychiatry will order t3 for those of you that see one.. just ask. 2nd thing is that I seen to have connective tissue disease, kinda like RA.. but is that celiac? does anyone else have all of this w their celiac disease or will any of it get better once Im figure out how to eat? thanks
  5. Hi, Im pretty sure I have celiac havent doen the scope yet gotta wait ot finda babysitter . in the menatime trying to go gluten free tried to do less and I def feel better w less... but not sure ow to celar out all together.. fir instance.. what fast food places? how do I order a burger that hasnt touched a bun or for anyone to understand what I wnat anyway.. is there a fast food list of stuff we can eat? how do I order from going out w friends spontaneously.. or get invited to a friends for lunch? I already find myself isolated for other reasons, now it crushes me to be more locked in or look a freak by asking about food.. I walk trhu the church making meals for a supper ans it smells so good.. we have to leave and not eat because I cant or look like an idiot bringing my own... ans sigh... who wants to dress up go out to eat and eat crap out of your own uninteresting lunch bag and smell all the good stuff around you... so I dont go...like others I hate this.. and add to the fact Im allergic to about12 major foods plus gluten Im lost...anyway done complainin just wanna know about the blood tests thanks
  6. good question for me too! I have IgG of 9 and IgA of 4 tissue transglutam Ab IgA is 6 my CO2 is always low I have no idea of how all of this fits,,, any ideas thnaks
  7. HEY!! been taking Omega 3's for anxiety years and years of trying SSRI's BEFORE they figured out that they dont go w triptans for headaches..( told me I was just anxious) so the circle goes... Omega 3's!!!! cant take trypto phan and ssri's bad bad thing.. read up on depression + omega 3's tried melatonin.. is Ok.. but still working on it.. love the Omegas, no depression no anxiety.. if that's the placebo effect then I can live w that..
  8. no one answered am discouraged. called dr office have appt on feb 23rd. but to discuss what? I see alot of you on here say drs. dont " get it" don't know WHAT to eat, to go on the diet or no? waste a whole lotta money on expensive food... what type of dr to see an Internist, but my results from last year are as stated above... What tests to I additionally get? message they left today say celiac "panel" anyone know what that is or should I bother? thanks
  9. Hi. years ago b4 I knew anything about gluten had horrible abdominal pain and diarrhea felt horrible too. I found it was from "bagged" lettuce any fake thing on asalad bar and I would be amess! In addition found out after we moved from our rental to this house, that our water softener system had changed... NEVER had to take the meds like I did b4... its the magnesium salts they used in the red out to bind w the the iron in the water... have nuthin like that unless I eat fake salad... I always ask when I go to retaurants if they cut it up there or get their salad in a bag... huge dif!@!could be both for you.. go down south on vaca where the ground is red and cannot drink the water... have to get bottled no questran no bentyl nuthin... we use culligan softner salt w no problems good luck
  10. have my bloodwork in my hands.. says celiac disease IGG is 9 and IgA is 4 Tissue transglutamin Ab IGa is 6 Reticulin IgA screen is neg... have all the s+ s but this is negative right? how long to not eat gluten before a false neg? these are antibodies or no? anyone? thanks
  11. Hi just starting this madness.. ate canned chicken members mark I love it didnt find gluten ( I thought ) on the label but read in 2 books now not to eat canned meats? what gives? anyone know?
  12. great answers but triggers another question.. I have to wait a few to maybe more to see my ped if not an emergency... Unless I lie, lol... been having these behavior problems for too long.. ped pulmonologist just threw the now 2 yr old, on meds and said get used to it.. I dont agree. it isnt that often that he wheezes and I dnot want him on steroids to cover anyone's butt. I notice a diff on the 3 yr old when we have little or no gluten... how much is too much? and I wanna start SOON. SO HOW LONG to be off of gluten will screw up tests? I wonder if that's why mine was neg? I had to be fasting for the rest of the tests drawn... so maybe I didnt have gluten in my system? If the ped isnt seeing this first, and the pulmonologist, nor the allergist/surgeon who removed both of their tonsils, WHO AM I GONNA GET TO SEE IT?... AND finally, thank you all for helping me understand... laurie
  13. had what I thought was celiac blood testing (was neg I think,) cant make sense of it all tho' I am an RN! have all the s+s but I read here that maybe I didnt have gluten in my diet b4 the test? it might be false neg? I cant keep paying for blood tests that are wrong.. what do I ask for? I pd 450.oo for a food sensitivity test now the current drs I see say that was bogus! I have, it said, 12 major (to me) food sensitivities, they seem to be real, the migraines are! know I have sensitivities to nitrates too. maybe it its gluten rather than nitrates? One glass of wine and I am on the floor w a headache! What do I exactly look for in testing? see an allergist or GI or who? thanks
  14. WHAT do you cook or prepare for the week in 10 mins or an hour of shopping? not to be smart or anything... or how is it less expensive? I'm seein 8 bucks for a bit of flour.. how does it keep all week? what books do you use? maybe I bought the wrong ones... they were expensive and had nuthin I have any interest in eating having tried some a few mos ago..have to take a several hour trip 2 moro w 2 toddlers.. cant imagine what to take to eat..OK, besides the obvious fresh fruits.. or where to stop to eat along the way..sitting in the car isnt any fun, not eating anything is my usual M.O. let me say, I hate this!