Marlene

I take a digestive enzyme from the NOW brand. They are really good but don't take too many or they will bother your stomach. I found that out the hard way. They have helped me immensely.

When it comes to probiotics, make sure you take one that is enteric coated. That means they will last long enough to get past the stomach acid and make it to the intestines where they can do what they are supposed to. I started taking one about 3 weeks ago called Acidophilus Ultra from New Root Herbal (or something very close to that). After being on them for about a week, I went through about 7 days of detox (as Brian mentioned in an earlier post). Now, however, I am starting to get the positive results and have such amazing bowel movements, I just about want to stand there and admire them!!! Sounds gross but I'm sure anyone with Celiac/ gluten intolerance can well appreciate what I am saying

Best wishes!

Marlene

So, my 11 year old niece has been having major stomach/ bowel issues ever since she had parasites last summer. She has been extremely lethargic, has stomach pains, and is so constipated that her parents have to give her laxatives just to get her to go (which they don't like doing - obviously). Someone at my sister-in-law's work mentioned Celiac to her so she called me and we talked about the whole gluten intolerance thing.

They took my niece off gluten and within a few weeks, her symptoms improved. She was not always as strict with the diet as she could have been but they did improve, nonetheless. So they took her to a gastroenterologist who refuses to test her for Celiac. He said there is no way she can have it because (are you ready for this??) SHE HAS LONG HAIR. He told them to put her back on a regular diet. They did and within a week she was back to major constipation and stomach pains.

Anyway, I think they are going to put her back on the diet but they are the kind of parents who seem to want re-assurance from a medical professional that they are doing the right thing. That is understandable but I am just trying to encourage them to keep her on the diet since it is helping, no matter what the doctor says.

Do you think doctors will ever figure this out??

Marlene

Hi Tummytrouble,

I have been through the same thing as you... right down to having my gall bladder removed. None of the doctors I went to ever suggested gluten intolerance. I went to one Gastroenterologist after I was already on the gluten free diet for about 1 month (and noticing improvements then already) and he said since my blood work came back negative for Celiac, it had nothing to do with gluten. I asked him why the gluten free diet was helping. He responded that it's an expensive diet, he would not recommend it and he wanted to give me a prescription for drugs instead !!?? Oh yeah, he also said I had "IBS" - something doctors have been telling me for about 17 years.

So to answer your question, I do not have Celiac (according to blood work and gene testing) however, I do have gluten and casein intolerance (tested through Enterolab). I have been on the diet since last summer and am getting better all the time.

Glad to hear that you and baby are getting better! Congratulations for finding out what was wrong with you. BTW, I still really wish I had a gall bladder, don't you? My digestion really went for a loop after they took it out.

Marlene

OK, I am drooling over here. You guys who can have dairy are so lucky! Does anyone know of anything we "casein intolerants" can have to take the place of cream cheese?

Thanks!

Marlene

Good advice! I'll try chopping everything up into smaller pieces next time. Dates are pretty sticky so they're harder to chop up but probably worth the effort. I used pre-packaged "chopped" almonds but next time I think I'll try the ones that are more sliced than chopped.

Thanks for getting back to me regarding this recipe.

Marlene

Hi there,

Don't forget that it takes time to heal. I have been gluten/casein free since this past summer and I still have the exact pain as you describe -- it's off and on. And it's worse if I am under a lot of stress. I am seeing an exceptional homeopathic doctor and he said that even though I have eliminated the foods I am intolerant to (gluten and dairy) my body is still chronically ill. This is why I still have the pain and why I react to other foods and even smells. It's not that I'm intolerant/allergic to anything else, my body is just out of whack. This could very well be your problem as well. It's just going to take time. Hang in there.

Marlene

Hello all,

I made these on the weekend. They tasted good but they crumbled very easily -- when I tried placing the dough on the cookie sheet and afterwards as well. Since I can't use butter, I used Crisco. Is that the problem (although I can't see what difference that would make). Did anyone else's do this? I could hardly get the dough to stick together enough to put on the cookie sheet. I've always been so much better at cooking than at baking......

Any advise? I would like to make these again.

Thanks,

Marlene

I tried taking St. John's Wort but it did not seem to be strong enough for me. I tried Effexor as prescribed by my family doctor. I took 1/2 dose and embarked on the worst night of my life -- horrific side affects (every single one of the side affects where it says CALL YOUR DOCTOR IMMEDIATELY IF YOU EXPERIENCE THE FOLLOWING ......) So I got on the net a few days later and researched herbal remedies. I found something called Anxius. It really helped me with no side affects. I wrote the company and they said it's gluten free although I think they are a bit leary about putting it on the bottle because they might have other gluten containing products at their facility. You might want to check them out -- just google "Anxius".

Marlene

Sophiekins,

Thank you for the advice. I looked up my BMI and if I weigh 135, I am still at the low end of normal. Whew. I will definitely be keeping an eye on this. If I lose any more weight, I will get medical attention. Could an extremely low fat diet be causing this? I am hoping things will level out (in all areas) once my body heals. Since I am in my forties, I am assuming that healing could take at least another year.

Marlene

David,

I definitely hear you on the weight loss situation. I don't own a scale so I am not sure how much weight I have lost but I am thinking it's probably around 35 pounds (I have gone down 3 or 4 sizes). I am female, 5 feet 8 and I don't think I have an ounce of fat on my body. I lost some of the weight last year because I was having gall bladder problems and cut fat out of my diet. Then I went gluten free July 1 and have continued to lose weight. My gall bladder was removed so I still cannot handle any fat. I am concerned about my weight. If I stand in front of a mirror with no clothes on, I can see all my ribs, even through the skin on my back. I have a friend with Celiac and she told me that after she was on the diet for about a year, she began to gain some weight back. She is still slim but she looks great. I think we just need to heal first, after that our bodies will better absorb whatever we do eat and we should gain some weight back.

Best wishes,

Marlene

So this weekend we are having my family's annual get-together turkey dinner. I was actually looking forward to going because other than stuffing and gravy, I can eat everything that we usually have at these dinners. (I would be bringing my own dessert.) Last night my sister calls. She is in charge of what everyone has to bring this year and she decided to make it a pot-luck dinner. We will still be having turkey but instead of the usual fare, she wants everyone to bring a casserole, and salad or dessert. I told her that was too bad since that means I will probably only be able to eat turkey and whatever food I bring along. Her response? "So??" Yup, that is what she said. I just stood there on the phone, mouth hanging down to the floor in complete silence. She has a daughter who is diabetic so I really thought that of all people, she would understand about food restrictions. I realize that I am only one person in a large family but I was very hurt by her response. Potlucks are a nightmare for me. I tried explaining to her why this is but I don't know if I got through. She told me to get her a recipe and she would try to make something that I could have too. She then suggested a casserole which is smothered in cheese. I can't have dairy. I told her not to bother. I realize that these people don't live with this every day but after the last family get-together a few months ago where there was not one single thing that I could eat, I am getting really discouraged.

Am I over-reacting or would you have been hurt by her attitude as well? I don't think people who can eat anything realize how isolating it can be to always be "different" when it comes to social events that focus on food.

Maybe the best way to look at this is to realize that people are basically self-centered and I should not hope for understanding from anyone. Not even family, not even my sister who I have always been quite close to. Even though every time they have come to my house, I always made sure I had the right food/ beverages on hand for her diabetic daughter.

I am sorry this ended up being such a long post. I am just feeling very sad today.

Marlene

My dear thoughtful husband got me a Black and Decker bread maker for Christmas. I used it to make a loaf of Pamela's bread mix. I am thrilled to have bread that I don't have to toast before eating -- it makes life so much easier. However, the bread did come out quite dense and because you have to use oil with the mix, I find that it has an oily flavour.

Does anyone have any advice so that my bread will not turn out quite so dense. Also, does anyone know of any mixes/ recipes that do not call for oil? Is there something I can use instead of oil? Any help would be greatly appreciated. I want to use my bread maker to its full potential!

Thanks,

Marlene

The reason why I started this thread is because I get so discouraged when I am following the diet faithfully but still feeling sick. I think it is good to try and put things into perspective -- there are people who are going through things much worse than gluten intolerance and I remind myself of that. Imagine if we had gone to the doctor and been told we had 6 months to live? However, having said that, it can be so depressing (as many of us know!!) to live day in and day out with pain and sickness. I actually had about 1/2 hour a few weeks ago where I felt completely better. It was the weirdest thing because I have not felt that way in so long. I just hope it's a foreshadowing of better days to come.

The diet can get boring and depressing but then I think we should try to find foods that we can enjoy. Sometimes this is a matter of developing a whole new mind set. For me, the biggest drawback about this diet is that I don't have the time I need to make things from scratch so I end up eating a lot of rice and beans.

As far as God goes, I just have to keep trusting that he knows what he is doing. We can't start letting ourselves think that he is punishing us through our illness. Sometimes he uses the hard times in our lives so that we will get to know him better. (Although we don't usually realize that until the hard times are past.) If I didn't have God to hang onto through the tough times, it would be completely hopeless. He is my rock and I use the Bible to give myself hope and comfort. One of my favourite passages is the one that says "They that wait upon the Lord will renew their strenth, they shall mount up with wings as eagles, they shall run and not be weary, and they shall walk and not faint."

Does this mean that I can handle being sick all the time? No, I can't. I have days where I just want to curl up in a ball and cry until I have no tears left. I still get frustrated, angry, discouraged, and just plain old fed up. That's OK -- it's understandable. And that's what is so great about this board -- we can vent, and cry, and stomp our feet. Everyone understands.

Let's just keep on being here for each other and hopefully, we can give each other the strength and encouragement to hang in there.

Marlene

Thanks all for the responses. I am a little leery of taking medication to control the bile because from what I understand, the medicine that binds the bile also keeps your intestines from being able to absorb other medications etc. I take a number of supplements spaced throughout the day so I don't want to screw that up. I guess I am leery of medicines for the most part because of the side affects. Maybe I should just go see my family doctor and ask her about it.

As far as yeast (candida overgrowth), that is a possibility. I started taking some homeopathic drops for my digestive system which included a candida die-off. I became so sick and had constant watery diarrhea so I had to stop doing that. I do think that the probiotic I am taking is probably still causing some candida die-off which may be causing some of the intermittent diarrhea that I still have. For me, this is one of the worst symptoms. I hate diarrhea with a passion. You never know when its going to strike and it's always at the worst moment. That and the pain below my ribs. I sometimes feel like I just want to drink something cool and creamy to coat my insides. I know that sounds really bizarre but that is what I envision when I am trying to cope with the pain.

NoGluGirl, you are right about having to keep a sense of humour. You are also right about the guy who just won the lottery getting shot! And of course, he wouldn't be a relative of mine so no inheriting any money there!!

I am just hoping that next year gets better. It has been a very rough year/decade for me on so many levels. I think that's why I am having such a hard time with this. It's just been one thing after an other and I am done, worn out, and fed up. I have to keep reminding myself that someday things will be better. Just not sure when!!

Marlene

I can handle being on the gluten/casein free diet. I can't handle feeling sick anymore. My digestive system is completely haywire since having my gall bladder removed this past spring. I was diagnosed gluten/casein intolerant about 2 months later. I just want to feel better. I feel sick if I don't eat, I feel sick if I do eat. I was doing better for a couple of months but now I often have pain under my ribs -- exactly the same pain that made the specialist think my gall bladder had to come out. There is no bile there to digest my food when I need it and then when I don't, bile comes rushing into my intestines and gives me diarrhea. I had a bad morning today, got a speeding ticket, had to drop something off at my daughter's school, was driving there feeling nauseas and like I wouldn't make it to the bathroom. Went to a coffee shop to use the bathroom but the bathroom was right where everyone was standing in line and I wanted more privacy. My daughter was complaining last night about having to walk somewhere because it would take her 20 minutes. I just flipped and started crying -- I wish I could walk anywhere (even if it took me an hour) without feeling sick. I am not even looking forward to Christmas. Somedays I just wish I had never been born.

I am taking digestive enzymes, L-glutamine, probiotics (these all do help to a certain extent), am extremely vigilant about my diet and try to eat only healthy, whole foods as much as possible. I just wish I could find something to regulate the flow of bile. I know it can take a few years to heal but I am so sick and tired of being sick and tired.

I know this sounds like a lot of rambling -- sorry. I am just at the end of it and I don't know how I can keep going on. Well, I feel like I am going to start crying again but I am at work so we can't have that, now can we? I better end this note here. Thanks for letting me vent.

Marlene

Hey,

I know exactly how you feel. I have had this symptom off and on over the past few years. It felt like there was a brick right under my sternum/ribs which was going to explode. My gastro specialist felt it was my gall bladder (this was before I was diagnosed gluten intolerant) so he sent me off to the surgeon to have it removed. Big mistake. I still get that pain and now have to deal with other digestive problems because I don't have a gall bladder.

Anyway, celiac affects the duodenum area. This means it can affect your gall bladder, bile ducts, sphincter of oddi, and other components of the upper GI tract. Inflammation in any of these areas can cause this type of pain. This can be exacerbated by stress.

My own personal experience is that it doesn't necessarily mean I have been glutened. Either things are a little inflamed in that area because I am still healing or I am under a lot of stress. Hope this answer helps you.

Marlene

Hello Lisa,

Are you taking any probiotics at all? A good probiotic AND L-Glutamine help to heal the lining of your intestines quicker. It should help with the diarrhea. (Unless you are eating something which is causing the diarrhea.)

Marlene

Thanks a lot, everyone! Lots of good ideas here.

Marlene

Here's a question then. Will any symptoms I had that were always thought of as due to my gall bladder clear up? I didn't have it removed, i was told i had a sludge, but no stones were visible. I had terrible pain , but i was very very reluctant to have the surgery and gave all kinds of reasons not to. I dn't have the symptoms very much at all anymore, i'm careful about my food intake now. Will my gall bladder issues clear up now? I really hope so. this diagnosis looks better and better all the time.

From what I have researched, it is possible for the gall bladder to begin functioning better after you go gluten free. (Darn that *&%$# surgeon who took mine out!!) Even though someone has gall stones, that does not necessarily mean the gall bladder has to be taken out. I just hope that as I heal, my body will better be able to cope with not having a gall bladder. If I had to do it again, removing mine would have been the very last option. But who knows, maybe it would have become so inflamed and infected and then burst. That's not a good situation to be in either.

Marlene

Hi Steph,

Gluten intolerance/ Celiac affects the duodenum area which is where a lot of enzyme production takes place. It can also affect your pancreas, gall bladder, and bile ducts. When this happens, you will have difficulty digesting your food. (If you still have your gall bladder, do whatever it takes to keep it. I had mine out and my symptoms became much worse.) There is a hormone called CCK (not sure what that stands for) which is produced in the duodenum. This hormone tells your body when to start digesting food, sending through enzymes, and releasing bile. Celiac disease affects CCK, causing a lot of problems with indigestion. You might want to try taking a very good digestive enzyme, L-glutamine, and a probiotic. If you can stay away from things like Losec (acid inhibitors), I would. After awhile of taking those, your stomach will not produce enough acid and then you will really not be able to digest your food at all.

I am not a doctor but have learned all the above through research and my own miserable problems with indigestion, malfunctioning gall bladder, and gluten intolerance. I just can't figure out how it is that people like us can learn all of this but most doctors (including Gastro specialists) don't know anything other than "IBS".

Hope you find relief and start feeling better soon. Don't forget that an adult can take up to 2 years to heal completely.

Marlene

Yes, it is wonderful to get this type of support at work! Especially since I don't get it from my family. My own family - husband and kids are great. I'm talking about siblings and parents. My sister recently had a get-together. I was in a huge hurry and forgot to take anything gluten free with me. There was not one thing there that I could eat and she put on quite a spread - snacks, desserts, etc. On the one hand I know I should never expect anything from anyone because that way I won't be disappointed, but, come on! I thought at least my sister would think of me. Even if she would have had a fruit tray. So the rest of the family (there's 50 of us all together) sat there and ate and talked and laughed. At one point my sister said to me "Aren't you going to have anything to eat?" I just couldn't wait to get out of there and go home I've learned my lesson. I will always take food with me -- no matter what.

Marlene

Every year our company goes out for a Christmas lunch. During this past year I was diagnosed as gluten/casein intolerant. My boss has seen what I've gone through as far as being so sick for the past few years and losing a lot of weight. He often asks me how I am feeling and if the diet is helping. Anyway, this year instead of going out to a restaurant, they have decided to have the company lunch here and are going to order in from a different restaurant that has safe food (I eat at this restaurant all the time). Isn't that sooo thoughtful? It really made my day!

Marlene

I have always made traditional bread stuffing but now that I am gluten/casein free, I would like to try something different this year. I know I could probably just substitute gluten free bread but am wondering if there are other yummy options out there?

Thanks!

Marlene

Hey,

I have always been such a nervous person -- I think it's just another symptom of being gluten intolerant. Anway, after I started having episodes of D at rather "awkward moments" (before going gluten free) I have developed a real fear and nervousness about eating. When I am at home and I know I'll be there for a few hours, I am fine. However, if I have to eat and then go out right after or if I eat at someone else's home (even though it's gluten free food which I brought along myself), I end up with cramps and sitting on the can. Thankfully I don't get D hardly at all anymore but it's still rather urgent. I also have this at work which really sucks. I can eat something for supper at night at home and be fine with it, the next day I'll take the leftovers to work. When lunch time rolls around, I get really nervous about eating and of course, it hits my stomach like a brick. This is so bizarre because I know it's gluten free and I should be fine with it. I really want to get over this nervousness about eating because it makes my life miserable. Does anyone else have this? If so, how do you deal with it? I'm hoping that as time goes on and I get less and less bathroom episodes, I will be able to relax when it comes to eating. Any advise would be appreciated.

Thanks!

Marlene

Here's my list:

No more diarrhea (except when my liver dumps excess bile into my intestines since having gall bladder removed -- this is not a gluten thing although it drove me crazy because I thought it was. I do believe that as my intestines heal this will happen less and less)

Hardly ever have gas anymore

No more cramping and gurgling

Eyebrows are growing back in

Nails are growing

Hair is growing back in

Lips are turning pink again

Black circles under eyes are getting better

Better mood (most of the time)

Marlene