Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About inskababy

  • Rank
    New Community Member
  1. Interesting that you came to that conclusion from what I wrote. I have NOT made up my mind. When I *thought* they were glutened I had indeed decided against them. But now...I just want the real information, no holds barred. I thought I did have it and wanted to help others by giving them what I got. I can't continue to self flagellate about MSG of all things. I apologized. Mea culpa, mea maxima culpa. But I won't apologize for leaving a forum. I would leave a party where I didn't know anybody and felt out of place, and wouldn't expect the lady stranger standing in the corner to take that as a personal affront. I'm sorry that you take my leaving as a judgment on you and a forum where you are obviously happy; that's not my intent. I stuck around just to see if someone posted the "ah-ha" source I needed for gluten related issues or celiac problems with vaccines after my information turned out to be incorrect in part. I also wanted those who approached me with a friendliness I appreciated to know that I heard their kindness and knew it for what it was, even if they took issue with my facts. I learned a great deal from a couple of lovely people. Thank you...I suspect you know who you are. My son is NOT autistic. Again, you're reading into things into my post. He is/was ataxic, apraxic and aphasic. I clearly stated that. You can be ALL those things without being autistic. He is an extremely bright little boy who was hugely frustrated by his body's inability to do what he wanted. But hey, now that you've opened that can of worms, genetics are clearly not entirely responsible for autism -- autism spectrum disorders have exploded over the past thirty years and that sort of genetic change simply cannot take place overnight. We know where my sons got their celiac disease via their full genetic studies as well as my own since my husband is not available for his own study; thank you very much for the passive aggressive assumption that I am denying my genetic "responsibility" for his health issues. FYI, I don't actually believe that autism is *caused* by vaccines so let's not add more firewood to my personal Joan of Arc martyr pyre. But if Gluten-free Casein-free diet helps those kids, if not having vaccines helps those kids, then amen...glad their parents are doing their damnedest to protect their kids as I am doing for mine. Agatha Christie said "A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." If I have to go kidnap a GSK pharmacologist to make them give me the straight skinny on whether I will have to watch my son regress and suffer facial twitching, aphasic stutters, and apraxic frustration, I will. If you HAD a child, especially one who has suffered as mine has with this and severe diarrhea and malabsorption or as my younger one has with multiple intussesceptions, perhaps you wouldn't mind someone reserving judgment on vaccines until they did some further research and treated the whole subject with caution. My older son is fully vaccinated and needs a few boosters if he can have them safely. I'm not some evil genius trying to purposely spread contagion to your putative children, for heaven's sake. I'm a mom. Flawed, I'm sure, but trying ever so hard. Asking questions now that what I thought I knew is not true. My sons are beautiful, sunny and thriving now. I want assurances I won't undo that. I suppose no one here can give me that, and that's all right. I'll go elsewhere <said in a tone of respectful humility, truly> Now it really IS my cue to exit...I wish I could have done it more gracefully; alas. Blame that on sleep deprivation and worries of a mom left alone by a very long Baghdad deployment with two babies 100 miles from the Arctic Circle, if you must. I'll ask the admin to axe this whole post. Sorry to have caused dissension in the ranks.
  2. Just for the record, I do not take issue with anyone disagreeing with me or with a correction of my information. I DO take issue with the tone and the nastiness directed at me by PM. I will forward those to the administrator I suppose, but there's really no need. I'm a grown up, I addressed it and while I was going to leave immediately, I found my need to check if anyone had accurate information (and hence clarification for my child's sake) too important to leave right away in a huff. I will still be departing though...I don't believe this forum is a good fit for me and mine. Many thanks to those of you who were kind enough to reply and correct me with courtesy, and even pm me info I didn't know. My sons and I thank you... And I did indeed get GSK to say that about glutaraldehyde, but in reference to a study about increased reactions to it in regard to it being used as an disinfectant in endoscopies and sigmoidscopies (I believe 19% celiac rx vs 11% non celiac). She said that although they haven't specifically studied it as a problem with that particular vaccine (I think it was Hep A? Maybe HiB? I don't have my notes in front of me), they do not test it to be gluten free and there was a SLIGHT chance that it was cross linked with wheat proteins/fibers. I did get the line about discussing the ramifications of any vaccine with my doctor. My son has neurological complications with his celiac disease...namely, moderate apraxia, Wernicke's aphasia, and mild ataxia. All of this has vastly improved on a gluten-free diet...he's made 6 months of progress speech wise in less than a month and all ataxic symptoms have disappeared entirely. I am desperately afraid of reversing that by injecting him with something that I can't trust. I am hyper vigilant about gluten and CC at home, so you can see my hesitation about blithely assuming that because the gluten doesn't get digested that it's not an might be an even worse complication from being injected straight into the bloodstream for all I know, and I can't find anyone to give me a straight answer. I believed I found a partial one in my research and found I was not entirely accurate, for which I apologized. If anyone does have TRUSTWORTHY sources so that I can present my fears/arguments/ concerns in an educated way to the doctor, I would appreciate it.
  3. I was told glutaraldehyde was bad for celiacs, as it is used as a fixative that might be crosslinked with wheat proteins to increase solubility by Glaxo Smith Kline. Supposedly the proteins in it have been known to cause similar reactions in celiac patients at a higher incidence than in the general population. I have two books that said MSG did contain gluten, and have since discovered that it does not. I'm sorry for the confusion. I never mean to spread bad information. If anything, I was hoping someone had a handy place to look all this up rather than needing to call each individual company and wade my way through their gobbledygook. But, that being said, this is the third time that I have been unkindly treated on this forum, including topic hijackings and criticism for extended breastfeeding. A gentle "Actually, this is wrong, here's why and here's who to call with better info" would go a long way rather than sending pms to flame people or throw out immunosuppression as reasons for me to ignore the calculated albeit small risk to my child's health through a vaccine. If I can be SURE there is nothing gluten in the vaccines then he will get the boosters. If not, then I am sorry for your child but I refuse to harm mine for yours. I'll be quitting this forum now and unsubscribing from here. Rather than suspecting people of evil, why don't you assume the opposite? I have two newly diagnosed very ill children that I am determined to protect. I ASSUMED we all had the same. Thanks for the early morning stoning...always a great way to wake up.
  4. I didn't realize this, but was checking vaccine ingredients to figure out which ones would be safe for my older son before starting school. I am still working my way through manufacturers, but thought I'd provide a short list of ones that I confirmed have gluten in the form of MSG or glutaraldehyde (a chemical fixative). - Varivax (chickenpox) - RotaShield (rotavirus) - ProQuad (MMR + pox) - HiB (this one has yeast mediums that use barley to grow) Rabies and tuberculosis also have it but since those aren't common kid vax, I didn't fret there. :-) I'll be requesting medical exemption waivers for both my children when I finish my research. Anyone know of others?
  5. I have three people with celiac in the house...I'm the only non celiac person, so it made sense to take the whole house gluten free to cut CC and since I don't care about bread and things anyway, no worries on my behalf. I feed my family lots of lean protein, fresh veggies and fruit, what I call "real food" which is actually pretty pricey as it is. We also eat organic where possible. The place where I used to save was on baking stuff and of course some convenience foods like bread and graham crackers. I figured out long ago it's cheap to eat like crap in this country. I was an avid baker before this was standard for friends to be able to raid my freezer for emergency party cookies at a moment's notice or have me drop off a tea ring for the airmen working long shifts. But wow...gluten free flours are wicked expensive. It's compounded by the fact that we live in Alaska; there's ONE store in the local area (and by local area, I mean within 6 hr drive) that really stocks the flours I need for many of the recipes I like, and I just paid $15.99 for a small bag of xanthan, $6.99 for a small bag of tapioca, $6.59 for garfava. At this rate, a flour mix of the same weight as a standard bag of flour will cost me about $23! My 3 yr old has taken to the gluten-free way like a duck to water with the exception of graham crackers. He likes my homemade gluten-free ones all right, but likes the very precise square shapes of the Josef ones, and admittedly they do taste more graham like than mommy "gam cackers". Those retail for $6.49 up here. For 12 crackers. OWWWW. Any tips to get the cost down? Handy internet shopping sites? It won't hurt any for us to cut down on bread and baked goods anyway, but anyone with kids knows the wrench it is for them to give up pbjs, toast with their morning egg or their favorite pumpkin waffles so going entirely flourless is impractical. My husband would sell an organ on the black market for a crack at pasta -- Tinkyada costs $7.19 here. I'd just like to not feel like I need to sell one of my children to the gypsies so the other one can eat a gluten-free graham cracker. Let me in on the secrets of going gluten-free inexpensively and I'll think kind thoughts about you for the rest of my natural life! :-)
  6. I cannot believe what a difference this had made for my oldest son! My youngest son had a celiac crisis and was diagnosed last month. I started to suspect that my oldest son might have gluten issues as well...after doing lots of reading, I realized he had very mild GI symptoms that could be linked to intolerance. He is almost always sick...lots of diarrhea episodes that have gotten increasingly worse, to the point of not being able to hold it after a taste of pretzel. He's also a very late talker, and while very sweet tempered, has some pretty crazy tantrums from time to time...ones that last for hours. I got him tested two weeks ago and took him off gluten immediately thereafter, and I swear a different child is living in my house. He's chattering away all day now, with 10-15 new words a day -- he's sleeping 12 solid hours at night when I was lucky before to get 4 before he was crying for me to come get him -- not a single time out for two weeks -- no diarrhea and his first truly solid poop in 2 years. First time it didn't float either! It took forever to potty train him because he hated getting diarrhea in his big boy pants. He chows his dinner every night and has lost most of his pickiness issues. He willingly went shoe shopping and got his haircut without flipping out for the first time ever. He's gained 1/2 lb in just two weeks. Oddly enough I had to take his pants in on elastic despite weight gain because apparently his tummy has lost some swelling. His blood tests came back two days ago as negative for celiac disease, but he was anemic which the dr said was a red flag regardless of the test result. The doctor felt strongly that he would still benefit from a gluten free diet (umm, duh) and thinks he does have celiac disease, given that my husband and youngest have it and he's gotten so much better. When we went to go get tested, he was scared of her, wouldn't speak and cried during the blood draw. When we went back for results, he bounced in, jumped on her lap and just started chattering away all while letting her actually examine him. She was blown away. This is AMAZING. I'm just in tears...both in gratitude for the fix and that I'm sad that I didn't realize sooner that he wasn't just "delicate" or "high needs" or "sensitive" -- he was sick. I would be cranky all the time if I never felt good too.
  7. Want to hear mine? I was strongly pushing for my youngest (6 month old) to get tested for celiac disease after a hospitalization for intussesception (bowels turn inside out, common in celiac infants). The doctor disagreed and thought he had valvolus instead and wanted to do an upper GI. This would require him to drink a barium suspension. Barium suspended in GLUTEN. When I expressed concern about that, she answered...wait for it... "Well, we DO have resuscitation equipment if it causes a problem." Let's all say it together...what the F....???
  8. False Negative?

    Both of my little boys tested negative but the fact that my oldest was anemic, positive genetically and had a positive dietary response and my youngest had a celiac crisis when he ate one noodle, had positive genetics and a positive dietary response was enough for our physician to declare them both positive for celiac disease.
  9. My son was just under six months old when he experienced a celiac crisis from an exposure to a barley teething biscuit. He had an intussesception (the bowel telescopes on itself) as a result and was hospitalized with dehydration and acute abdominal distension. Luckily, the intussesception resolved just as they were about to go into surgery. We did blood testing -- it was negative. The pediatrician I saw said babies have a horribly low reactivity to the serological tests (no specifics), and he had been gluten free for two weeks by that point anyway after only two exposures. At that point we did genetic testing. Normally genetic testing would be nothing more than informative, but because he was far too young to get positive results on a serological panel and an endoscopy wouldn't work without exposing him to gluten, our doctor felt comfortable with the positive gene test and positive dietary response that he could be diagnosed as celiac. It doesn't hurt that my older son has since has a positive blood panel and gene test as well, and my husband has had total remission of his stomach/headache issues since going gluten free. I doubt that my son would have gotten diagnosed this young or even at all if he was more like my husband and older son -- they are just cranky, tired and diarrhea prone. My youngest needs hospitalization for a crumb. Many doctors are going away from endoscopies for real young ones especially when there's a demonstrated improvement on the gluten-free diet. As my doctor says, if the diet makes them feel better, then that ought to be enough for everyone involved.
  10. I would love that! Thanks so much!
  11. My son Timmy was just formally diagnosed with celiac disease by genetic testing and positive dietary response after a celiac crisis. We've had my three year old tested today via serological panel and we're *pretty* sure he has it too...he has had intermittent unexplained diarrhea since two, ataxia and is underweight for his height. He is the one who will feel the celiac diagnosis the most in the family -- he loves graham crackers with an unnatural love and Wheat Thins rank above manna for yummy treats. But his symptoms are NOTHING like his brother's. If we kiss Timmy after eating a sandwich he cries for hours with a bloated tummy. So we're looking for a children's book that will explain it (he loves books) and will reinforce why he *probably* won't be able to eat gluten stuff anymore even if it doesn't always hurt his tummy. I am taking my kitchen totally gluten-free for my younger son anyway, and Connor already loves the gluten-free stuff I've made, but like I said, he will not like giving up graham crackers! Any books that helped your little ones?
  12. Holy crap...I know, terrible pun. We have a positive diagnosis on my almost eight month old son and we're doing a blood test for my older son today. This has been a problem for him for almost a year...greenish, sandy poos. It's gotten worse in the past couple weeks with explosive diarrhea. That combined with behavioral issues when he has gluten (waiting for the positive results on baby to come back -- dr wouldn't test without those) and I'm pretty sure he's a celiac too. Weird. Anyone know what docs have to say about this?
  13. Darn. Okay, well we can hope against hope eh? I have a seven month old with probable celiac and I am waiting for the gene test to come back to prove to the doc why my 3 yr old should be tested too...darn insurance.
  14. it really three weeks to get the genetic testing back? How soon did your tests come back?
  15. We chose not to do the endoscopy...but then we have a 7 mo old. We chose to believe the genetic test and dietary response. If he was older and had an uncertain dietary response that was less obvious, I would definitely consider it. If my older son's test comes back positive or questionable, we may indeed do an endoscopy.