Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About momagn5

  • Rank
  1. Jodie, Dr. Lewey is awesome. Polite and thorough, and understanding. He speaks at our support groups (check it out if you haven't), and lives with celiac disease himself--so he knows this stuff first hand. My first encounter with him was after four of my children had been positively diagnosed! My regular doc refused to test me for celiac disease (I now have a new doc), even though there was a high chance of me having it (kids results, plus my own symptoms since I was a kid). Dr. Lewey took down all of my symptoms--epilepsy, anemia, dental--to heritage (European decent). Because my married name is not of European decent, his very first question threw me--"Are you a natural blond?" He calmly explained the reason for his questioning and I went home with a good laugh at my ignorance! Any way, the blood work came back inconclusive (I'd been light on the gluten prior because our house immediately went gluten-free when the girls' results were +, skewing my results). He followed up with scopic, again inconclusive (no sign of trouble, however being gluten-free could have allowed for some healing to occur). He then prescribed medicines for the irritation in my stomach (relief!!), and requested genetic testing which gave my final diagnosis as +, too. We also did a gluten challenge with further blood testing to see if there was a change. It took some time, but I am satisfied with all his work and support. He answered all of my questions without making me feel like everything was in my head (as is documented in my medical records since I was a kid!--I'm 40 now). Once the diagnosis was official, I recieved notice from his office informing me of an annual appointment (preset, but they are willing to work in rescheduling). My girls all had a bone density test done last year, I will most likely require that, too. So...my impression of Dr. Lewey--very thorough, very supportive, very knowledgeable, and very honest. His staff is the same way! and...Since going gluten-free 95% of my symptoms have disappeared! Wahoo! I am thankful that Dr. Lewey was able to help me figure out what has been making me ill for years...without prejudging me or making me feel like a hypochondriac!
  2. Welcome to the "No Swheats" life. (My 5 year old says this. She was diagnosed when she was 2, and she still doesn't quite get it, but she knows she can't eat what her friends eat.) There are many online places to order from, you can have it shipped to your home. Celiac Disease for Dummies (Barnes and Nobles ordered a copy for me) is a great book to have. There are also ways to modify your cooking/baking so things don't taste too differently. (Remember to put xantham gum in your baking so it holds its shape--my older girls are always forgetting that when they make Betty Crocker sugar cookies, but they turn out pretty good. Oh, avoid bean flours for sweets.) Since your little one shouldn't be eating many sweets anyway, keep this in mind: Avoid processed meats--deli meats, hot dogs, sausages. Some companies use gluten products as fillers. There are some cereals that are gluten-free, but hard to find in the regular store. French fries may also contain gluten--I'd let my kids snack on them when we were out and about--not any more. Log onto ClanThompson, they send out a monthly email letter listing many products that are gluten-free!!! Also see if your local/nearby support group has a product guide that lists things in your area that are gluten-free. We purchased two for home (his/her copies for shopping) and one for the day care. It was a very small book, but nice to have. Stick with fresh fruits, vegies, and meats. Your little one will be healthier all around that way. Easter is coming--no jelly beans (there is one brand that is safe, but I can't recall it at the moment), no licorce. York mint patty, Cadbury eggs, Peeps, Hershey's regular sized bars (not the mini's/King's), Reese's, FunDip--those are only a few of the sweets you can use to fill baskets if you don't mind your toddler having candy. You can do this. You can do anything--you are a parent!...
  3. I have to ask--did you also use one of his pans (a pan that was also used for cooking foods with gluten previously)? This could also be your culprit! Our celiac disease support group mentions this every month to those who also just joined our group. Any cooking item that has ever been in touch with gluten could possibly (not necessarily) put you at risk of cross-contamination. There are ways to get rid of the gluten in them, but when I found out we had 5 cases in our house we tossed everything (cookbooks, plastics, non-sticks, toaster, bread machine, mixer,...) and went strictly gluten-free!!! I don't recommend this for everyone--I seriously freaked and now I'm paying the credit card bill for the spaz attack. After all this, I found the support group. It was then I learned about substitutions/modifications for recipes (coulda/shoulda kept the old cookbooks with the family favs!), tricks for removing gluten from plastics and non-stick pans (something about a repeated boiling and cooling process), and a special wrapper for breads that can be used in the toaster (repeatedly even!). Just be careful. Attend a support group if you can, helps you with the tricks of the trade. Also keeps you from going in debt when you don't need to be! Oh...and yes, Tinkyada is the best!!! My hubby is not celiac disease and even he likes it best! Says you can't tell the difference between Tinkyada and "real" pasta. (He does 99% of the cooking for us and has come up with some delicious stuff!--I am so lucky, and thankful, to have him!)
  4. This is neat, I've scanned quite a few of the replies and am wondering if I could join in? I tried weight watchers for a few months--no success (and no support). I found a very supportive/neat web link that has several diets to choose from, even got a direct response from the dietician telling me which diet is best since celiac disease (plus other issues) is part of my life. I lost a few pounds off of that, then life happened...I can't support a diet that structured (finances). I can feel the need to lose the weight, but I need accountability. Sounds like you get it here--and support for the celiac disease, too! So...can I join you all????
  5. Are you in Colorado!? Welcome to the world of "I can't have swheats." My daughter just turned 5--celiac since 2. She still doesn't understand why she can't have what her friends at day care are having, exactly, but she's at the stage now that she responds with: "I can't have it cause it has swheat, Mommy?" I respond with the usual, "Yep," but add that we'd find something that she does like that is very close to what they eat. On days that the day care is having something we can't create comparably, she chooses what she wants for the day--usually Amy's mac/chz or pizza. The best foods we found are Tinyada noodles (Mrs. Leepers is ok, but we didn't have much luck cooking it at our altitude, plus it just seemed to salty or something--cook's error), Out of the Bread box fresh baked bread/goodies and crackers (Colorado Springs, also on-line); Ian's chicken nuggets, Chebe's cheesy bread/rolls; Pamela's Favorite Bread mix, cake mixes, etc. Our only stores for shopping for baked goods are Vitamin Cottage, Whole Foods, and Wild Oats. Very few other chain stores carry the baked necessities. You'd mentioned the pots/pans. We trashed ours right away--they needed replacing any way. Our support group informed us that non-stick pans absorb the gluten when heated, trapping it as the pan cools, then releases it again when reheated--even after washing. There was also mention about plastic storage containers (we purchased new ones as we were in need of a new set anyway), and separate toasters (this is to avoid cross-contamination. The first few months were heart-wrenching/frustrating. My 2 oldest--teens--literally broke down in tears in the middle of the grocery aisle as I kept reading labels and saying "nope" to every one of their favorite foods. I'm sure we looked the lot--all 3 of us in tears on the floor! I still cry when I go shopping because there are no special cartoon characters like "normal" food to make eating fun for kids! (I found Tinkyada fun shaped noodles one day and bawled!!!! My kids were laughing at me at this point.) Good luck to you...Take some time to breath as you go through this life changing experience. Ask questions...lots of questions...
  6. My 4 girls and I all had the biopsy done. The kids all did it together--assembly line! Their blood tests were all positive prior, but the older 2 were in serious denial because they didn't have any symptoms either (they claimed it was just PMS, or not enough sleep). My middle child had the worst symptoms, but had the lowest blood test. My youngest was just developing symptoms but had the highest blood tests. Since my oldest were being stubborn, and we were concerned about the damage done to our youngest, we insisted on the biopsy. We saw the pics immediately--the redness, and the "bumps". Knowing who had it worst/least per the blood tests we could compare all the pics. The biopsy looks at the level of "bending" of the tissue. It also checks for how serious the damage is. You can't really tell by the pics unless things are really bad. I have a son who was also given the blood test at about 16 months. He was negative. We are watching for symptoms, and though I sense some, my husband refuses to retest him until he is 3...and the ped GI agrees to wait. He will need to be tested every year for the rest of his life anyway. Like you, I hope your kiddo is clear of celiac disease. If things aren't so lucky, this is a really good place to check into frequently. Also find a support group right away. Things are getting better for celiac disease folk--lots of nummy foods. Plus, if your child is diagnosed at a very young age, they don't know what they are missing and won't crave the foods that aren't that healthy anyway! Good luck!
  7. Hi... My third child was 9 when she was finally diagnosed. She did the blood tests and a stool test. At the urging of the specialist, my other 3 girls were tested, too. The older two (teens) were in full denial so we agreed to a biopsy on all of them. My youngest was 2 (also now 5), had the worst blood test results so we wanted to see how "bad" things really had gotten. All 4 went in for the biopsies at the same time (a family affair).--my son was just starting solids. I have so many of the same symptoms as all of kids. I was convinced I, too, had it, but the blood tests returned "normal". I was told of a "stool sample" test that can determine celiac disease, even if the person has been on a gluten-free diet. I don't know if there is any truth in this last part, but the test runs about $125 or so (insurance does not cover this). They send you the kit, your child fills it (you have to do some of the dirty transferring work, of course), and you send it to the lab. I haven't done the stool test. I did do the biopsy (within "normal" ranges), several blood tests, and many doctor visits. I also changed my diet to gluten-free and feel better. I cheat(ed) often because I couldn't get a solid Y/N answer until last month (sigh). Check into the stool sample test. It might be what you need. Good luck!!
  8. You have a lot of options here! Wow, I might try a few, too. I am a mom of 5. I started taking my kids along shopping (gulp!) to see what they like. Sounds scary, but saves me from having to fight over breakfast because they have a fridge/drawer/basket full of foods they like and I approve. The time with the older children allows me time to "bond" with my kids, listen to their grumps/complaints about food choices (and life) and really get to know their favorites (which change like the weather!). I try to gather some foods that are breakfast-on-the-go/snack foods, too, telling the kids that they could take one with them in case they get hungry on the way to school or while waiting in line before the bell rings. My oldest 2 (now 13 & 15) still go through the "no breakfast today" routine, too. There are days, though, that they insist we make the gluten-free version of Malt-o-meal, or they microwave an egg minutes before darting out the door to school. (My middle child eats healthier than all of us. My 4th child eats foods with "No swheats, cuz I'm lergic and get dreaha.") My youngest (2) must have a certain cereal (no milk one day, flooded the next) and a certain drink (some days milk, some days water, some days juice)--I think it all depends on which side of the crib he gets up on! If he doesn't like what you have prepared for him, he shoves the bowl across the table in defiance (typical 2s, but I don't recall my girls being that way--what am I in for!?) No matter what age, kids will go from finnicky to fasting to "normal" and back again. They will eat when they are hungry enough (unless they are seriously ill). Mine always filled up at school, or afternoon (and bedtime) snacks, and the evening meal. (Now they raid the kitchen.) I wish you luck!
  9. Thanks for the referral. I added it to that area, too. I didn't realize there were so many to explore!! I have to come back more often.
  10. I am doing some "research" for a college class. The focus is on celiac disease in schools. I am hoping for some feedback that I may use as "data" for my project. Please take a moment to share your experiences in answering the 9 questions below. (Thanks, in advance, for taking the time to answer the questions!) 1. Have you had to deal with schools/teachers who do not know what celiac disease is or how to deal with it? Please include a time frame (year) and child's grade level at the time. 2. What procedures did you follow to help your child and the teacher have a successful year? (Example: Health/learning plan or 504?) 3. How supportive and knowledgeable was your child's school initially? 4. Does anyone know of any "support" documentation that is readily available to teachers/school staff in dealing with celiac disease? 5. Was your child diagnosed with a learning disability or behavior problem prior to diagnosis? 6. If your child was diagnosed with a learning or behavior problem in school, was there an improvement after going gluten-free? 7. Before diagnosis, was your child's behavior affected by treats/rewards given by the teacher (usually blamed on the amount of sugar ingested)? If so, how did your child's behavior change? 8. What changes did your school make for your child? 9. What would you like school teachers to know about celiac disease? Thanks, again, in advance to anyone who responds.
  11. Help!

    Hang in there. It will become 2nd-nature soon enough. You will quickly learn all the scientific names for the foods you can't have. You will find brand names you can trust and really like. You will create recipes of your own. Natural foods are best (and healthier, anyway). There is more to life than just salads. My husband, not a celiac, has become an excellent cook...the magic of spice. Congratulations on improving your health!
  12. I am doing some "research"--partly for myself and partly for a class I am taking. I'm hoping for some feedback. There are a few questions I have in dealing with celiac disease: 1. How many of you had to deal with schools/teachers who do not know what celiac disease is or how to deal with it? 2. What procedures did you follow to help your child and the teacher have a successful year? (health/learning plan or 504?) 3. How supportive was your child's school? 4. Does anyone know of any "support" documentation that is readily available to teachers/school staff in dealing with celiac disease? 5. Was your child diagnosed with a learning disability that decreased after being on a gluten-free diet? 6. Before diagnosis, was your child's behavior affected by treats/rewards given by the teacher? If so, how? 7. What changes did your school make for your child? 8. What would you like school teachers to know about celiac disease? Another question I have is for myself. I have 5 children, 4 diagnosed celiac disease. I just received notice that I also have it. I have not met any other families that have so many children positively identified as celiac disease (they are small families of 2-3; or only have 2-3 diagnosed). Is it "rare" for so many in one family to test positive? (My 2 1/2 yo son has yet to be tested, but I "think" I see similarities with his older siblings.--what are the odds he will test positive, too?!)
  • Create New...