acousticmom

I've heard comments about how long you need to be eating gluten to be tested for celiac (around 6 mos., if I remember right), but I'm wondering how much you need to consume.

Since only one member of our family is officially diagnosed with celiac, our family doctor recommended doing blood tests on the rest of the family every 1-2 years unless someone develops problems that warrant testing sooner--and I'm good with that approach. At home, we all eat gluten-free, which is 90% or more of the non-celiac kids' meals. They get gluten at social events and friends' houses, but it doesn't amount to nearly as much as a "normal" diet. So when they get tested next spring, will this mess up the blood test?

Carol

These are some great cooking tips--can't wait to try a bunch of them!

We cook our own food all the time, and never even ate out much before gluten issues. But lately I've seen ads for chef-cooked meals delivered to your home, and some of the services do gluten-free cooking. If I remember correctly, it sounded pretty reasonable ($7/meal), though I don't know if there were any hidden charges or how good the food is, how trustworthy, etc.

Has anyone tried one of these services? Might they be a solution for the creative binge times (I do that all the time, too, and find myself asking the kids, "Are you hungry again? I just fed you yesterday!" They think I'm kidding. . . .)

Carol

My son's GI prescribed NuLev, and it helps the pain subside quicker when he gets glutened. I know there was an earlier thread on different medications that some people found helpful. No one-size-fits-all magic pill, unfortunately.

Carol

Even tho I turn 40 next year, I feel like I am about to become the person I have always wanted to be. As exciting as that is, I choke up when I think about the years wasted. Makes me all that much more dedicated to putting the future to good use.

I feel the same way. Brainfog and fatigue set in when my first child was born, and I wish I could go back and celebrate all those wonderful moments when the kids were little. Instead, I worked very hard to simply endure and get from one day to the next. I forgot what it felt like to be really happy, but tried to make the best of it.

Once the kids were all in school, my plans to contract part time (tech writing/indexing) never got off the ground because I felt like I couldn't focus well enough (and stay awake long enough) do a good job--but I made other excuses. I think admitting how compromised I was, and having no solution in sight, would be utterly depressing. Especially having been a high achiever in the past.

I think of myself as someone who loves people and cares deeply about others, but all this time I was too tired to really care, much less offer help when someone was having a rough time. Too tired to engage in conversation--it was all I could do to listen; I had no 2 cents to offer on anything. Exercise? Only if I had to, and then I'd wish I was taking a nap instead. My formerly neat handwriting was sloppy and hard to control.

Even simple tasks like grocery shopping were the mental equivalent of wading through hip-deep oatmeal.

Since going gluten-free about 6 months ago, I usually bounce out of bed in the morning feeling not just rested but giddy and ready to take on the day. I remember what joy feels like! I still have setbacks as I learn what foods make me tired, but most days I feel like the person I was in high school, back when anything was possible.

Thanks to all of you contributing on this thread. Your stories make me cry, and your perseverence inspires me. I wish I had "met" you all a dozen years ago. Even more, I wish this kind of stuff could make it into the mainstream, so more gluten-sensitive people who suffer mentally could get better. Nancy, I'm glad your counelor is seeing the connections, and I hope she/he can help more people with gluten-induced problems.

Carol

My 13-year old celiac son has always had an occasional small hand tremor, usually when he's excited, like opening birthday gifts, etc. It has never seemed to impair him--he's got excellent fine motor skills, but we've never found out why he has it. Just now I was reading about neurological symptoms of celiac, and looked up "peripheral neuropathies," which seem to be common with celiac. Lo and behold, tremors are a form of peripheral neuropathy.

Anybody else have this? Does it change on the gluten-free diet? His hasn't changed after 6 months gluten-free, but overall he's feeling great.

Carol

Nantzie, your counselor would be interested in the research of M Hadjivassiliou, M.D. He's published a lot on the neurological manifestations of celiac. He wrote an interesting editorial in the Journal of Neurology Neurosurgery and Psychiatry in which he says, "Gluten sensitivity can be primarily and at times exclusively a neurological disease." You can find it at Open Original Shared Link.

Carol

It's not a casserole, but we love grilled zucchini, brushed with a little olive oil, with salt & pepper. Yum! (I really shouldn't read this section of the board when I'm hungry!)

Carol

Thanks for the replies. Can't wait to try these. With family in town, it's a week-long food fest, and I'm bringing as much gluten-free stuff as I can. These ideas will help!

Carol

I'm looking for a good crumb topping to put over blueberries or apples for a quick baked dessert. I tried one topping recipe a while ago but didn't like it. I think it used rice flour with chopped nuts, brown sugar & butter, maybe cinnamon--but the rice flour left it a bit grainy. It didn't combine the way regular flour would.

Any suggestions?

Carol

You guys are awesome! I was thinking about backpacking with the kids this summer, but was a little intimidated at the challenge of finding packable gluten-free foods. This thread answered my question before I even asked it!

Another product we found is Jerky Direct's organic jerky (online). The "regular" products aren't gluten-free, but the organic ones are. And they don't have MSG, nitrites, etc, either. My kids liked it better than store brands, though not as much as homemade.

Carol

My dr. gave me Niferex last month (ferritin = 11). I can handle it once or twice a week at most if I drink lots of water every day. I took Freeda Quintabs-M for a few months before that, and it didn't have any effect on the ferritin levels. Maybe it was a less absorbable form of iron, or maybe I had malabsorption issues (went gluten-free in Feb., but don't know for sure whether gluten is a problem; other food intolerances definitely are).

Does anyone know if it's worthwhile to take Niferex only once or twice a week? I know I need to ask my dr. about it, but I don't think much of him so I've been putting it off.

Carol

I don't have any experience with probiotics, but I just read this in a book about food intolerance (Food Allergies and Food Intolerance, by Jonathan Brostoff, MD and Linda Gamlin, 2000):

"Some of these [commercial preparations of bacteria intended to restore normal gut flora] have been tested and a crucial difference was found between those bought in health food stores or drug stores and those purchased through mail order. The former had often been stored for long periods at room temperature, and, not surprisingly, researchers found very few live bacteria in them. The bacterial replacers bought by mail order had only spend two to three days in nonrefrigerated conditions and were as rich in bacteria as the manufacturers claimed."

Also:

"If you choose yogurt, you can make sure the brand you are buying really is live by adding a spoonful to some warm milk that has been heated to boiling and then allowed to cool. Keep the mixture in a thermos for six to eight hours. If it has not turned to yogurt, then the original yogurt was not live. The best way of ensuring that your yogurt is live is to make your own--starter cultures are available from some health food stores, or by mail."

I can't vouch for the accuracy of these statements, but the rest of the book has helped me a lot. The authors address the medical controversies surrounding food intolerance and candida issues in a pretty evenhanded way. And they give much more detailed info on doing an elimination diet than my dr. provided. (When I asked her about their advice, she agreed on every point. I was too polite to ask why she didn't tell me all that in the first place!)

Hope some of this is helpful.

Carol

I'm from Ortonville (between Flint & Pontiac). My son was dx'd in December '05; I've been gluten-free since Jan. and will probably challenge it next month.

My celiac son (and non-celiac daughter) will be spending a week at a camp near Traverse City. Hubby and I will probably camp nearby to be available if needed--it's such a great area for a getaway without kids!

I'm working with the camp's kitchen manager to see if there is anything he can safely eat. While they're very willing to help, it still seems like a big risk. We'll probably end up bringing most of his food for the week, but that seems like a lot to pack. It might be nice to be able to buy some of it while we're up there.

Does anybody know who carries gluten-free foods in the Traverse City area, or if there are any restaurants with gluten-free menus?

Carol

I am almost done with mine, it should be commercially available by June of next year (gotta let people test if first)

I wonder though with so many people having other "food issues" if a gluten free one is enough? It seems like I really need to work on ones for all kinds of intolerances, but then my goal of June 07 would have come and gone before I could get it ready

It's hard to know where to stop, since so many food intolerances can be intertwined, with or without celiac disease. Best of luck!

Carol

Is there a resource already available that would help me catalogue ingredients and convenience items and provide the necessary information so someone else besides myself could understand what to purchase and how to prepare it? Am I nuts?

When my son was diagnosed with celiac disease, I started working on a database like that. But I never finished it, since he's twelve and good at reading labels and helping cook, and hubby and extended family have been learning this stuff along with me. (After reading how many people deal with unsupportive families, I tell them all the time what a blessing they are!!)

Anyway, I've considered finishing the database and marketing it online, just not sure how many people are as nuts/anal as me! But it's such an overwhelming amount of info, and so hard to communicate to others. . .

Would such a tool be helpful if it were inexpensive? I'd love your thoughts.

Carol

I read one encouraging thing in my friend's ELISA results. They say that people who follow their specific plans for eliminating offending substances, detoxing, and restoring alkalinity "have often been able to restore tolerance and overcome most or all of their reactivities."

Maybe these intolerances won't last forever if we take care of ourselves now. I'm hopeful.

Carol

. . . . The first thing you know to elminate is the eight major allergens. After that, it gets much harder, because there isn't a lot of consensus on what foods are most often offenders in intolerances.

Tiffany,

How did you decide what to eliminate and what to leave in? Looking at my friend's ELISA/ACT results, beyond the 8 major allergens, there seems to be a huge variety of things that cause people to react (I should mention that they look specifically at delayed reactions, not clinically allergic reactions). So even if I do a ton of research, how helpful is it? That seems to be the tricky part.

My own observations give me a starting point. Beyond the milk & peanut allergies, sugar is a definite problem, even in small amounts (real maple syrup, watermelon, Gluten-free Casein-free baked goodies)--and even though I'm borderline hypoglycemic, it's a different type of reaction. I'm also suspicious of soy and corn. I've already been gluten-free for 3-1/2 months, and that seems to have helped, too. My mom feels so sorry for me, depriving myself of so many yummy foods. She doesn't believe that I'm truly thrilled to start feeling like myself again after almost 15 years of feeling drugged. (Or maybe she suspects she has some of the same intolerance issues, but doesn't want to go there.)

I don't know much about detox remedies, other than that there are a lot of them out there, but I wonder if that could clean the bad stuff out of your body and shorten the time needed for eliminating foods? Or if it could shorten the resulting symptoms when you accidentally eat something you shouldn't? When I have sugar, for instance, I'm weak & tired for a couple of days. I'd love to shorten that. Likewise for the brain fog my son gets after accidental glutening.

Carol

I HAVE to plug the Lame Advertisement test. . . . My test, a comprehensive panel, was 350.00. I don't know if I would have even noticed some of the things that they tested for, so I am glad that I did it instead of an elimination diet. I am not against the elimination diet, I just know that it wasn't the course for me. I hope that my experience was helpful for you! Tiff

Thanks, Tiff. Another friend of mine had the ELISA/ACT test done last year, which sounds similar, and it has helped her tremendously. They test for 300 items (including foods, pesticides, metals--bunch of stuff). They also provided a rotation diet specific to her results, and they get into pH balance and other detox recommendations. I think she spent $600 on the testing (would have been even more but her homeopath, a long-time friend, waived her fees). They also told her that if she eliminated the things she was sensitive to, she would likely be able to add them back in gradually after a year or so.

I wish insurance covered more of this type of thing. Seems like it could save them and us a lot of money in the end. However, for now I'm tracking everything I eat on a homemade database, and it's already helping me to see patterns. I want to get my allergist's opinion on the intolerance testing (she understands intolerance more than most doctors). My frugal nature might just win out, though. I think I can handle the strict elimination diet. I've been cutting things out for so long, the emotional attachment to food just isn't an issue anymore. I'm determined to feel consistently healthy, because even my informal eliminations have reminded me what that feels like. And I'm a planner at heart, so it might be fine.

Carol

I'm suspecting that food intolerances are affecting my health. I know milk is a huge allergy, but allergy testing shows not much else in terms of food. I've been gluten-free since February (to support my celiac son & satisfy my own curiosity). But I still get major fatigue, usually after eating.

Looking into food intolerance, I feel like I'm tumbling down the rabbit hole. I can't just cut everything out for the next 6 months--there won't be any foods left to eat! How do you figure this stuff out? What tests have been most helpful?

Carol

We had a bunch of friends over for a bonfire last weekend. Everybody brought food, but my son was very careful about what he ate (we even kept "clean" mustard and ketchup in the fridge for him in case the public ones got rubbed on buns). Sure enough, he got glutened anyway and the next day had pain that was about 20 on a scale of 1 to 10.

It didn't even occur to me that when people roast hot dogs, they take the hot dog off the stick by holding it in the bun. That's my best guess as to how he got glutened. Anybody else run into this?

Carol

I had the same bake sale dilemma: my kitchen is now gluten-free, and I didn't want to spend a fortune on ingredients, so I defaulted to rice krispy treats with regular rice krispies (cheaper than gluten-free). Not a very exciting contribution, but at least there would be less stuff in the air.

But if you or your family do sometimes bake with regular flour, would an air purifier help? I have one in my bedroom for dust allergies, and I've occasionally used it in the kitchen to get rid of fish odors--it works great.

Carol

Carriefaith gave me this link, its the best listing of diary ingreds I have seen:

Open Original Shared Link

I've been looking for a list like this all week!! Thanks for posting it!

Carol

(finding out I need to avoid every little bit of dairy)

I need to restock on gluten-free flours, and I buy whatever is priced best in our area. But it seems I've read about some people reacting to Bob's or Arrowhead Mills. Are some brands safer than others? I also remember some comment about buckwheat flour having cc issues.

Here's what I usually buy:

Arrowhead Mills buckwheat & amaranth flours

Bob's Red Mill brown rice flour

Ener-G potato starch and tapioca flour

Are any of these problematic? Occasionally my son gets glutened mysteriously, and we can't trace any obvious cause. Fortunately it doesn't happen very often.

Carol

I've been taking Freeda Quintabs (thanks to Rachel for the tip earlier this year). They have iron but no gluten or casein. Check them out at freedavitamins.com.

Oops--it was Jen who told me about these. Thanks again!

I've been taking Freeda Quintabs (thanks to Rachel for the tip earlier this year). They have iron but no gluten or casein. Check them out at freedavitamins.com.