Marlene

Hey,

I know from reading previous posts that a number of you have had your gall bladder removed so i'm hoping someone can help me with this question.

I had my gall bladder removed in May because my specialist was so sure that was what was causing my diahrea and pain. After I had the surgery I became much worse and it was then that I discovered I am gluten/casein intolerant (through Enterolab test). I have improved a lot on the diet (it's been 4 months now) but I still have days where I get a lot of pain where my gall bladder used to be. The pain often goes through and into my back. Sometimes when I get this, I have to find a bathroom in 5 minutes or less. I don't get diahrea with it anymore -- just a real feeling of urgency and I end up having a major dump (sorry for the details but I know you guys can handle it).

Have any of you found that not having a gall bladder has complicated healing from Celiac/gluten intolerance? Could it be possible that having bile constantly dripping into my intestines is what causes this? Not only that, but having a leaky gut means that the bile is also passing through and into my blood stream, right?

For the record, some days I wish they could get my gall bladder out of the garbage, wash it off, and put it back Especially since I did not even have gall stones, my gall bladder was just not functioning properly. This is a symptom of gluten intolerance which I knew nothing about until after the fact, sigh.

Thanks for the help,

Marlene

absolutely. the hardest thing for me has been so many random flare-ups making me feel like I'm just as sick off gluten as I was when I was eating it daily. In my personal experience, the frequency of seemingly inexplicable flare-ups decreased drastically when I 1)eliminated dairy 2)began taking Colestid and 3)got some anxiety meds for the days I knew were going to be tricky. Something in that combination has made a big difference for me. Probably a bit of each.

Just wondering why you started taking Colestid? I had my gall bladder removed this past May because my specialist was sure that was my problem. This was before I knew I was gluten intolerant. Needless to say I got much worse afterwards -- my food flew right through me and was not digested AT ALL. I am doing much better on the Gluten-free Casein-free diet but I still have these days where I get random flare-ups. It usually starts with a rather pronounced pain in the area where my gall bladder used to be. Within 5 minutes I need to find a bathroom. It's not diahrea anymore but it's still pretty urgent and I pass a lot of stool It really gets me down because I can never figure out what I am eating (if anything) that causes this. I think it has something to do with no gall bladder. Do you still have your gall bladder?

Thanks,

Marlene

I find eliminating dairy and eggs harder than gluten too. I am scared to get tested for anything else because I am afraid I will end up eating carboard (unless that contains gluten too, of course ) Our culture really does include so many food related activities. I used to LOVE food and always had a healthy appetite. Probably because I was starving due to malabsorption. My parents were on a special diet for years and whenever we had them over for dinner I did all kinds of research and made them something special to eat. When we found out about my intolerances my Mom said "Well, I guess if you come over for dinner now you'll just have to bring your own food." Ouch, that hurt. After everything I went through to make a dinner that they could eat?!

I think the key is to keep working away at this until we find foods that we can make which we enjoy. Who has time for that anymore? I also think it is important to take the time to grieve over the stuff we can't have, afterall it is a loss. That might make it a little easier to move on.

And I am so thankful that we can encourage each other through this forum. Heaven knows we get little encouragement anywhere else!!

Marlene

We went to Swiss Chalet last night (I think they only have these restaurants in Canada but I'm not 100 % sure) and it was great! I already knew I could have their chicken and baked potato from a previous post by Canadian Karen, however, last night they gave me a brochure which goes through everything on their menu and lists all allergens including wheat, gluten, milk and milk products, eggs, soy, etc. It was a relief to be able to order something and know it was safe. I did not get sick either, yahoo!

Marlene

Primal Defense is not gluten-free. I didn't realize that and started taking it and had bad gluten reactions. I know that they say in theory that the grass is gluten-free, but it sure doesn't seem like that's the case in reality.

Carla,

Did you find another probiotic to take instead that gave you good results?

Thanks,

Marlene

Thanks all for the speedy response! I think I have the answer I was looking for and will definitely not be taking any more of those! And here I thought I finally had a health practicioner I could trust completely. Shucks!! I am going back to see her in a couple of weeks so I will be bringing this up with her.

Marlene

Hey all,

I went to a Naturopathic doctor a few weeks ago and she put me on L-Glutamine and Primal Defense Probiotic tablets. I didn't think to check the labels because I figured she knew what she is doing. I have had some off days ever since and kept thinking I was glutened by something. The other day I read the label on the Primal Defense and it says something about barley and oat grass. I called the company (Garden of Life) but the lady couldn't tell me if it was gluten free or not and suggested I contact my ND. I emailed her and she wrote back that "it's fine and she's never had anyone react to it before". I am still kind of leary. Has anyone else tried this product? I just emailed the company again because I really think they should be able to tell me if a product is gluten free or not! While I am waiting to hear back from them, I would appreciate if anyone who has taken this product or is familiar with it could answer my post. In the meantime, I think I will stop taking them.

Thanks a lot,

Marlene

Hi Pauliina

You make a valid point and it is something I am working on. Sometimes it's hard for me to give stuff over for other family members to do -- they don't always do it "right" meaning I have to be involved anyway so I figure it's just easier for me to do it the first time. My oldest daughter is working part-time and going to University so she doesn't have time for anything either. My husband is an absolute sweetheart but sometimes I think he just doesn't get it when I ask him to help me out more. He has taken over all the banking, paying bills etc.. and sometimes will throw in a load of wash. He does most of the outside work around the house as well. He also helps out by driving our younger 2 kids (the older 2 have licences) if they have to go somewhere. His job is extremely physical so he is pretty beat when he gets home. As far as cooking goes, he is hopeless. He used to bake quite a bit when the kids were younger, now I just buy baked goods from the store since it's so much easier.

Anyway, you have given me something to think about and I think we should sit down as a family and see what changes can be made.

I guess the bottom line is that even if we make changes at home, I still have to work full-time and deal with being in pain etc at work and that is not going to change.

Thanks to all of you for caring.

Marlene

Thanks to all of you for your concern and words of encouragement.

I work as an administrative assistant and can't do this job from home. I have to work full-time because my paycheck takes care of the mortgage and another loan. As I stated in my first email on this post, we have lived in Latin America as missionaries so we had sold our previous home, got rid of all our belongings that we did not need and moved down there, not expecting to come back here. However, things did not work out done there (long story - broke my heart) and we had to move back. This meant starting all over again from square one which is not easy to do with a family of six. About a year after we came back we went through a major family crisis and my husband was off work for 3 months because of it. So that put us even farther back.

Carla, I believe that God wants me to learn some valuable lessons through all of this. I was becoming a stronger person because of everything I have been through but I feel like my illness is the last straw and is starting to destroy me as a person. I am trying to keep trusting God through all of this.

When it comes to meals etc, the rule in our house is that I make supper and my kids clean up and do dishes. As far as grocery shopping with my husband goes, that would be a great idea and it would give us some together time. However, right now my husband is working 6 days a week and doesn't have time. Sundays used to be our family or couple time but now I find that on Sundays I am busy preparing food for myself to take for lunches etc. (I try to make a pot of something that I can put in smaller containers to take to work.) My one daughter helps out with meals from time to time but she has a lot of homework. My husband doesn't get home until supper time and he is exhausted when he gets home.

I think I am just going to have to take things one day at a time for right now and hope for a better day. It doesn't help that I am in a lot of pain today -- partly from stress and partly because I think I might have eaten something that doesn't agree with me. My boss is cracking down on sick days and even though I am on salary as opposed to getting paid by the hour, he will only allow me 4 sick days per year and then after that he docks my pay for the time off. Nice, eh?

Marlene

Hey,

I am just really feeling very down right now and need to "talk" to someone. After having been very sick for the last 4 years, I finally found out 4 months ago that my problem is gluten/casein intolerance. I have been gluten/casein free ever since but as you all know, we don't heal overnight. I have been so overwhelmed with trying to figure out what I can eat, what to cook, etc, etc, -- all the while working full-time, taking care of my family (hubbie and 4 kids between the ages of 11 and 19 -- yup, 3 teenagers) and getting things done at home. I know you are going to think I am crazy, but I still end up cooking 2 separate meals some nights although I try to combine things as much as possible.

Anyway, I got to the point where I just felt I could not keep working. I am so stressed out. I am tired of always being tired, fed up with having to deal with gastro/bathroom issues at work (even though that has improved since being on the diet). I work in a small office and share a co-ed bathroom. It's not very private and the whole office can hear if someone farts in there. I got sick about 5 months after I started working (I had been a stay-at-home Mom for 16 years before that, homeschooled my kids while we moved numerous times and also lived in Latin America as missionaries) so it's been really hard for me.

We thought we had found something that would work with only one income. It's a long story so I won't bore you with all the details. Bottom line, I found out last night that it is not going to work out. I am going to have to keep working. I am so depressed right now it's all I can do to keep from crying. I know as I get better, I will be able to handle working better. But for right now, I just want to be able to stay home and deal with this there. I never have time to really take my time when I am grocery shopping, never have time to check out recipes that don't take too long to prepare, never have time for anything anymore. Somedays I just feel like I am at the end of my rope.

I know this is becoming a very long post and probably kinda boring for you to read since you don't even know me but I just had to get this off my chest. My family is very supportive, BTW, which I am very thankful for. I just want to stay home, sigh.

Thanks for listening,

Marlene

I get the same thing. The first 2 days of my period I feel perfectly horrible -- between going to the bathroom more often (I must say that after 3 months gluten free it's less diahrea but still not the greatest) and the pain from my uterine fibroids. My period gets stronger and weaker then stronger again within the same cycle and every time it gets stronger again, I go throught the loose stool and cramping thing all over again. Needless to say, I dread the week I get my period and am actually looking forward to menopause.

Marlene

You might want to talk to a knowledgeable person in a health store or a Naturopathic doctor about which enzyme to take. There are tons of them out there. Some of them have hydrochloric acid in them which could make you nauseaus. I need a pretty strong one myself because I don't have a gall bladder (which was removed in error GGGRRRRRR ) The one I take has ox bile in it as well to compensate for my own bile problems. You might be able to find one which is more suited to your exact needs.

Marlene

Have you tried taking digestive enzymes? Gas can be caused by undigested food sitting somewhere in the intestinal tract. It just sits there and basically ferments, causing gas. This type of gas usually has a bad smell to it as well. I take digestive enzymes and they really help me. Actually since going gluten free and taking the enzymes I rarely have gas at all anymore. Before going gluten free it used to be so bad that I would call in sick at work!!

Hope you find something that works for you.

Marlene

Hey,

I went to see a Naturopathic doctor last Saturday and she was fantastic. The first health practicioner I have been to in the last 4 years who actually gave me hope -- tons of hope. Anyway, she put me on L-Glutamine because this helps to heal leaky gut. I googled it on the internet and the information is so encouraging. We can actually speed up the healing process by taking this along with a good probiotic. Isn't this exciting?! I found an informative website as well at www.healthdesigns.com/LeakyGut.html.

I had kind of assumed that I would get to the point where my health would be somewhat better but this Naturopath doctor assured me that I will get healthy and completely better by staying on the gluten/ casein free diet, taking supplements (specifically to address my health issues) and maintaining other healthy habits.

So I just wanted to share the good news about the L-Glutamine with you guys. BTW, if you do take this you should take a good probiotic with it as well.

Cheers,

Marlene (one of these days I will figure out how to do the whole signature thing and be able to provide a few more details about myself )

Thanks for the replies. I went to see a Naturopathic Doctor on Saturday and asked her the same questions. She was great!! She really knows what she is talking about it and gave me a tons of hope. Anyway, she said all the problems I am having is because of a leaky gut/intestinal damage. So, it doesn't necessarily mean that I ate something that I am reacting to. Other factors such as stress can cause my symptoms to get worse again. I am under a lot of stress (who isn't, especially when we are always trying to figure out what is going on with our health??) She suggested I look at it from the standpoint that my gut needs to heal and until it does, I will have bad days. It takes a lot of pressure off me in terms of always trying to figure out if it's something I have eaten -- especially since I can eat the same thing on 2 different occasions, one time I will get sick and the other time I won't. So as long as I am eating gluten/casein free, if I have a bad day I will chock it up to not being completely healed yet. BTW, I have been eating beans for ages and have never had a problem with them before.

Thanks again,

Marlene

Hey,

I am really discouraged. I have been doing so good but the last few days have had a lot of pain in the area under my ribs, and weird bathroom visits. Yesterday afternoon after work I went grocery shopping when suddenly I got this pain across my upper abdomen, followed by cramping, gas and a strong urge to go to the bathroom. I just kept walking kind of slowly, hoping things would pass. They did calm down to the point where I could finish my grocery shopping (forgot to get half of what I needed because I was so pre-occupied with how lousy I felt), got home and headed for the bathroom. It was not D but I did pass a lot of stool. This morning at work the same thing happened again. I don't think it has to do with the last thing I ate because yesterday it was just a handful of gluten/casein free pretzels and this morning I had a gluten/casein free English muffin with apple butter (also gluten and dairy free). Sometimes I think all this started 3 days ago when I ate some chili/stew (homemade) for lunch -- even though I checked and all ingredients were gluten free. About 2 hours later I started to get a lot of pain under my ribs and this continued all evening. The pain is very much related to bowel movements. I should also mention that I had my gall bladder removed this past May a few weeks before I figured out it was gluten intolerance. Not having a gall bladder has really complicated things for me and sometimes I wonder if the fact that bile is now constantly running into my small intestine rather than being stored in my gall bladder could be an irritating factor. I have been gluten free for about 3 1/2 months. I should also tell you that I have been eating more processed gluten/casein free food in the last few weeks since I just haven't had time to prepare my own. (Hoping to quit my job soon so I can deal with all this but that's for another thread).

Any help or suggestions I could get would be greatly appreciated!

Marlene

There have been times I had to leave my shopping cart in the middle of the grocery store and go home. It's also amazing that I haven't been in any accidents and/or pulled over by the police driving 100 mph trying to make it home. The worst time was when my husband and I went away for a romantic weekend to Niagara Falls. We ate supper up in the Skylon Tower and then afterwards were strolling along by the falls waiting to see them with the lights. Suddenly the cramping etc hit me and I found a bathroom in a gift shop. I went in and out of that bathroom about 3 times in the next 20 minutes. I thought I was done so we kept walking. Then suddenly it hit again and I said to my husband "Oh NO, I have to go again"... this was followed by "Nevermind, I just did." Yup, right there in my pants. I was mortified. I just stood there on the sidewalk while he went all the way back to the parking lot to find the car. There I was not daring to move while all these nice people walk past me and smiled courteously and I'm thinking to myself "If only you knew why I'm standing here!!" So, hubby gets car and drives right past me, noticed afterwards, had to turn around and finally I got in the car. I kind of sat on the side of my one bum cheek and that's how we drove to the hotel. I stank up our entire hotel room. How's that for romance? I asked my husband later how he managed to drive past me and he said "I didn't recognize you with those brown streaks running down your legs" For the longest time I made him swear not to tell anyone but now I see the humour in it and even end up laughing myself. Hopefully those days are over!!

Marlene

It's hard to believe there are actually people in this world who poop, wipe, and flush without nary a backwards glance I am really glad to see all the comments on this thread because it makes me realize I am more normal than I thought! I can go from logs to rabbit turds in the space of one hour. My main concern is colour because lighter (yellow) poop usually means I'm heading towards D. When I compare how things are now to what they were 3 months ago, I can't wait to see what I will be like in another 3 months. The improvement has made life bearable again. I would love to be like my husband -- he goes once in the morning and that's it, he's done for the day. Once thing I don't understand is why my poops seem to improve as the day goes on. If I have a bad day, it seems to bother me more in the morning but by late afternoon things have firmed up and look "normal". Pre-gluten free was a nightmare. Imagine having one bathroom shared by six people in the morning and one person saying every 15 minutes "I hate to bother you in there but I really need to go the bathroom NOW!!" Somedays I would have to make an additional stop at a coffee shop on my 5 minute drive to work. Anyway, thanks for making my day!! May all your poops be everything you hoped for!!

Marlene

Thanks to all for your practical suggestions. I can't eat yogurt, unfortunately, but I will try some of your other ideas. I am so thankful for this board, it's great to get feedback and know that we are not trying to make sense of everything on this diet etc by ourselves.

Marlene

Hello there,

Well, I have been gluten free for just over 3 months now. For the last couple of weeks I have been noticing a feeling like I am on the verge of a yeast infection but it never gets beyond that. Things feel a little irritated and I am noticing more discharge. I have only ever had about 3 yeast infections in my entire life. Is this common when someone goes gluten free? Any advise would be appreciated.

thank you,

Marlene

Hi there. I can totally identify with you wanting this to be Celiac. I cried when my blood test came back negative because I was so sure I had it and was sick and tired of trying to find out what was wrong with me. Turns out I am gluten/ casein intolerant but not Celiac. I can also identify with your morning scoots and the bloating under your rib cage. My specialist (before I figured out about the gluten intolerance) tested me for gall bladder disease. My gall bladder was malfunctioning so they took it out. I got much worse afterwards and even thought the feeling that a brick was about to explode under my ribs has gone, I still get pain where my gall bladder used to be. It's not as bad though and I hope and pray that as my body heals, that pain will go away. Gall bladder malfunction is a symptom of gluten intolerance. I wish I could get mine back and let it heal now that I am gluten free. The good news is that I no longer have multiple visits to the bathroom in the morning and even when I do have to go, it is now solid, the right colour, doesn't float, and doesn't reek up the house. (Sorry for the details but I am sure that anyone who has GI issues is way past getting grossed out by stuff like this ) Even if I have a "bad stomach" day, it is no where near as bad as it used to be.

Take care,

Marlene

Hi,

I am in Waterloo Ontario. I was wondering if you had the endoscopy? I had one 3 weeks ago and still haven't heard anything. Also, I was interested in trying Enterolab but wasn't sure about it since I live in Canada. What courier service did you use? And how expensive was it? Also what tests did you decide to get? Sorry for all the questions, just excited that someone from Ontario used Enterolab. What symptoms did you have?

Thanks Terch

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Hi Terch. Not sure if I am replying to this properly since I am still trying to figure out how to use these threads. Anyway, I did not have the endoscopy. I have had every test imaginable but not that one. I had the blood test which came back negative. I went gluten free anyways and noticed real improvement. That's when I decided to go through Enterolab. I got the $369 test which is US Funds. I used Fedex overnight to ship my samples back and it cost me $68. (I was not impressed with that!) As far as my symptoms goes, I was diagnosed with IBS about 18 years ago. I made some modifications to my diet which did help somewhat. About 12 years ago I became lactose intolerant (that's what I thought anyway but it turns out that it's casein which bothers me meaning I should not have dairy at all). About 3 1/2 years ago, I had a bout of diahrea that least 6 weeks. After the six weeks, things just never went back to "normal". That's when I started having test after test. Finally, this past January they tested my gall bladder which was malfunctioning (this is a symptom of gluten intolerance but Dr's don't know that). I had my gall bladder removed and became much worse. I lost even more weight and looked like a walking corpse. Someone mentioned Celiac to me and that's when I started looking into the whole gluten thing. My other symptoms have been nausea, gas, bloating, bulky smelly floating stools, loose stools, fatigue, depression, headaches, night terrors, brain fog. Some of these have cleared up completely since going gluten free and some have gotten a lot better. Hope you find the answers you are looking for. I would definitely do Enterolab. The fact that they do gene testing as well is so helpful and confirming. Take care, Marlene

I was just doing some reading on the internet and came across a very interesting site on mercury toxicity. I have a mouth full of fillings and have often wondered if and how this affects my health. The website mentions a number of symptoms which are also common among people with gluten intolerance. Actually, intolerances and sensitivities is one of the symptoms. I'm not really sure what to think of this. Gluten intolerance can be traced back to genes but maybe mercury toxicity is one of those things that can aggravate it? Maybe that is why some people are on the gluten free diet but not seeing as much improvement as they would like? Just a thought, but I would love to hear from others who might have researched this topic. I am going to make an appointment with a Naturopath doctor soon and will definitely be bringing this up with her. If anyone is interested, the symptoms for mercury toxicity can be found at www.evenbetternow.com/toxicity-symptoms.html. Let me know what you think. Marlene

I went back to see my GI specialist for the first time since getting back results from Enterolab. I showed him the test results from Enterolab and his exact words were "Well, we can't argue with that! Congratulations for digging deeper and finding some answers." At this point I didn't know whether to smack him or not. After all, isn't finding answers supposed to be his job?? He had never heard of Enterolab but seemed quite positive after I explained how they do their testing etc. He now acknowledges that I am gluten/casein intolerant and said he was not going to do any further testing. He is also going to let my GP know the results so it will be in my records. He suggested I might want to get a medic alert bracelet. I found that quite interesting.

Me again. I didn't finish my last thread, pushed enter and it posted. OOoops. Anyway, I just wanted to let my experiences because I know how difficult it can be to deal with the whole medical system. BTW, I am in Brantford, Ontario. (just in case anyone is looking for a doctor in this area). Sorry for the "split posting". Marlene

Hi there. On September 29th and 30th I am going to a conference in another city and am really worried about meals. We are all going on a bus. Friday night we have to bring along a bagged supper to eat on the bus. (Yikes!) I am not too worried about breakfast Saturday morning since we have a small fridge in our hotel and I will just have a bowl of cereal and almond milk. I will have to bring along Saturday's lunch since we will not be going back to hotel between lectures which are in a different location (no fridge, no microwave). Everyone else will be purchasing lunches from vendors. Then on our way back Saturday night we will be stopping somewhere for supper (groan!!). Can anyone please provide me with some recipes for stuff I can eat on the bus and Saturday lunch which does not need toasting (that eliminates most gluten free bread, bagels etc) or microwaving (which is what I usually do for lunch) or refrigeration. I am gluten intolerant, casein intolerant, sensitive to onions, peppers, and eggs. I have been on this diet for about 12 weeks and am definitely still in the healing stage. I would really appreciate any help I can get here so I am not eating Lara bars and carrot sticks all weekend. Thanks!!

Marlene