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Everything posted by a84c72

  1. I was diagnosed in August via biopsy (total fluke....I went into for a colonoscopy and endo for reflux). I was floored when I was told about celiac disease. Though, for the past few years, I had been been vitamin D deficient and Iron deficient, so it makes sense. It took nearly a month before I was able to attempt gluten-free...it was very overwhelming. I made it one week gluten-free and I had enough. I was so hungry that I just couldn't hack it. That was maybe second week of October when I gave it up. But, my "symptoms" seem to be getting worse and I don't know if this is related to gluten or not...thought I would run it by here. Problem one: My sleep. This is probably my BIGGEST issue. When I sleep, I never get enough. EVER. Earlier this week, I had slept 16 of 24 hours. SIXTEEN. That is just not acceptable to me. I have an 8 year old and a five year old. This is pretty common for me, though. I have a hard time getting to sleep at night but when I do, I never want to get up. I will drag out and take my kids to school......go back home and sleep until my husband calls to wake me up so I can pick them up. It's impacting every single thing of my life. I don't go anywhere, anymore....I don't even have energy to grocery shop! Problem two (amongst numerous): I HURT. I can't decide if my leg symptomatic of restless leg or of a siatic nerve, but I need weight on it at night to make it stop feeling weird. On top of that, it is not uncommon for my hands/fingers to be STIFF. My arms (upper arms) will be sore, joints stiff...... my blood tests for rheumatoid issues came back negative (but so did the tests for celiac via blood tests). Problem 3: dizzy/"out of it"/zombied........ this doesn't happen as frequently, but my aura is just indescribable. today, I was out with my mother and I just had to leave where we were. My head felt funny and it was almost a derealization feeling. My legs felt like they were going to give out underneath me at any moment...they were weak and I just wanted to die.......it's THAT bad. SO........is this typical of Celiac Disease or are there other things going on? I have got to get to the bottom of this because I am THAT debilitated by all of this....and my kids are suffering. I am missing out on so much. For the record...I've been gluten-free (again) for two days...but I am eating one meal a day because that is all I can really do given my lack of energy to prepare/shop/etc. Thanks in advance for any insight:)
  2. I came across this and it's hit me HARD. Anyone agree with it? This TERRIFIES me! http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/
  3. So..there are a couple if different places around me that have dedicated kitchens and bake gluten-free (one does dairy and potato-free, as well) items. Place one had RAVING reviews on pizza (what its known for) so I thought I'd try a loaf of their bread (they have a deli, too) and a sugar cookie. I haven't gotten into the bread yet, but the cookie, at initial taste was awesome...but then...as I chewed, I had a weird taste in the back if my mouth. The only way to describe it is FREEZER. It tasted like freezer. So...another location is actually a chef at a pretty pristine country club. After contacting him, he told me he would hook me up with different samples of his things. These included various dinner roles, buns, tarts, and a vet soft chocolate brownie. He explained the breads need to be in the microwave for a few seconds first due to the starches, but told me the brownie was fine. Later, I tried that brownie and although it wasn't bad, I still could taste that "freezer" thing in it. I haven't tried the other things yet, but I'm stumped. What gives? And are all gluten-free baked things like this? I have yet to find any gluten-free item (other than naturally gluten-free) that I would go back to eating. The brownie? It wasn't one where I would go back for "Judy one more tiny piece". Not in the slightest. Glutino cookies: HORRIFIC So...ok..anyway...what is this freezer taste I'm getting? I can't believe this stuff is old. The country club guy had orders waiting to be picked up! I feel doomed that I'm going to eat celery for the rest of my life.
  4. So...after my disastrous Thanksgiving, Friday I was hungry like crazy. Did my normal gluten free cereal but after a few hours, my blood sugar was dropping quickly. Because I am still a novice at a lot of this, because I still have no energy to cook from scratch let alone shop, and because I was depressed and POd from the day before, I cheated. I wanted McDonalds BADLY. And it was YUM. It was...I only ate the sandwich. I could tell a short time later I ate the forbidden fruit in the form of some reflux (vanished when I was gluten free). Today, we went to dinner. Was not impressed with the gluten free menu so I CHEATED again and ordered something I LOVED IMMENSELY before. It was YUCK. I had read that taste for all things gluten kind of diminishes after awhile, but only after 3 weeks?? Even my FAVORITE EVER homemade white bread wasn't appealing! And boy....did I PAY for my cheating tonight. Ugh. Not pretty. Never did gluten impact me to this extent until I eliminated it. Cheating is NOT fun. These old foods don't have the yum factor (except the McDs I had) they used to have!!! But really, this much of a difference only 3 weeks out? No more cheat for me.... WOW! Who would've thought!?!
  5. As if I don't struggle enough with adjusting to this lifestyle and trying to figure this out (2 weeks out), today was a disaster for me. I, honestly, am ready to give this up because it causes too much grief for others, as well. We always go to mom's on Thanksgiving and she is very "Type A" about life, in general, and doesn't really pay attention to details and doesn't always remember things I say, etc because her mind is always running a mile a minute. With trying to be tactful, a few days ago, I asked about the ham and turkey she was planning on having. They are gluten-free. She said potatoes and vegtables, as well...and those gluten-free. I would bring my own gluten-free bread and desert (and choke it down since I don't care for it, as it is...)so i thought we were great. The only thing gluten free was the ham. The potatoes were some special potatoes that were full of gluten. So as I am trying to hold back tears and find alternatives, my step-father procedes to swear at me as if I am just being "picky" and on some "fad" diet. I was in awe. I was very upset. Needless to say, even when he "apologized" it was in a loud, insincere way, and I'm probably more hurt than I've ever been in my life. It upset my kids and made my husband frustrated...... And I just can't do much more of this. I still haven't found any gluten-free foods that I actually like but also am not sure how I can live solely on basic meat and vegtables ((I'm insulin resistance so I really have to watch the fruits and, honestly, the carbs, anyway)). I am unsure how to balance both conditions without starving... So while I am sitting here, foodless, I am watching everyone else eat pies and ice cream cakes, I'm wondering if this is really worth it. To just avoid a potential "higher risk" of lymphoma and the like? I still sleep numerous hours and a chef I spoke with yesterday told me it took him 6 years to heal. I'm 40 years old. I want to LIVE my life....not live it frustrated and upset and constantly being ridiculed. I just don't know how to do it otherwise. Anyone successfully find happiness with this? I'm failing miserably at it.
  6. SERIOUSLY???????? ........ First of all, yes, I was diagnosed in August....but I knew NOTHING about this and it was a HUGE learning process. There is nothing about DENIAL here. I didn't sit there the other night and eat McDonald's because of DENIAL. I didn't toss it off like "oh hell, there is nothing going to happen to me". Quite honestly, I was scared as HELL, in tears during all of my trips to the grocery store. I was off gluten, back on......off again...back on....etc......it didn't mean I ignored it since August. How dare anyone make these assumptions about me!!! My jest at "said the girl who ate McD's" was in reference to the irony. And when I put "disease" in quotes, it wasn't meant as a "joke". It was due to the fact that I didn't know HOW to classify it. I've read disease..I've read disorder...I've read MANY different things that it's been classified as. I ate gluten because I had nothing else. I am on food assistance. I NEVER like to admit that. My husband's bonuses and incentives have gone down the CAN since 2008. He works full time at the same job for 15 years and there you go.......the income dropped as of 2008. I am hurting with joint pain...10 hours of sleep is not enough...and I have yet to go into a grocery store without tears trying to figure out my own food needs (do I REALLY want to pay $2/pound for grapes?) and make decisions to pick things for my kids to eat or me. It's easy for many of you to just criticize me and tell me how easy it is to eat gluten free when you've done this for way longer than myself and probably on a little more of a budget than myself. My family isn't gluten-free. I can't replace pots and pans ($$). I can't even find a cheap toaster at this time of year (Christmas) to call my own (yes, some shelves are BARE in their slot). IT IS WHAT IT IS. It's not excuses. IT IS WHAT IT IS. I am doing the best that I can do with what I have monetarily and what I have knowledge-wise. But if you read this initial post, you will see that I LEARNED my lesson. And if it means eating Chex cereals for the rest of my life...so be it. I think it's great that most of you have an easy time with this. I am not. Where are the "YAY! You "get it"" Posts? Or the "Good for you for realizing the repercussions" posts? instead, I am met with the critical posts making my experiences about everyone else but me?? So much for support. What a negative environment WOW. If a white horse means treating others THIS way, I'd rather do without, thanks. I left high school 22 years ago. **POOF** Color me out.
  7. LOL! I am not a rustler!!! I am a HUMAN;) With that being said, I don't know the implications of "cheating" at any level (once, twice, once a year, etc)...I would guess it depends upon the individual and their own body. With that being said, I would probably have to agree that it is a good idea NOT to cheat at all. It is what it is.....it's a disorder....a "disease", so to speak. It is something that is NOT GOOD for your body so why ingest it?? ((said the girl who ate McDonald's the other night...heheheheheee))
  8. I love my rice and potatoes, but my insulin resistance certainly does not. I also have to watch many fruits. My big joke now : I might as well just go graze in the yard. How does this work when there is a sugar issue? Appreciate the support!
  9. I posted something just a bit ago and it doesn't seem to have gone through?? GRRR! Frustrating.
  10. Yes...I have read so much about Celiac disease. I know it included fatigue, but not aware of the AMOUNT of sleep that would fall into this. Our lifestyle is a bit strange and I know I have to find a way to change it NOW. Because I am exhausted all of the time and my husband works 40 hours a week and tries to make up at home what I can't do, we do quick stuff..be it very simple shake and bake meals, etc.....I don't even know if I could hack following a recipe at this point in time. We are very strapped for cash being a one-income household. My husband's income dropped when the economy started going into the can...he lost many incentives and bonus opportunities. I was in Whole Foods Thursday (it is an hour away from us...we don't have one where I am) and I was in awe at all fo the options, HOWEVER, there is no way I could spend $5 for a loaf of bread....or 2.50 for a can of soup......$4 for a microwave meal...etc. The other option for shopping where I am in Meijer. And Meijer as many things, but they are just as expensive. I puchased these crackers once made by Diamond thinking they have to be good...it's a company that's known! WRONG. They were hard and horrible and they weren't cheap. SO....that is another thing I face: how do I know what is good and what isn't? Very hard to drop the extra money on the unknown:( My family isn't gluten free. There are no separate toasters.....dishes.....and I will be straight out and honest: I cannot buy new pots and pans and dishes. A $10 toaster I could probably swing...but not pots and pans. But, perhaps the biggest obstacle is getting the energy to going to the grocery store PERIOD. Even when I do get up, I have no energy to go to do the store. I rarely leave the house unless it is to take the kids to school or pick them up. I don't even do any of my crafts, anymore. I don't see my friends....and it's depressing me. I'm not looking to make excuses because, As I said, I've been gluten free for 2 days now..mainly doing "gluten-free" ordering out from restaurants. So far, I've had no major symptoms like I've had (Gut burning, diarrhea, etc). I am just trying to figure out HOW to do this based on the circumstances given. How do I do this when I am sleeping so much and in pain...at least until I can overcome many of these symptoms? I am downright scared. I truly am. I miss my kids and they are starting to prefer their dad over me (I've noticed the excessive tiredness for over a year and it's gotten worse since September). I really do appreciate the input. Without it, I'd be lost!
  11. By a fluke, I was diagnosed with Celiac Sprue after an endoscopy (that was for acid reflux and done during a colonoscopy). Biopsy showed some very unhappy villa in that small intestine. I was directed to do the blood tests, as well, but every single one of those tests came back NEGATIVE. I've read about "false negatives" but didn't really quite understand why they can be. A followup visit to my gastro had him baffled, as well. He doesn't understand how I can have a positive biopsy but a negative blood test. After the visit, I read that sometimes blood tests aren't as sensitive and stool tests are much more accurate. ANYWAY......aside from that, apparently my biopsy came back consistent with TYPE B celiac. I had no idea these things were TYPED. I tried to find out more about this, but only found one website that talked about it and it was WAY over my head (I think it was an actual medical website FOR medical professionals that would understand the jargon). SO..I am wondering if anyone else knows about this typing and what it means? My doc only told me that from A to D and D is the worst.
  12. WOW! I had no idea! Thank you SO much for this information. Any idea how long it takes to get to each stage? I am trying to figure out how long I've had this issue. From what I know, nobody in my family has had this! Thanks again!
  13. I had an endo when I had the colonoscopy done.....bottom for IBS and some blood...endo for acid reflux. Imagine my surprise when they called with CELIAC! Those villa are BLUNT in my gut. Blood tests after the fact==NEGATIVE. Go figure that out. I read later that sometimes blood tests aren't sensitive enough and at that point, it's the biopsy that doesn't lie (and a stool test is more sensitive).
  14. Thank you for all of the information!!! WOWOWOW! I read that before I actually do the blood testing, I shouldn't start the gluten-free? Still, the villa are pretty blunt, from what I'm told so I am betting the blood work will confirm it. UGH. Figures. I am still very much afraid of trying to get the hang of this and trying to make sure I don't "screw" everything up. HUGE lifestyle change, for sure. As for the hypothyroidism, I've had that all tested when the endocrinologist did numerous blood panels during the insulin/PCOS/etc testing. No thyroid issues. My PCP tested for rheumatoid issues because my body just tends to ache for "no reason". SED rate was 25..... everything else was normal, pretty much (low saturation, low iron, the given stuff I already knew).
  15. For almost a year now, I've had SEVERE fatigue. There are days when I will sleep 10-12 hours, get up for a few hours, and go back to bed for another 3 (even with a CPAP). I also developed what really appeared as IBS and there were times when it was crazy painful after I ate, but was ok after using the bathroom. My upper abdomen started feeling sore to pressure and I complained "my liver hurts". All tests came back normal. I was sent to a gastro for the IBS who decided to do a colonoscopy (and go down through the top, as well). That resulted in a stomach polyp that was benign and I thought everything else was fine until I got a phone call today. The biopsy from the other area the doc took samples from: celiac disease. I have no idea if a biopsy can indicate THAT, but that is what they said. She told me the villa in my intestine were "blunt" which was a flag to the doc. UGH. So now I have to do a bunch of blood work. This, on top of a recently diagnosed PCOS/insulin resistance along with borderline high cholesterol. While going through the PCOS diagnosis, I was found to be deficient in iron and vitamin D. I am 40, a stay at home mother, and scared to pieces. I was afraid before because I sleep SO much and feel it isn't fair to my kids, but now...holy cow. I just wasn't ready for a celiac disease dx on top of an insulin resistance issue. I have no idea what to do. I was overwhelmed as it was (and still am) with the insulin issue, but now I have to add into the equation gluten issues?? I read the "safe" and "unsafe" ingredient lists, but let's be honest: I don't even know what the majority of these ingredients are let alone trying to REMEMBER them when shopping. There is a store that has gluten-free items (and expensive at that...we are on one income), but it's not a large section and I honestly feel as though between the PCOS and the gluten factor, I am screwed, for the most part. I mean, I can't eat a plain baked potato with the insulin issues! We also do take-out because of schedules and looking at many of these menus......there is like hardly anything to pick from. Subway has NO BREAD that is friendly, although, some of their meats are. Well..what the hell good is meat without the bread?? LOL! I mean...SERIOUSLY! So, I am wondering.......how does one deal with the insulin AND the gluten aspect? I read about the type 1 diabetes issues that is on here, but nothing about insulin resistance and/or type 2. Appreciate any insight!