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lob6796

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  1. I asked if I could do mine awake and they told me that unless there are extenuating circumstances, they won't do it with you fully conscious. It makes their job more difficult. I am deathly afraid of being put to sleep, but they don't actually put you under anesthesia, they just give you enough medicine so you don't care what they are doing to you. They did it to my daughter and she was even talking to me and could identify pictures in a book (they went in the other end-different procedure). You don't remember alot of what happened, but you aren't actually asleep. Basically it is like you are drunk and can't remember most of what you did the night before ;)

    They did say to be sure someone came in with you who could take notes, because alot of times you don't remember what the doctor says. Mine is Wednesday, I'm nervous!


  2. I'm assuming you mean you are going to the Grand Canyon? You can try "In and Out" a burger joint that has a dedicated fryer and they specialize in "protein style" burgers served wrapped in lettuce leaves. "La Tovar", "Bright Angel", and "Rod's Steakhouse"can accommodate gluten free (call ahead). There are alot of chain restaurants that do gluten free menus as well like PF Changs (which is out that way). Outback steakhouse, Bugaboo Creek also do gluten free menus but I am not sure if they have those out that way.

    Alot of foods are naturally gluten free as well, just check the ingredients list. A few fast food joints do gluten free, you can check out their menus online.

    And don't despair, there are great pastas, pizzas, and breads out there that are gluten free. Whole Foods/Wild Oats will become your best friend, since they have such a large array of gluten free foods it is overwhelming. It seems awful at first, but once you learn what to substitute with what, it isn't so daunting.


  3. I would get the checkup. If only just to tell the doctor that he is doing well on the diet, etc. The doctor may have reasoning besides looking at antibody levels for wanting to take blood. At a young age, it is easy to have malnutrition problems. He may want to check certain vitamin/mineral levels in his blood to be sure they are back up to normal again. This is important. I also think it is important to re-do antibody levels so that a) you know for sure there isn't a small amount of gluten still slipping through (at 27 months he could have minor symptoms he isn't expressing and you can't see) and B) so you have a baseine to go off of if he ends up being sick sometime in the future, they can recheck the levels and if they are gone up, they know what the issue is.

    I don't like watching my kid scream and cry and get poked, but I would rather 2 mins of discomfort than for me to have missed something because she "seemed ok".


  4. Like others have said, no the US government does not provide financial assistance for gluten free foods. The reasoning is that you do not NEED to buy special foods for the diet. Maybe you can't eat your favorite foods anymore, but there are plenty of naturally gluten free items that will provide proper nutrition and that is the US guideline. You can get an official diagnosis of Celiac disease and then claim your gluten free purchases as a tax deduction at the end of the year (a loaf of bread is $2, gluten free bread is $5, you can deduct the $3 difference) as long as combined with all of your other medical expenses you have spent over 7.5% of your adjusted gross income.


  5. Yes, I've posted about them myself before. They are very sweet people. Their daughter was diagnosed with Celiac about the same time they went to open the restaurant, so they decided over time to make their restaurant a place where gluten-free people could go and just enjoy. And when they say they have gluten-free menu, they MEAN it! It is a FULL menu. From appetizers to pizza, to italian food and burgers, dessert and drinks, they carry it all. And they don't mind sharing what other restaurants in the area carry gluten-free foods either. The owner or the chef normally comes out when they hear you are gluten-free and chats a bit, offers a bit of comforting info about how they do gluten free things, etc. Great group of people. They teach all of their staff about the importance of avoiding CC as well.

    They actually hosted a Celiac meeting recently there just to help people become more aware.

    Oh, and the chocolate truffle... to die for :)


  6. Can't help you on the Dunkin Donuts but suffer no more for lack of pasta -- get some Tinkyada pasta by mail order or at Whole Foods, Wild Oats or whatever you may have near you. It's gluten free and the taste and texture are the same. It's fooled my non-Celiac friends. http://www.tinkyada.com/

    That's the easiest itch to scratch!

    I agree! I bought some Tinkyada pasta to give it a try before going gluten-free and yum! It tastes just like regular pasta to me. I did cook it a tad longer, but the bag says you can overcook it as much as you want! It was awesome.


  7. Wow! Talk about miscommunication.

    Seems to me, given the expense and danger of the biopsy process for you, that a biopsy may not be worth the risks. Is there a reason you must go ahead with biopsy? Did you have positive blood tests? Would you consider dietary response to be proof enough?

    Michelle

    He isn't going in just for the biopsies, although he will be doing them while he is in there. My physician wants to check for any other possible problems as well since I have so many stomach issues. He wants to know what is the celiac, and what is possibly another problem.


  8. So I can eat whatever I want still. No, the biopsy didn't come back negative... it didn't come back at all! My mom and dad drive me up to Portland for the biopsy yesterday. We went early so I could go to Whole Foods beforehand and stock up on some gluten free supplies. That place is huge btw. We all actually had a pretty good time in the store, I think it was a good experience for my parents to see how many gluten free options there are out there. So we head over to the GI place. They're super nice, I check in and a little while later a nurse comes out and gets me. Takes me into a room, we go over my whole medical history in detail, then she sends me to the back where I meet my "prep and recovery" nurse. Change into the oh-so-fashionable johnny, and I wait for her to return. Now at this point my stomach is doing crazy flip flops. For one, I hadn't had anything to eat OR drink since 10pm the night before, and the other was me freaking out that they were putting me to sleep. So when the nurse comes in, I ask if I can do the procedure awake. She laughed and told me no, but she was nice about it at least. Gives me my IV and I sit and wait another 15 mins or so. My tech comes and wheels me into the operating suite. I sit and talk with him in there for seriously at least 20 mins. Then the other tech comes in at that point and gets me all hooked up to the machines, asks me what flavor numbing lollipop I want, and we are good to go. The doctor comes in, says hello to me, sits down with my chart for a second and....

    Up he goes. "you have Von Willebrand's Disease?"..."yes"... and out of the room he goes. 20 minutes later he comes back in shaking his head. He informs me that he was just on the phone with my hematologist and that I am not allowed to have the biopsies. ....EXCUSE ME???.... He proceeds to inform me that my physician never called to clear it through my hematologist and of course I can't have biopsies done - they are going to be cutting small chunks out of my intestines and (kicker) I could bleed to death. Super awesome! not. So, what he set up with my hematologist is that they are going to schedule (god I hope next week) for me to go up to her office, sit and have a transfusion of Humate P, then go over to HIS office, have the biopsy done, then go back to HER office the next day and get another transfusion. At $23,000 a pop. Joy. So then the doctor calls my physician's office and gives them hell for not keeping my best interest at hand and you know what they tell him? "We didn't know she had Von Willebrand's Disease" I was stunned when he told me that. I'm like "it is in my chart and I wear a Medic Alert bracelet for crying out loud" he goes "I know, thank god at least you wrote it on your intake form when you came in".

    So at least this new doc has a brain in his head. The other people.. who knows. So I get to do it alllllll over again. My poor mother was in the waiting room freaking out because they kept telling her I was still in the surgical suite. She's like "it is a 10 minute procedure!". By the time I got to recovery, I almost fainted from lack of drink/food. It was like 4pm. My surgery time was 2pm. At least they fed me :)

    And so continues the saga...


  9. I'm no help since I live in Nothern NH but I just wanted to say hello to a fellow NH Celiac :)

    Actually, I can help! The Seacoast Celiac Support Group is run by a great bunch of folks. They actually came up here not too long ago to give a bit of a speach and they had so much info. You can email Dan Davis at djdavis@mediaone.net or William Muzzey at munroe@nh.ultranet.com - I am sure that either of them would know of some great doctors in your area. They have a newsletter they send out with a TON of great celiac info, updates, etc. Good luck to you!


  10. I was thinking of getting the Kashi Go lean powdered mix, at least to start out so I am getting proper nutrition while I figure out what foods I can eat, plus I figure it might help me lose some weight. This is the ingredient list.

    Soy Protein Concentrate, Evaporated Cane Juice, Gum Acacia, Cocoa Treated With Alkali, Calcium Carbonate, Natural Flavor, Calcium Phosphate, Soy Lecithin, Carrageenan, Chicory Root Fiber, Magnesium Phosphate, Uva Ursi (Bearberry Extract), Ascorbic Acid (Vitamin C), Grape Seed Extract, Panax Ginseng, Niacinamide, Alpha Tocopherol Acetate, Calcium Pantothenate, Zinc Oxide, Vitamin A Palmitate, Pyridoxine Hydrochloride (Vitamin B6), Riboflavin (Vitamin B2), Thiamin Hydrochloride (Vitamin B1), Whey Caseinate, Folic Acid, Biotin, Potassium Iodide, Sodium Molybdate, Vitamin K (Phytonadione), Sodium Selenite, Vitamin D, Vitamin B12

    Diabetic Exchange: 3 Very Lean Protein & 2 Starch

    Kosher Certification: OU - D

    Any hidden gluten here? Thanks!


  11. Well, I guess I should have searched first, as it looks like withdrawal symptoms are common.

    Why are all threads pinned on this forum? As a result this one is on the last page. :unsure:

    The moderator looks at each post to be sure it is in the right forum, then pins it. When I fist came here I thought it was the same as "sticky". It isn't. Your thread is now at the top of the list because it has been reviewed and pinned. At the top of the page, there is a link to View New Posts. You can click that to view all the new posts that haven't yet been pinned.


  12. It probably took about 4-6 weeks, I would say. I think most of it was the gluten-free diet, but I can't discount the Cymbalta either. Lots of doctors are using it to treat fibromyalgia.

    Yes, I post on a fibro board and all of us there who are being actually treated for fibro are on some sort of drug like cymbalta, amitriptyline, etc. They have good sleeping and pain reducing side effects. My doc is continuing my fibro treatment until the symptoms disappear (if they disappear).


  13. From Entrolab:

    What role does genetic testing play in the diagnosis of gluten sensitivity?

    Currently, tests are available to detect the genes that control the immune system's reaction to gluten. These genes are called human leukocyte antigens or HLA. There are several types of HLA genes within each person. It is a particular type called HLA-DQ that is most useful in the assessment of the probability that a person may be gluten sensitive. The reason gene testing assesses probability rather than disease itself is because some people have the genes for gluten sensitivity but have no detectable evidence of the immune reaction to gluten or have no symptoms. In such people, gluten sensitivity is still possible but the probability (or in other words the chances or the odds) is lower than in a person who may be having symptoms attributable to gluten or that has antibodies detected. HLA testing is most useful when there is diagnostic confusion about whether or not a person is gluten sensitive. Such confusion often stems from one of the following: atypical intestinal biopsy results, the presence of associated diseases (such as microscopic colitis) that may mask the expected improvement of symptoms when gluten is withdrawn from the diet, negative tests for gluten antibodies in the midst of suggestive symptoms or signs of gluten sensitivity or celiac sprue (see the paragraph below to understand the difference), or when there are no symptoms at all and the person or the doctor can hardly believe that gluten sensitivity is really present. Other situations that HLA testing is useful is when a person is already on a gluten-free diet, and for testing family members (particularly children) for the odds that they have or will develop gluten sensitivity.

    What test should I order for diagnosis of gluten sensitivity?

    The stool test for gluten sensitivity alone can answer the question of whether or not a person is gluten sensitive. However, combining this with the test for intestinal malabsorption and the gluten sensitivity gene test provides the most complete assessment of the condition of the person and the intestine relative to their gluten sensitivity status. The gluten sensitivity stool test, the anti-tissue transglutaminase antibody, the intestinal malabsorption test, and the gluten sensitivity gene test are now offered in a reduced price panel (Gluten Sensitivity Stool and Gene Panel Complete) that results in a $77 savings off of the tests ordered individually. Furthermore, for a limited time, a milk sensitivity stool test will be offered with this panel absolutely free, making the total savings for this panel $176.

    If you have already been diagnosed as gluten sensitive or with celiac sprue, we recommend that about once a year you have the stool test for gluten sensitivity and the malabsorption test (gluten sensitivity stool panel) while staying on your gluten-free diet to be sure that you are not consuming gluten inadvertantly from hidden or unknown sources, and that your intestine has resumed its normal absorptive function. This is especially important after the first 1-2 years of diagnosis.

    If you have not been diagnosed with gluten sensitivity but you have been gluten- free for more than a few weeks, it is best to stay off gluten and be tested on a gluten-free diet


  14. How common is it to have this and celiac. Or do some people really have celiac or are labeled with fibro?

    paula

    I was diagnosed as fibromyalgia and a month later while running all of the exclusion tests for a "positive" diagnosis of fibro, the celiac panel came back positive. My doctor feels that after anywhere from a week to a year after I am gluten free, I may not have any lingering symptoms of the fibro. He says that if I *do* have fibromyalgia AND celiac, that once the celiac is under control, the fibro will not be such a detrimental thing - more of an annoyance. I am SO ready for the fatigue and pain and dizziness to go away!

    I've heard both - that people can have both disorders, and that people are misdiagnosed as fibro when in fact they have celiac.


  15. YOU GUYS ARE MAKING ME HUNGRY!!!! LOL. Awesome suggestions all. And stuff I had forgotten about too!! I had pizza hut pizza today (yum) and an onion bagel with cream cheese. And an ice cream in a cone - do they even MAKE gluten-free cones? I'm thinking not, so I'm eating as many cones between now and then as possible, lol.


  16. Wednesday is the biopsy. I plan to begin my gluten free diet right away, but my doctor told me to pace myself or I would get really overwhelmed. I also know I react to dairy and soy, and would like to eliminate them as well, but I am thinking "one thing at a time". Gluten is priority to me. So for all those that have BTDT, how did you go about being gluten free - and what would you do different if you had the chance? Thanks so much!! You guys have the best advice!


  17. My doctor told me that once I began the gluten free diet, I could expect to slowly regain my energy. In the meantime, he placed me on a low dose (25mg) of amitriptyline. It has the side effect at that dose of helping you to achieve a deep sleep state. He also put me on pain meds to take at night so that my muscle/joint pain wouldn't keep me awake, or have me tossing and turning. It has helped quite a bit. THe normal Ambien, etc did not work for me, but on nights I have a very hard time, I take an Ambien on top of the other meds, and the combination works wonders. Only problem is that I have a very hard time waking up in the morning. I hope that once I begin the diet that will become easier and I will be less dependent on the meds to sleep.


  18. I'm going to Whole Foods on Wednesday since I'm having the endoscopy in a town that has one (yay). I plan to immediately go gluten free after the endoscopy (blood test was positive already). What are some basics that I should pick up there? I want to get flours, etc because I plan to bake all of my own breads, cookies, brownies, cakes, etc. No mixes please. I also am excluding soy from my diet, and I don't like bean flours. So.. suggestions on stocking the pantry? I picked up a thing of tinky pasta last week and it was REALLY good. So that excites me. What else should I be stocking in the pantry? Thanks!


  19. I'm still very new at this, in fact I don't even have my biopsy results back. But from what I've read, sometimes doctors do the blood test after the biopsy because if it is positive, then future blood tests can help determine whether the gluten free diet is working, or if the patient is unwittingly consuming hidden sources of gluten. It's obviously much less invasive than doing another endoscopy in the future.

    She wanted to know which was more reliable and that her doctor was doing blood tests to "confirm" diagnosis. I was just telling her that blood tests are not needed to CONFIRM a diagnosis. A positive biopsy is a positive diagnosis, end of story. He *should* have done blood tests first, not second. That way once the biopsy was done, she could immediately go gluten free instead of having to wait possibly weeks after the biopsy. If blood tests are done first, you can get the results of those back while waiting for your biopsy appt since that often takes weeks to get in. Yes, in the future, blood tests can tell the doctor if your body is still reacting to gluten (if the diet is working effectively or not). She had already had the blood drawn for the blood test, so it is fine for her to go gluten free before hearing the results of the blood test. That isn't going to effect anything other than her feeling better.


  20. Greetings everyone.

    I appreciate any help you can give me on this. For the last few years I've been having some major issues with my... innards. So far, I've got at least nine of the seventeen symptoms listed here. (Diarrhea, constipation, vitamin deficiencies, fatigue, headaches, etc. are among the worst culprits.) I've been to the doctor around five times so far, and so far have had a colonoscopy and a medinical regime of Hycosamine.

    Now, as the medicine isn't really helping at all, and most symptoms flare up after an ingestion of anything with Gluten (although I haven't tried a Gluten-Free diet quite yet, so most things I ingested probably had Gluten) I've decided to take up my doctor's offer of a biopsy. I wish to go Gluten-Free early so the symptoms have a chance of being relieved a bit quicker, as I've basically been a shut-in due to how often/terrible these are, and I'm quite eager to have some relief. But therein lies the question - would going Gluten-Free around three to four weeks before the Biopsy screw up the results? I believe it's also paired with blood work sometime after, would it interfere with that either?

    Again, thanks for any help you can give me on the matter. I really appreciate it!

    Yes, you HAvE to be eating gluten when the biopsy/bloodwork is done. Otherwise your intestines begin to heal, and your immune system isn't responding to gluten, so the results can come back false negative. I know your stress of not wanting to wait a minute longer to go gluten free, but you need to stay on gluten for a bit longer.


  21. I had a positive biopsy but still waiting on the blood test results. My GI wants me to do the gluten-free diet for 3 months to see if I improve before he diagnoses me officially. I've been gluten-free for a little over a week. I haven't had muscle spasms in a few days and I have more energy. However, I'm still bloated all the time (though not as bad) and the gas and belching hasn't let up at all. Could this mean it may be something else or could those just be the last things to improve?

    Doctors frustrate me so much! They know so little about Celiac disease that they give people mixed signals and WRONG information. If your biopsy was positive, you HAVE celiac disease. There is no reason to do blood work. In fact, alot of people who have celiac disease have negative blood work for various reasons. One of which is that the IgA test (which is "the" celiac test) often comes back negative because 3% of all celiacs are IgA deficient. It also has to do with how your immune system is reacting to the gluten. You are supposed to have blood work first (since it is a less invasive test) and then move on to a biopsy. The biopsy is the last thing they do because if it comes back positive, then you are 100% for sure that you have Celiac disease. I hate to call your doctor an idiot but....

    Oh and I also wanted to add that since your ability to digest lactose is usually the first thing to go with Celiac, you should try removing dairy from your diet. I'd be willing to bet it is what is causing the residual bloating and gas. You can try adding it back in after a month or two and see if symptoms return. Sometimes once the intestines have healed some, you can regain the ability to digest lactose, although most people never do.