kbtoyssni

I also don't buy many of the specialty gluten-free substitutes. I do 99.9% of my shopping at the regular grocery store, buying on sale and in bulk when I can. I can't really remember what I used to eat, but I use potatoes, rice and corn tortillas as a base now. It takes a while to figure out how to change you diet to include mostly naturally gluten-free foods instead of trying to substitute gluten-free items for what you typically eat.

I'm not exactly sure why her GI dr. told us to put her on a low-gluten diet. When he called last week and told us her Celiac test came back negative, but he thinks she's still Gluten Sensitive I really didn't think of asking him why low-gluten. I've really been thinking about it a lot lately and I think I'm going to give him a call to find out why he doesn't want her on a gluten-free diet.

If she has gluten sensitivity or celiac she needs to be 100% gluten-free or you might as well not even bother. Celiac is an autoimmune reaction that will occur if you eat a crumb of gluten so low-gluten is doing the same thing to the body as a high-gluten diet. Testing in kids is notorious for false negatives. They just haven't have the time to do a lot of damage yet. If you suspect it's celiac, I would try to 100% gluten-free diet and see if her symptoms resolve and do a diagnosis based on dietary response. I'm assuming she has some symptoms if she was tested in the first place. You could also try testing through enterolab - you'll get a positive that way sooner than you'd get a positive blood test.

It depends. I have some friends whose food I will not eat, and because I've always been very clear that I'll bring my own food, they don't even try to cook gluten-free (which is fine with me because it's easier to just bring my own food and not have to deal with the awkwardness of trying to explain why I can't eat the food they tried to make for me). Then I have friends who are fabulous about things and google all the brands before cooking and do a great job. I eat their food. Then I have some in-between friends who do the research but are still getting the CC thing down so I go over and supervise the cooking.

Just out of curiosity, why a low gluten diet? Why not completely gluten-free?

I agree with everyone that these pills don't allow a celiac to eat gluten. I also wanted to note that they are not FDA approved so these claims do not have to have medical studies to back them up. Who knows if or what kind of studies were done to substantiate the claims.

It wouldn't surprise me if he's celiac and has negative tests. They notorious for false negatives in young kids. Why not try a 100% gluten-free diet? You probably won't see much difference with a mostly-gluten-free diet so maybe try fully committing to it.

Lactose is digested by lactase which is produced by the tips of the villi. If the villi are damaged, they won't produce lactase and you won't be able to digest dairy. That's why so many celiacs can't tolerate dairy at first. After healing, many can add it back into the diet with no problems.

I'd try to buy mostly naturally gluten-free foods. I doubt your son will care much if you buy corn tortillas instead of wheat, safe condiment brands, fruits, veggies, meat. Rice pasta is pretty good so I'd switch that to gluten-free. Mrs. Leepers tastes great and is available at Super Target. Bread and crackers are a bit more tricky. I've pretty much stopped eating sandwiches and I use corn chips as crackers.

As for the cat food, I would use gluten-free stuff. I guess I worry the cat will eat and then jump on the counter or will want to sit on your lap or something. It's one of those things that some switch to gluten-free and some don't.

I'm pretty sure there's a brand or two of cigarettes that uses gluten to glue the paper around it. Do a search - I know it's been asked before.

As for the ex - I'm sure you really appreciate the extra help, but you need to tell him to only eat gluten-free or be more careful. He's really not helping if he's continually glutening you!

For the loss of appetite try gatorade or smoothies with protein powder added. It's often easier to get liquid calories down when you have no appetite.

It seems like most people on here get worse reaction the longer they're gluten-free. But I'm the opposite. I hardly react at all anymore. Which is some ways is really nice, but it's also hard to know if I'm accidentally glutening myself.

As for the messy question, I'm super neat. I like my spaces to be clean and open, and I'm constantly taking things to Goodwill.

orange juice

a little potato salad and a dill pickle (the potato salad, dill pickle and turkey were catered)

rice crackers

southwest chicken salad.

tortilla chips

Chix-Filet

Here's what I think are suspect:

orange juice: unlikely - depends on brand

a little potato salad and a dill pickle (the potato salad, dill pickle and turkey were catered): catered is a giant red flag! Was this buffet style - if so you never know who dropped crumbs in a gluten-free dish or double dipped a spoon? Did you confirm with the caterer that the potato salad was gluten-free? And the turkey - it may not be depending on how it was prepared.

rice crackers: depends on brand - some do have CC problems

southwest chicken salad - potential for CC, was the chicken grilled on a grill with wheat products, did the chicken contain broth, was the salad made in the same bowl as previous salads, did the server pick the crutons off, did you talk to the server about safe preparation?

tortilla chips: depends on brand. Many restaurant chips are fried in the same oil as breaded products

Chix-Filet: potential for CC

In general, I think you need to be more diligent with checking each individual brand, asking your servers questions, and educating them about CC. I'd also recommend bringing some of your own food so you won't be stuck in places like airports with nothing safe to eat.

Feel better!

I wouldn't let him visit her alone if she can't keep him safe, either. This obviously isn't a one-time mistake. You can go with him to visit or grandma can come to you or you can all meet at the zoo or something. I'm sure it's hard to lay down the law like this, but you may find that insisting and enforcing that he can't visit alone may cause the seriousness of this disease to sink in and for her to become more cooperative. Although even if she does start to get it, I would still send food with him because it's really hard to know everything that contains gluten if you don't live this.

I think these colon cleanses became popular around the time when processed foods also became popular. If you eat tons of fast food and processed chemical-laden foods, the digestive tract isn't going to be working well (the whole body won't work well). The standard advise of eating well and exercising will allow your colon to do just fine on its own. [Note that this is just my opinion and I don't have any studies to back it up.]

You have to check each brand of flax seeds, peanuts and apple juice individually. Peanuts are often manufactured in the same facility as wheat products and you never know about the flavourings in apple juice. Plain apples are ok. Apples do not contain gluten in the peeling nor should the peeling process introduce gluten unless there's CC at the factory.

I've started air drying a lot of my clothes for the same reason. I live in an apartment so I don't have any control over the dryers - even the cold cycle leaves the clothes almost too hot to touch when they're done! Yes, I have to iron, but I have a place where I can always leave the iron out so it's not such a big deal anymore. Do you have kids? If so, why not assign one of them to iron? My mum and dad used to have me iron when I was growing up - they claimed it was so I could learn how, but I really think it was because they didn't want to do it!

Red Robin has a dedicated fryer (although I still ask every time I go just in case).

I don't think so. Most doctors won't diagnose unless there's a positive blood test or scope which would be negative if a person just had bulimia. A bulimic would also not respond to a gluten-free diet.

Having celiac can indirectly cause bulima, though. A good number of celiacs subconsciously know that food makes them sick, gluten is an addictive substance that can lead to binging, and gluten also affects the mind and can result in things like eating disorders and depression.

Sounds normal to me. It's common to have ups and downs while you're healing.

I don't have any studies to cite, but there was one done where they randomly tested a huge number of people, and they found that only 1 in 40 people with celiac had been diagnosed. So that's 39/40 of celiacs running around still eating gluten. And we all know the long-term consequences of a celiac eating gluten.

Silent celiac is a possibility, but I think most celiacs do have some symptoms that they don't realize until they go gluten-free. Like my eyes always itched and I used eye drops a lot. I never thought anything of it, but it went away when I went gluten-free.

Sounds like a book I read called Toxic Parents. It can help you understand how your parents function better and how to protect yourself better.

Yep, that's it! Thanks - I've been trying to remember the name for days.

I've never worried about packaged flours. I tend to buy ones that are packaged well so I don't worry about CC getting in. I do, however, worry about those open bins of flour that you serve and package yourself. That seems like too much of a gamble to me.

The reason I havent moved out yet is because my mom goes crazy every time I bring it up...I try to keep her in the best mood possible, and I know that the day that I do walk out of here, it's gonna be scary...I've put it off for 2 months because i'm not looking forward to all the drama (And I mean, its gonna be bad...Real bad)

The drama's going to be there, no matter when you move out. You can deal with it now and be safe or deal with it later. There's nothing you can do in two months to convince her this is a good idea. Honestly, your mother sounds like she's suffering from some sort of mental illness and is emotionally manipulating you. You have to cut your ties. There's always a lot of guilt going against what your mother wants, but you have to do it for you. If you don't start thinking of you and what's best for you, you will live your whole life with an unhealthy emotional tie to her. I still can't find that name of that book, but it talked about roles each family member takes and how hard it is when someone steps out of their role to finally say enough is enough. I would recommended hitting up the local library and checking out some dysfunctional family books. I think they will really help you figure out how to do what's best for you.

If your kid was too sick to walk to the car before, I'm guessing he had a lot of damage. So it could be that he's going to take a long time to heal. But five months is a long time. I would do another look at the diet to make sure he's 100% gluten-free. What about personal care products of everyone in the house, pet food, siblings getting crumbs around, a spouse accidentally double dipping in the mayo, cutting boards and wooden spoons, meds, often-CCed foods like Lay's chips, etc.

If you don't think of anything there, you might look into other food intolerances like casein (milk protein) or soy. They can often have similar symptoms as gluten. A food journal or elimination diet might help.

Now I am confused. I thought distilled white vinegar was made from wheat. I have found I don't tolerate it but can tolerate pure apple cider vinegar. Same with whiskey--I got CC'd just from kissing my boyfriend who had been drinking whiskey. I also understand that the grain alcohol used in tinctures makes herbal tinctures unwise to use.

Most whiskeys have malt added in at the end, so they're definitely not gluten-free. Vinegar - even that made from gluten grains - is generally considered safe since the gluten is removed in the distilling process. Seems that some very sensitive celiacs may react to it, though.

OP - yes CC is a huge issue. One crumb of gluten is enough to make a celiac sick which is why you can't eat a salad that's had a roll on top. As for sneaking a chip here and there - some celiacs do, usually those who don't get very sick or have noticeable symptoms. That doesn't mean you're not doing damage, though! And the occasional cheat will set you up for life long health problems.

As for your safe vs unsafe list of mayo, pickles, french fries, etc, it depends on the brand. Most Ore Ida fries are gluten-free except the seasoned ones. Most restaurant fries are cooked in the same oil as breaded products so they're a no. Heniz ketchup is ok, French's mustard, Vlasic (and Milwaukee's - they're owns by Vlasic) pickles. Kraft labels gluten in their products so if it doesn't say gluten on the label it's safe.

A positive blood test is a diagnosis! Some doctors still like to do a scope because it's long been considered the "gold standard" diagnosis even though it's not necessary unless the doc is looking for something else in addition to celiac. As for blood tests being in accurate for children - it's just that kids are more likely to get a false negative. A positive is still a positive.

It's true that your daughter needs to keeping eating gluten if you do decide to do the biopsy, but she probably needs to eat more like 4 servings a day. Since she's been gluten-free for a while, you're going to have to pump that girl full of gluten to hope to get a positive scope. Honestly, you've got a diagnosis already and you know that your daughter does better not eating gluten. I'd skip the scope, go gluten-free, and let her start healing now.

Glad you found your answer! And my first thought is 1% is still a lot of people! You doctor probably has several patients who have it if he's going by those statistics. But I agree with Ursa, the percentage is higher than 1.

I would also suggest that if her new MIL has already ignored her gluten free diet starting with the wedding rehearsal, your daughter should consider always bringing her own food to family functions. It it is very likley that her MIL will not be careful about Cross Contamination even if she prepares a special gluten free meal.

I completely agree!!! I would not trust my health to this lady if she can't even not eat pasta for one night to accomodate her soon-to-be daughter-in-law.