jabberwife

Thanks to everyone. I went through my house last weekend and removed any casein-containing items that the other family members won't eat and donated them to my sister and parents. I am feeling somewhat better - am finding that I'm less and less dependent upon laxatives to be "normal". We'll see how it goes!

I was diagnosed with casein intolerance at the same time I was diagnosed with gluten intolerance by Enterolab stool tests. So I immediately abstained from all sources of dairy (lactose, casein, whey, rennet, etc.). I then noticed I no longer had the chronic sinus congestion, frequent colds and sinus infections, but best of all I had less intense constipation (no more impacted stools).

However, I still needed magnesium supplements while I figured out the other causes of my chronic constipation. Everything that affects my intestines also affects my regularity. As I was diagnosed (by ELISA blood test) with each of my other allergies (soy, cane sugar, eggs, vanilla and nutmeg), my constipation decreased a bit. Nevertheless, I still needed to eliminate the source of intestinal infections and take lots of probiotics to resolve bacterial dysbiosis.

During the past 4 years, I've been diagnosed with (by stool tests) and treated for 5 different bacteria, 2 parasites and candida (a fungus). All of those infections increased constipation before treatment. Eliminating the gut bugs and taking high dose probiotics afterwards resolved the constipation problems.

So I now realize constipation is my body's symptom that my intestines are not well. Rather than 'treat the symptom' with laxatives, I regard constipation as a sign that I have another infection or have ingested an allergen. I also try to consume lots of fiber and liquids. However, I realize gut motility is easily affected by deficient good bacteria and/or excessive bad gut bugs. So I don't automatically assume my gut symptoms are related to food allergies.

SUE

I think that's a great way to look at it. I've simultaneously reduced a lot of my sugar and empty carb intake, increased my raw and probiotic foods consumption, and eliminated a lot of the preservatives and processed foods as an attempt to improve my gut health. And I think it's made some difference - but there's still some way to go.

With your casein intolerance, do you abstain from foods that could be cross-contaminated with casein? How about your vitamins, etc that might have trace amounts?

I have non-celiac gluten intolerance, and have been gluten-free for almost a year (June 24 is my "anniversary"!) While my health has improved (I no longer need Prilosec, as my heartburn is non-existent except when glutened, my brain fog is gone, my fatigue has decreased, swelling in feet and hands is gone, my intermittent nausea is gone), I still suffer from chronic C, and the accompanying gas and bloating. After visiting a gastroenterologist, keeping a food diary for months, and taking what seems to be a million different laxatives, all I've been told is that I have a slow colon (and a moderate rectocele). I still take magnesium citrate and occasionally, senna, to keep things moving - but even then, some days are bad. So I decided to remove dairy from my diet for 2 weeks. I seemed to get a bit better - things were moving a bit faster, and I actually had to cut back the laxatives. I wasn't "all better", but after 2 weeks, I reintroduced dairy into my diet. I enjoyed fresh, local, raw cows milk, yogurt, and cultured butter. And while I tried to ignore it, and pretend like dairy wasn't the cause, my C came back - plus some. I also have dealt with insomnia and excessive sweating, and some nausea. It's time to face the truth - I can't have dairy.

So - I have no idea how to do this! I know a lot of people with lactose intolerance can have SOME dairy, but if this is a casein intolerance, which I have a sneaking suspicion it is, then I don't know if I need to treat this with the same level of scrutiny I give gluten. I'm extremely sensitive to gluten, and so I have taken care to dedicate certain pans and cookware to gluten-free cooking, I make sure all of my cosmetics, vitamins, and pills are gluten-free, and I am very careful about processed foods and restaurants, as most that say they are gluten-free still can make me ill. Do I need to do the same with casein? Will it cause damage if I ingest casein, the same way gluten causes damage? I'm afraid of being unable to heal if I don't do what I need to do, but I don't want to unnecessarily complicate things either.

Those of you with casein intolerance, please let me know what your habits are and how closely you monitor dairy in your diet. Any other advice would help!

Thank you!

I started having random problems and I am ultra careful. My workplace changed the hand soap in the bathrooms. It has vitamin E added. Ingredient: tocopherol. Now I have to use my own hand soap. Tocopherol is in everything and if it is not indicated that it was derived from something other than wheat, don't use the product. Also, look out for soy and casein. If you a really sensitive celiac, those can give you the same reaction if not worse. I didn't use to have a problem with those items, but now I do.

OMG. I never thought about soap at work. I am going to have to check that! I check everything at home, generally, but never even considered this. Thanks!

Let's see...before I went off of gluten, I was having bad heartburn, gas, bloating, chronic constipation, brain fog, fatigue (low Vit B12), tingling in hands and feet, swelling of feet, moodiness. When I challenged with gluten after being gluten-free for 2 months, the brain fog and foot swelling hit nearly immediately. Then the stomach rumbling, gas, bloating. Then within 24 hours, severe diarrhea. Then of course, fatigue for a few days, along with chronic heartburn.

As I've healed (almost 6 months gluten-free), the only remaining symptoms are heartburn and constipation. Both of which I'm suddenly relieving with apple cider vinegar, surprisingly...but that's another story. If I accidentally am glutened now, which happens rarely and its usually a small amount (crumb or two), I get brain fog for the first day, and heartburn for a few days. Gas, bloating, and loose stools (but not for a while if it's a really small amount - I am first constipated for DAYS until I can get relief).

Not a wonderful experience - but I still consider myself lucky to not have severe reactions like I've read some others have!

I can understand about the "mild" symptoms at first leading you to believe that the "gluten" thing wasn't as "bad" as you feared. A few years ago when I first suspected gluten to be the enemy (after I too recieved a negative blood test - but my father, sister, and brother are all celiac/gluten intolerant). I went gluten-free (though not as carefully as I am now) and challenged, with little to no reaction.

Of course, several years later, I went through this test again, and this time went gluten-free for longer and challenged, and oh boy, I knew gluten was the enemy that time! (This was 4-5 months ago) Since then, I've been extremely careful. I rarely eat out and cook completely from scratch.

My husband, though supportive, has rolled his eyes in recent months when I've been nagging to keep him from cc'ing the butter, mayo, dishes, etc. My accidental glutenings had only occurred once or twice, and were so mild, I was thinking I was not that sensitive. But the other day I was careless - used the same spatula to transfer burgers onto our kids' buns for grilling a portobello mushroom for myself. THEN ate one of the other mushrooms from my son's plate (because he didn't touch it - and yum, portobello!), not even thinking about how he could have dropped crumbs all over it when eating his burger. And I was sick - not immediately, but the next day and a half were bad. That was enough to not only prove to myself how careful I need to be, but also to my husband. Working on getting my own mayo, butter, etc - just to make things easier.

Stick to your diet, and don't be afraid to mention something next time at a restaurant when they don't follow through with your requests. And don't beat yourself up on this pizza incident. Besides, for next time, you'll remember how bad that pizza made you feel. I've found Udi's sells pre-made crusts. I love to make my own, but these are great for last-minute throw-together pizzas. Also a good pita bread substitute. They sell them at our local Whole Foods - they're expensive, but worth it for an occasional pizza treat.

Good luck!

Aloe vera juice does help. I buy George's brand - tastes like water. It helps to relieve constipation and calm the stomach. Ginger tea calms the stomach too. Also, might not hurt to take additional magnesium supplements to relieve constipation. Or apple cider vinegar. I take it for heartburn, but it's helped with my chronic C too...1 teaspoon in a glass of water. You can do that up to 3 times a day if you wish. Feel better!

I too seem to get a reaction to the Pamela's mix - but only the bread mix, not the pancake mix. At first I thought it was the sorghum, because it's higher in fiber, but I've since baked a lot of things with sorghum flour with no issue. Then I re-read the ingredients today, and saw that chicory root is in the bread mix. Chicory root is used to bump up the fiber levels (among other things) in foods - maybe this is what is causing the issues. Everything else in the mix I've used individually in baking without issue (except the millet flour). I've narrowed it down to either millet flour or chicory root.

It is sad to have such a reaction too, cause this baking mix is so good! I made jalapeno cheese hamburger buns with it and they were so tasty.

Oh - one more thing. Check out gluten free goddess dot blogspot dot com. She has a TON of vegan, gluten-free, corn-free recipes that can work for just about anyone with any allergy/intolerance! She has wonderful Thanksgiving recipes on there too - I plan on making her sweet potato pie. Yum...

I made two different kinds of gluten-free stuffing for our Thanksgiving this year (I made them up to the point of baking and froze them - will defrost and bake on the big turkey day!) I already taste-tested them both. They're great. Check out my blog (address on my profile, can't put it here!) for the recipe. I baked my own "french" bread for the non-cornbread stuffing. For the cornbread stuffing, I baked cornbread, just substituting the flour with sorghum flour and a touch of xanthan gum, and proceeded as I did with the french bread stuffing. I didn't really "Toast" my bread cubes, just dried them out in the oven at 300 degrees for a while. I even made gluten-free gravy!

And you can make a gluten-free, DF pumpkin cheesecake. If you can find that Tofutti cream "cheese" I bet that'll work! Use any gluten-free boxed cookie for the crust. I've used gluten-free gingersnaps before as a crust for cheesecake and they worked wonderfully.

Good luck!

My menu (well, the gluten-free portion anyway. A few family members are bringing along gluten-y dishes too)

Brined and roasted organic pastured turkey (I always follow Alton Brown's Good Eats Turkey recipe)

Gluten-free, corn-free, sugar-free, dairy-free herbed dressing (recipe on my blog, address on my profile!)

Gluten-free, sugar-free cornbread dressing

Gluten-free gravy (recipe on my blog!)

Sour cream slow-cooker mashed potatoes (from A Year of Slow Cooking)

Cranberries (brought by my SIL)

Broccoli Cheese Rice Casserole

Mashed sweet potatoes (brought by my MIL)

Steamed veggies (brought by my MIL)

Waldorf (brought by my mother)

Gluten-free, corn-free, sugar-free, dairy-free pecan pie (The Almond Flour Cookbook)

Gluten-free sweet potato pie (Gluten-Free Goddess .com)

I can't wait! (especially for the stuffing - I made it and the gravy in advance, but of course I had to taste it - yum!)

Don't feel too bad, we've all done things like this, especially while learning. You might feel yucky and have a reaction for a few days, but know that you haven't "undone" everything, and you'll recover. And while you're recovering, be sure to cuddle up in a blanket on the couch and watch some stupid movie - it'll make you feel better!

I too have had "poop" questions, so I'm curious as to what people think about this. Mine float almost all the time and are hard and round too...but I don't know for sure if that means anything.

I'm curious if they told you what genes you do have? I've seen evidence (individuals on this forum and in articles) that those that don't possess DQ2 or DQ8 can sometimes still get celiac. I don't have these genes, and am self-diagnosed gluten intolerant, but my dad has celiac, and my brother and sister are both gluten intolerant (self-diagnosed as well - they just never went to the doctor to find out about it). While I'm the only one that has had gene testing, in my experience, it seems unlikely that we'd have so many intolerant people in our family without some genetic involvement of celiac disease here. Just my experience, for what it's worth. That, and I had low B12 levels prior to going gluten-free, in spite of a healthy diet with vitamin supplementation. That signals malabsorption, celiac disease or not.

My thoughts are - they don't definitely know how to diagnose celiac in all cases. You just have to listen to your body, and regardless of whether you're a celiac or not, you sound like you're on the right track, with a gluten-free diet, and it does sound as though you're healing, so that's great.

Yes, cheese...and sadly, it's going to be the part of dairy that I'll miss. Alas, I am dairy free starting today! Well, actually, last night. I am happy to report, however, that I prepared a wonderful chicken tikka masala using coconut milk in place of cream, and an Indian rice pudding for dessert with hemp milk and vegan butter for the ghee. Still quite lovely, and oh-so-comforting!

Thanks. I keep coming to that conclusion, I am just in denial. It's not that I'm a huge dairy eater, but I love cheese, and there is no good substitute for cheese. Sigh...

I think next week I'll start dairy-free, and go for a few weeks and see how I feel. Cross your fingers for me!

So, I've seen this question asked many times on this forum, so I hesitate to ask again, but I'm just frustrated and not exactly sure what to do next. Sorry in advance for the long, drawn-out story...

After negative celiac blood tests, a diagnosis of IBS (these happened 4 years ago), a negative Enterolab test for both gluten and lactose/casein, I decided that in spite of all of this, my worsening symptoms drove me to go gluten-free for a while, and challenge, in order to determine whether gluten was the cause of my issues. (My symptoms were brain fog, fatigue, acid reflux, chronic constipation, gas, bloating, horrid flatulence, tingling hands and feet, slight edema in the tops of my feet) After going gluten-free (this started late June 2009) many of my symptoms went away. I was less fatigued, brain fog was gone, tingling hands and feet disappeared. The digestive issues lessened. In mid-August, I challenged (had about the equivalent of 2-3 slices of bread within a 18 hour time frame), and these symptoms came racing back, and the big D arrived, worse than I'd ever experienced - enough to confirm for me that I am indeed gluten intolerant. I have been gluten-free since.

However, my digestive issues have not cleared up entirely. I still deal with chronic constipation. I am very careful about my diet, I prepare almost all of my meals entirely from scratch and eat very clean - lots of veggies, fruits, meats, and rice. When I eat out, I call the restaurant ahead of time to determine what I can eat. I've been pretty experienced at how to eat gluten-free (my dad, sister, and brother are all celiac, and I cook for them frequently) so I'm confident in my diet.

I visited a new gastroenterologist in late July, explaining to him what has occurred and what my symptoms were. He suggested several routes, but to begin with magnesium supplements, and taking probiotics and digestive enzymes to assist in my ability to digest particularly "troublesome" foods, such as beans, broccoli, etc. I take 800 mg of magnesium citrate every morning, and have for about 2 months now. However, I continue to have constipation. I usually will "go" every day, but it's always just a little bit at a time, and hard and round, and never feel as though I'm "through". (sorry to be so graphic) Many times, I'll get so bad that I have to use an enema. If I take more magnesium, all that happens is that the stool gets softer, but I still only go a bit at a time, and then I have so much tummy rumbling and gas/flatulence, and feel like I have to go all the time. I've started to take aloe vera juice, but again, if I take too much, it causes the same symptoms as the magnesium, and less, it doesn't seem to make a difference - yet. I don't see any changes from the probiotics or the digestive enzymes. If I eat broccoli, beans, or other "gassy" foods, I'm bloated up so bad for the next day and so miserable from the gas that it's just not worth it - and this seems to be even worse than when I was still eating gluten. I eat enough fiber, but heavens, if I eat any more, my symptoms just get worse! I even exercise on a daily basis and have since going gluten-free (finally felt better enough to do so!), but that doesn't make a difference.

I am not sure what to do to deal with this. Are the symptoms I'm having just because I'm healing? Do I have "leaky gut" issues, and if so, what do I do with that? Should I consider other intolerances - namely, dairy? I don't have a direct response to dairy, never have...but until I eliminated gluten from my diet, I didn't notice a direct "cause and effect" correlation either, until the end, when my acid reflux got really bad and eating bread was beginning to make me nauseus. Should I go back to the GI doc and discuss that this isn't working? His next thoughts were to put me on a lower dose of Amitiza, then if that doesn't work, a sigmoidoscopy (sp?) and/or colonoscopy. The Amitiza won't work, likely...I've been on the higher dose before, and it caused diarrhea first, and then I went right back to being constipated after a few days. (the same thing that happens with EVERY medication or laxative I could possibly take)

I'm considering going casein-free for a few weeks, and then if that doesn't help, going back to the doctor. Does anyone have any other suggestions? Am I just being impatient, and this healing will take time? Thoughts?

Thanks so much for everyone's help!

I'm about 2 1/2 months gluten-free, with the exception of my 1-day "challenge" (where I ate a small roll and a few bites of bulgur salad, only to find out that gluten was indeed the enemy!), and I've had ups and downs. Within the first few days, I was exhausted, I'm guessing from a withdrawal of gluten. Then I started to improve, and my digestive symptoms started to subside. However, lately they seem to have somewhat returned. I still fight C all the time, and it seems like a lot of things cause me gas and bloating, and I'm back to taking the digestive enzymes (to help with bloating and gas, hopefully), and I just started aloe vera juice in addition to my magnesium supplementation, in an effort to combat the C. But, thinking back (and also remembering my "challenge"), my neuro symptoms and the swelling/tingling in my feet have gone away. No more brain fog! So while I'm not 100% sure whether my lingering symptoms mean I still need to take something else out of my diet, or just be patient with the healing, I do know I am feeling better.

LOL - I was about to say...

larabars are my go-to snack, just in case I don't have time to make something from scratch, or if I'm going somewhere where I don't know where my next meal is or whether I'll be able to eat it!

Thanks.

Lisa16 - What is it about a Banana Bread Larabar that glutened you? I'm confused...is there something I should know?

I've had dreams like this...where I'll be walking through the kitchen, or at a party, etc. and mindlessly grabbing something like pizza or a cookie or something gluten-y, and mindlessly putting it in my mouth, only to then realize what I've done. (I actually in the past have been a mindless muncher, so this seems so very likely for me) It's funny how anxious we all are about this!

I wouldn't call it intense pain, but when I'm glutened, this strange swelling feeling that's highly uncomfortable happens in my feet, on the tops, near my toes. It's almost immediate, which is so weird to me. I'm still pretty new to this, and did a 2-month gluten-free diet and then challenged, and when I challenged, two things happened immediately - the food swelling thing (it tingled too) and brain fog...so bad that I couldn't speak, I was tripping on my tongue. Horrible.

I feel for all of you that have pains when being glutened! I hope the continuation of a gluten-free diet alleviates your pain soon.

Several of my girlfriends and I were planning a girl's night out, and they chose San Francisco Oven. Not a place I'd usually choose, since they focus on pizza and sandwiches, but they do have some salads. Well, I called the main number and left a message explaining that I would like to discuss ingredients in their salads, to determine whether they were safe.

The regional manager returned my call within an hour, and once I explained what the situation was, he explained that the chicken was safe, and most of the salad dressings are made in-house at the store. The ranch was fresh, as were the vinaigrettes, and he rattled off the ingredients (white vinegar, olive oil, mustard, etc). Of course, I was to leave off the croutons or crisps, but other than that, I was good to go. I ordered the Zinfandel Chicken and Feta, no crisps, and dressing on the side (just because I prefer it that way...). Delicious, and I felt fine afterward. Score one for San Francisco Oven.

Update:

So, after nearly 2 months gluten-free, I decided I would "challenge". My symptoms had not completely disappeared (I still had constipation, doc has suggested to me to take magnesium supplements for it. Still haven't gotten the right dosage down), but have improved. No more brain fog, swelling of hands and feet, tingling/numb hands, severe gas.

Well, Thursday night, I had a moderate amount of gluten. (small roll, a bite or two of bulgur salad, and a bite or two of cake.) Nearly immediately, I felt the swelling feeling in my feet. (not a lot of actual swelling, but I get this weird feeling) Brain fog (which I initially dismissed as the wine I also had...haven't been drinking), and heartburn and lots of gurgling of my stomach as I went to bed. Woke up at 4am with severe gas and big D (sorry for descriptive nature of this post), and again at 6am. Throughout the next day, suffered frequent trips to the bathroom, but not horrible D, just...frequent small amounts. At lunch, had Korean (only wheat was in the soy sauce), but decided to "challenge" again that day, just to be super-sure it was the gluten and not wine, so I ate a bite of a lemon shortbread cookie and a macaroon (which may or may not have been gluten-free). Still had nerve issues that afternoon, tingly hands, and by the time 4pm rolled around, I was nauseas, and when I got home from work I had the worst D I'd ever had, all evening. By then I knew for sure...there was no doubt.

So...at least I have a definitive answer, with or without a doctor's diagnosis. Thankfully, I recovered pretty quickly, this time. I was exhausted all weekend, but am feeling better now. Digestive system still a bit out of whack, but then again, it's always out of whack. I'll work to get it in sync with the magnesium, and if that doesn't work, look for another solution. But I do have some relief knowing that those bad symptoms returned in full force with the introduction of gluten, when they had slowly disappeared while I was on the gluten-free diet.

Having an answer gives me some sense of happiness, even if I won't enjoy breads and cakes the way others do. I am a pretty good cook in the kitchen, and have experimented some with gluten-free baking, and will continue to do so with a renewed enthusiasm!

What does make me wonder - how many people are out there that have the DQ1 genes, but actually were diagnosed as celiac (not self-diagnosed, or gluten intolerant)? My doctor seemed to believe that DQ2 and DQ8 were the only genes, but I find it hard to believe that my father is a clinically diagnosed celiac, and my brother and sister are both gluten intolerant (self-diagnosed), and so am I...and I have no DQ2 or DQ8. I would love to have my father genetically tested to further support my argument, but of course, that costs money. :-) So, tell me...are you, or anyone you know, celiac without DQ2 or DQ8?

Thanks everyone for being supportive and helpful throughout this process!

I've been gluten free for 2 months, and while I'm not 100% better, I am noticing symptoms gradually disappearing. It might not happen overnight for you. But I agree with what other posters have said...watch the CC, and log what you're eating, how you feel, what medications you take, for at least a month. It'll help you determine if there are any other factors preventing you from feeling better.

I just went through my first real gluten reaction last weekend, and that description of feeling like I'm digesting glass is a great description. For me, before the big D hit, not only did I have rumblings, but it was so weird, I would sit still, and all of a sudden, I'd feel a hard poke, almost as if someone had jabbed me in the gut on the side with a stick. I jerked and exclaimed "oh!" it surprised me so much. Weirdest thing I've ever experienced.

Aside from that, I was gluten-free for about 2 months, and didn't lose weight. I wouldn't tell people it's a weight loss diet. In fact, if you eat a lot of the gluten-free alternative baked products, they tend to be more calorie-dense than regular versions. I don't even eat those, and have added a regular exercise routine, counted calories, etc. in the past 2 months and haven't lost. Not that I'm overweight really, just trying to lose about 10 lbs...and this is the first time I haven't been able to lose it easily. So gluten-free might actually be causing me to gain weight...if it weren't for my exercise routine and watching what I eat!

Besides, calling it a "diet" and suggesting others go on it just to lose weight trivializes the seriousness of the disease. If people are having symptoms, of course suggest to them that they see a doctor and look into being tested, etc...but simply doing the diet to lose a few pounds? That's just not what it's about, IMHO.