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researchmomma last won the day on February 14 2012

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  1. Avalon, Dr. Fasano has noted that biopsies are not entirely reliable. He is hoping to start a diagnosis procedure where to diagnose Celiac you have to have 4 out of 5 criteria: symptoms, genes, positive blood work, villous atrophy and positive result from the diet. You most likely will meet 4 of the 5 criteria. Maybe that will help your doctor. I would get gene tested. Ask him to do it through prometheus and hopefully insurance will cover it.

    The other thing to remember is that you may not have developed full Celiac. You may be on your way. To wait until you are fully damaged to get a diagnosis is sort of crazy. I think if you may want to get that gene test (with three kids Celiac there is a good chance that both you and your husband are carriers of the gene). My neighbor is in that boat. All three of her kids carry the gene and one is Celiac and almost died at 18 months from malnutrition.

    Here is the link to the article. It is a good one! Dr. Fasano

  2. I don't think you typically see the profound malabsorption that leads to wasting in NCGI though.

    This is probably true, yet my daughter is NCGI (although they refused biopsy due to negative blood work and no genes) and she is off the growth charts (less than zero percentile). They don't think she has ulcerative colitis or Crohn's. I think it is the gluten but we will see. Her hair is starting to grow in and her skin tone went from gray to pink in 6 weeks.

    Because of Dr. Fasano's work, I think NCGI will bust wide open within the next few years. I just hope it isn't the "disease du jour", like IBS was. It would be nice to have definitive testing for it. Probably a pipe dream.

    To the OP, good luck on your journey to better health.

  3. If we said we are going to send you a care package, then we will. I will inquire at the post office as to how much it costs to send packages and weight amounts. That's the key....how much it weighs. I have paid $15.00 to have tea sent form England and.......don't laugh.......I paid $40.00 to have a large shipment of cookies sent from Oz. Yeah, I'm crazy. I split the cost with a Celiac from work because he went to Oz on vacation and brought back these amazing cookies that were essentially oreos coated with chocolate ganache.

    I justify the expense because I do not dine out that much and this is my treat. I cook all my own food so if I want to pay $40.00 for shipping cookies half way around the world, I'm gonna do it! ;)

    The one thing you have to do, Strawberry, is send me your name and address via PM. Don't be nervous....you can trust forum members. I promise I'm not a wacko.

    I have a good idea now of what to send. The things you mentioned I can buy easily around here. I will buy things you cannot get in Ireland because those are the comfort foods you are hankering for. But you may want to look at Sainsbury's stuff or find a larger food store near you. That might help. I'll let you know what I find out at the post office but not to worry.....I have a pretty good idea of what it costs to ship stuff so we'll get this done.

    BTW....IrishHeart is perfectly normal...she's from Boston! :P

    Go international Flat Rate at the post office.

  4. This is a great point, that it couldn't hurt to get tested for wheat allergy. If you get a strong reaction you know that it's dangerous.

    And yes, you got the idea, thought I have a slightly different understanding of it. Your immune system works differently when there is a constant stimulus. Take away the constant gluten exposure and when you eat it, there are freshly activated T-cells. My understanding from Nora is that these freshly activated T cells can make us sicker than than the chronic immune response we were dealing with before.

    Aha! That was it. Thank you for clarifying!

  5. Okay, now I'm thoroughly freaked out. Yikes.

    I have an appt with the dr. a week from Monday. I'll talk to her about the mouth tingling, testing for wheat allergy and share your comments re: the epipen. I'm currently trying to clean out the kitchen and get all wheat containing products out or in a separate location (for my son's use).

    BTW, did anyone hear Dr. Nancy Snyderman on the Today Show today tell someone to go on a gluten free diet before testing for celiac disease? She said it couldn't do any harm. right....

    They should take her MD away! I wish someone would tell the Today Show she gave out the wrong information. Argh.

    Don't be freaked out, that is not what I intended. Just rule it out.

  6. She has Medicade, she did see a GI specialist when she was young and he was the one who wanted to wait. At the time it made sense, but looking back now im kicking myself. I have considered getting tested also. I have had several scopes done due to stomach pain and they just said its gastritis. I had my galbladder removed but i still have very freguent "attacks". Not able to eat very much without blowing up like a baloon and im have bouts of diarrhea and constipation. Very confusing. She was tested several times for diabetes, but ger A1C levels were always boarderline. We still have ro check her sugars 2times daily. I just want to get it figured out. I guess i need to find a doctor for the both of us who will listen! :-(

    It is so frustrating that a stereotype of "what is Celiac looks like" exists.

    You are going to have to really push to get tested but if I were you, I would bring in a list of symptoms from this site or another where they list constipation as being a symptom. I would then plead with your doc and say, please just test us. If her blood work was positive as a baby, it will probably be positive again. Then get her biopsied. With kids, this is the best route because schools will provide her gluten free meals IF she is diagnosed. That is why for kids, if you can get a diagnosis it is much better.

    Here is a link to the Wm K Warren Celiac Center in San Diego. They give a list of symptoms in kids: Celiac Center

    But if you can't get them to listen.....

    You may need to bag the entire thing as far as diagnosis and go gluten free. A diagnosis is not worth poor health. That is what I did. After 6 weeks gluten free my daughter is coming along nicely after years of illness. At her follow up last week, the GI was really pleased that she was feeling better and diagnosed her Non-Celiac Gluten Sensitive. I never gave her the Prilosec she prescribed and she doesn't need it. I guess what I am trying to say is that if you hit a stone wall in regard to a diagnosis and your daughter miraculously does better gluten free, the docs may say "wow, she can't eat gluten". Her blood sugars may stabilize as well (I would lay money on it).

  7. While the testing for wheat allergy can be unreliable, it certainly wouldn't hurt to get tested. You may want to talk to your doc about an epipen if you do have an allergy.

    An allergy can be deadly and with every exposure your body increases its response to the allergen.

    I think Skylark (pretty sure it was you) gave one of the best explanations about reactions our body makes when eating gluten full time, gluten-free and then re-exposure.

    When you are on a full gluten diet and gluten intolerant, your body attacks what it can (what it has time for). So it will attack your mouth, your gut, or whatever. After your body has healed and the foreign body isn't present, it can gear up and attack the small little gluten you introduce with full force.

    I think that is what you said Skylark. If I am wrong, give me a verbal spanking. I can take it! :ph34r:

  8. The referral policy depends on your insurance company, hon. Some do require them, some do not.

    Do not feel guilty! You are doing all you can to get her straightened out. You're a great Mom! In the end, you both may feel better off gluten.

    You may wish to be tested yourself.

    Yes, you should be probably tested too. If you have a PPO, you do not need a referral. HMOs typically require referral. Do you know which you have?

  9. Hi and welcome to the Boards.

    Many children do not get positive blood work even if they have full blown Celiac. Much like my 18 month old neighbor. When they did an upper GI to look for structural issues or ulcer, they biopsied him because it is hospital policy. He had Celiac and negative blood work. He was in crisis and almost died.

    If your daughter tested positive, then she should have been sent to a pediatric GI. It was bad practice to tell you to wait a few years and see what happens.

    My daughter had constipation since she was born. She also had reflux. Fast forward a few years and seizures started. She asthma and eczema and a host of other issues. I WISH I had her go gluten free back then. How much would I have avoided?

    My advice is that you need a new doctor. If you can't find one and you can swing 200 dollars, you can order the Celiac Panel yourself through www.ineedlabs.com But I highly recommend you find a pediatric GI that will test her.

    Diabetes and Celiac go hand in hand. You don't want her to develop other autoimmune disorders. You have a right to ask for tests from your doctor. That is what he/she is there for. You can also bring some articles that prove that constipation is a symptom of Celiac.

    That positive blood work is really bugging me because she should have been scoped then.

    She sounds Celiac to me. BTW, when my daughter went gluten-free her acid reflux issues went away after two weeks and her constipation is much better after 6 weeks. She had as soft normal colored BM yesterday and we did a happy dance. Her doctor had prescribed an adult dose of prilosec that we never gave her. Poof, her acid reflux is gone!

    Hope this helps! I am running off to a basketball game for my son!

    Have a good day and ask any questions that come to mind. I hope she feels better soon. When she does, you will! I did!

  10. This is adapted from my grandmother's recipe.

    Sour Cream Blueberry Cake

    Cream together 1/2 c butter and 1 c sugar. Add 3 eggs, one at a time, beating well after each addition.

    Sift together:

    2 c sifted flour (I use Bette Hagman's original blend, but any white rice/tapioca/cornstarch or similar flour should work)

    1 t baking powder

    1 t baking soda

    1/2 t salt

    1 t xanthan gum

    Add the dry ingredients to the egg-sugar-butter in several batches, alternating with 1 c of sour cream, ending with flour.

    Stir in 1 t vanilla extract. Fold in blueberries, about 1-1/2 cups fresh or canned. If fresh, toss them with a little flour first, to prevent them sinking to the bottom.

    Spoon into cupcake papers. Bake at 400 for 15 - 20 minutes or until toothpick comes out clean. You could also put this in a 9 x 9 pan and bake for about 55 min. Either way, cool it and freeze cupcakes or pieces of cake.

    There isn't sour cream in it?

  11. I am new to this site. I found it while searching for info on whether or not to be tested for celiac. After years of agony I tried going gluten free. I figured it would at least do no harm. But I quickly discovered I was a different person without gluten. I felt great for the first time in many years. I was gluten free for two months, then decided to go ahead and be tested for celiac for my family. I have two children and my sisters and my mom seem to have some symptoms. So here I am, on day two of eating gluten again. I feel awful! I am supposed to be doing accounting homework but I cannot possibly comprehend the words for the fog. I'm in pain and stressed out. I didn't really have a question or anything helpful to add but thought it would be nice to know I'm not alone in this, that there are other people who are like me and survived having to eat the poison again...

    Hi you aren't alone. Many people who try to do a "gluten challenge" feel horrible. Many do not make it and just opt to skip getting an official diagnosis. My daughter went back on gluten after only two weeks and the change in her personality and health was absolutely astonishing. She felt horrible. Back gluten-free she is a totally different kid.

    You have to do what is right for you. My daughter still sometimes regrets not having that biopsy to rule it out but it doesn't matter because she clearly cannot tolerate gluten.

    Hang in there.

  12. I am sorry no one responded to your original post.

    I am on here frequently but I usually let the experts reply to posts like yours.

    My daughter's Celiac testing was negative. However, because of her symptoms and how closely related they were to Celiac, we decided to eliminate gluten and it has been amazing. She is probably Non-Celiac Gluten Intolerant but time will tell. I wanted answers that I couldn't get from my doctor so I used Enterolab.com

    This testing isn't for everyone because the "gluten sensitivity" tests that they run are not peer reviewed (approved by the medical community at large). That's ok for me because I was really interested in the fecal fat and what her genes were.

    Turns out she had high fecal fat and she is a DQ 5,5 which can be associated with neurological issues associated with gluten and gluten sensitivity in general.

    My daughter got glutened and all her old symptoms came back so I don't care if they call her Celiac, Non-Celiac Gluten Intolerant or The Freakin' Queen of Sheba: She can't tolerate gluten.

    I would give the diet a try. You have nothing to lose and your health to gain.

  13. Welcome to the Board.

    Do you have a Trader Joes' nearby? All their gluten-free stuff has a g+ on it. Fabulous. They even have some frozen lunch entrees that are gluten-free. Also their gluten-free pasta spirals are good too and CHEAP.

    My daughter loves all of Darn210s suggestions except she prefers the Snyder's Gluten Free Pretzels. Her friends love them too (gluten eaters). Udi's pizza crust is so good that now my gluten eating son wants it.

    Oh and I was surprised but she loves the Glutinos crackers. I think they are pretty good too. She recently got sick and wanted chicken soup and crackers. Whew, glad she liked them.

    I always have Better Than Bouillon on hand. I sometimes make her quick chicken soup with that broth, cut up chicken and pasta spirals.

    I also just made my first gluten-free bread at home. It was so easy and super good. I was a bit surprised (it was GOOD not gluten-free good!)

    This is a great group of folks! Congrats on your road to health!