Michi8

Scott: The voice of confidence, lol Glad to know you're fumbling with the rest of us.

Great Idea!

Calling all computer literate Celiacs, please help us guide our way through the new options.

"New Board Features - 101" (for dummies). New Thread, any takers?

I'm not really noticing any new features, but that may be because I put in my own BB Code rather than using the preset buttons. It would be nice if someone could start that new thread and walk us through the new stuff!

Michelle

Judy:

It is on the upper right after you hit reply. I am not sure that it is activated. When I click on it it shows a little hand If someone know about this, please post. I'm still reading "computers for dummies".

Everytime I click on "ABC-check", I get a pop-up blocker alert. Help anyone?

I'm not seeing a spell check button. Hmmm, I wonder if it is browser specific? I'm not seeing it built into the board though.

The pop-up blocker is an alert from your browser. Which one do you use?

Michelle

I agree As for normal breast development, why does it make small breats shrink even more?

Just because it's normal, doesn't mean we have to like it. LOL! I'm not too thrilled with the shape I'm in after breastfeeding 3 kids (6 years total.) The thing is, though, it's pregnancy, not breastfeeding, that creates the physical change in shape. So whether you breastfeed or not, they'll never look the same again.

Michelle

Dionne - I was diagnosed when my son was 2 and I had breastfed him for 18 months. In our case, my malabsorbtion didn't effect him - he obviously knew what he needed and got it all!! However, I think it gave me more problems as it obviously left me with even less in the way of nutrients.

Sounds like a very interesting study. As the breastfeeding, in hindsight, effected me so badly (being undiagnosed at the time), I often wonder if it was worth it in terms of having passed any protection on to DS.

Breastfeeding is worth it. It's still the perfect food for babies...providing the correct nutritition at each developmental stage, and providing immunity. The body will do its best to ensure that the baby is getting the nutrition it needs. Breastfeeding is also a stage of normal breast development, and decreases the chance a woman will develop breast cancer (cuumulative effect based on the length of time a woman breastfeeds all of her children.)

Michelle

Sorry, I didn't ask her any of your questions. If you have been officially diagnosed then your baby would qualify for the study and you could contact her yourself and ask. It seemed like a great resource and if I qualified for it I definitely would have joined.

I really had thought that gluten did go through breastmilk, I read that in many places. My own mother told me that I had D every time she breastfed me when I was a baby. I certainly think that people should do whatever they feel comfortable with. I was simply posting what this doctor told me. It seems like she is leading the research and if anyone would know the latest it would be her. At the same time, she did say that everything she told me is based on what we know now and that may change once they complete this study and other studies in the future.

Personally, I think more gets into breastmilk than researches know (or admit?) I know my own children were very much impacted by what I ate during breastfeeding...I simply avoided foods that seemed to correlate with their health issues. Didn't clear it up completely, however, (I was not gluten free either) until they grew to about 20 pounds. I have heard the anecdote that once babies get to about that weight, their GI systems settle down. Don't know if that's true or not, but it seemed to work that way with my boys.

Michelle

godairyfree.org is working again! Here is the webpage that lists dairy ingredients: Open Original Shared Link

Michelle

Very interesting. I was wondering recently (and maybe you discussed this with her?) whether it was better to breast feed or not when the mother is a celiac but is somehow still ingesting gluten in her system. I was dx in May, had my follow up biopsy in Oct. which showed still flattened villi (i.e., NO HEALING, even though I've been very thourough on this whole gluten-free thing even down to the shampoos/lotions, etc.), found out I was 8 weeks pregnant in Nov., and am now 12 weeks. I was wondering if I continue to somehow ingest gluten so that my intestines do not recover, would that be bad then to be breastfeeding (would my elevated antibodies somehow affect the baby)? Or, vice versa, say I am healed and continue gluten-free, will my baby not develop the correct antibodies to fight off gluten? I am not a scientist, so maybe I'm just over analyzing this and not making any sense

There is a risk to the developing fetus if a celiac mother continues to consume gluten, due to malabsorption of essential nutrients. I imagine this would be the same for breastfeeding in that it may affect the nutrient level in the breastmilk...and risk that the baby does not receive adequate nutrition.

Michelle

Cassidy,

Thanks so much for posting that information! I am sure it will help others....Research is so important.

Interesting...because others have said that it can be.

Laura

I believe that there are a number anecdotal reports of gluten passing on to baby through breastmilk, but this has not been confirmed through research. At this point, if a mom feels that being gluten free during breastfeeding is helping their baby, then there is not harm in doing so.

Michelle

Spell check.....hoorah!

I found that, but I think that I need a users guide for the rest of the new stuff

Thank for all your work Scott, it is much appreciated.

Spell check? Is it automatic? Will it allow Canadian spelling, like neighbour, colour, etc?

Michelle

Hi Tiffany, my 8yr old son tested + on the blood tests (for celiac disease) in late Sept. this year and also has Aspergers. We took the casein away a month after the gluten, but I've had a hard time finding lists of ingredients to avoid for Casein on the internet. Besides the words milk, butter, cheese, casein, is there any others that I need to question? Is it hidden in other ingredients like gluten is? And finally, where can I find casein free butter substitute or cheese? It seems that even margerine and soy cheese has caseinate in them. He's starting to lose weight because there is just not enough fats in his diet. He's 8 and weighs 46 lbs! Help

Courtney

Courtney, there is a long list of milk-derived ingredients you need to watch for. There is a very complete list here: Open Original Shared Link I'm having trouble connect to that website at the moment. Once you are able to go there, do a bit of looking around for the list...you can print it out to take with you when you shop. As well, you can check out Open Original Shared Link for a list of websites with info about being milk, casein and/or lactose free.

There is a Fleishman's margarine that is dairy/casein/lactose free (at least in Canada.) Not sure about gluten though. Dairy free cheese is very difficult to find...almost all soy cheeses have dairy in them. I did find one brand of slices: Open Original Shared Link. They taste not too bad...pretty close to Kraft slices.

Michelle

I've got my browser set to remember logins, so it remembered that it used my email address. Today the board didn't recognize it. I needed to use my username instead.

I'll have to explore around and see what's new. I have noticed that the board layout doesn't look quite right in Firefox for Mac though..."Blogs" is bumped down out of the menu.

Michelle

Edit: I've since tried it in Safari...looks perfect, but the browser is slower than molasses (I think the last Safari upgrade screwed it up,) so will have to stick with Firefox for now. I checked the login info again too...seems it wants you email address to login on the front page, but username when using the "login" page.

I see the board is back! Yay! Had some trouble logging in, though...seems that it's gone back to user name instead of email addy?

Michelle

Carla, I've had digestive problems for 25 years. I was diagnosed with chronic fatigue syndrome and fibromyalgia in 1986 but I've had them since 1982. I have early osteoporosis, Gross vitamin deficiencies, and B12 deficiency, along with daily killer headaches. HOWEVER, I had two stomach surgeries that gave me severe hypoglycemia.

I only eat 12 foods because all of the others give me migraines, sneezing attacks, or -- the majority -- are much too high in carbohydrates for me. I eat about 50 g or less of carbohydrates a day in order to reduce the symptoms of my hypoglycemia (I can't control it -- my blood sugar is still off all the time but my GI guy says that it's fairly normal for my type of gastric surgery. It's also possible and probable that might B12 deficiency and osteoporosis are a result of the surgery, but the doctors wanted to be certain that I don't have celiac since the fibromyalgia, headache, additional exhaustion, feeling crappy stuff all started years before the surgery which I had in 1990.)

Complicated medical history because I was hit by a drunk driver. Totally healthy before that and then completely disabled with dozens of symptoms since then. Anyway, I'm not sure if I should take the plunge and try the diet. It's not as easy as anyone makes it sound because I can't substitute carbohydrates. I would have to go off my wheat bread and dry crackers and go grain free, which will drop my blood sugar and make me feel really sick. But of course it's the only way to really find out if I feel better gluten-free. I know perfectly well that medical tests aren't completely accurate. My dilemma.

Thanks for your input. Sigrid

Sigrid,

Have you picked up any books on celiac disease? There are a couple of good ones I'd recommend...they may give you some info on the relationship between celiac and hypoglycemia...

Celiac Disease: A Hidden Epidemic by Dr. Peter Green and Rory Jones is an excellent book that thoroughly explains celiac and its relationship to other disorders, testing, and treatment.

Dangerous Grains by James Braly and Ron Hoggan is another excellent book. Book Description: Dangerous Grains turns the U.S. Food Guide Pyramid upside down by exposing the myriad health risks posed by gluten grains (wheat, rye, barley, spelt, kamut, and triticale). The authors, leading experts in the field of food allergies, and celiac disease, present compelling evidence that our grain-centered diet is to blame for a host of chronic illnesses. Largely misunderstood and frequently misdiagnosed, these disorders can be prevented and reversed by the useful program outlined in this important new book.

Michelle

I found an interesting site:

Open Original Shared Link

LOL! You must have posted just as I was adding my edit with that link!

Michelle

No I don't. I don't know that it's any more effective than giving produce a thorough rinse with running tap water (and I'm hesitant to add any other potential chemicals to my produce.) An awful lot of hands have touched that produce before it touched the scanner...and before it makes it to your table. Heck, that produce may have grown in a field that's been contaminated with any number of things to boot.

I'll bet Consumer Reports has tested these produce washes...may be worth looking into what they say.

Michelle

Edit: Here is a website that gives tips for washing veggies...and ways of creating your own "produce wash:" Open Original Shared Link

Thank you JenKuz and nikki-uk for that information. I will continue with the gluten free diet then.

I'm pretty sure that my GI didn't bother going any further, because everything looked normal to the naked eye. I'm also sure that, even though she heard I wanted to check for celiac, that she probably dismissed it because no one else in my family has been officially diagnosed. She was totally unwilling to listen to any symptoms beyond GI issues...even though she may be specializing in celiac, it doesn't mean she's open-minded.

The colonoscopy is still important, though, to rule out any other potential health issues that could be responsible for my symptoms.

Michelle

You can support something but not always go by those rules. You may support, for instance, condom use to prevent AIDS, but not always use one in your marriage because you are monogomous. You may support, for instance, healthy diets, but offer less healthy treats in your product line. And you can support celiac disease foundations, be produced in shared facilities, and be really conscientious about cleaning procedures. Just because it's marketing doesn't mean it's also false.

Eh... I suppose I don't see the consternation... Not everyone is always going to agree with you. Heavens knows I've had it happen to me too.

I'm not expecting everyone to agree with me. I'd like it if people would read my point and understand what I'm getting at. I got sucked into buying this product based on it's advertising. I missed the small print until after I had opened the box and tried the product (which is actually quite good), and was concerned...so I wrote about it...and was looking for guidance (and perhaps a BTDT or two) as to whether that concern is warranted. I was annoyed, because I feel that the advertising was a bit misleading. The company wants us to know it supports the foundation, because doing so is effective promotion to celiac customers.

Michelle

I didn't realize that colonoscopy reached the area that showed the damage...I had thought it was endoscopy/gastroscopy that gave a better view/access to the affected areas. Now, I'm not going through these procedures just because I suspect celiac...I need to rule out any other potential problems too. I'll try to talk to the dr (she specializes in celiac BTW) about ensuring there are enough biopsies. Unfortunately, she has an abominable bedside manner, and seems to dislike explaining anything.

I've only been gluten free for about a week (and am still making mistakes anyway). Maybe I'll go back to eating gluten around Christmas (it'll certainly make Christmas easier for me to navigate) and through to March then. It sucks, though, that the wait for these procedures is so blinking long...it was tough waiting more than 3 months for the endo!

Michelle

PS: Sorry, Sonja, for hijacking your thread. I'm sorry you haven't received clear answers yet...perhaps your tests will come back with some good info. You certainly aren't the only one in this boat. Re: the iron...do keep an eye on it. My first iron tests came back borderline normal, and the dr didn't bother to mention it to me. 2 months later, they were below normal, and we're sure that they had dropped even more 2 months after that (I had gone in to my dr to review all my blood tests over the last 6 months, because everything was coming back normal, but I was/am still having health issues and was getting worse.) I've been taking iron now, and it has helped some of my symptoms a bit.

I had the same as you; endoscopy, colonoscopy both normal (though my doc opted to only do a biopsy of stomach and one of large bowel, because the small bowel "looked fine from the scope...." doesn't he know the damage is microscopic and can be invisible to the naked eye early in the disease? Clearly he didn't.), blood work normal...

JenKuz, it sounds like you had a similar experience with the endoscopy to mine...everything looked normal to the naked eye, so the dr only took a biopsy from the stomach and duodenum. I'm still waiting for the results, but am sure it won't give accurate answers. I am trying gluten free now, but have a colonoscopy scheduled for March. Do I need to still be eating gluten for a accurate coloscopy? I sure hope not, because I waited three months until I finally had my endoscopy to try the diet!

Michelle

Well..... I gave up on the colonscopy prep. Couldn't do it. I did have the upper endoscopy done. It was a freaking nightmare. I can remember the whole thing. I gagged and dry heaved and I even think puked the whole time. I have a horrible sore throat still and I had it done at 8am this morning. My doctor said that everything looked normal. He did do some biopsies. It's sad that I wish something was wrong just so that I had an answer. Thanks for asking me how it went.

Kara

I'm sorry you had that experience. It sounds like they didn't give you much (if any) sedative. I had mine done two weeks ago, and was pretty much knocked out from the sedative (fell asleep quickly and don't remember a thing...like I was in a time warp!) Take care of yourself...I hope your throat feels better quickly, and that you get some concrete answers from your test.

Michelle

Many people think I over do it but I will NOT under any circumstances consume something that is marked as processed in the facility as wheat. Period. I have had to learn the hard way that it is not worth the crap shoot. I greatly appretiate a company telling me about the possiblity of CC, companies like Lays had made me very ill in the beggining many times because they don't do this. I live in an area with a Wegmans and have never had a CC issue with any of their products. I don't do mainstream foods for the most part because frankly I have been gotten to often.

Since you feel that way about the CC issue, how do you feel about a product being clearly advertised as supporting celiac, but then having a small CYA statement buried on the side panel?

Of course that little "we support celiac" label is all about marketing...it may seem like they "really care" about this issue, but, quite frankly, if it weren't for potential profit, then the label wouldn't be there. I may not know that much about the manufacturing process, but I did work in marketing...and my husband still does...there's always a spin.

Please don't stop posting your questions, yes sometimes there are folks who can seem to be a bit harsh but we have to remember that it is hard sometimes to communicate on boards when we can not have a face and tone to help us deciper. Some folks are also not totally off gluten which can effect the tone and temper of both the poster and the reader. Some folks like myself are also extremely busy and sometimes we just get to the point. That can also make us seem like we don't care or that we might think the question 'silly'. There are no questions not worth asking. Please don't be afraid to post any, on anything.

Yes, I can just get to the point sometimes too (although I also have my tendency to ramble at times as well.) In this particular thread, though, responses have been mostly in opposition...I feel like it's been a battle against me...and had hoped to hear from more people who may support my concerns.

Michelle

Well, it took my husband and I a whole month of trying before we got pregnant (I am not kidding, thrilled, but very suprised).

So I have my first dr. appt tomorrow, she is familiar with Celiac, but I don't expect my OB to be an expert.

So I've been reading through pregnancy websites, and am waiting for a few books to come in. I typically would do lunch meat and cheese rolled up. But now, no lunch meat. So I've been eating fruit, string cheese or nuts every few hours, but I feel like I want a normal lunch, well, somewhat normal.

Any ideas for a pregnancy newby?

Thanks!

Brandy

Congratulations!

Just so you know, you can eat lunch meat provided you "reheat" it before eating. Unpasteurized cheeses are also a risk for listeria.

Other lunch options: salmon salad, chicken salad, egg salad, etc; Hummus with veggies and/or gluten free crackers, tortillas, etc; Soups; well, anything you'd make for supper really.

Michelle

What makes you think I'm being hostile? You clearly don't know much about food manufacturing, and I was explaining to you in as much detail as possible without being overly technical. Not peppering all of my posts with smiley faces doesn't make me hostile.

It's not the smiley faces. It's your tone. Where in my posts does it give you the impression that I think "heaps of flour" are lying around the factory anyway? The food manufacturing explanation itself was great...very informative. Still doesn't answer to me how careful I really need to be about cc though, and how seriously I need to take the CYA statements in terms of gluten.

I have had to deal with CYA statements for many years, due to my other allergies, and I know, based on what kind of reactions I have, what my level of comfort with risk for those allergens is...but I have clear-cut reactions to those foods too. I am only a week into gluten free now...and am making mistakes left and right...I don't know, at this point, what my level of acceptable risk is.

Michelle

Michelle

Please don't be upset--we all need to remember that *anyone* can react to *anything*. We all have different levels of tolerance, and just because something agrees with us, does not mean that's the case for everyone.

I appreciate someone sharing a positive or a negative experience with products. I am someone who is sensitive to minute amounts of gluten, and I like to compare notes, or use these comments to guage whether or not to buy certain products.

The same type of thing happened to me last year when a well-liked brand of potato chips glutened me. I was clearly in the minority on that one! I felt bad, too, but I realized that everyone was just giving their own opinions--which is good.

I'm sure no one intended to offend you

Thanks, jerseyangel.

I've come away from this thread feeling like if I don't know the answers already, then I'd better not be asking questions. I certainly didn't think that making a comment/rant (as many people around here do) about something that surprised me would result in such negative personal responses. From some of the posts, it sure seems to me that no one bothered to read what I was actually saying anyway. I'll be sure to not post on something like this again. I'll just stumble through figuring out how to safely eat gluten free on my own.

Michelle

Your post leads me to believe that you don't really understand what goes on in a factory. It isn't as though there are heaps of flour lying around, or that the lines are just getting lightly rinsed between runs. You have to remember that bacterial contamination and pest control are extremely important as well, and if for no other reason they will be extremely careful because of those things. There is something called a HACCP plan (Open Original Shared Link) that dictates the procedures that must be followed to ensure food safety (this includes allergen control, when applicable). This is followed very strictly. In most cases, allergens cannot even be stored in the same area as other products, and there are cleaning procedures that are meant not only to control bacterial contamination but allergens as well.

In the plant I work in, the cleaning process for a line takes 6 hours. EVERYTHING is cleaned and sanitized, right down to the hoppers that hold the glue for the cartons. Soy and dairy are segregated from each other and from other ingredients in the warehouse. Everyone in the plant, from the management to the caser operator, gets allergen awareness training annually.

If you are unsure of a company's policy when it comes to allergen control, you are free to call them and ask about their HACCP plan. That should tell you all you need to know.

I, for one, eat Nut Thins all the time without worry.

Why are you being so hostile about my questions? Please don't treat me as if I'm stupid. I've obviously stepped on a bunch of people's toes here, because I'm getting a lot of flack for bringing this up. So much for being a supportive and helpful environment.

Michelle