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bincongo

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  1.   On 10/27/2010 at 10:56 PM, DownWithGluten said:

    I've been fairly frustrated the past few days. Trying to eat healthier...less calories, less salt, blah blah. But of course, with that comes less flavor. So I'm trying to find stuff that is quick to make (to eat while at work for lunch), healthy, flavorful.

    In my quest I hit many roadblocks thanks to stupid gluten-ness. I researched the Net as much as I could on each but alas.

    First, McCormick spices. Their single spices are gluten-free, I know. But the mixed ones ares ones I'm after, particularly for flavoring so I won't be tempted to douse everything with salt! The Perfect Pinch flavors looked good, like Lemon Pepper, Garlic & Herb etc. However, of course, is it gluten free?? The site's FAQs say that the mixed ones MIGHT have gluten in it. And they say "IF the source of gluten is WHEAT, we will list it." Well to me that is cryptic and vague. Do they mean, IF and only IF it is WHEAt, they'll list it. But if it's from something else (barley, rye)...what, they won't list it?? The one I picked up does not say WHEAT but I'm scared to try it. HAs anyone used any of the Perfect Pinches and not gotten sick?

    ------------------------------------------------

    Celiaccess says the Lemon Pepper is questionable, can't be confirmed gluten free. I might check them for the other mixes.

  2. After waiting 5 years and my daughter thinking she could never get pregnant, I have to say we are very happy for her. She and her husband adopted a little baby boy last year because they thought they would never have children.

    If gluten attacks the placenta, can this be a complication?

    Right now we don't know what we are going to do. She has a doctors appointment this week I believe and she may be able to get something ordered but if it costs 3-4 hundred dollars then we don't know what we will do. I would assume that the antibody testing cost less than gene testing.

  3. I need an answer this week because my daughter is going to the doctor to have blood tests done at my insistance. I am Celiac and my sister has the gene and is probably Celiac. I am getting conflicting information about what to do. My daughter is not gluten free and she doesn't think she has any symptoms. She has always been underweight and had infertility problems. It took her 5 years to get pregnant and she is 8 months pregnant now.

    Some say gene testing doesn't always show all the genes so why test but then if she gets the antibody testing done and she turns up negative it just means she doesn't have it now. So does she go in every year to have antibody testing done? Or does she wait for symptoms. I had few symptoms and not everyone does.

    I don't know where to go with this. I also want to know if insurance pays for any of this and if so what are the codes for ordering tests.

  4.   On 10/26/2010 at 8:30 PM, adab8ca said:

    She should contact her insurance company. In Canada, I know it is not covered and even the regular Celiac blood tests are not covered by insurance (although the biopsy is).

    Has she had other testing done that is inconclusive? The gene test will not tell you if you have Celiac, just that you have the genes to get it. I think lots of people have the genetic markers and only a small fraction ever get the disease.

    She has not had any testing done. My sister has the gene and symptoms for Celiac so she is getting more testing done. I want my daughter to have gene testing done because I am a known Celiac. I think she needs to know if she has the gene first since she doesn't have symptoms that I know of. If insurance companies will only pay for the antibody testing then I need to know that. It seems backward though because if she is negative than it only means she doesn't have it now. I would think the gene testing is more worthwhile.

  5. My daughter has decided to go for gene testing and I gave her the information for using Mayo Clinic labs but I am wondering if her insurance will pay for it. Does she need to contact her insurance company in order to have part of it payed for and to see which lab they use? I don't know what insurance company she has. When the doctor orders it is there a certain code he should use based on the fact that I, her mother has Celiac?

  6.   On 10/25/2010 at 9:22 PM, mbrookes said:

    Waffle House has been great for me. Explain what you need. They don't mind taking special precautions up to and including letting me read the package that the hash browns come in. Just be clear about what you need.

    Waffle House! What in the world do you order there? I would like to go back to them but they cook everything on the same grill. I would just be curious what you order and if they all have the same hash browns or you have to ask to see the package each time.

  7. Ok here's the thing. I don't have many symptoms at all so for me to be able to tell if I had an accidental gluten exposure is very hard to tell. I can't go by that, so my question to add to this discussion is that can we really base this on symptoms. If the intestines are being damaged on what the symptoms level is than we all have to avoid being exposed to any gluten. That becomes an issue of where we need to go to be active in getting gluten labeling standards.

  8.   On 10/25/2010 at 5:48 AM, T.H. said:

    1. Sex: Female

    2. Age: 38

    3. How long ago were you diagnosed with celiac disease? 1 year. We think it triggered in my mid-teens, as that's when I started becoming ill.

    4. Does anyone in your family have celiac disease? Yes. Father, brother, and both children. Father diagnosed 8 years ago. Everyone else diagnosed within a few weeks of myself.

    5. How severe is your celiac disease? Very. I react consistently to gluten-free foods that are certified as 5ppm or less so I cannot eat most store bought gluten-free foods. My father and brother can eat most gluten-free foods sold in stores. My daughter and son seem to be somewhere in between, less sensitive than myself, but more sensitive than my father.

    6. Is it difficult to eat out at restaurants or anywhere outside of your home? Yes. I have not managed to eat out successfully, even with food that was cooked by the restaurant's manager, with no seasonings, in a clean pan. I was still very ill. I must make all my food and bring it with me, wherever I go. Most of my ingredients have to be special ordered from companies that only make one food, so that the product is not contaminated.

    7. Do you believe that there should be more to be done to make this disease more aware to the public? A little, but I'd like it more aware to the doctors more. My father was diagnosed on accident. I was diagnosed because I requested the test. My children and my brother were diagnosed because we requested the test. None of us were helped by doctors, because when they went to medical school, the symptoms and prevalence of the disease were very different than what information is known about the disease today. Talking with cousins, about half of them have symptoms as well and not one has even been tested. We're all falling through the cracks.

    8. How has this disease impacted your life?

    - Depression since I was 16 years old

    - permanent damage to my spine and nerve problems in both arms

    - soft tissue injuries that made using my hands, my arms, my legs, and my feet difficult if not impossible at various times in my life. I never had a body that was fully healthy.

    - I contracted a serious form of a disease because I was immuno-compromised and while it has finally gone dormant, it will never go away and can trigger again at any time. This would have merely been a cough for a month or so if I had been off of gluten.

    Now that I've been diagnosed, however...

    - I am able to feel happy, and STAY happy, for the first time since I was in highschool.

    - I have to economize constantly because my food budget is double, and that's if I make everything from scratch.

    - I spend about 1/3 of my day cooking, because I react to so little gluten that we can't find pre-made foods that are safe. Sauces, extracts, condiments - we have to make it all, so at times, a food that would have taken me half an hour to make can now take a day or two of cooking to get all the ingredients set up for it.

    - I find dealing with doctors and pharmacists an exercise in frustration. The ER doctors will often not check if the medications they just gave you, or prescribed, are gluten-free. The pharmacists don't have lists of gluten free medication, and they have to call the company that made the medication to find out. Woe to you if the company is already closed for the day. When I needed stronger medication after a surgery, I had to wait three days to get a gluten-free medication because no one knew if their medicines were gluten-free and we finally had to order new medication that we knew were safe. Not fun.

    - I have energy now. I eat healthier now because I'm so much more aware of my food. I can move and dance without pain. No more nerve pain, no more soft tissue injuries, no more pain from my spine (even though that hasn't healed)

    - We've had to learn how to enjoy social experiences without being a part of the food experience. It's doable, a little isolating, but much more difficult for the children to not feel left out.

    9. What do you think would make celiac disease easier to deal with?

    - a better understanding by non-GI doctors that eating gluten hurts us, badly. Just because we don't have anaphylaxis after eating gluten does not mean that it is therefore all right to discount precautions.

    - labels that tell us how much gluten a gluten free food has, not just that it's gluten free. Right now in the US, a food with 5 ppm of gluten and a food with 200 ppm can both call themselves gluten-free, and a consumer has no way to tell which one has more without a lot of research.

    - Drug companies should be required to disclose their gluten and gluten derived ingredients. Currently, they are not. The same applies for any of their ingredients that aren't 'active,' which seems extremely unsafe for any consumer with an allergy or intolerance.

    - We should be able to do away with what I think of as weasel-like labeling terms. 'No added gluten' and 'naturally gluten free,' for example, which do not in any way mean that something is gluten free. It's simply a case of cashing in on a fad, and harming people who have medical reasons for being on the diet.

    oookay, and now I'll shut up, LOL

  9.   On 10/24/2010 at 7:52 PM, Kayhere512 said:

    I'm trying to raise awareness for celiacs disease, and it would help me out a ton if people with celiacs disease can answer these few questions. Thanks

    1. Sex: Male or Female

    2. Age:

    3. How long ago were you diagnosed with celiac disease?

    4. Does anyone in your family have celiac disease?

    5. How severe is your celiac disease?

    6. Is it difficult to eat out at restaurants or anywhere outside of your home?

    7. Do you believe that there should be more to be done to make this disease more aware to the public?

    8. How has this disease impacted your life?

    9. What do you think would make celiac disease easier to deal with?

    [/quote

    1. Female

    2. 62

    3. 3 months ago

    4. My sister has the gene and will probably find out if she has Celiac soon.

    5. My symptoms were not severe but the damage to my intestines was severe when they found out by endoscopy.

    6. I don't eat out a lot anymore and I bring my food for myself sometimes. I have to plan everything like where I am going to eat and what I will eat. No more fast food. Every meal is planned ahead. More restaurants are trying to offer gluten free but they don't understand cross-contamination so sometimes it isn't even worth the trouble of going out.

    7. First make doctors more knowledgeable about it. Have restaurants not even offer gluten free if they don't know how to prepare it.

    8. Sometimes I feel almost paranoid about gluten and few people understand that. Life is not as spontaneous anymore. I can't just go shopping and not have to think about what I will do for lunch if I am out most of the day.

    8. It would be easier for gluten free food to not be so expensive. It would be easier if my family and friends actually believed me when I tell them something about living the Celiac lifestyle. It would be easier if doctors knew what tests to order to diagnosis a Celiac and follow a Celiac for health problems.

  10.   On 10/21/2010 at 5:31 PM, tarnalberry said:

    If she is eating gluten, then she can have the regular antibody bloodwork done now. She can have the gene test done regardless, but many people carry the gene without it being activated (celiac disease requires both the gene and a trigger to activate it) so it won't really tell her if she has it or not. (To top it off, the US, especially, only tests for two genes, and none of the others known to be linked to celiac. So, she could test negative, but still actually have a gene that would give her the possibility of having it. This is why I think genetic testing for celiac is worthless.)

    If she's gluten free, she should stay that way - ideally until she is done breastfeeding - and then decide if she wants to eat enough gluten for long enough to damage her intestines to find antibodies on a blood test.

    If she strongly suspects she might have celiac disease, I would encourage her to go gluten free for the pregnancy and breastfeeding and decide what she wants to do from there. But that's just my opinion of the tradeoff of the risks of eating gluten if celiac while being pregnant.

    She doesn't think she has Celiac but I am not convinced that is true because of her long history of "stomach issues" and her infertility. I just want her to have the gene testing done and then maybe the autoimmune tests. She is not gluten free. I was just wondering if pregnancy in any way would affect the results of any autoimmune response that might show up in blood work. She might be hesitant because she isn't sure how much it will cost.

  11. I am a new Celiac and now my sister has found out she has the gene. My daughter is 8 months pregnant and it took her 5 years to get pregnant. I want her to have gene testing and Celiac testing. Is there any reason this should wait until after she gives birth. I know the gene testing wouldn't be affected but what about affecting the results of the Celiac testing.

  12. I am not sure what to tell my sister. I am a new Celiac so she agreed to have the gene testing done and turned up positive for the gene. She already has two autoimmune diseases, one of them being Hashimotos. Now she says she doesn't want to take any blood tests to determine if she is Celiac, she just wants to go light on the gluten. I have told her with Celiac you can't just go half way. She may have a few Celiac symptoms but nothing that really bothers her. I had few symptoms also. If she feels better not taking in as much gluten does that even do any good as far as healing the intestines. She says with her other autoimmune disease (Sjogren's) she has a chance of cancer anyway so what difference does it make. I am just not sure what to say next.

  13.   On 10/18/2010 at 3:52 PM, SaraKat said:

    This was not my case at all- my blood test was at 4PM on a Tuesday and they called me Thursday morning with the results. Also, the endoscopy was at 7am and right after it the Dr showed me the pictures of the "scalloped intestine". Sure, we had to wait a couple weeks for the path report, but he saw damage right away.

    The non confirmed diagnosis is probably OK for people that are super sick and just want to stop eating gluten (but I would still want a confirmed Dx anyway), but someone like me with mild pain that I was dealing with for 9 months needed the final diagnosis.

    If my sister has symptoms they are mild just as mine were. If I were told to go gluten free just to feel better I doubt I would take it as serious but with a diagnosis it just seems more real. I didn't have enough symptoms to even go to the doctor so I was diagnosed by accident, going in to have an endoscopy for another reason.

  14. Juliebove - I am not sure who you were responding to but my daughter lives 9 hours away so I have no choice but to use her kitchen and I will be staying with her for 2 weeks.

    I do have a recipe for Apple Crisp that is very good. I have used it for years but last week I made it with gluten free flour and I loved it and so did my guests.

    4 cups sliced pared tart apples

    1/4 cup orange juice

    1 cup sugar ( use some brown sugar to add flavor)

    3/4 cups (gluten free) flour( I used Red Mill all purpose)

    1/2 teaspoon ground cinnamon

    1/4 teaspoon ground nutmeg

    Dash salt

    1/2 cup butter

    Put apples in a 9 inch pie plate and sprinkle with orange juice

    Combine sugar, flour, spices and salt; cut in butter till mixture is crumbly.

    Sprinkle over apples. Bake at 375 for 45 minutes or till apples are tender and

    topping is crisp.

  15. I am new too. The last time I visited my kids and grandkids I offered to plan the meals and cook them. I seemed to work fairly well but I was new at this. My daughters kitchen is especially messy. I think I got CC from her kitchen. This year my daughter's baby is due on Thanksgiving day, she lives a 9 hour drive away so I will be staying with her and cooking Thanksgiving if she is not in the hospital. I guess I will bring pans and cutting boards, etc in my car. I also clean her kitchen when I get there but there is still a lot of CC. She also has a son who is 18 months old and eats gluten foods all day. Am I stressed out - yes I have to admit I am but I am going to be with my daughter because she asked me to and I want to.

    By the way - does anyone know a gluten free stuffing recipe? Maybe with gluten free cornbread and not expensive gluten free bread.

  16. I find all the comments interesting. I really wish they would do more endoscopy's to confirm a diagnosis. My endoscopy showed my villi were completely absent and the pictures weren't pretty. If more people had in hand proof of the diagnosis maybe they would think more seriously about it. My sister was just confirmed she has the gene for Celiac and her doctor told her to just go gluten free and not worry about the testing since the blood tests aren't real accurate. She is talking about going gluten light but not gluten free. I think it is a mistake for doctors not to go for a diagnosis.

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