Okay - this past week we have had:

Chicken Fried Steaks - rice flour mix
Mixed frozen veggies with gluten/dairy free margarine
Lettuce/Carrotts at almost every night meal
Tinkyada Pasta with Ragu sauce and canned mushrooms
Jambalaya with Hillshire Farm smoked sausage/frozen shrimp/canned tomatoes and other fresh veggies
Soft peanut brittle - homemade by another person - no gluten that we know of
junior mints
Yoplait yogurt
Lactose free milk
Carrots
Celery
Black Olives
Home made pickled beets
Roast Beef on rice bread
Raisins/nuts
An apple or two
Banana
Water/diet coke/decaf coffee with gluten free creamer

Products that she uses on a daily basis inclue Suave shampoo and conditioner (the word wheat or barley are not in the ingredients), she uses that Garnier Fructis (in the green bottle) once in awhile to, a suave body lotion, some cologne from the dollar store, no ingredients listed on it, she uses Nutura Avon face cream, Avon lipstick (we understand the all regular lipsticks are gluten free), I can't think of the foundation name - I normally don't pay attention to these things, since I don't use these things, but I am trying to figure this out.

I'm not sure what has been going on in her body, she was fine all summer, just these past two months or so that have been so rough on her, physically and emotionally.

We have eated at a steakhouse probably four or five times this past month. We eat there normally, order no seasoning on the steak. We eat there a lot, and have had no problems that we can tell. We take our own Kraft dressing for the salad and our own margarine for the potato. They probably put salt and pepper ont he steak and it is grilled - they use Season All on all the steaks that they cook, but Season All is suppoed to be gluten free. I suppose, because of the grill, some of tht seasoning may get on her steak.

Those Introlab tests are very expensive, but I think this is something we should do. I want her tested for gluten, milk/casein for sure, so I suppose I should order the most expensive one? I am hoping my flex plan can cover the cost of this.

Thanks for all your responses so far, we will get this figured out sooner or later.

Mr. BamBam

I'm really no pro at any of this or even close, as I am just starting to get a hang of this myself. But, maybe she should stay away from ALL processed foods of any kind, and candy because honestly, my system can't even handle any of that right now. It's what I call "FAKE FOODS" and when you're sick, it doesn't help, so you shouldn't have it because it could make things worse (and probably is!). Also, she may be intolerant to casein, which would be in all of the lactose free products that she is using. Casein is in ALL DAIRY products, and MOST non-dairy. Here is a website for casein free diet:

http://www.nomilk.com/

She should, starting now, and probably for a while, only eat natural whole foods. For example,

-All natural fruit-not canned, frozen or dried
-All natural veggies-not canned, frozen okay (if there is only that specific veggetable listed in the ingrediants)
-Plain Plain fish, poultry and meat.-nothing processed, nothing on it except maybe some salt and pepper. Broiled.
-Plain nuts of any kind (unless she has some kind of nut allergy, of course)
-Plain white or brown rice
-Plain potatos

Try this for at least a week, and THEN add little things in one by one. Very small amounts.

Like I said, I'm no expert but this is what has been working for me....I know it's very bland and not exciting to eat, but sometimes you gotta do what you gotta do, right?

Good luck and keep me posted!

Oh! And no eating out! I get sick EVERY SINGLE TIME I EAT OUT THESE DAYS, NO MATTER HOW CAREFUL I THINK I'M BEING! I could explain things to the chef and waiter til I'm blue in the face, and still, I get sick from CROSS CONTAMINATION. So, until you wife gets better, you should, or at least her, only eat foods bought and prepared by herself, or yourself. If you want to eat out, she can bring her food to the resturant. Let's just get this lady back to being herself, right? RIGHT!

Another, probably better and more specific for casein website:

http://web.mit.edu/kevles/www/nomilk.html#badingredients

I second everything Dani said. I had to go back to the basics also when after having a great fall, I got sick in Dec. and had trouble figuring it out. I ate only the meat, veggies, fruit, olive oil, potatoes. (and I ate well--there's a lot you can do using only those foods!) I even cut out rice and all processed foods. I'm adding things such as natural peanutbutter, and (not every day) cookies from Enjoy Life Foods. They use sorghum flour as a main ingred. I don't eat out, either. In your wife's case, I would avoid it at least until she's better. The CC risk is too high for her at this point--in my opinion. I also use shampoo, conditioner, lotion, soap from The Gluten Free Savonnerie because I react to products made in the same plant as ones with gluten. Needless to say, I seem to be very sensitive and I feel better when I do these things.

A thought on the cologne--I wouldn't use anything unless I knew what was in it.

I could most certainly be wrong, but I thought there was one variety of Ragu that had gluten? Same thing with tomatoes (like the Contadina paste with Italian spices). And you might want to stop going to that restaurant for a month to see if it makes any difference. And I also second the idea of trying to remove any foods you don't make yourself. I know it's tough, but it gives you a baseline to start against.

If she's still having pretty bad D, I would strongly suggest she cut out all the dairy. That could continue to be a problem.

my other recs--since i'm running out of ideas...

red meat in moderation
natural foods, as has been recommended
no diet beverages--they can be very upsetting to the GI system (they are to mine)
no milk products, lactose free or not, including yogurt (milk definitely makes me constipated)
no coffee? it might be worth a try--coffee and reg tea's, decaf or not, but me in A LOT of GI pain

Testing options--I opted to test from great plains labs--they billed my insurance. You can go to site or call and see if they will bills yours. You can do a full panel food intol test or gluten or what not--there are a host of tests available. http://www.greatplainslaboratory.com/

What is Bernadette's history--I can't recall. Was she def. diagnosed Celiac and if so, how. (I am forgetting)... That would be helpful to know.

Yes--The diet sodas and the coffee and tea--thanks, Jen, I forgot to mention those. Coffee and, to a lesser degree tea, are upsetting for me. I used to be able to drink tea often, but lately it makes me feel ill. (not in the way gluten would, but definately not good) The point, and reason I butted back in here, is that even if she was fine with something before, and even if its gluten-free, it could be a problem now. That's why its best to start from "scratch" with food and drink a lot of pure water.

oh, and there is always the SCD diet...worth a try. i think i've rec'd it to her before...

You're such a sweet husband, helping her figure this out.

You might want to think about trying some time off the lettuce/salad and raw veggies, and go with steamed or cooked veggies to see if there's a difference at all. There was one point in my life that if I ate just plain old iceberg lettuce I felt like I had eaten glass. Very painful. Not sure if your wife is having this type of problem or not, but just thought I'd throw the idea out. Sometimes I think that if your stomach is already irritated, it's just difficult to digest some things. Not necessarily an allergy or an autoimmune reaction, but just an overworked, tired digestive system. Red meat also gave me problems at one point. These problems stopped for me after dealing with a candida problem by first doing a candida cleanse. Now when I have candida, I take Threelac, which does a great job in controlling candida.

I definitely agree with going back to basics before you try the supplement route though. There might be something else that is giving her problems. I have a problem with anything fried in soy oil, which I didn't realize was the Wesson "vegetable oil" that I was buying. (Why don't they just call it "soy oil".) But I don't have a problem with soy milk. If I eat something fried in soy oil, I get bloated and crampy and feel like I ate rocks. It also gives me insomnia. But soy milk? No problems. Weird.

Nancy

Nancy,

What is threelac? I think I may have a problem with yeast too because I get yeast infections often. Everytime I try to go on the diet though, I mess it up by eating peanuts or peanut butter. That's like chocolate to me these days because I can't have anything else with the taste and texture. It's what I run to when I have a craving for chocolate, is what I mean.

Thanks!

Oh and I agree, you are a VERY VERY SWEET HUSBAND for doing all of this research for your wife. My fiance, although helps me with this in a million different ways, leaves that part up to me, as I'm sure most guys would do.

Okay, to answer all the questions

Bernadette is gluten free - self diagnosd. After 12 years of pain this is what we had to do to feel better. We are NOT GOING TO eat wheat to get a diagnosis. She is lactose intolerant we know that for sure. Dairy gives her diarrhea - although she can handle yoplait yogurt and lactose free milk. The casein part - not sure about that.

Second: She is battling more constipation than diarrhea right now. We just want to get regular.

JanVan: The test you ordered - does she have to eat wheat before she has the test, cause we are not going that route? We are both wheat/gluten free in our house and both feel better in many ways because of it.

I am starting to think it is the eating out.

Eating out is risky--I try and keep it to a minimum. If you want to get tested for the other food intolerances, you won't need to eat gluten. How does she know she is lactose vs. casein intolerant? She may have told me in the past--but like I said, I can't remember off the top of my head. Did she do an experiment or ?

PS-How does she know she can handle the yogurt? I ask that as a friendly challenge I can eat dairy fine in the moment...but it is not till several days later when the effects start to take hold. I only figured out dairy makes me constipated by using a food journal and staying off of it for a period of time...

She has never been formally diagnosed with anything. Milk always caused upset stomach and diarrhea - so we just quit eating that stuff. She has never been tested for anything else. How much did your tests cost through this other place? I'm sorry I have not had time to look at that web site yet. I'll be done with school in a little bit, so hope to check back then.

My experience - was the jambalaya a mix or from scratch? I went to a restaurant and fortunately I had the dining cards - was going to order the beef tips but was told that the meat came pre-marinated with teriaki sauce - it wouldn't work for the gluten-free diet at all! I was watching "modern marvels" on the history channel and found that now days beef in some processing is injected with flavor enhancers and tenderizers. Of course, no telling what's in those. And of course, even though the receipe for the candy was gluten-free, if it wasn't in a controlled invironment, cross-contamination would be a definite possibility

i GUESS WHAT i MEANT TO SAY WAS SHE DRINKS LACTOSE FREE MILK, TAKES DAIRY PILLS IF NEEDED FOR ICE CREAM - BUT SHE DOES EAT YOGURT.

Threelac is a powder that you take once a day. It's beneficial bacteria that actually eats the candida, so you don't have to do a candida cleanse.

Threelac is really amazing and does exactly what it says it does. A lot of people are put off by it or don't want to try it though because it's sold through distributors, so they think it's BS without giving it a try. Personally, I'm signed up to be a distributor because you get a discount, but I'm not the salesperson type, so I don't distribute it. I just recommend it to people who might be helped by it. You can buy it straight from the corporate website if you don't want to go through a distributor, which is where I send people. Here's the site - http://www.ghtdirect.com/products/threelac/index.html If you prefer to buy through a distributor, just put Threelac into a search engine and a ton of sites will pop up.

Oh, and the fiber listed on the ingredients list isn't wheat. I checked with them on it and it's actually fructooligosaccharides, which is made from fruits or vegetables. So, it's gluten-free.

Nancy

Does she take anything else for her stomach upset, or just the lactose pills? And are they Lactaid or a different brand? Just wanted to point out that anything she might take for stomach upset (or anything else) needs to be checked for gluten. I think they usually list the fillers/binders under "inactive ingredients". A lot of antacids and things like that aren't gluten-free. I've heard people on here mention really common ones like Tums, Rolaids, Maalox, Gas-X. Some of it is because of cross contamination during the manufacturing process, so they won't guarantee it to be gluten-free. And if she's sensitive to soy or something like that, a lot of them may have soy in them.

If she's on any prescriptions, you need to check those too. You can have your pharmacist check on that usually.

If you go to www.glutenfreedrugs.com, they have a list that explains what some of the fillers are in drugs as well.

They also, of course, have a list of gluten-free drugs, but you might want to call the manufacturers to check gluten-free status because their formula may have changed or cross contamination may be an issue at their manufacturing facility.

I checked on Junior Mints, and found out that the Tootsie Roll company is gluten free!! They don't use any gluten in the making of any of their products. Woo Hoo!

I also saw your list had some other packaged foods, like the Hillshire Farms sausage, which you might want to check the ingredients on.

One of the ingredients that's in a lot of things that can be made from wheat is "modified food starch". This can be made from other things too, so if it's in anything she's eating and doesn't say specifically what type of starch it is (such as "modified tapioca starch", rather than "food starch"), just call the company and they'll be able to tell you what it is.

I always wondered who the heck could possibly be calling all those 1-800 numbers that they have on food products. Now I know...

Nancy

Hi Mr Bambam,

Self-diagnosis is perfectly valid for me Did you say when she went gluten-free? It seems from your post maybe she just started this summer....?

I just posted about this on another thread a few days/weeks ago....my own experience was that for several months after going gluten-free I just felt better and better. Then I started to feel worse. And worse and worse, and it was really scary, and I did a food allergy test with york labs which was REALLY depressing because it showed I was basically allergic to every food I ate, but after eliminating some of them, and getting lots of help from my family (I had a 3 yr old) and quitting my job, it is now a year later and I am feeling better. Not cured, but noticeably better than I did last winter.

I don't know why this is. The same thing happened to my mother as she went off gluten. If I hadn't seen it in her, I would have thought unthinkable bad things were happening to me. Before diagnosis, I was sick for 12 years with major symptoms, so i suspect there was considerable damage done. But having seen my mom eventually get mostly better, I felt there was hope. And still do. Still, it's a long hard road for some of us.

Symtpoms one year post gluten-free for me included major anxiety, weight loss, fatigue, depression, lack of appetite, and bizarre psychotic feelings that I've since read can be caused by extreme anxiety. My body and brain were so deprived of nutrition for so long, and I think the "balance" i had achieved while consuming gluten while sick for so long was just tremendously upset by going gluten-free....everything was just seriously out of whack.

It's been 2 years gluten-free now, and just recently I started feeling like my face didn't look completely gaunt, you can no longer see each individual rib beneath my collarbone, and I have a modest degree of stamina some days.

((((hugs)))) to you and your wife. Take care of her, and take good care of yourself too, this illness can be hard on relationships too. It does get better though if you keep faith that it will.

Merika

Bambam,

I use the avon lipsticks with no ill effects. But I was going through some terrible things with the eye shadows. I wrote to Avon who told me this. "We have no idea what ingredients are in our cosmetics as we have them made by another company. " When asked if they could get the list of ingredients for foundation and eyeshadows, creams for me they replied with "it is not worth our while to request these at this time."

I used to buy a lot of avon now I will not buy any of their stuff.

Bernadette actually started some gluten free diets several years ago, but didn't understand that gluten is basiclaly in everything. She gave up bread/cereal/donuts/pie and the things that look like gluten. Not until this past year or so has she been close to 100% gluten free - JenVan gave her a challenge "to not eat anything unless you know it is gluten free." She has been doing that really well, or we think she is anyway. I thought all of the Ragu sauces were gluten free? I guess we will have to make some more phone calls.

Those of you that have that casien intolerance. What problems develop if you do eat it by mistake? Our family nurse practitioner says Bernadette should get a skin allergy test for this - I've never heard of that before either.

Nancy,

I just bought it, the threelac. How many times have you used it? How quick does it work? I have known that I've had problems with yeast for a while along with Celiac. That over the counter stuff will work for about 2 weeks and then it comes right back.

So once you take the recomended dose of this stuff, and it completely gets rids of the yeast overgrowth, how can you get it again? I really want to get rid of this problem and stick to the gluten-free diet and at least have one year where all I get is maybe the normal seasonal cold. Anyway, thanks for the recommendation, I hope it works!

"Mr. B"--

So, Bernadette also cked on her products and medicines then, even over the counter meds, teas, gum...?

Casein intolerance for me manifests in constipation when I eat any form of dairy...in the moment I can tolerate some amounts okay...but often times its not till a day or so later the ill effects begin to set in.

So I posted recently to Dani on the diff between skin allergy test and intolerance test...can't find it now. So, there is a difference between typical allergic reactions (IgE) which can be immediate reactions like hives, swelling etc. and delayed food intolerances (IgG), which is what I am talking about. I have zero IgE food allergies when tested, but when tested for IgG food intols, I have a slew of them, including the diary. A typical skin scratch test will not test you for IgG type food intolerances. Skin tests are typically not given to ck for food allergies. Go here for a summary on all this: http://www.greatplainslaboratory.com/foodallergy.html

You were asking me about the tests earlier. I did this one (IgG): http://www.gpl4u.com/ordertest/ (Scroll down and select Allergy Comprehensive IgE or IgG) Here is a price list for all the tests: http://www.greatplainslaboratory.com/testprices.html Call to see if your insurance will cover part of it. Mine did--anthem.

Hi Dani,

I do two packets a day for a month (one whole box). Then months or sometimes close to a year will go by without having problems. I can tell when I get candida problems. It's kind of like how you can tell if you get gluten. Once the candida is under control, you'll know the symptoms you have with it when they come back. And candida is actually a part of the normal bacteria that is part of a healthy digestive system. Candida is actually a dimorphic organism, meaning it has two forms. It has a beneficial form and an agressive form, which is like a fungus. (When I first read about this "dimorphic" thing I thought it was complete BS, but I found a university website that discussed it, even some stuff on PubMed, and it's totally true. gross...) It's the agressive form that causes the problems. Once the candida is brought back into balance, it goes back to it's beneficial form, and the other beneficial bacteria can start coming back again.

Some people say that you should take a "maintenance dose" of threelac of one packet a day, but I don't do that, and don't recommend it. I think that your body needs a chance to develop it's own level of balance, and if it's dependant on threelac (or anything else) to do that, it never really learns how to do it on its own.

As far as how you can get candida overgrowth again, antibiotics are a big one. It just throws things off kilter. (If you're the type of woman who always gets a yeast infection after you take antibiotics, you know what I mean.) I always have an extra box of threelac. If I have to take antibiotics for something, after my course of antibiotics is over, I just take two packets a day for a week, and it keeps things in balance. It also can become a problem after you take steroids like corticosteroids, cortisone, prednisone, etc. Also, birth control pills can throw things off. I've heard that ulcer meds like Zantac and Tagamet can cause problems as well. You can also transmit it to other people, and it really easy to transmit sexually. My husband never had any stomach problems or candida problems until he met me. Lucky guy... Candida also thrives on sugars and starches, which is why the candida diet takes those out. When you do the candida diet, you're basically depriving the candida of its food supply and it starves off. For me, when I start having candida problems, one of my first symptoms is intense sugar cravings. So with all the things that can cause your system to become unbalanced, I've found that it's easier to just have the threelac on hand just in case it starts to rear it's ugly head.

I haven't had to take threelac for about a year now. For the first couple years though I took it a few times a year.

Hope it works for you.

Nancy

That is some good advice from Jenvan.

My mom did a similar thing - she didn't know about celiac, but found she felt better not eating wheat. So she mostly avoided it, but didn't know about the rye, barley, oat thing, or that wheat was in so darn many things. Then she ate wheat again for a while, started to feel bad again, tried the low-wheat diet, which helped and eventually found out about celiac.

I tell you all that because she STILL went through the same pattern as I did (going gluten-free cold turkey from a very high wheat diet), and it took just as long to feel better then worse then better. Consider those mostly-gluten-free years as an improvement in quality of life (I'm guessing) but they don't count for long-term healing. It is as if she has been gluten-free for just a year. Slip-ups in the diet are HUGE and COSTLY in my opinion, and not worth risking for anything. Of course, that's my own opinion, because of how I know my body reacts to gluten.

It sounds like she is really down, and therefore I recommend being as drastic as possible - no foods from friends, no going out, no eating ANYTHING storebought until you've verified it's gluten-free. Clean out the whole kitchen and make sure everything that touches her food is gluten-free. I think that will all hasten her recovery. It is impossible to recover if you're accidentally getting glutened a little here or there.

Best wishes,
Merika