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About Crystalkd

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    Decatur, GA

  1. I freaked out when I first started the diet. I understand. I buy 1 "special" item a month that is a gluten-free goodie quick fix other than that it's meats fruits and veggies for me. If you have a Trader Joe's near you thier gluten-free pasta is good and about 1.99 instead of 4.99 for the same stuff under a diffrent brand name at Whole Foods. Also if you're really stuggling look into getting Food Stamps. Before the diet I could make $50 last a month. Not any more. Also because of changes in my health I've had to get more quick stuff than usual but even there you can be smart. When you cook cook more than you'll eat and store them in single servings freeze what you can so when you're in a hurry it won't take long. Don't be too hard on yourself. You will figure out what works for you. Also with angel food you can get the gluten-free box and the fresh fruit and veggie box for about $50

  2. I understand both sides of this debate but here's how I see it. Until 2 years ago I thought I was just dealing with Mild Cerebral Palsy and depression. Then comes the Ceilac dx and the gluten-free diet and the "depression" goes away. For the 26 year prior I was still doing all the normal things one does in life while dealing with exterme and constant pain. After going gluten-free alot of the stuff went away but the pain remained. My spine had SHIFTED and I was still walking and working. And then there is the fibro that I can't take meds for because they don't agree with me. Now add new dx'ed Addison's Disease that I've apparently been fighting for quite a while. I'm doing ALL I can't to lead as normal a life as possible from working to jury duty ect ect.

    In a lot of cases. NOT ALL but a lot you have to decide that you will continue to lead your life and not let your circumstances beat you. Some times it means a shift. I've been on disability for several years hoping to be able to get off it and working to that end. That may end up not being possible but I'm trying.

    My point is this: Don't let ailments get in your way. It just adds to the stigma. It's hard to be disabled in this country. Celiac in itself is not a disability. Of all the things I have to deal with it's the EASIEST to control.

    I'm not putting anyone down just putting in my 2 cents.

    (I say all this because I know there are many that have read this and not posted.)

  3. I went on a cruise using Royal Carribean last year. Our travel agent screwed up and didn't make it clear that I needed a gluten-free diet but it was handeled VERY WELL once I got on board. The food was great and if there was nothing on the menu or even desert menu that I could eat they would make something special. They even had gluten-free bread sitting on our table when we went to dinner. It was really cool. I had to eat all my meals in the dinnimg room but they handled it very well!!

  4. Not sure what's casing your symtoms but you do understand that what your doctor is treating you for is Addison's Disease right? They've started treating me for that as well. I just spent 9 days in the hospital because of a crisis. I felt better with the IV as well. How is your blood pressure and sodium? If they suspect your pituatary glad once that's figured out and meds are adjusted you could start feeling better. They are looking at mine too as well as a possible platelet problem. I gurs right now drink as much water as possible and if your craving salt get more in your system.

  5. As far as waffle house. If I decide to eat there I sit where I can clearly see the cook and order an omlette and hasbrowns after I carefully explain my "allergy." I usually don't have an issue. The last time I went to Carker Barrel it was VERY hard to find something to eat and was pretty much told that I shouldn't eat there. IHOP: Be careful!! Once agian I'd say an omlette but make sure they don't put batter in there. Chipotle's burrotio bowls are cool.

  6. thanks for your response.

    I have been on the diet for 8 - 12 months (didn't just start a few weeks ago or even a few months ago) so if I was staying away completely I should not have any problems by now - like I said I am 85% - 100% healed. My reactions are much less severe because the amount of gluten I ingest is so small now. I am eating gluten on occasion accidentally without any doubt. Usually I can stay fine for a couple days. I think the only thing to do is eventually get my own refrigerator, my own oven, my own kitchen

    The reason I believe those gluten-free products were contaminated is that I drank orange juice from other brands with no problem and the same with the tortilla chips with no problems. Ate some from contaminated bag yesterday -problem and same for past days from that bag, ate some from a newer bag today - no problem. Problem is in the bag.

    I am not taking any supplements.

    If you are sharing a kitchen with gluten eaters that could be causing you a problem. There are so many things to watch out for in that situation. So many in fact that I won't do it. Gluten particles float which could explain the problem with the juice. I can't give you tips on sharing a kitchen because I refuse to share one. I seem to always get sick. The last time I had to think about doing it I nearly had a panic attack. That's not to say it can't be done it seems like others can do it but you have to be really careful. I hope you find your answer and start feeling better.

  7. I'm IgA deficient, too. I don't know what other tests are IgA based, but since IgA is an antibody, my guess is it would be specific to immune system issues, if it is used in other testing. If you are not gluten free already, ask your doctor to run the IgG version of the tTG test. It is useful in those of us with IgA deficiency. It's not as specific to celiac as the IgA, but if it comes back elevated, it can be helpful in the diagnostic process. I didn't know about this test at the time, and never had it done.

    It doesn't throw off any genetic testing, because whether your are IgA deficient doesn't change your genetic makeup. Testing positive for the gene means that you have a genetic marker associated with celiac disease. It doesn't mean that you will develop celiac, but it can help put some pieces together, especially if you have inconclusive blood tests. My doctor used my results to assess my risk, and used my dietary response to diagnose me.

    Your test result from Prometheus should give you your risk factor based on your genetic results.

    Thank you. Before the gluten-free diet I had a laundry list of conditions that cleared up almost entirely on the diet but I'm starting to amass another list. It's shorter than the orginal. I was wondering if being low on igA by even 1 point could be throwing other tests off. I'll bring it up with my internist at the next appointment. It's confusing and I want to be on as little meducation as possible. Because the internist is convinced it's Ceilac and a gluten allergy but together he wants my mom to get tested to see what hers comes up with since we think it comes from her side. I'm trying to avoid the mess I ended up in two years ago. I have learned the hard way that seemingly unrelated things can and often are in my case at least connected.

  8. I know I have reflux. I'm fine with that. I've had problems with acid for a while. My main question is what other tests can being igA deffient throw off. And what does testing positive for the HLA-DQ8 gene mean? And does low igA mess with the genetic test like it does the blood tests. I've been tested for many auto immune disorders since and there are still lingering issues besides the acid. It's like there's one more missing peice to the puzzle and maybe it's right in front of my face.

  9. I'm asking this because I'm having other medical issues that I'm trying to resolve and maybe the test results aren't being look at correctly or others could be messed up by low levels

    I've been gluten-free for almost two years now even though test results were negitive. I got a copy of the results after those test were run and decided to take another look at them. I'm igA deficent by 1 point. I know that this causes the blood test for Celiac to be pointless. My question is this: Given the fact that I have Cerebral Palsy as well what can low igA cause and what other blood test can it mess up.

    Also in the Prometheus Celiac PLUS evaluation that is Serology and Genetics does the low igA only throw off the igA part of the test? They also tested HLA-DQ2 which was negitive but DQ8 was positive.

    I have come to relize that the doc that ran the tests before I went gluten-free may make up in his mind what he thinks is wrong. He just tried to put me on a anti-depressant for acid reflux. He also found I have a hiatal hernea that wasn't there 2 years ago and a gall bladder poylop.

    Thanks guys!

  10. It's okay. It will get easier. As far as the deserts. you can make some of your own. Foe easter I made a pudding pie frpm Pamala's Brand Gingersnap cookies. Next time I'll try arrowroot cookies. Also Whole Foods has a store brand line of gluten-free mixes. I tried the brownies. They taste like the real thing. I went to my first cookout since going gluten-free yesterday and made my own BBQ to take. It was good! It took me a good six weeks to greive and I'm still making adjustments 2 years later that I should have done at the start. Pick up Living Gluten Free for Dummies. It's helps. I also saw Gluten Free cooking for dummies that I'm most likely going to get.

  11. This will probably sound like a stupid question, but i'm going to ask it anyway. If we are supposed to treat gluten as "poison" (which I agree that it is, and we should view it this way) then why does the labeling system only require gluten free foods to contain 200 ppm or under to be considered gluten free. I thought any amount of gluten causes damage to our intestines, so how can we eat so called gluten free food and be safe? sorry new to this and just confused :( thanks for any help with this question in advance

    I understand the question my question to you is: Do you have Celiac or are you Gluten intolerant? We have both here that's why I ask. That also effects the answer to your question. I believe there are two diffrent "rating" systems. I don't understand the diffrence as I have not really researched it.

    If you have Ceilac then it is my understanding that any amount is damaging. There are some companies that use dedicated gluten-free lines and facilities. Therefore I think they are as safe as you can get. There are also companies that make gluten-free foods along with non gluten-free foods that are good at cleaning thier lines between runs. It takes time to learn all of that and it's a constant process.

    Stick to your diet! Just remember even the best of us have "accidents" it happens. I have had very few reactions to things that are labeled gluten-free but I still do look at what's in them and who makes them.

    I think there are some that just make all of thier stuff from scratch (or most of it) so that they can totally control what EXACTLY is in thier food. There are other's that make thier own stuff and buy packaged stuff too. It's all about what you feel is best for you and what you have the time to do.

    Being new to the diet is hard. The first six weeks were the hardest for me. You will get used to it and then it won't seem so confusing. Just remember not to be too hard on yourself.

  12. All of my tests came back inconculsive but in the blood test I'm IGA deffiecant so the blood test is pointless. As far as the biopsy it came back inconclusive too but here's the thing you have think about with that: Your small intestine is large if you streched it out so who's to say they looked at the right part. As my internist says to me: I treat people and not test results. You're test results say no but your symtoms say yes so as far as I'm concerned you have a gluten issue and don't EVER eat it agian.

    I've been on the diet for 2 years now and problems that everyone told me were my Cerebral Palsy or related problems have gone away as has the unexplained pain and tremors and the "depression" I was dx'ed as have is GONE! I'm no longer on 5 diffreent meds to control pain or any of the other meds. If it were not for the gluten-free diet I am 100% positive I would be in a wheelchair and living with my parents instead of finally persuing my dreams. I'm doing so much better than I ever have in my life. The only reson I sometimes feel the need for the label of "Celiac" is if I'm sent to a specalist who refuses to test me for "Celiac related" conditions.

    Try the diet. If it makes you feel better you have a gluten issue and all gluten should be avoided. Period. If it makes you feel better your partner should be understanding.

    Labels aren't everything! Doctor's and thier tests don't know everything! My GI just tried to put me on an anti-depressent for an acid reflux problem! They don't know everything and some of them make up thier minds on what is wrong and don't even look at what's really there. If a label is that important to you look for a celiac specialst in your area that will do the genitic test for celiac and ask for an endoscpy. The colonoscy doesn't show Celiac.

  13. I took all the tests and they came back inconclusive. None of the tests will show anything since you've been gluten-free for so long. I don't see the point in doing an endoscpy unless your having GI symptoms. I just had another one done because of issues. They found a few things tha they're now looking into. The GI is also looking at my villi agian since he was in there in case I'm getting glutened and it's affecting me. I've also been told I have IBS but I'm not sure I buy it.

  14. Thank you all for helping me but esp I didnt know you can have withdrawl from gluten. I thought something else was wrong with me. I have the headaches and hungover feeling and also have been getting dizzy...esp after I eat. I dont know why but Ive had to make my 16yr old daughter drive me around this week because Im scared to drive while dizzy. I definately have the exhaustion...I'll be glad when that goes away. At least today I was able to stay out of bed which I normally have to stay in bed because just sitting up to watch tv exhausted me. My doc said I had bad malabsorption and it will take time for me to heal.

    Another thing and this sounds crazy I know but now after I eat I feel high as a kite. Like I took a vicodan or smoked pot. It lasts maybe 5 minutes or so and then it goes away and it only comes right after I eat. I do not do any drugs or take any rx pain meds. I dont want to get addicted to food because it gets me high! LOL

    Im going to try what yall are telling me to do but unless your from the south in the us its really hard to fathom the ignorance and stupidity even educated people have here compared to somewhere like ca. I live close to birmingham so thank god Im not far from a somewhat decent civilization but things like eating out near where I live will be impossible. There is an Outback resturant within a reasonable distance so I'll call them and check it out. I know it will take time to find the places I can go Im just overwhelmed right now. I have been so sick for so long I want to avoid any more "problems" my family is spoiled and I guess they feel they have been inconveinced enough by my illness and they are ready for me to go back to normal without anything changing in their lives. I wonder if they would treat me this way if I did have cancer? Maybe I need a new family along with my new diet.

    At least my poodle loves me no matter what I can eat. I have him as long as the vet can find out whats wrong with his stomach. I wonder if dogs can get Celiac or something like it?

    And I have you guys it seems...thanks again and again.

    I feel for you and know exactly where your comming from. I'm southern too and people do look at you like your crazy when you try to explain it to them. I have a couple of othe points as well: I found the the first three to six weeks to be the hardest. I can't tell you how many times I cried. I was releved to know my symptoms were fixable but making the change was hard. When I was so sick my mother was supportive but the moment we realized going gluten-free worked we had a family gathering and she said my diet was my problem. The family changed thier tune as soon as they saw what happened when I got glutened. After that they started changing thier tune. I understand that you don't like to bake and such but it would be easier for you if you were able to tolerate it. As far as your dairy allergy there is soy and almond milk. Experiment with them and see which ones you like. You can use those just like regular milk. Enjoy Life products are allergen free and made on dedicated lines. Also look at the online store here they have things labeled. I'd be happy to try to help you cope just pm me.

  15. The gluten all over the kichen and in the microwave is most likely what made you sick. I'm sorry. It does suck badly. If I'm not in my own home I alway cover my food to re-heat it. My family makes sure they clean up thier crumbs so I don't have to deal with it and if I'm watching the kids they eat what I eat. After getting sick from making thier dinner a few times my rule is if I can't eat it I don't cook it. My family has become very understanding especially since I've become more sensitive and a reaction puts me down and out for a coup;e of days. If you MIL kichen is dangerous to your health tell her that a gently as possiple. It is not your fault if she takes in personal. I personally don't care what others think of me if I know what I'm doing is right for me. You might have to take that stance as well. What does your spouse say about the situation?

  16. I had another endoscy yesterday because of stomache problems. I also had an abdonal ultrasound. There were some interesting findings. First I have to hand it to my doc. He's re doing the biopsy for Celiac even though the one two years ago came back inconclusive. He's theroy: Maybe I haven't gotten it all out of my diet. Other than that he found a hiatal herna, something irreagular in my esophagus, and something else. Biopsies were taken and I'm waiting for the results. In the ultrasound they found a 2.4mm polyp on my gallbladder. The doc said that we could keep an eye on it since I'm only 27 or I can talk to a general sergeon. I've decided to talk to the sergeon but I can't seem to find any info on gallbladder polyps.

    Does anyone have any ideas on the polyp on how to handel the hernia?

    The doc wanted to put me on elavil but I was but on it several years ago and ended up in the ER. My regular doc thought it was an allergic reaction the er docs said it was a bug which I didn't buy because I was fine before I took the meds.

    I want to be smart about dealing with these issues and not over react,