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sandejosgirl

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About sandejosgirl

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    Brownsville, OR
  1. Happy birthday and may God bless you today!

  2. I wanted to add my two cents as a mom who wasn't going to biopsy. I have 3 kiddos, my oldest turns 5 in May and all have GI issues. We were just thinking celiacs until some funny bloodwork turned up the possibilty of IBD, which is a disease that can happen in conjunction with celiacs. After considering the possibility of having to have my kiddos scoped both ends, suddenly the endoscopy didn't seem so bad. I also spoke to a couple of moms who had the endo done and said that they were scared too, but the hardest part was the IV!! We just saw the Ped GI for my baby (13mo) who confirmed her symptoms are celiacs with no outlying symptoms that might indicate other issues. We will not be scoping her. My oldest daughter and my son's apts are at the end of the month but we talked briefly with the Ped GI at my babe's apt about them. My babe's symptoms are all classics=no reason to scope. My oldest is still having blood in her stool gluten-free for 3 weeks=could be celiacs, could be celiacs +??? IBD? My son's symptoms are still improving gluten-free=wait and see. I really liked the Ped GI, down to earth, knowledgable, and wasn't scope-happy! I.e. he didn't want to scope the baby w/o further complications cause of her age and the clarity of her symptoms. But said if there was a question about the diagnosis, he would want to scope an older child. So now?? I think that we will be scoping our oldest to make sure that she isn't having IBD or other stomach/GI issues on top of gluten sensitivity/celiacs. Wishing you all the best, Stephanie mom of 3 gluten-free kiddos
  3. We were just at the Ped. Gastroenterologist on Wednesday at a prominent Children's Hospital for my daughter's "issues". She is 13 months old and still breastfeeding. No growth or new teeth since 7 months old, sleep has started to go downhill (she was sleeping in 3-4 hour chunks at night, started waking every 40 min to 1.5 hours) and has major food intolerances since 1 month. These food allergies (10 different foods) were confirmed by a registered allergist and are cell-mediated allergies (delayed reaction); all food contact only through my breastmilk. Through these allergies we had eliminated wheat, rye, spelt and barley, but were still consuming kamut and had not eliminated the trace amounts from x-contamination or gum, spices, etc. After 3 weeks of both of us being completely gluten-free Joy has grown 1", 1 shoe size and has 1 tooth cutting through with 3 more on their way. Our Ped. GI Doc sayed gluten most definitely crosses through breatmilk. Hope that helps, Stephanie wheat, rye free 11/07, gluten-free 1/09 mother of 3 gluten-free kiddos, ages: 4.5, 3, and 1
  4. Crohn's FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The Ped GI thinks we had a false pos cause only 2 out of 7 markers were present w/o weight loss or diarrhea. AND these past 4 weeks we (Joy and I as we are still breastfeeding) have been gluten-free = 1 shoe size 1 inch in height 1 new tooth coming through Ped GI says our new growth w/past severe food issues confirms our Celiacs. I'm so grateful!! One kiddo ruled out of Crohn's, two more to go. Faith & Caleb's apt.s are at the end of the month. Faith had blood in her stool today, so, we are not out of the running yet. But I have hope. Stephanie wheat, rye free 11/07; gluten-free 1/09 mother of Faith (4.5), Caleb (3), Joy (1): 3 gluten-free kiddos
  5. Well, we are waiting, waiting......waiting of our Peds GI apts. Joy (the baby) gets in next Wed for our initial 40 min apt. In the mean time? I freaked out and asked our Pediatrician to run Crohn's labs on my oldest two (4.5 & 3) cause frankly they have way more symptoms of "something" than my baby. Did you guess it???? Yep, they came back Pos+++ too!! Welcome to my nightmare. This disease is horrible enough for adults, but for kiddos? They stuff I've read...we are waiting for them to schedule my two other kiddos. I'm hoping that we go in and they laugh and tell me that it is impossible for all 3 of my kiddos to have celiacs and Crohn's. For now I'm trying to pray and have peace, cause my heartburn, sleeplessness and anxiety isn't going to change to change their diagnosis one bit! Stephanie p.s. I've had some folks at home say, "well, at least you know"; uhm totally unhelpful!!! You don't say this to someone (or their mother) who has just been diagnosed with cancer!! or some other horrible chronic, sometimes debilitating illness. okay, sorry! had to vent. makes me so mad!! and I wasn't in a place to say something kind to let them know, just kept quiet.
  6. What did they do for the prep? Curious as we wait for our Ped GI Apt, we know that we are getting signed up for both ends too. I'm most nervous about the prep for the colonoscopy which I have heard can be really hard on the babes. Thanx. Stephanie mother of Faith, Caleb & Joy all waiting for their Ped GI apts to get both ends scoped for multiple GI problems.
  7. Heyyah! I have found the gene test important for Drs who don't think celiacs is a possibility for my kiddos. My 3 kids are all under the age of 5, and on a gluten-light diet before the anti-body testing which turned up low numbers. But, as they all have the genes associated with celiacs, are symptomatic, responded to the elimination of gluten and a gluten challenge (reintroduction of gluten after being off for a while brought back symptoms) my very traditional Doc said that we have enough clinical data to say that we are in the very least highly gluten sensative, if not celiac, and should go on a strict gluten-free diet. We will be having the biopsy done, but only because we are having other auto-immune issues (possible Crohn's) and they will be digging in there anyway. If you do an anti-body test make sure that it covers: total blood serum IgA IgA anti-gliadin IgG anti-gliadin anti-tissue transglutaminase IgA anit-edomysial IgA Another thing, we got our gene testing done outside of our Docs office as they do not test for it in a celiac panel here. There is a local RN who runs a service for celiacs and will cheek swab and send it in for you. It was $395 and the lab billed our insurance directly. I have had 2 different Docs tell me getting at least a gluten sensative diagnosis will be really helpful when it comes to diagnosing secondary auto-immune disorders/diseases and in their subsequent treatment. Just going gluten-free as a trial is wonderful when it comes to quality of life, but if there are other health issues that need to be addressed it is helpful for the Docs to have something in their "language", i.e. a blood test/etc. and not "just" the reporting that it helped things. Oh, if you do eliminate gluten with or w/o other testing, I found it helpful to keep a diary/log of the before and after to show writen examples of our symptoms and how things changed. Sincerely, Stephanie gluten sensitive and gluten-free for life 1/09 mother of Faith (4.5) Caleb (3) and Joy (1) all gene +, gluten sensitive, possibly Crohnies (Crohn's anti-body ++++)
  8. Wow! We have gone through this too, but my kiddos are younger (almost 5, 3, and 1). I have now determined that I will NOT short order chef, for any reason, even for food allergies. What I mean is, my house is not a diner or a restaraunt where you get to look at a menu and order what you want. If I made it, the choices are: eat it, or go hungery! My oldest is very picky, and even with this regime still wants to be picky and complain. So, I sympathize with her (our whole family eats according to the diet) and tell her I know it hard to not be able to eat whatever you want all the time, and then tell her firmly, "This is what I made for dinner. If you are not hungery, or don't like it, then you are free to wait until breakfast to eat." I know it sounds harsh, but I'm not going to let my kids dictate to me what to cook 30mins before dinner, or even at the table. When I catered to them, half the time my daughter would demand something and I would just get done cooking it when she would change her mind. So aggrevating! I'm very through with this kind of attitude, so now we go by the mantra, "You get what you get and you don't throw a fit!" The only time I let the kiddos opt out is if I have made something completely new. They still have to try it before they can say they don't like it; and even then they get a gluten-free almond butter and jam sandwhich. Given her age I would also teach her how to cook her gluten-free foods for herself. Maybe if she spent a couple of hours in the kitchen cooking a meal she would be invested in the product. You could ask as you are making things how she likes the spices, which spices she likes, etc. It would be great for teaching her how to be a young adult with celiacs and take responsibility for how things will be for life. Stand firm against the tide of whininess! With love, Stephanie
  9. Heyyah! I wanted to reply to your post so that you know that people are thinking about the issue! We care! This is a great place to get info and support. I have a daughter (4.5yrs), son (3), and baby girl (1yr) who are in the very least gluten sensitive. They are highly clinically reactive to gluten (i.e. you eat it and get sick) and have the genes for it. We are waiting to get into the Ped. GI as the only ones in the state are a couple of hours N. Our 1st apt is next week! Anyway, we have been wheat/rye free for 18 mos and gluten-free for about a month. I would say ditch the sponges if your daughter gets sick, don't bother if its not a bother . Some kiddos are more sensitive than others. My kiddos get sick if within a 50 mile radius of gluten! Seriously! Last week we stayed with friends while my husband had some training classes for work. We cooked all our food ahead of time and packed it in and are still recovering GI-wise from the week. The only thing I can think of is washing dishes in the same sink/drying them with the same towel. But who knows? Maybe the toys had gluten traces? At this point it doesn't matter much, just trying to deal with the consequences. I hope that your kiddo feels wonderful on her new diet. My 4 yr old already tells people, "I'm sorry. I can't eat that, it has wheat in it." Stephanie dx. gluten sensitive 1/09 no biopsy done Faith, Caleb & Joy gene +, blood work -, strong clinical rx to gluten, dx gluten sensitive 1/09, no biopsy yet! + blood work for Crohn's, waiting for a Doc apt.
  10. Heyyah! We went up to stay with friends for a week while my husb. had some training for work. Made all our dinners ahead of time and packed all of our food in & out. We still had trouble with glutening while we were there. I have no idea what the problem was. Side note: I don't think the new standard for what constitutes "gluten free" is in effect yet, so that means that manufacturers can have up to 200ppm of gluten in foods and still call them "gluten-free" (see previous thread on http://www.celiac.com/gluten-free/index.php?showtopic=53115 about wellshire foods. My kiddos are only accident/diar. free when we eat whole foods. Too sensitive otherwise. Happy hunting Stephanie
  11. Hi! I too do not have an official celiac diagnosis. We are trying to get one for the kiddos (long story), had to add gluten back in to do it. I didn't think that I was sensative, until we added gluten back in. I was feeling so poorly that we decided that I would go gluten-free and if we decided to persue the Gold Celiac Star later would try gluten intro again. I have also lots a lot of weight fairly quickly gluten-free eating the same amounts of food, all home cooked/baked good stuff, but I was loosing 5 pounds a month. I had post-pregnancy weight to loose, and did, but now I have lost 35 pounds, weigh less than when we got married and am still loosing! For my metabolism it doesn't matter how much protein I eat or fruits and veggies, weight maintenance is about the calories consumed in carbohydrates and sugar. I have started baking pumpkin muffins (blueberry are our fav.) that I eat every 1.5 to 2 hours in between meals, and I also have to say, home made gluten-free chocolate chip cookies. If I slack in my carb./sugar consumption at all I start dropping pounds again. I know "Eat right for your blood type" is controversial material, but I am blood type O, and so for whatever reason proteins and veggies/fruits revs up my metabolism. Having lots of snacks so that I can eat every couple of hours is crucial. I have a friend whose son has anaphylaxis-level allergies and is breastfeed so also can't consume those foods. Hard, but not a huge deal except there are 14 foods he is allergic to! She is 5' even, but even then 85lbs is not a good weight to drop to! I just kept feeding her recipes and we worked to augment them to add the max calorie amount to each. Ex. she added coconut milk to her coffee in the morning instead of the dairy he was allergic to. We figure we got her morning coffee up to a snickers! 28g of fat! Avocados are a great source of nutrients and fat. Manchego cheese is made with sheeps milk, and only has a little bit of casein, and we found that both our families could tolerate this cheese. We found it at our Costco. I cut it into squares and carry them everywhere. Anyway, tired can be just from not getting enough calories, but sometimes can be indicative of a greater problem. I would communicate with some sort of nutritionist/naturopathic doctor (ND) or MD if it doesn't resolve itself. Esp. if your health doesn't improve. Hope that was helpful. Stephanie (gluten sensative) mother of 3 kiddos in the celiac stamping process
  12. I forgot to add, did you check your spices? As in, call the co. and ask? Sometimes they dust the belts with wheat so they don't stick. Same with lots of products that don't contain wheat, but they'll use wheat or corn in the machines. Always, call!
  13. I asked a celiac friend of mine for any advice as we are just starting out gluten-free. She said that even though she is the only celiac the whole house has finally gone gluten-free. The did the whole separate thing, counters, cutting boards, toaster, cleaning all the time. She said she just finally got sick of being sick! Even though she was so carefull, she is sensitive enough to be getting gluten-sick once a month. Now the whole house is gluten-free, if her kiddos or husband wants to eat gluten outside the home, fine. They've all been gluten-free for 3 months and she's feeling so good! They had been trying to do half n half for 5 years. Also, if we hadn't all gone gluten-free we would not have known that it wasn't just my oldest D that has issues with gluten. We are in the process of trying to get a diagnosis for my other two kiddos and so added gluten back in and low and behold I FEEL ILL! I ate a Ritz, just a Ritz after 18 mos of no wheat, and a couple of weeks gluten-free and I got dizzy with terrible heart burn. The day after that I had a flour tortilla and spent the rest of the afternoon nauseated, heartburn, dizzy. After we get the kiddos done both my husband & I are going to get tested and I'm trying to convince my mom (colon cancer age 53) to get tested too! Has to come from somewhere , just didn't think it was ME! Stephanie
  14. I don't have anything useful to add but a note that Namaste mixes don't contain soy, dairy or eggs. I know that you aren't doing processed foods, but we use the brownie mix and Ever-G egg replacer and applesauce to make a "chocolate cake" for birthdays.
  15. My two oldest kiddos have asthma and gluten-sensativity/celiacs. We are hoping there symptoms will respond better to treatment now that we are fully gluten-free. Allergist before just had us cut wheat/rye from our diet but now we are having to increase our inhaled steroids. Another note, my husb. is also just getting diagnosis with celiacs (we aren't finished getting tested yet, but 3+ b.m. a day, come on!) and thinks he has had it since childhood (colic, fussy, skinny). He can't remember a time in his life without diarrhea. He also has had asthma since childhood and was hospitalized for an attack in childhood. These are anecdotal, so not scientific examples, but since research backs us up! Stephanie
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