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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About rgeelan

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  1. Hmmmmm.... That is interesting... For about 2 years now I have had chroinc sinus infections. I have been on mega antibiotics and nothing every helps I have just had to live with it! I never thought sinus problems could b a sign of celiac though... I wonder if this will improve when I am on the diet for a while?
  2. Ursula... They didn't have damage to their intestines, but they did have lukeocytes in their intestines which the GI said is a sign of intollerance and could be the first sign of celiac for them... However we have put them on the gluten-free diet in the past but it hasn't changed their symptoms which is why the GI said to wait till their next scope. Part of their problems improved when we figured out the lactose/dairy issues. But I am honestly suspecting that the lactose and dairy problems could just be early symptoms of celiac... I saw my Dr this morning and went over all of it with her and she seriously thinks I need to go gluten-free from this point on. The part of my thyroid that was low is now normal however my total thyroid is shutting down so she said upping the medicine would be bad and probably not help with how I am feeling anyway! She wants to see me back in a month and is hopefull that after a full month of being gluten-free that more than just my energy level will have improved! Last night I cheated since I already felt sick and we went to Olive Garden... I ate all my pasta and have felt horrible ever since then. I am totally nausiated and keep getting stomach cramps and my energy is plumited today! So again this morning I started back on the gluten-free diet in desperate hope that I will start to feel better again in a few days. I talked to my insurance about the Entrolab tests and was told that they would not be covered and I probaly wouldn't even get a partial reimbursement for them... I still am strongly considering doing them, but have to find the money for them which is kind of non existant right now... I am considering asking my mom if I can borrow the money from her, but I don't want to put her in a bad place financially either... I just think it would be good to have some testing done also. My husband said we should probably have all of us tested, but that's 5 people at $369 each and we really can't afford that. lol! Thank you for all your advice and concern. I think our house is going gluten-free from this point on....
  3. I have a lot of gluten-free 'snack' foods for my kids but just am being stubborn about giving up MY foods. lol! I think unfortunatly it is going to come down to our entire house being gluten-free eventually. My girls GI wants me to wait till after their next biopsy to put them gluten-free. Their first biopsy showed some possibility of food intollerance though so she said it could be an early sign of celiac for them... My DH may not be happy if I stop buying any gluten foods but I think he will survive and it will be easier for us to stay gluten-free. I know I had to pack all the gluten snack foods in a plastic tote and put it in the garage just to remove the temptation for me. lol! It did make it easier without them around though. I was looking at the Enterolab site... I will have to ask my Dr if she knows anything about them and if our insurance would reimburse for it. It might be worth doing it on all of us if they would but we just don't have that kind of money if it all had to come out of pocket...
  4. Thanks Angie... We normally try to be very careful and even the girls that work at the bowling alley are helpful and careful when preparing our food. I have read all the packaging and they let me know if any of their products change or anything like that. They get the hotdogs strait from the back and wrap them in a paper towel and microwave them, so they have never been near the hotdog thing with the bun tray in it... They always make us fresh fries without any other food fried with them also. But the fries are still in a common oil so I wonder if they could pick something up. That has been the only iffy thing that I could think of but he never mentioned that they made him feel sick *till I asked directly!* so I thought they were ok... Now I am thinking I may have found the reason to his last totally random and unexplainable attack... No more fries for us... I did eat fairly gluten free before going on the diet because I cook our main meals gluten-free, but I still would have some sort of gluten food daily till this diet. I wonder if that could have been just enough to keep my blood from testing positive though? I have had to give up my snack foods and treats and it has been a little hard to change my eating after 28 years, but I was feeling so good till today that it kept motivating me to keep up the diet! Today I am feeling horrible and I don't have the energy or desire to cook. I'm almost tempted to just eat a ton of gluten at dinner time and see if it really makes me sick. Not that I want to feel any worse, but I just want to make sure it isn't all a coincidence, you know??? I hate the thought of having to give it all up, but at the same time if there is a chance I have celiac I don't want to risk the damage it can cause just to be able to grab a quick easy snack when I want one... Unfortunatly I think without a positive medical diagnosis our dr and insurance won't consider it a posibility... I know it was a PITA getting it 'official' for my DS even though his first blood test was highly positive and the Dr really had no doubt, he had to have the biopsy and a repeat blood test for insurance and his medical file...
  5. That list looks almost exactly like my symptoms and I am so sick of feeling this way! I know there are many possible reasons for these symptoms but it never hurts to rule out Celiac as one of them... I am unsure what the celiac panel being low means. With my son's diagnosis his levels were high... Have you considered asking to have a biopsy done? Good luck...
  6. Ok for almost a year now my health has been going down hill. I have been getting more and more tired and forgetfull and my stomach is often upset. I had a Hystorectomy in August and since then have gotten severly worse. They thought I was anemic at first, but they tested and I was fine, they suspected my Thyroid was too low by the tests though so they put me on medication which hasn't really taken away the majority of my symptoms. Anyway long story short... My son has Celiac and was diagnosed 2 1/2 years ago. We know either myself or my husband is a carrier and could develope it but I have been tested in the past *by blood* and was negative. With feeling so bad and not getting answers from my dr's I started looking into it and was reading that it could cause all the symptoms I am having even the Thyroid problems. So a week ago I got sick of getting the run around from my Dr's and put myself on a Gluten Free diet to try it out. Within 24 hours I had tons of energy that I didn't normally have! As the days have gone on my energy has increased. I am still tired as I am not sleeping well at night, but I have lots of energy and am getting things done around the house now... I am still forgetful, but my stomach problems started to improve after a few days... I don't really know if this is coincidence or the diet though, but I figured I would keep it up another week or so then challenge and see what happened. Then yesterday we went to Bowling and ate at the bowling alley! My son has been eating there for a year and never actually complained that it caused him any problems so I just ordered what I always get him. By the middle of the 2nd game I was feeling sick and nausiated. All today my stomach has been very upset and I have felt nausiated. I don't have the energy level today and am just irritable and feeling horrible! I am wondering if I could have been glutened by cross contamination at the bowling ally and that is what caused me to feel this bad? I am not sure if I would have a reaction like this after only 1 week on the gluten-free diet though. I did ask my son if his stomach ever hurts after eating there and he said yes, and I asked if he noticed that any food caused it and he said the french fries and sometimes the chips *nachos*. Well the fries are fried in a common oil so there is a chance of cross contamination but since he had never mentioned this on his own I never thought it was a problem. Now I am thinking it might be!!! Am I totally parinoid or could I be onto something here? I have an appointment with my Dr tomorrow morning and was thinking of bringing this up and asking about being retested for Celiac because of these symptoms and how after 1 week on a gluten-free diet I started feeling better... But I don't want to come across as totally crazy. I'm just sick of being sick and desperatly want an answer! Any advice would be greatly appreciated. Thank you! Rebecca
  7. Ok that is a point I had not thought about till just now. I think keeping her gluten-free is just the best idea anyway. Really I see the difference when we take it out of her diet so I know it has some sort of effect... My DH refuses to believe me though! Thanks. See I figured age may still have a play in the testing but knowing that they did the wrong test makes me a little mad. I had to put her back on Gluten for them to do the wrong test! I really think for now at least I will not retest her. I see the change and that is enough for me... Kind of along the same lines as why I will not be introducing gluten foods to our baby either. She seemed bothered by it when I would eat too many gluten foods so why even take the chance... She has a severe dairy allergy though so we are being really cautious and going through an allergist to start her on solids for fear of any major reactions.
  8. kaiti she was tested at 25 mo, so over 2 yes but not by much. lol
  9. She is 2 years 2 months... Ugh that much gluten would be hard because she does not like bread and wont even eat regular cereal! That would mean lots of cookies and crackers. lol... And 3 months before testing would put us in the middle of moving which would mean another month or more after we get to our next base to get the Ped there to realize they need to order the test! Just not going to be 'easy' any way I look at it...
  10. See I would like to have some sort of official diagnosis largly so we know if she can occasionally cheat (if it is just an intollerance) or if she has to be as strict as my DS. She does not have the severe immediate reaction he has, but then again he didn't have it when he was her age either! Now he can lick a cookie and will throw up, she has to eat gluten foods for a few days before the diarhea comes back. I think this might just be because if she does have Celiac it hasn't progressed as far yet with her being younger. But it would be nice to know if she can have a piece of cake at a birthday party when she is older and that she won't have any major damage, or if she needs me to send a cupcake like I do for William. It would also help keep my DH and our familes from feeding her gluten containing foods just because 'she doesn't have an official diagnosis'... My DH thinks that since she came back neg to everything that she can eat whatever she wants. Of course he isn't the one constantly changing the diarrhea diapers and spending all day with her moaning and crying that her tummy aches either! I just don't know if it is worth the pain to have her with diarrhea and constantly complaining that her tummy hurts so we can go through a needle poke and blood drain again. But they did RAST tests at the same time to rule out possible food allergies and those all came back neg also! She has an obvious reaction to something she is eating though I just have to figure out what it is! I'm pretty sure on the gluten though because if I take it out of her diet the diarrhea goes away, put it back and it comes back! She has mucus in her stool even on a gluten-free diet though which makes me think there is more in play.
  11. Ok when my son was diagnosed with celiac disease a year ago it was the TTG IgA that came back pos at 40 (a very strong pos) The IgG were neg though. The specialist we saw for the biopsy said with just the blood tests alone he was 99% positive William had Celiac because the one he was pos to was the most accurate for it. Well we had our DD tested at the start of this month because she has similar symptoms and the doctors only ran the IgG! This came back neg but I am wondering if this is the same situation as my DS where the IgA may have shown a pos if they had ran it. Is it worth the pain for my DD to put her back on Gluten and have her blood drawn again for the IgA test to see if it is pos? She does improve on a gluten-free diet this makes me really suspect that she is following in our DS's footsteps...
  12. With my older 2, once I got them completely gluten-free they had no problem learning to potty train. William was fully potty trained day and night shortly after diagnosed with celiac disease at 3 yr 3 mo. He was mostly potty trained except for the diarrhea we couldn't figure out (DUH) way before he was 3 though! Emma is 2 years and is potty training right now. She has - blood results but reacts + to a gluten-free diet... Once the gluten was out she started wanting to potty train cause she knew in advance and could control it better...
  13. Seriously I would look at her growth chart and see if she is on the same curve as always or if she has dropped. It wasn't until my son stopped growing and lost weigh that his doctors took me seriously about him being sick and finally ran tests. He was always 90% or above in height and weight and had dropped to 90% in height but 75% in weight just after age 3. My daughter on the other hand has never seen much over 50% in height or over 25% in weight! She has had some major dips though and we are now suspecting she may be Celiac as well and her Dairy issues probably were never outgrown... We are going to have her tested 9/1 to confirm our suspicions. Yes parental height can have something to do with a childs height but it isn't always after the parents. I am 5'9" and my DH is 6'6" We figure that is why William has always been so tall and expect he will be about the same height as DH as an adult. Emma on the other hand is very petite and we figure she takes after out grandparents who are all no taller than 5'5" (with the exception of my maternal grandfather who was 6'2"). Genetics can go back 6 generations... Good luck!
  14. generally the tests are inconclusive before age 2 and could easily give a false -. i would have her retested. we also had our daughter tested at 15 months and it was -, but by 21 months she was really showing the signs our son had started with and i recently challenged her and got + results from removing gluten (and dairy but that is a seperate issue), so we contacted her doctor and reintroduced gluten and in another 1.5 weeks we are having her retested and i expect they will probably show + now... It's unfortunate to say I think she has it also, but the symptoms are just like William's at this age and I would rather know now before she get's as sick as he did....
  15. Our son is 4 now and he has learned the hard way that he does not want to cheat on his diet!! He proudly announces to anyone who offers him food that he can't have wheat! He learned the hard way what cheating does to him and at a bad time. The night my water broke with Sarah (I was 33 weeks) we had the neighbors watch the kids for us while my DH and I went to the hospital. Well they gave Emma a cookie to calm her when daddy and mommy left and Emma had left 1/2 the cookie in Williams room and at some point he found it and ate it! Don't know why, he just did! Within a few hours he was throwing up and mommy and daddy were both at the hospital so he only had our neighbor to comfort him... Ask him now if he wants something with gluten in it and he will tell you no because it makes him sick and he doesn't like to be sick!