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Everything posted by amberlynn

  1. Yeah, that's what I thought. I told her this as well, but she seems to think that the test should show something - and the endoscopy will pick up something if my intestines haven't healed (which it sounds like they haven't). I avoid soy for the most part, most meals are dairy free. I haven't noticed any worsening symptoms depending on whether I eat dairy or not. In fact, sometimes it doesn't even matter IF I eat. My tummy is awful (usually in the morning). I've had a persistent dull ache in my right side for the last month. Hence why she thinks Crohn's is also a possibility. But, I don't have diarrhea. I just hope they can tell me something it's been so frustrating with people not believing me.
  2. So after a bad 'flare up' of something last month, I called the doc and told him. I've had issues on and off for years with my BM's, but this was exceedingly bad. He sent me back to the GI (last time I went was 3 years ago - they wanted to do a colonscopy then, but couldn't tell me if it was safe while BF, and it didn't seem a big deal then). Saw a new Nurse Prac., and she was amazing, and asked all the right questions. I explained all my issues over the last few years, even back to when I was 9 and complaining of a tummy ache everyday (it was at that point I stopped complaining, no one cared). She thinks at the very least, possibly IBS, probably Celiac and/or Crohn's. She ordered a blood draw to check for a bunch of stuff, including the Celiac and Crohn's markers. I go for my upper and lower endoscopy on Wednesday, finally. But... I've been gluten-free for a year. When I asked my GP for the test, he didn't think it neccessary. I couldn't afford to go to the GI at that point. And since I felt so much better being gluten-free, I just gave up on a diagnosis. What started me back down this track is my symptoms coming back. When the cold hit, my arthiritis came back so incredibly bad. Everyone kept telling me it was stress. Then my stomach started back up. Of course, I've been basically pain free again, but I started my anti-inflamatory soon after the pain started. Now I've been off it for a few days, of course its back again. The arthritis is weird though. It... floats?? It's random, doesn't stay in the same place for more than a few hours. I don't know what to think. I won't get a positive diagnosis for Celiac's a year after being gluten-free right??
  3. I'm having an upper and lower endocopy on Wednesday, so we can feel nervous together! I've heard it isn't so bad, as everyone has stated - but I'm still nervous . Mine is coming after years of issues, and I finally found someone to listen to me! A nurse practioner at a GI's office - and she thinks its possibly IBS, probably Celiac's and/or Crohn's. Yay... Oddly enough, I'm VERY Irish. Like, 2/3rds Irish :0). Is this common among those with Irish descent?
  4. I would call them and let them know that you did wind up with a rash. My friend's little boy had a similar problem, with 'cockroach' on the SPT. They had her measure the size of the rash and took that as a reaction.
  5. Yeah, I've been reacting severely to even the tracest amounts of gluten. The reaction is ridiculous, lol. But, yes, you could have developed a dairy problem as well. I, personally, am having a sudden severe issue with egg of all things. I've always had a little trouble with them, but now I can't eat eggs (unless they're baked into something, go figure). So odd.
  6. Allergy testing is not always accurate. It really only gives the chance that a reaction may happen. There is a small amount of people that allergy testing does not work for at all (something like 5% of people). Skin prick testing is more accurate, but not the end all be all. For some, it works fantastically, for others, not so much. We have a 3 year old girl in our local allergy support group who tests negative on EVERY test - and yet is anaphylactic to dairy, chamomille, grass and more. The only true, definitive test is reaction. Her Mom has the same problem (not responding to any testing) - and lived with food allergies and their consequences for decades because the doctors said her tests were negative (it wasn't until she was nursing her daughter and had to go on an elimination diet that she figured it out - amazing how all those odd symptoms go away, lol). For myself, I've never tested positive to anything either. It's rather frustrating because the doctors didn't believe me about my issues either. I had to take matters into my own hands. I know how frustrating it is. But, it might be very likely that since you had zero reaction to the SPT, you may not get many answers from the RAST test either.
  7. My doc gave me (forgive me spelling!) Meloxicam? It's an anti-inflammatory. It worked yesterday, thankfully! Today I woke up mostly pain free. I was glutened a week ago today. I have zero interest in taking liver and body damaging pills for forever and a day! I'm just so tired of being in pain and tired. I know that I can't just take a pill and be OK. My gluten sensitivity (or Celiac, whatever) is obviously linked to this, since I'm fine so long as I stay gluten free - and make it to the gym a minimum of 3 days a week, lol. I think that's probably why it was so bad this time. I've been potty training my 2 year old, and only made it to the gym on Friday. Thank you very much for the advice. I feel like I'm just not taken seriously, and I'm really debating on taking this to my doctor. I AM writing down my symptoms EVERY day (even if there aren't any!), any known glutenings, etc. He wouldn't give me the Celiac test so... Though I know that its not always accurate. It just leads me to believe he's going to say its something else... and I'll need to find a new doctor. My co-worker is seriously considering going gluten-free as well. She said she would have a hard time sticking to the diet... my response was "if you tried it for 2 weeks and your pain went away, then it would be worth it, wouldn't it??" She agreed. I'll give the doc a call on Monday I think. Schedule my yearly physical. Go over what's been going on, and hopefully the insurance company will pay for the testing...
  8. Is that possible? I know that autoimmune diseases can run together (though I am not diagnosed Celiac, I maintain that I'm highly allergic b/c I do suffer BADLY with even the slightest cross contamination!). And 2 co-workers want me to get tested for RA. I have not been tested for ANYTHING. I'm getting really frustrated with the lack of concern... because to me, this seems like cause for concern when I am not even 30 years old. So, I cut the gluten out in October. I had horrible pain, mostly in my right hip. But my joints would ache, and my knees have made noise for years. The hip pain may have distracted me from other pain, but my legs always hurt (in fact, when I use to manage a theater, I would go home in TEARS my legs hurt so bad after an 8 hour shift, I was only 24). My hands as well. Well, now if I get glutened, the pain is horrible. It takes a few days, but I've tracked it down, and can tell you how long it takes before I'm hurting. That night, I'll start with a mild headache and a slight rash. Next morning, awful migraine. The next day, the awful hip pain returns. Day 3, all over pain. Hands, knees, legs, feet, shoulders... everywhere. Day 4, wake up feeling like I have fluid in my hands, knees, elbows, right hip, right shoulder, both ankles. Soooo stiff. Day 5, getting back to normal, but still stiff... Day 6, back to being horribly stiff. I had to take an anti-inflamatory pill this morning for it. My back is soooo achy as well. It's just so ridiculous how much PAIN is involved! It was my hubby's fault, he forgot to wash his hands... it happens about once a month, takes me 2 weeks to get back on track (and have my sparkle back ). Asking a co-worker who has RA (and suggested I get tested), she said her symptoms started out quite similar. She is not gluten-free, and is on meds for it. I just don't think I can handle more of this... I know as long as I stay gluten-free, I remain symptom free. I just feel lately like I'm fighting an uphill battle with my own body!! Why does it rebel against me??? And this happens the same way every time I get glutened from the teeniest, tiniest amount of CC. Ideas? Should I ask for an RA test??
  9. My son gets hives (and swelling, etc) from dairy. He's considered anaphylactic to dairy, and we carry benadryl and epipens. I occasionally get hives if I get gluten. Sometimes from sulfites - doc put me on Imitrex, which is a sulfate drug for migraines - and I wound up with some major problems breathing!
  10. I made this, but subbed all purpose flour, tapioca flour and some sorghum, plus aded a little xanthan gum to keep it together. It turned out great! Nice and spongy, springy! Glad to have something quick to make, cause I am so tired of making a loaf of bread twice a week!!
  11. OK, here's what I did... I really got to start writing this stuff down, lol. Measured 1 1/2 cups bob's gluten-free ap flour, added tapioca flour to make 2 fulls cups (all together, so 1/2 a cup of Tapioca) 1 package of yeast, 1/2 tsp of xanthan gum, 3 T of sugar, combine all in a large bowl. Add warm water and 1 tsp of salt. Beat with an electric mixer on low to medium sped for 30 seconds (I did it by hand). Using a wooden spoon, mix in 2 more cups of gluten-free AP flour. Knead in enough of the flour to make a moderately stiff dough that is smooth and elastic. Cover and let rest about 10 minutes. Grease a baking sheet generously while waiting. After the ten minutes is up, divide the dough into 12 portions; shape into smooth balls. Punch a hole in the center of each and pull gently to make a 2 inch hole. Place on prepared sheet. Cover and let rise for 20 minutes. Broil bagels 5 inches from heat for 3-4 minutes, turning once (the tops shouldn't be brown). Meanwhile, in a deep pot, bring 6 cups of water and a tablespoon of sugar to a boil. Reduce heat, and simmer bagels 4 or 5 at a time for 7 minutes, turning once. Drain on paper towels. Place drained bagels on a well-greased baking sheet and bake in a 375* oven for 30 minutes or until tops are golden. Makes about 12. Of course, you can add whatever you like too. Raisin, cinnamon, onions, etc! Yummy! I made Devil's Food cupcakes a few weeks ago, same cookbook. I just sub what I need to (usually adding corn starch and tapioca starch), and some xanthan gum. The cupcakes were divine! I took them to work, and everyone that was brave enough to try the weird gluten allergy girl's baking thought they were great, lol!
  12. I swear, my best cooking guide is my old Better Home & Garden's cookbook I got for my wedding! I pulled it out today, and made bagels! It took me nearly 2 hours, but they rose, and they baked, and they actually tasted good! Now I want to make some 'kid' friendly ones, different flavors, etc. It was labor intensive, but easy at the same time. My DH said "hey, you're getting really good at the gluten-free cooking stuff", and he usually doesn't pass out compliments, lol . They took 2 hours to make, and they were GONE (all 12 of them!) in 20 minutes!! DH & I had eggs and cheese on them, next time, sausage . Nothing cheers me up quite like making food that is gone quickly .
  13. I love your story! So glad you figured out the cause of your family's problem. I just discovered in October that both I and my 4 year old son have a gluten allergy. I'm 75% sure my Mom also has a problem, and relatively sure my Dad has a problem as well. My symptoms were so vague, and seemingly unconnected. Severe nausea, joint and muscle pain, allergy fog (I'd had it so long, I honestly thought it was NORMAL), I had pain in my hip that was so bad I almost had surgery on my back b/c of it (it was a debilitating pain that would make it nearly impossible to run, walk, climb stairs, carry my 2 year old!!), severe fatigue, constant hunger... I'm sure the long I'm gluten free, the more I'm going to notice. I am not diagnosed with Celiac, though my doctor refused the test and simply recommended I try the diet. It worked, and now I cannot see going back on the painful food to get an accurate test done. I really wish my Dad would try this. He's a diabetic (diagnosed at 7), has had kidney disease for years (has had 3 transplants actually), numerous other health problems that I can't even list cause it would just take too long! He takes a ridiculous amount of medication everyday. My Mom is planning on going gluten free, and I really hope she tries it. She suffers from depression, insomnia, and lots of other stuff. Congrats on finding your 'cure'!! I know how good it feels to not feel like crud anymore
  14. Ha Ha! The sad thing is, he asked for help - and the lady handed him the tartar sauce! WtH? Whatever... Yeah, I made chocolate waffles with some cocoa I had in the cabinent. Put some peanut butter on them, and they were super yummy and filling! As far as dinner goes... I'm still at a loss. Hubby will have to improvise .
  15. So, I've got no money to get to the store, so I need to make something with what I Have on hand. I've got no yeast, of course, except one packet that I'm pretty sure is nasty bad, lol! I found it hidden under some stuff in the cabinent - and there's no way I'm using it (it doesn't feel grainy, it feels mushy). So, I've got Sorghum, Tapioca, Garbanzo and Bob's Red Mill All Purpose gluten-free Flour. Oh, and corn starch. Eggs, almond milk. Sugar. Brown sugar. No cream of tartar, cause I asked my hubby to pick it up - and he came home with tartar sauce . Any ideas or recipes?? My kids are bread-aholics, and I don't know how we didn't get enough groceries for the week!! We're even down to our last 2 apples (which they are currently eating, lol). I've got to work tonite, and I want something to feed them besides hot dogs...
  16. I *might* start feeling a little tired after a few hours, but it doesn't hit til the next morning. Without fail, if I get glutened, I'll get up feeling awful the next day. I'm trying to figure out what my problem is today... I'm hoping its just something simple and not a glutening...
  17. Get a good gluten-free prenatal vitamin (kirkman labs is good - and it didn't make me nauseated!). Eats good, green, leafy veggies. Get plenty of rest and exercise (and continue while pregnant!). Start doing kegels now http://www.mayoclinic.com/health/kegel-exercises/WO00119. You've gotten LOTS of good advice!! And there's lots you can do while pregnant to help ensure an easier delivery (baby spinning, working on proper baby positioning can help against back labor, c/sections, etc...). Good luck!
  18. Ha ha, I've lost about 2-3lbs now over Christmas!! In all seriousness, I wouldn't have gone. That's just sucky. My friend is having his rehearsal dinner at my FAVORITE pre-glutenfree pizza place. Needless to say, I called him the other night and explained that I was highly uncomfortable even stepping foot in the place (I get glutened from airborne gluten lately), and that my hubby & I were going to go out on our own for dinner. In fact, I was going to just 'suck it up' and go, but my husband said NO WAY - he knows what would happen, and doesn't want me to feel sick for the wedding the next day.
  19. OK - my kid is severely allergic to dairy, and there is the protein in the butter. He is NOT lactose intolerant, he is anaphylactic to any and all dairy. So, we're not new to this, lol Do not try to clarify the butter either. There is still a chance of the protein being there and making you sick. Smart Balance Light is casein free, and Fleishman's unsalted sticks I believe are as well (they have a lot of soy, which my son cannot tolerate). We love the Smart Balance, tastes just like butter.... at least what I remember butter tasting like, lol .
  20. Wow, I can remember being in Jr. High and having the big D in the middle of the night. All through HS, etc. Embarrasingly enough, at one point in college after I had mono (really bad, lost 40 lbs in 2 months!), and would constantly be running to the bathroom and even once I didn't even make it. No warning or nothing. So humiliating - but I was alone at work thankfully. I had no idea that that wasn't normal though. I mean, I knew that having an accident wasn't normal, but the diarrhea, I thought it was... .
  21. I ask the checkout lady to make sure that DH's bread is in its OWN bag, and I place it at the far end of the counter, and I put it away first thing when I get home, wash my hands, and then put the REST of the groceries away, lol. My DS is severely allergic to milk, and we have to be just as careful about CC with that as with gluten. His aunt tried to give him bacon off her plate, and DH was like NO!! Don't do that!! LOL. They just don't get it...
  22. Oh my! Yeah, I've got a sinus infection right now, and it started with a nasty cold a month ago. My Dad said "I told you, your body is short on gluten, you need to eat more gluten!" So, its a big fat joke . Whatever. So, it'll take a LONG time, but eventually they might get it. Once you're better and they can see that, it'll help. Hopefully you're get your diagnosis! Then you can explain that yes, even the smallest, tiniest, invisable piece of gluten can make you VERY ill.
  23. Yeah, if having a formal diagnosis would help me pay for the food afterward, I would probably suffer a little while longer! But, what if it just a sensitivity and not Celiac? Tests aren't 100%, what do you do then? Just eat the cost? Just curious. ciavyn - yeah, I'm pretty active too (I went to the gym 3 times a week even). I work retail and have to be on my feet for 8 hours at a time, and for the longest time I had to wear sneakers with a doc note. Now I can wear heels to work . My issue was the hip pain. It was soooo bad. Many mornings I had to sit and go down the stairs!! I'd spend the first hour of the morning stretching out so I could walk. And forget about carrying the baby.... ugh. I am very grateful that I am no longer in pain!
  24. jeez, had a nice long post that my 2 year old deleted . I'm also 29, and have long felt much older than my years! Not as severely as you seem to, but I definitely understand where you're coming from. I felt like a horrible mom b/c I didn't have the energy to really deal with my kids. I went through all the motions, but when you've got 2 kids, 2 years apart, and one with Autism who has high energy and likes to run , people just assume you're exhausted all the time, lol. But my exhaustion started before high school. I honestly think its a miracle I made it through school and college! My DH was tired of listening to me complain about the joint pain, not being to stand or walk for long periods of time, and being soooo tired. It wasn't until my nausea got SO BAD - I actually thought I was pregnant again, to my surprise all 8 tests came back negative, lol - and my migraines got to the point where I was having at LEAST one a week, if not more, that my DH urged me to try the gluten-free diet again (I'd been on one previously when nursing my oldest son who had many food issues as an infant). I started, and stopped, and finally just DID it. I spoke to my doc who doesn't believe I have Celiac (but I do...), but did encourage me to try an elimination diet. So, here I am. It's been almost 3 months, and honestly, I can't believe I used to live in that pain... Now when I accidentally get gluten, I'm limping around, exhausted, and nauseaus. And that migraine wanders back too. Not fun. I also had the allergy fog, where I just constantly felt like I was in a daze. Couldn't concentrate. Couldn't walk in a straight line either, lol. That's also stopped! I was scheduled to have back surgery last July - turns out it was great that it was cancelled, b/c it was completely unnessary! The debilitating pain in my leg is totally gone! The list just goes on and on and on... I think you already have your answer. If it were me, I'd just go gluten-free now and save myself the pain. My doc refused to test me, and I can't afford the genetic test, so I may not ever have a true answer. My body tells me that I can't handle it!
  25. I searched and searched and couldn't find an answer!!! Good luck though, I'm thinking maybe not...
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