- Celiac.com Celiac Disease & Gluten-Free Diet Forum
- → Viewing Profile: Posts: w919oct
w919octMember Since 08 Dec 2007
Offline Last Active Sep 18 2011 06:16 PM
- Group Advanced Members
- Active Posts 19
- Profile Views 1,100
- Member Title New Community Member
- Age Age Unknown
- Birthday Birthday Unknown
Posts I've Made
18 September 2011 - 11:06 AM
Just remember it's probably more than likely that the curriculum has been adjusted to assure a peanut free environment, so you can and should expect them to accommodate your situation as well. Many of the gluten free flours out there can be used for cup-for-cup wheat flour substitution. While I agree the whole class shouldn't be required to follow gluten free food preparation, the class should be stocked with gluten free flour and xanthan gum for your son.
I remember making many gravies in high school cooking classes. Ask the teachers to switch to corn starch, which I personally believes makes for a better gravy anyway.
The teacher should be responsible for overseeing hand-washing, which is an important step to teach to all cooking students regardless of allergies. Proper food preparation cleanup is also something that should be included as part of cooking class instruction.
My opinion -- for what it's worth. :-)
18 September 2011 - 09:34 AM
I actually have two kids going through this stuff at the moment. They both had biopsies - the younger one border line and then other negative. The eldest (negative biopsy) became so anemic he developed a heart murmur, struggled to breathe, couldn't walk, fell over all the time...was awful..low vitamin K, Zinc, and D. They both have gastritis with no obvious cause and are both medicated and the eldest one experienced psychiatric problems due to the first medication he was on. They have both been on Zoton /Nexium since the beginning of the year. Still no improvement of gastritis. BUT the eldest one since being gluten-free doesn't seem to be malapsorbing anymore and his stools are normal...phew! I am pretty sure they are both celiac - I am, my mother is, they believe my grandfather was as well. But I think there might be something else going on with the youngest. Its so hard to sort stuff out and separate all the things and try and work out what is wrong! I have another autoimmune disease as well and I am on the road to be diagnosed with another - ugh! Good luck. If you ever find out what is wrong with your little one, let me know and vise versa - it seems like they are very similar in symptoms!
I most definitely will! For now, I will tell you both physicians we are currently seeing did tell me where their heads are at the moment (after much prodding from me; I am very good and getting doctors to share their hunches with me with the full understanding it is subject to change). Both believe they are looking at possible Crohns with gluten intolerance (most likely non-Celiac), as Crohns does run on my side of the family and we just learned that non-Celiac gluten intolerance runs on my husband's side. The two are apparently closely linked and exacerbate the symptoms of each other, which would explain why they are so severe and autoimmune-like in nature.
What they disagree on are next steps. Pediatrician believes if it is Crohns, it will appear on its own someday despite the gluten-free diet, and would prefer not to expedite its onset by doing a gluten challenge because he has done so well on this diet. Specialist would like to know if it is Crohns so we can better target his dietary needs (which would include a lot of vitamin supplements), as she is concerned his weight and growth seem to have plateaued recently. So that is where we are now. I decided to take pedatrician's advice for now (thanks to some great feedback from this site), and will touch base again if anything changes.
Please keep in touch, and good luck.
17 September 2011 - 06:08 AM
Not only that, but the peanut allergy moms have some sympathy from the general public (ie - those not affected by a peanut allergy themselves). When it comes to gluten, people are so ignorant as to what it means to live gluten free. Most of them don't even know what gluten is.
I used to have to listen to someone at my office complain about how she couldn't eat very much cake, or put sugar in her coffee anymore, or have hot chocolate (except occasionally) because she was diagnosed with type 2 diabetes. Not that I think diabetes is a small thing (I have another friend who is suffering from it, badly), but she was trying to tell me that her diet was more "restricted" than mine. It used to tick me off to no end. People just have no idea.
You can tell that woman at the office that while my son had a cornucopia of symptoms related to Celiac since birth, the "kicker" that sent us into a frenzy was that he had started to show signs of diabetes -- wetting himself, excessive thirst, malabsorption, diabetic-type "zone outs," etc. Celiac causes diabetic symptoms, in addition to all of the others splattered all over this website.
In fact, the very day I heard the word "gluten' for the first time was when I just crashed the doctor's office without an appointment when he was experiencing these diabetic symptoms. At the time, he was still in the midst of testing, but I was so fed up and yelled "Do something now and stop testing him - I can no longer watch him waste away." That was the very moment she said, "This is a gluten thing -- I'm absolutely sure of it." My first question was "What the heck is gluten?" but boy do I know now.
Truth be told, the very reason I want firm answers is because I do incorrectly use the word "celiac" to describe his condition, even though all evidence suggests he does not have villi atrophy. However, if you say "gluten allergy," someone will try to stick him with an epipen if they believe he's been glutened (yes, we had a close call on that once). If you say "gluten intolerance," you get a lot of unsolicited feedback from folks who are simply doing gluten-free because it's the newest health craze. I'm getting just as frustrated with that, as well as having to fight my way through to the gluten-free shelves at Wegmans on the weekend.
I would never downplay anyone's health condition, but like you, I'm getting very frustrated when people compare what I perceive to be a better accommodated, more manageable and more widely recognized illness to what my child has. Let's face it, only we know what we've been through.
Good luck. I've been there too.
16 September 2011 - 07:22 PM
My 8 year old was diagnosed with gluten intolerance about a year ago. I had her tested after I found out that I have celiac disease. My husband and son are what they call "normal". Our house is split, half gluten free and the other half "normal". When my daughter first found out that she could not have gluten she handled it very well. It didn't seem to effect her at all. Once summer vacation started, I noticed she was sneaking food that had gluten in it. Or when I would ask her what she wanted for a snack she would say " something with wheat in it" or that she was "craving wheat". My husband and I talked and have decided to make the entire house gluten free. My main concern is that my daughter is starting to have a bad "relationship" with food. I want my daughter to have a positive attitude when it comes to food. I am worried that this may turn into an eating disorder. Has anybody else dealt with this issue? If so, how did you handle it?
Hi. My 8 year old son has been gluten-free for 4 years, my husband just went gluten free a year ago, and my daughter and I are what you call "low gluten." So, I feel your pain, but will enthusiastically tell you that you that we've been able to get through it, and I'm absolutely sure you can as well.
First rule -- You need to experiment with every single gluten-free brand out there to discover her faves. Here are some of our favorite carbs that you may want to try to help your daughter forget about wheat once and for all --
Udi's White Bread, Bagels, Muffins, and Pizza Crust, Tinkayada Pasta, Snickerdoodle Cookies, and Dr.Schar's rolls and italian bread (pizza crust is pretty good too).
Dinner -- Quite frankly, even before the gluten issue, my son always preferred fish and meat to pasta, so dinner time hasn't really been an issue here. However, we ALL love Bell and Evans Gluten Free Chicken -- best frozen chicken products on the market -- gluten and non-gluten. We also make MUCH mexican -- fajitas with corn flour tortillas and tacos (all Old El Paso products are gluten free). At any given time we have fresh salsa and tortilla chips in the house.
I make a lot of fried rice and use San-J gluten free soy sauce, which actually tastes better than the cheaper wheat-based soy. (Note -- PF Changs actually offers the gluten-free soy option now as well).
Baking -- The Betty Crocker gluten free products are great, and my son prefers the Pamela's Pancake Mix to the other brands. For scratch baking, use nothing else by Authentic Foods Multi-Blend Gluten Free mix. Expensive, but worth it because you can use it cup-for-cup in any recipe that calls for gluten (though some require a little extra xantham gum). We use it in the Nestle Tollhouse Cookie recipe, and I swear the only difference between them and those made with traditional flour is that they are slightly grainier, and they do tend to go stale faster. In my homemade chocolate cake and cupcake recipe, there is absolutely no detectable difference.
My daughter and the neighbors kids all love the gluten-free brownies by Foods By George(frozen). Their frozen pizza isn't half bad either.
If that doesn't cure her craving for wheat, I don't know what will! Good luck -- 8 year old girls are tough even when they aren't gluten free! :-)
16 September 2011 - 07:18 PM
My little one ended up being negative for CF too- but he is gluten-free since Jan and still has completely undigested meals in his stettorhea stools, oily, mucous - ugh! He is a twin and his brother is grown at a healthy weight and he is just getting further and further behind in every way. Height, weight, speech development, he bruises really easily, has purple under his eyes, diagnoses with asthma before two, always has chest infections - arrghh. I am at my wits end!
I have life threatening symptoms with gluten - its not an allergy - so that just blows those mothers theories straight out of the water. Also - there has just been a study released showing that some gluten intolerance does in fact do damage to the intestines - I think its from Italy? Maybe google it and see what comes up!
Anyways - I feel your pain - it is so awful having sick children and not knowing why - or how to fix it - or what it all means....arrghhh!
Oh gosh, I was so you 4 years ago. Your kid is sick, and no one is disagreeing with you but no one is giving you any answers except "It's not this nor that, but keep him off gluten and see how he does" and you grow so resentful towards the entire medical community because they don't treat this illness with the same verve as other food-related illnesses. After time, I began to realize that this was because the doctors themselves aren't sure of the long term effects of gluten intolerance and could not give me firm answers to my ever-growing list of questions. Doctors just don't like to say "I don't know."
You're son will get better on a gluten-free diet, trust me. We still get the purple circles under the eyes every now and again (I believe when he's been subjected to cross-contamination), but the stools are much better. While my son did get health-i-er when we first initiated a gluten-free diet, the full improvement we see today did not happen overnight. The developmental catch-up and improvements to his blood count did take a bit of time -- about 2-3 years. In fact, it was just this year is when his teacher "officially" stated that he should no longer be considered behind academically because he was testing at an advanced level on his Stanford Achievement tests. His pediatrician credits his steady improvement over 4 years time to a sustained gluten-free diet with no cheating whatsoever. I'll admit the trips to the bathroom still aren't pretty (that is why they continue to cite Crohns), but is does continually get better with time.
What you stated about the research from Italy -- that is exactly why I chose the Celiac Research Center in Baltimore, as much of that research is being conducted by Dr. Fasano from Naples. He runs this particular clinic, though he does not see pediatric patients any longer -- we visit another doctor in the practice. I do like the group, however, because they are a research center they do advocate testing.
Good luck with your own health. I don't have Celiac but am a fellow sufferer of an autoimmune disease, and know first-hand that it's hard enough to deal with your young child's ill-health, but even more difficult when your own health issues are bringing you down. Take care and stay strong!