JenneinCA Posted February 20, 2012 Share Posted February 20, 2012 We went gluten free on January 2 to try to help my ds11 M. He didn't gain weight appropriately and his doctor did blood work that showed he likely had celiac disease. Over the month M didn't notice any difference at all. Over the same month ds7 P started having problems getting to the potty on time. Not everyday or every meal, just sometimes. And by sometimes I mean 5 or so times a week. Unignoreable but hard to pinpoint. I didn't food journal his food because he wasn't my target M was. His issues were massively affecting not only his quality of life but everyone else's lives too. After five weeks of strictly doing gluten free, we did a gluten trial. M had no significant issues. He does say that he is more tired and feels ickier. He wants to go back to gluten free. But P's sudden diarrhea went away as quickly as it started. He doesn't mind the gluten free food, but he really really doesn't want to have potty accidents anymore. For P's sake I really need to not do gluten free. So any ideas of what to do? One kid needs a certain diet and another need to be NOT on the same diet. EEK! And due to the likely celiac issue, cross contamination is a real problem. Just doing separate food isn't possible. (or is it?!?) I don't have any idea of what is causing P's issue with the gluten free diet. P absolutely hates beans and nuts of any kind. We thought he was allergic to peanuts for years because of his intense aversion to them. But there was no peanuts in anything that we ate. I am going to go crazy if I have to choose one child over another one. Wah! Quote Link to comment Share on other sites More sharing options...
abbeyej Posted February 20, 2012 Share Posted February 20, 2012 When you say "gluten free food"... Were you buying anything new or increasing the quantity of any particular food that the family was eating in your effort to substitute for gluten? It *sounds* to me a lot more like the dosage for some other food (rice, corn, soy, almonds or other nuts, garbanzo beans, eggs, are all common allergens that might increase quite a lot while trying to eliminate gluten -- especially if you're buying substitutes for typical gluten-containing foods) has increased and is causing an allergic reaction than that he's having problems because of the *absence* of gluten. Quote Link to comment Share on other sites More sharing options...
juelle Posted February 20, 2012 Share Posted February 20, 2012 Replacements starches were my first thought, too. Often there's lots of bean flour or corn starch, very processed, which could cause the urgency issues you describe. Ask me how I know:tongue_smilie: It may be that your 7yo lost his regular source of fiber. Psyllium is a good replacement. You can't be 'allergic to gluten-free', so something about what he DID eat was a problem. Hope you can work it out. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted February 20, 2012 Share Posted February 20, 2012 I have not heard of the blood test having false positives. I have heard of the blood test having false negatives. If your son had the blood screen and tested positive for celiac he most likely has it and he really must have a gluten free diet. If you have been doing the gluten free diet by filling in your diet with a lot of prepackaged gf stuff, I could see that causing some problems too. Try following a gf diet without buying any gf substitutes for a while. That means you will have to do some cooking. Instead of pasta, serve brown rice or quinoa. Make sure you've got lots of vegetables (fresh or frozen). You won't be eating sandwiches for lunch, have the previous dinner's leftovers. Yogurt or eggs are good breakfast proteins. You could also make hot cereal with quinoa or corn meal. If you are still having problems you may need to do a rotation diet to find the culprit. Quote Link to comment Share on other sites More sharing options...
JenneinCA Posted February 20, 2012 Author Share Posted February 20, 2012 I totally agree that P is having a problem with something in the items I am buying as gluten free substitutes. I just don't know how to figure out which ingredient it is that he is having issues with. Top suspects to me would be corn or bean flour. We increased both significantly. The corn is in all the pasta we are now eating and bean flour in the baked goods (like brownies or cookies). I suppose it could be rice too. So should I go to single ingredient items and go from there? I can easily do eggs for breakfast and meat, vegetables, and rice/potatoes for dinner. I suppose lunch could be more of either breakfast or dinner. The major problem with this idea is my husband. He wants more variety in his meals than this menu would allow. For that matter so does ds7 and dd13. I don't care very much and ds11 would do anything to not feel icky, but he wants to not be so different and have separate food. Sigh. Quote Link to comment Share on other sites More sharing options...
Momtoamayalilal2 Posted February 20, 2012 Share Posted February 20, 2012 I actually had a similar issue when I went GF on Jan 2nd as well! The first week I was MISERABLE until i just cut all grains out. I am back to eating Gluten again, but a lot of the issues I was having before I went GF are back and I am just not sure what is bothering me anymore :glare: Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted February 21, 2012 Share Posted February 21, 2012 When we first went gf our meals lacked variety too. It too a while to get the hang of it. It took a while to get the hang or and isolate other allergy issues too. It was worth it. My dd is a few inches taller than anyone thought she would be and she's healthy. We also took care of some other food sensitivities that were throwing her brother out of whack. Once you determine all the sensitivities, you can start figuring out how to add variety within your restrictions. Right now, the spices of a Pakistani beef dish cooked in the slow cooker are wafting through my house. You will get to the point of variety, but your dh needs to be patient. Dietary sensitivities can take a few months to work out and learning to cook again builds up over time. Quote Link to comment Share on other sites More sharing options...
melissel Posted February 21, 2012 Share Posted February 21, 2012 I totally agree that P is having a problem with something in the items I am buying as gluten free substitutes. I just don't know how to figure out which ingredient it is that he is having issues with. Top suspects to me would be corn or bean flour. We increased both significantly. The corn is in all the pasta we are now eating and bean flour in the baked goods (like brownies or cookies). I suppose it could be rice too. So should I go to single ingredient items and go from there? I can easily do eggs for breakfast and meat, vegetables, and rice/potatoes for dinner. I suppose lunch could be more of either breakfast or dinner. The major problem with this idea is my husband. He wants more variety in his meals than this menu would allow. For that matter so does ds7 and dd13. I don't care very much and ds11 would do anything to not feel icky, but he wants to not be so different and have separate food. Sigh. Did you by any chance also increase the dairy in your diet somehow? Outside of that, I'd go back to GF for everyone, but I would cut out corn altogether and see what happens to your DS7. Can you find another kind of pasta? I prefer the corn/quinoa kind, but the rice kind is tolerable if you're careful not to overcook it. Tinkyada has a good reputation. Do you have to worry about cross-contamination, do you think? I have a strong sensitivity to gluten, but I don't need to worry about cross contamination. If you don't, you could maybe make your normal GF meals for the whole family, but make one ingredient that would normally contain gluten for your DS7. For example, you could make chicken pot pie filling over potatoes for everyone, but DS7 gets a piece of wheat bread on the side. That's a tough bind, with so many people to please. I hope you figure out what's going on! Quote Link to comment Share on other sites More sharing options...
jplain Posted February 21, 2012 Share Posted February 21, 2012 Probable celiac disease trumps diarrhea of unknown etiology. I agree with others that you may have inadvertently increased something that your younger son can't tolerate. Alternatively, perhaps wheat normally has a constipating effect on him. This probably isn't a good thing. Off the top of my head, here are a couple possible explanations for what you've observed. Possibility 1: When he consumes wheat, he seems to have normal GI tract function. But when you remove wheat, you unmask a previously unrecognized problem. Could be a food sensitivity, could be an intestinal problem...there are lots of possibilities. Possibility 2: He's on his way to developing celiac disease too, and the constipating effect of gluten is one of his symptoms. The diarrhea could be another symptom, indicating that he already has significant intestinal damage. Either way, keeping your younger son on wheat is not a solution. I'd keep him off gluten, serve a naturally GF diet (no GF subs), and try a probiotic for a few days. The probiotic might help firm up his stools if he's recovering from a mild intestinal bug. I like Culturelle because it is easy to find over the counter at drugstores. After that I'd start looking at the usual suspects: dairy, soy, nuts, any weird flours in the GF foods you bought, etc. Good luck! Quote Link to comment Share on other sites More sharing options...
abbeyej Posted February 21, 2012 Share Posted February 21, 2012 ...So should I go to single ingredient items and go from there? I can easily do eggs for breakfast and meat, vegetables, and rice/potatoes for dinner. I suppose lunch could be more of either breakfast or dinner. .... I would try it. Tell the rest of the family to deal with it. ;) They can survive for three weeks like this. Skip all of the pre-packaged "gluten free" foods. I strongly suspect from what you said that it's the bean flours. So that's what I'd work hardest to avoid along with gluten for a few days. Breakfast can be eggs (boiled, scrambled, baked in a quiche with thinly sliced potatoes instead of crust, over easy), meat, veggies (we often eat sausage scrambled with kale for breakfast), cheese, yogurt, smoothies, parfaits (yogurt, fruit, nuts and seeds layered in a glass)... Lunch and dinner can be potatoes, vegetables, soups, meat, stews... Mashed potatoes, sauteed spinach, roast chicken; chili and homemade cornbread (I can give you a gluten free recipe that just uses cornmeal if you need it); baked potatoes with broccoli and cheese (and salsa for those that like it); stir fry with meat of your choice over rice; pork chops, sauteed cabbage, roast potatoes; salmon, sweet potato, asparagus; steak, wild rice, roast brussels sprouts; chicken enchiladas... I wouldn't worry about taking out everything your younger one *might* be reacting to at this point. Clearly he was doing okay until you brought in the processed gluten-free foods, so even if he has a mild intolerance to corn or beans or something, he can probably handle it in typical doses. And obviously you've got a *ton* to worry about already. So just see if you can serve foods that are *naturally* gluten-free and come up with enough options for the family for *three*weeks*. See how the little one's digestive tract does. I *suspect* he'll be fine. Then you could re-introduce a gluten-free bread or something like that, see how it goes for a few days, and judge from there how to proceed. Quote Link to comment Share on other sites More sharing options...
melissel Posted February 21, 2012 Share Posted February 21, 2012 You will get to the point of variety, but your dh needs to be patient. Dietary sensitivities can take a few months to work out and learning to cook again builds up over time. And this too. I've learned a LOT over the past two years. Quote Link to comment Share on other sites More sharing options...
JenneinCA Posted February 21, 2012 Author Share Posted February 21, 2012 Thank you for the help. I am not at all surprised at what you all said. I was hoping that it could be something else though. We will finish this week's food I already have in the house and work out a menu for next week. Single ingredient dinners here we come. If anyone has more input I will be grateful for any help at all. Quote Link to comment Share on other sites More sharing options...
AK_Mom4 Posted February 21, 2012 Share Posted February 21, 2012 Single ingredient dinners here we come. Remember that you don't have to have eat one thing for a meal - just eggs or just veggies. Think of it more as a "single ingredient dish" approach. Each dish is made up of just one ingredient, but there is plenty of variety on the table to make everyone happy. A typical dinner might be: Hamburger patties, brown rice, salad, and steamed green beans. Baked Chicken, mashed potatos with butter, steamed broccoli, carrot sticks. Hang in there! I know it's tough, but if you can avoid the packaged gluten-free items like pasta and breads for a few weeks you should be able to get both kids feeling better. Then add just one packaged item at a time and see how it affects them. :grouphug: Quote Link to comment Share on other sites More sharing options...
ssavings Posted February 21, 2012 Share Posted February 21, 2012 DS4 has multiple food allergies, so we eliminated a lot at once. It's very difficult, but once you get the hang of it, it gets easier. Try to keep "easy" staples on-hand. We always have yogurt (we use coconut milk yogurt), gluten free oats, homemade granola cereal (easy and made w gf oats, so safe), lots of fresh fruits, and other things I know everyone will love. We have gf granola cereal, parfaits made w yogurt, fruit, and granola, gf oatmeal w maple syrup, breakfast potatoes and sausage, etc. for breakfast! All very simple ingredients, and the "same" ingredients, but used in different ways. Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted February 21, 2012 Share Posted February 21, 2012 (edited) My Dh and I don't stick to the kids' allergy diets. One was off all foods until about age 5, so we definitely weren't doing that! When DS went gluten free as a trial recently, we didn't take the other kids off gluten just because of the $. So, yes, cooking separate meals and avoiding cross contamination is possible. You just have to run your shop like the cleanest commercial kitchen you can imagine. ;) It helps if you buy separate utensils, appliances, etc. that have distinct appearances and label items for the person for whom they are used. At the height of DS' allergies, I had separate appliances, separate shelves and separate utensils. But- what you do depends on the compliance of the other people in the household and the child's sensitivity. Some people can remember not to double dip their knife in the margarine tub- some can't. :glare: Also, you can often take the base foods that you start with for the meal and add to them for the "adults." I may serve the kids a safe meatloaf, but add melted cheese or more spices for DH and I. I can make a basic chili safe for everyone and we can each add the toppings that are safe for us. If I cook a roast beef, it may be plain roast beef for the kids and I may make a soup or something else for DH with the meat. We use Tinkyada rice based pasta when we are doing gluten free pasta. DH and I would usually keep our topping separate and serve it over regular pasta. Edited February 21, 2012 by MomatHWTK Quote Link to comment Share on other sites More sharing options...
Mommee & Baba Posted February 21, 2012 Share Posted February 21, 2012 If your son has celiacs the cross contamination can be just as bad as him eating a slice of regular flour bread. I can't even go near the bakery in stores. I will go into immediate flare mode. So even though you might not know you are being affected by something, you could be. Shockingly alot of people have a gluten intolerance and don't even know it because it's something so small. Celiacs is scary. It can end in death. So it's not something I'd even suggest on NOT worrying about cross contamination on. For those that can do this and have success that's wonderful! I attended our church during a morning that the staff provided everyone with donuts and bagels..the minute I walked into the hall and got about 10 feet from the food I immediate began to feel the pain rush and I was unable to move without leaning onto my dh. I agree that it's def. a tough spot to be in! When we went gluten free in December I was 1000% better. DD6.5 was 90% better within a few weeks. However something got her flared back up! We found out it's not just gluten, it's also dairy. I'm a small train wreck right now. So now we have to transition to dairy free in the home too. Now I'm praying this is it! I can't imagine cutting back even more..the cost is already choking me to pieces! :grouphug:I'm sorry!! It's such an emotional rollercoaster. Just when I thought we were getting it figured out with me and my illness, my dd6.5 is still struggling and we have to cut even more out. And I'm not allowing ANY cross contamination for her dairy either so that means we all go dairy free too. When it comes to certain food intolerances I take them as serious as I would anything that affects your health and well being. Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted February 21, 2012 Share Posted February 21, 2012 We went gluten free at the same time, and I have since backed off and am eating some gluten. I started feeling really bad and I'm pretty sure it was all of the corn, and possibly the rice as well. I've been trying to limit the corn around here for years because my ad/hd kids have issues w/ it. Rudi's sandwich bread I believe doesn't have bean, and don't think it has corn, so that may be an option for your younger ds. I think if you are careful, you can have some gluten in the house. I do agree that if it becomes a problem, it trumps everything else. Quote Link to comment Share on other sites More sharing options...
Splash Posted February 21, 2012 Share Posted February 21, 2012 It is hard, we went gluten free at the same time. My dd has food allergies to wheat, eggs, nuts, peanuts, corn, and we're checking for celiac. She has also been allergic to rice, dairy, msg, red pepper, paprika, and oranges. So we have to watch that we don't over do those foods as well. It can be a challenge to feed her at times. The rest of us do not avoid all these foods though I try to limit them in our house so I don't cross contaminate. We don't really use any gluten free products as we've found they generally have one of her other problem foods, plus most she has tried don't taste very good according to her. We just do without. Good luck, Kimberly Quote Link to comment Share on other sites More sharing options...
HiddenJewel Posted February 21, 2012 Share Posted February 21, 2012 (edited) nm Edited February 21, 2012 by HiddenJewel Quote Link to comment Share on other sites More sharing options...
JenneinCA Posted February 21, 2012 Author Share Posted February 21, 2012 Thank you for everything. I didn't understand how hard this could be especially since when ds11 had the positive blood test, his doctor was not terribly concerned. The doctor said it was only borderline positive so we didn't even need to do the gluten free diet. I am trying to make sense of all of this. I will figure out how to make food for ds11 and ds7 without causing either one of them harm. And hopefully still make food that dd13 and dh and I will eat. That is going to be tricky. Somehow we will figure it out. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted February 21, 2012 Share Posted February 21, 2012 If his brother is celiac he's safer gluten free anyway I think. He could well carry a gene and there is no need to "trip it" if it hasn't already been activated. A lot (almost all) gluten free flours and prepared products have nut contamination and I'm sure bean is frequent too. We have to purchase gluten free grain or flour from dedicated facilities--ie all they make is teff or they run all allergy free lines or etc. The fastest way to pinpoint if there is an issue is to put him on a rotation diet. If he has stool issues every fourth day and the fourth day is corn you'll know it's your likely suspect. We teased things out with my son that way. It won't work if all your grains and etc. are cross contaminated with nuts/corn/beans or etc. :grouphug: It's hard now but once you get things figured out you'll all be healthier for it. :grouphug: Quote Link to comment Share on other sites More sharing options...
gracesteacher Posted February 21, 2012 Share Posted February 21, 2012 two wonderful blogs that help us transition our family (my daughter has the allergies but we do her diet as a family) is Adventures of a glutten free mom. SHe is doing a series right now on the new glutten free and what to do and menu planning ect... Gluttenfree easily is another one that I love. both are also on facebook if you are there Quote Link to comment Share on other sites More sharing options...
Joules Posted February 21, 2012 Share Posted February 21, 2012 If you are buying or making any GF bread products or using flour mixes, check for guar gum or xanthan gum. These are great for replacing gluten and making the baked goods stick together. BUT they cause diarrhea in some people. It may be as simple as just avoiding those. Quote Link to comment Share on other sites More sharing options...
Margaret in GA Posted February 21, 2012 Share Posted February 21, 2012 If you are buying or making any GF bread products or using flour mixes, check for guar gum or xanthan gum. These are great for replacing gluten and making the baked goods stick together. BUT they cause diarrhea in some people. It may be as simple as just avoiding those. :iagree: These give lots of people major problems. Also, I would stay away from oats until you have things under control. I cannot tolerate GF oats at all and it's not uncommon among those of us intolerant to gluten. I do not know why, but I am becoming (like Abbey) more and more convinced that all grains are a problem, not just those with gluten. Also, I want to add that once you remove gluten from your diet, you have to be really careful about it. Your body becomes much more sensitive. So, watch that cross contamination! Good luck to you--It's not easy, but it's so important to get this right! Margaret Quote Link to comment Share on other sites More sharing options...
gracesteacher Posted February 21, 2012 Share Posted February 21, 2012 and gluten is in more than just food. It is in shampoo lotions lots of things Quote Link to comment Share on other sites More sharing options...
jjins Posted February 21, 2012 Share Posted February 21, 2012 If you are buying or making any GF bread products or using flour mixes, check for guar gum or xanthan gum. These are great for replacing gluten and making the baked goods stick together. BUT they cause diarrhea in some people. It may be as simple as just avoiding those. :iagree: DH and I noticed that our oldest child was allergic to milk at age two. He already had very little milk in his diet, but when he did it was CLEARLY an issue. So, we had him dairy free for 7 years before our other child showed needing to be off gluten. Clearly, Gluten Free diet was needed. We also prepared meals that were dairy free. During this time MAMA got sick with some meals, but felt better with with most. My mom reminded my that I have been diagnosed with an allergy to Xanthan Gum... took that out of MY diet (DD still eats some treats that are GF and have xanthan gum in them), now I am fine with all our diet changes. BTW, we also do not have ANY tree nuts in our meals! Also, I agree that there is a chance your 7 yr old may be needing to be GF and while healing is showing huge sensitivity to other products. DD appeared to also have a dairy allergy (with different response than DS) during the first 2-3 months of GF. GI DR said to keep her off dairy for a bit longer, then reintroduce it. She now can have regular cow milk while we are out, but I still do not buy it for at home. This stuff is crazy. Quote Link to comment Share on other sites More sharing options...
LuvingLife Posted February 21, 2012 Share Posted February 21, 2012 I am not sure if this will help, but I found this awesome website you might want to check out. http://glutenfreegoddess.blogspot.com/p/how-to-go-g-free.html Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted February 21, 2012 Share Posted February 21, 2012 If you are buying or making any GF bread products or using flour mixes, check for guar gum or xanthan gum. These are great for replacing gluten and making the baked goods stick together. BUT they cause diarrhea in some people. It may be as simple as just avoiding those. Guar gum gives everyone in my family diarrhea. Quote Link to comment Share on other sites More sharing options...
PiCO Posted February 21, 2012 Share Posted February 21, 2012 For recipes, try googling Paleo recipes. People who follow a paleo diet don't eat grains, so you should be good there. I found paleo when I went very low-carb. I love it, because I can just add in fruit for my kids and they are good to go. Quote Link to comment Share on other sites More sharing options...
Lisa in the UP of MI Posted February 21, 2012 Share Posted February 21, 2012 Thank you for everything. I didn't understand how hard this could be especially since when ds11 had the positive blood test, his doctor was not terribly concerned. The doctor said it was only borderline positive so we didn't even need to do the gluten free diet. I am trying to make sense of all of this. I will figure out how to make food for ds11 and ds7 without causing either one of them harm. And hopefully still make food that dd13 and dh and I will eat. That is going to be tricky. Somehow we will figure it out. DH had a borderline test result for gluten sensitivity, too. It was actually still in the normal range, but very close to the cut-off line. The doctor listed it as normal, but since some of his family members also have problems he decided to try a gluten-free diet. Other than a one-week trial he's been gluten-free ever since. We don't buy any packaged gluten-free foods, other than Chex cereal and rice cakes. I just make everything from scratch, which is what I already did. He's been on the diet for almost 3 months now and it is getting a lot easier for me. At first I aimed for serving gluten-free meals 4-5 nights a week. Now almost every night is gluten-free. If I serve a meal with gluten, dh either eats leftovers or nachos. Our diet is also limited somewhat by the youngest two children, who are sensitive to dairy. They can tolerate small amounts, especially butter and hard cheeses. No milk (except in baked goods), yogurt, or condensed milk. My 4yo has the same problem getting to the bathroom when she has too much dairy. We found the sensitivity when she was potty training and went from doing very well to having lots of accidents. I have been using almond milk as a replacement for milk or cream in most recipes, though still often use some or all cow's milk in baked goods. Anyway, our diet is not quite as varied as it used to be, but we are still able to eat lots of different foods. I have a few chicken dishes (including chicken cordon bleu using crushed Chex as breading), several beef dishes, lots of soups, salads, egg bakes, and quiche (with a rice crust, yum!). I've also made a few gluten-free baked goods, including muffins, biscuits, and cookies (the cookbook I have does not use bean flour, which dh does not like). Another thing to watch out for is that so many things have gluten in them, even when they are not bready. After two months on the diet we finally found a gluten-free chicken broth to use, which has been very helpful in making soups. Quote Link to comment Share on other sites More sharing options...
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