Hard Time Dealing

[bellababy]

I've beel gluten free for a couple months now. I've been sick for as long as I can remember. Two years ago I was diagnosed with Chron's disease. The dr told me there's pretty much nothing they can do, I'll just have to live with it. Most of the time I was in so much pain I felt like I was dying. At work I would double over and cry while my coworkers just looked on, not knowing what to do. I would throw up everything I ate, even water. I thought all of this was due to the Chron's disease. Finally my wonderful friend suggested I try a gluten free diet. That morning I went home and threw out everything in my kitchen that contained gluten. With in a couple days I was feeling better. The awful wanting to die pain was gone. I've had a hard time finding foods that are gluten free. I shop at Raley's, and while they do have a gluten free section, it's very very limited. With in the last month I have begun vomiting again. I'm very careful with what I eat, so I don't understand this. I've lost about 20 pounds (which I don't mind), but I feel like I've fallen into a dark hole and there's no light and no way to get out. Am I destined to live the rest of my life like this? Eat strawberries, throw them up. Eat gluten free cereal, throw it up. My gums are starting to become effected from all the acid. I'm so frustrated. I feel like I constantly want to cry. No one at work understands. Unless you've suffered, you have no idea. No idea. I am a police dispatcher and have to leave the room about 5 times an hour to go get sick. That doesn't work with this job, your partners get tired of it. I've never felt this sad before. I just want to lay in bed all day. I can't go on vacation because I have to plan around bathrooms, and we all know how that is. Sometimes I don't even make it to the bathroom. So much for a love life. How am I supposed to explain that to someone I'm dating? So I live at home with my cat. I'm 30 years old and have no social life all because of this stupid disease.

Am I the only one that feels like life is over? Seriously...I get out of bed, go to work, come home...all the while barfing and having awful diarreah. Can anyone offer advice? Either emotional or medical? I am so tired of this.

I need to hear that I'm not alone in this awful suffering.

[YoloGx]

I've beel gluten free for a couple months now. I've been sick for as long as I can remember. Two years ago I was diagnosed with Chron's disease. The dr told me there's pretty much nothing they can do, I'll just have to live with it. Most of the time I was in so much pain I felt like I was dying. At work I would double over and cry while my coworkers just looked on, not knowing what to do. I would throw up everything I ate, even water. I thought all of this was due to the Chron's disease. Finally my wonderful friend suggested I try a gluten free diet. That morning I went home and threw out everything in my kitchen that contained gluten. With in a couple days I was feeling better. The awful wanting to die pain was gone. I've had a hard time finding foods that are gluten free. I shop at Raley's, and while they do have a gluten free section, it's very very limited. With in the last month I have begun vomiting again. I'm very careful with what I eat, so I don't understand this. I've lost about 20 pounds (which I don't mind), but I feel like I've fallen into a dark hole and there's no light and no way to get out. Am I destined to live the rest of my life like this? Eat strawberries, throw them up. Eat gluten free cereal, throw it up. My gums are starting to become effected from all the acid. I'm so frustrated. I feel like I constantly want to cry. No one at work understands. Unless you've suffered, you have no idea. No idea. I am a police dispatcher and have to leave the room about 5 times an hour to go get sick. That doesn't work with this job, your partners get tired of it. I've never felt this sad before. I just want to lay in bed all day. I can't go on vacation because I have to plan around bathrooms, and we all know how that is. Sometimes I don't even make it to the bathroom. So much for a love life. How am I supposed to explain that to someone I'm dating? So I live at home with my cat. I'm 30 years old and have no social life all because of this stupid disease.

Am I the only one that feels like life is over? Seriously...I get out of bed, go to work, come home...all the while barfing and having awful diarreah. Can anyone offer advice? Either emotional or medical? I am so tired of this.

I need to hear that I'm not alone in this awful suffering.

Hi Bellaby,

All I can say is hang in there. It sounds like you have been very ill and are still really going through it. However as heartbreaking as that is there are things you can do to make life more possible.

First off for now I suggest you avoid fresh fruit if its causing you a problem. For some of us our systems get so raw that you have to have cooked fruit if you can tolerate fruit at all (I am one of those too--and strawberries is actually a common allergen--ever watch the old I Love Lucy re-runs?). Eventually your intestines will heal and you will be less sensitive to this and other foods like perhaps milk, eggs, nuts -- whatever you might be sensitized to since celiac often causes a leaky gut kind of situation which in turn makes your body react to the undigested proteins that pass through your damaged intestinal wall like they are foreign invaders since the villi are scarred and thus aren't doing their job.

Second--for now avoid all grains for the time being. Just eat root vegetables and squash for starch. Focus on eating lots of for now cooked vegetables and meat. No beans or nuts either for now. Let your body heal. Give it time. Soon you can have sprouted sunflower seeds and pumpkin seeds probably (just soak overnight is enough to remove the growth inhibitors that makes them harder to digest--all nuts and seeds have this by the way). Check it out. But not yet.

Third--there are a couple of herbs that heal and soothe the lining of the gut--namely marshmallow root and slippery elm. They really are very effective. You can use the caps for ease or make up a slurry with the powder and cook up the slippery elm into a porridge like consistency if you want. Later on after you are over the D, you might also want to try pao de arco caps too. This last will help normalize the gut including normalizing peristalsis and get rid of part of the likely yeast overgrowth problem. All these herbs are very gentle.

I also suggest taking gluten free bromelain/papain caps plus pancreatin enzymes with your food. It will greatly help and ease the digestion. They should not contribute to the acid problem.

If you take the bromelain/papain on an empty stomach with either the fibronylitic agent nattokinase or serrapeptidase. Doing this will greatly reduce the scar tissue in your gut. This will thus help with the regrowth of the villi. Don't take it however if you bleed easily since it will thin your blood.

More soothing herbal teas to take are chamomile and peppermint.

Avoid all caffeine and sugar for now.

Avoid all heavy spices for now.

You should start to feel a lot better soon. later on you can add a variety of gluten free grains. The trouble with a lot of the cereals, mixes and gluten free bread is that it has a preponderance of rice and sugar in it. The rice is not well tolerated by everyone. And the sugar is problematical if you have any kind of yeast or fungal overgrowth, not to speak of it not being that great for anyone.

Consider using stevia as a sweetener instead. It is an herb actually that is very sweet that they dry and make into a green or white powder. When you do bake with it it helps to combine it with applesauce to make it not bitter--remember a little goes a long ways.

Please let me know if you start feeling better or not. Good luck!

Bea

[ravenwoodglass]

I was right where you are 6 years ago. I was there for over 10 years before I finally was diagnosed. 6 months before I was diagnosed one of my kids told me they would understand if I committed suicide, and the thought did cross my mind more than once between the gluten caused depression and the constant pain from not just the gut but also from arthritis that was also gluten caused and many other impacts. Then a miracle occurred and I was diagnosed.

It takes a while to figure out all the ins and outs of being gluten free, you need to check absolutely anything you are injesting or putting on your body. I found the Celiac Sprue Associations guidelines to be very helpful, here is a link:

Open Original Shared Link

I like that they put things into a beginning stage and then an expanding stage for after we heal a bit.

Be sure to check all the meds and supplements you are taking with the maker, generic drugs are really risky those need to be checked every time they are refilled as they can change binders at will. Also eliminate it from any pet food or litter, Arm and Hammer Scoop litter is gluten-free and most that are just clay are also. Be careful with the scented ones.

I don't know where you are but if you live near a Wegmans they label all their gluten-free store brand items, they are really CC consious and they make it so much easier.

It can take a while to heal, but you will.

Welcome to the boards and I do hope you feel better soon.

[bellababy]

I was right where you are 6 years ago. I was there for over 10 years before I finally was diagnosed. 6 months before I was diagnosed one of my kids told me they would understand if I committed suicide, and the thought did cross my mind more than once between the gluten caused depression and the constant pain from not just the gut but also from arthritis that was also gluten caused and many other impacts. Then a miracle occurred and I was diagnosed.

It takes a while to figure out all the ins and outs of being gluten free, you need to check absolutely anything you are injesting or putting on your body. I found the Celiac Sprue Associations guidelines to be very helpful, here is a link:

Open Original Shared Link

I like that they put things into a beginning stage and then an expanding stage for after we heal a bit.

Be sure to check all the meds and supplements you are taking with the maker, generic drugs are really risky those need to be checked every time they are refilled as they can change binders at will. Also eliminate it from any pet food or litter, Arm and Hammer Scoop litter is gluten-free and most that are just clay are also. Be careful with the scented ones.

I don't know where you are but if you live near a Wegmans they label all their gluten-free store brand items, they are really CC consious and they make it so much easier.

It can take a while to heal, but you will.

Welcome to the boards and I do hope you feel better soon.

[bellababy]

Thank you both for your responses. I will try all those goodies you suggested to make my gutt better. I know it's a long and painfull process...I am just soooo tired of being sick and tired all the time. I've started taking fish oil vitamins..also take iron because I'm anemic. So far I haven't noticed a difference. I'm always up for something new though..I'm going to get some peppermint tea this weekend.

I'm going to keep coming back here because I NEED people that understand.

Thank you

[ravenwoodglass]

One other thing that I forgot to mention was the need to get some sublingual B12 tablets. Most of us are not able to utilize it from our food or supplements that are swallowed because of the damage to our gut. I will make a big difference in your energy and mood and aid the brain and nerves in healing. You can not take too much of it. It will help a great deal.

[toomuchagony]

Greetings Bellababy

Well boy oh boy eh... can I ever relate (as indeed so many here do really

I'd just like to add both a word of encouragement for ya, and couple other words of "advice" that haven't yet been offered to ya...

Firstly, while I know it is NOT what anyone wants to hear when they are eager to be well and trying to do everything they need to do to succeed in acheiving wellness, unfortunately the sad truth is that once you have become so very ill the actuality within your body is that it is "badly damaged" and thus it takes you some time in fact to concretely begin to "heal", and then a while longer yet before you'll start to notice a true difference that makes it evident to yourself that you are in fact healing. I know it is very difficult to exercise patience when it comes to "suffering", BUT never the less, I want to encourage you that honestly there truly is a "light at the end of the tunnel"! Everyone is different in "how long" the time frame for healing is, some folks have seen drastic improvement in just mere weeks or months, others it has taken them from a year to a couple of years to acheive their significant improvement. You MUST be persistently courageous, and try to take heart that every day, (even hard ones) is still a day that will bring you closer to being WELL once again.

Now then all that said... I'd like to share some other advice with you, which it happens in my own case made a real difference to my "progress" (and lack of it initially) and which may prove to assist you too...

You stated that you are "being very careful about what you eat" (and staying gluten-free), however I wonder if perhaps you may be like I was "ingesting gluten from other sources", for example in my case I had to change my "shampoo, soap, toothpaste, medications, AND all my dishes, pots, toaster, pet foods, etc". Have you do you think Bellababy truly "de-glutenized yer environment" completely? Perhaps you have a substance or item which is unwittingly delivering "trace amounts" of gluten still to spite yer diet changes. Additionally, once again in my own case, I inadvertantly "glutened myself" most recently simply "licking an envelope" (the adhesive on that reply envelope contained gluten!!) and man oh man was I sick from it with raging D and cramps, and naturally the healing that I'd accomplished prior was impeded by this. A perhaps not so obvious "other source" which ya might be encountering gluten from is "yer work place" if in fact you "share kitchen/coffee room space" with others who "use gluten containing things". With Celiac "cross-contamination" can and does occur regularly and even the most minute trace of gluten on or in your shared environment is and will be enough to cause you to "react" (and do damage to your intestines and impede your healing progress), so say for example if you "place your food onto a place where someone has prior placed a nice 7 grain sandwhich and not washed the surface after, well gee eh the sad fact is that you can unfortunately end up ingesting the left behind gluten right along with your nice "gluten free sandwich/food item" unawares it has even occured! Now I am happy to report however, and share with ya the fact is that here myself I am FINALLY (6 monhts) actually "feeling better" and my D & cramps have stopped and I'm keenly aware that I am now truly "mending" within my own intestines. (Which in truth, shall turn out to be a "negative" (literally) for me as it happens I am actually scheduled for my "Gastroscopy" TODAY, (took months to get it booked here!), I'm extremely doubtful now that the scope will provide a "positive confirmation of Celiac villi damage" as a result of my obvious healing from being gluten free (even from traces of it) for the past few weeks. But none the less, I am gonna go have the dang test anyhoo, I figure at the least while it may not "rule in Celiac" it should most likely anyway "rule out everything else" huh! Sheeesh the marvels of modern medicine huh

Anyhoo Bellababy... I hope this will both bolster yer spirit somewhat AND that perhaps it can lead ya to discover if there is some "hidden" gluten still managing to wreck havoc on yer poor guts. I pray you'll be able to ascertain any that may be present in your daily life, and that you will see improvement soon too!

[lhceliac]

I've beel gluten free for a couple months now. I've been sick for as long as I can remember. Two years ago I was diagnosed with Chron's disease. The dr told me there's pretty much nothing they can do, I'll just have to live with it. Most of the time I was in so much pain I felt like I was dying. At work I would double over and cry while my coworkers just looked on, not knowing what to do. I would throw up everything I ate, even water. I thought all of this was due to the Chron's disease. Finally my wonderful friend suggested I try a gluten free diet. That morning I went home and threw out everything in my kitchen that contained gluten. With in a couple days I was feeling better. The awful wanting to die pain was gone. I've had a hard time finding foods that are gluten free. I shop at Raley's, and while they do have a gluten free section, it's very very limited. With in the last month I have begun vomiting again. I'm very careful with what I eat, so I don't understand this. I've lost about 20 pounds (which I don't mind), but I feel like I've fallen into a dark hole and there's no light and no way to get out. Am I destined to live the rest of my life like this? Eat strawberries, throw them up. Eat gluten free cereal, throw it up. My gums are starting to become effected from all the acid. I'm so frustrated. I feel like I constantly want to cry. No one at work understands. Unless you've suffered, you have no idea. No idea. I am a police dispatcher and have to leave the room about 5 times an hour to go get sick. That doesn't work with this job, your partners get tired of it. I've never felt this sad before. I just want to lay in bed all day. I can't go on vacation because I have to plan around bathrooms, and we all know how that is. Sometimes I don't even make it to the bathroom. So much for a love life. How am I supposed to explain that to someone I'm dating? So I live at home with my cat. I'm 30 years old and have no social life all because of this stupid disease.

Am I the only one that feels like life is over? Seriously...I get out of bed, go to work, come home...all the while barfing and having awful diarreah. Can anyone offer advice? Either emotional or medical? I am so tired of this.

I need to hear that I'm not alone in this awful suffering.

I know it can be discouraging. When I was first diagnosed with Celiac disease I had a horrible time finding food. You could order food online I know it is expensive or you could order gluten free cookbooks. I too had horrible abdominal pain and was hospitalized for what they thought was food poisoning it was very scary. One of the books that was not only educational but very good for a knew celiac was "The Gluten free Gourmet" by Bette Hagman she provides a great deal of information as well as great recipes. I hope that helps.

lhceliac

[bellababy]

I finally found a good gluten free cookbook. The only thing that scares me is the long list of ingredients that I've never even heard of! Plus, I live alone so I can never eat all the food and it ends up going to waste.

The only store I've found that actually has a gluten free section is Raleys. I'm going to Hawaii in August, and the only major grocery store in Kona is Safeway...they don't have gluten free. So anyone have any ideas on where to get the good food on the big island? I'm briging dried foods in my suitcase...but I'll need more when I get there.

I've found out one thing that was making me really sick....salami! It has no gluten in it, but it was tearing me up. So now my lunch consists of swiss cheese and gluten free crackers.

Also, in case you all haven't heard Checks has a new rice cereal that's gluten free and just as yummy as the real stuff! Yea!!!

I really appreciate everyone's feedback and advice...I am glad to finally have a place where people understand.

[bareden]

Oh, trust me you are not alone. I know it feels like that a lot but more people than you realize deal with all of the same things. In the beginning I was shopping at specialty stores for gluten free products. But now I learn that the regular stores can do me just as well. There are so many natural options and I just try to think about 'eating from the earth'. Fruit, veggies, meat, rice ect. I do have to go to Whole Foods to get my bread and a few things. I also see that you are taking fish oil. I had to stop taking mine because it was causing me an upset stomach. I do take mega dose vitamin D. I am so sorry that you are having such a difficult time and I know it is hard to get understanding from those around you. Just keep at it.

[ravenwoodglass]

I finally found a good gluten free cookbook. The only thing that scares me is the long list of ingredients that I've never even heard of! Plus, I live alone so I can never eat all the food and it ends up going to waste.

The only store I've found that actually has a gluten free section is Raleys. I'm going to Hawaii in August, and the only major grocery store in Kona is Safeway...they don't have gluten free. So anyone have any ideas on where to get the good food on the big island? I'm briging dried foods in my suitcase...but I'll need more when I get there.

I've found out one thing that was making me really sick....salami! It has no gluten in it, but it was tearing me up. So now my lunch consists of swiss cheese and gluten free crackers.

Also, in case you all haven't heard Checks has a new rice cereal that's gluten free and just as yummy as the real stuff! Yea!!!

I really appreciate everyone's feedback and advice...I am glad to finally have a place where people understand.

I am a bit jealous of your going to Hawaii but anyway, we have a member who lives there. Perhaps you could post a specific query about eating in Hawaii, I am sure he would be helpful.

I know how you feel about those strange ingredients in the cookbook, but that is mostly for baked goods. It can be a lot of fun experimenting with recipes but for myself once I found a few gluten-free mixes that I liked I found I didn't use mine real often. Gluten Free Pantry makes many that are really good and quick to make for example.

[home-based-mom]

Let me just add that if you are finding it hard to find things to eat, you are probably still shopping in the center aisles of the grocery store. That is where the processed foods are, and yes, it can be difficult to find gluten free foods there.

Shop around the edges where the naturally gluten-free fruits and veggies and meats are found. A frozen chicken breast from Walmart, some cooked veggies (fresh or frozen) and some Minute Rice makes a very easy to digest dinner, and you can take left-overs for lunch.

Where I work it is common to find bread and matzoh crumbs "left behind" so I bought some Lysol wipes and leave them in the lunch room. I just wipe everything down before I eat, and use a paper towel as a place mat. You could try that at work. After all they have seen you go through, they should be more than willing to do anything to help you get better.

And I hope you *DO* get better soon!