Need Support!

[bmorrow]

Hello everyone,

I can't seem to eliminate the gluten from my life. I went on a short trip this last weekend and ordered what I thought was a safe meal. I had steak and a baked potato, but evidently the steak must have been cross-contaminated. They left off all seasonings and cooked it on a grill that they said was cleaned. The stomach bloating and pain started in approximately 20 minutes after I finished eating so I know that it had to be the food. That was on Friday night and I could not go to work today (Monday). My boss wants to see me in the morning for a meeting at 10:30, so I know that he is upset about the work that I keep missing. He still doesn't have a clue what Celiac is and doesn't want to. He brought me a huge heart cookie for Valentine's day!

I have been trying to be gluten-free for about a year now, and have been also diagnosed with microscopic colitis, and fibromyalgia. I also have intolerances to dairy, yeast and white fish. I really don't know what I am going to do, because I still seem to get sick at least once a week and have to miss work. The new medicine that I am taking for the colitis has stopped the diarreha, but I still have the bloating, chest pain, joint pain, and terrible gas. The doctor says there is nothing that I can do about the gas until I find all of the foods that are causing it. I have done the York tests, so I thought that I knew all of the foods that I have a problem with. He said to keep a food diary for two weeks and he would look at it, but I seem to have the gas when I don't eat anything for eight hours.

Sorry, I am rambling, but just upset, and trying to figure out how to cope with life and this disease at the age of 55. If anyone has any suggestions, I would appreciate them.

Thanks

[chronic]

Hi Bmorrow.

I too have many lingering problems. Probably being diagnosed later in life the disease has opened areas in our bodies that set up other diseases. I discovered that I cannot handle many of the glluten free foods because of the course rice flour. Too much dairy will also cause my body to react wth a vengance. The idea of keeping a diary might help you to discover problem foods. Sometimes I can get dealthly sick even though I have not eaten anything that hasn't been fixed in my own kitchen. This is so puzzling. Since I also have chronic fatigue that sometimes gets the blame but personally it seems there are many unanswered questions about this disease that hasn't been discovered by the medical field.

If you discover a remedy, PLEASE< PLEASE share it with all of us sufferes.

By the way, restaurants are scarry aren't they?

Chronic

[tarnalberry]

I would encourage, until you have this well in hand, that you simply do not eat out. When traveling, bring food with you, and stop by local grocery stores for produce, but don't trust anyone else to make food for you for now.

I'm sorry I don't have a lot of other advice - other than making sure that you're not getting contaminated foods. (Avoid packaged foods too, to avoid cross contamination, and stick with simple, easy to digest foods.)

[sparkle2085]

Beverly, have you checked to make sure that the new medication that you are on is in fact gluten free? Also dairy and yeast? This could be why you are having some of those symptoms.

[dperk]

I found that if I do any soy (even soybean oil) - it will give me gas and make me sick. That includes soy oil in mayo, margarine, potatoe chips, etc. You said you ate a baked potatoe - did you use their margarine? My sister has noticed the same thing.

I have to keep reminding myself that I spent the first 50 years eating gluten - it's going to take time for my stomach to get over it. But I sure hope that I can start eating other foods someday when my stomach heals.

Keeping a food diary would be a good idea.

[Donna F]

And I always add (b/c this is something I kept being affected by) no to share condiments with your non-celiac family (get your own butter , jelly, etc.) and use your own toaster too. Make sure you are thoroughly washing pots after boiling regular pasta and spoons and such - they leave a residue sometimes if not washed really well. I found that I'd get sick even when I boiled up regular pasta for everyone else - don't know if it was the steam in the air or what, but it was impossible to correct, so, everyone eats gluten-free pasta now. And ditto about eating out. I know McD's french fries are gluten-free, but I've gotten sick 2x from them. Maybe they got contaminated in the bag, or when they were picked up. Who knows. Just try not eat out if you can. The margarine is a big issue too. Not only that, but I've seen butter with 'flavorings' in it, so you can't neccessarily trust butter either. Gotta check ingredients. Butter should be sweet cream and salt, unless you know the 'flavorings' are gluten-free. That makes eating out even harder. I don't trust anything. The people prepping the food don't have Celiac people in mind when they are cutting veggies and such. Salmonella and E-Colia are their primary concerns (raw meats and fish). I prefer to stay away from restaurants (well, I don't prefer it, but I prefer it to being sick ) Hope you're feeling better!

-donna

[bmorrow]

Thanks to everyone for replying with your suggestions. I have checked my medicine and it is gluten-free. I think that I must be getting gluten from eating in restaurants. I am going to have to learn to take my food when I travel as was suggested by tarnalberry. I also eat alot of gluten-free processed foods, so I may be getting some yeast and dairy. I have a problem with eating too many fresh vegetables and fruit, because of the colitis, so I am going to have to figure out some kind of diet that will work. Thanks again!

[mela14]

i find my diet to be the biggest challenge of all. Eliminating the gluten that I know of is easy...it's all the other stuff that's hard....like hidden gluten. I just got some blood tests back that my dr ran and I came back postive for soo many other food intolerances. so....what do i eat. so far chicken is ok so i'll just have to keep eating that.

i also have gotten sick from restaruant foods and it sets me back for days! It also gets me super depressed and puts me in panic mode.

I have been eating out less because of it. I have a dinner party to go to friday with my sis and her boys (ages 6 and 8). It's mother son dance...so I'm taking one of her sons. The boys are so excited!...I am dreading it. I asked my sister to call ahead regarding the menu but my experience has been that most people don't get it and you might not get an accruate answer. so,I may just eat before I got and then nibble on a plain salad.

With time....as your gut heals I've been told that it gets better. I really pray that it does. Right now I can't do potatoes either so i'm really not getting enough starches and can't seem to put on weight. My face looks drawn and aged and it is upsetting. I also agree with whoever said...the longer you have this disease , undiagnosed and untreated......the harder it is and the longer it takes to get better.

My blood test results for gliadin AB were still high in spite of me THINKING that I am pretty gluten free. They are half of what they were 4 months ago but still high and not where they should be. I am seeing someone at Columbia Presb this friday. I'm sure that nothing can really be done but I feel that I need to see the pros....a GI who knows what they are dealing with.

I think the food diary is a great idea. It helped me to figure out, with the aid of a dietician, what I was intolerant to. things that I might have overlooked she picked up on and I've been avoiding those foods. The thing is there are sooooo many other intolerances that I am sure it will take time to get my diet fine tuned and figured out. I feel sick from food all the time and tyring something new is scary because I never know how I will feel.

hang in there as you learn what your body can tolerate and post when you have questions. I've learned a lot here.

Good luck!

[bmorrow]

Mel.

Thanks for the reply. It sounds like you have the same problem with food as I do. If I have to go to a meeting or be limited to bathroom access, I just don't eat anything. I can't figure out what makes me sick, because it seems as if everything does. I think that I have elimiated gluten, dairy, yeast, nuts and fresh fruits. I haven't tried eliminating soy and rice products that may have to be the next step. The doctor told me that the gluten free diet in itself is bad to cause bloating and gas, so what do we do? The only thing that it seems that I can eat is plain meat and I know that can't be healthy. I will just keep trying. Let us know how your doctor appointment goes!

[mela14]

Soy is a big time killer for me! I get so sick from it within 20 minutes and its gets worse as the days goes on. I it usually takes a few days to calm down. Eggs do the saem thing to me! Thos are already on the NO list. Rice is a hard one. it seems that I cna't do Whole grain brown rice...although I don't get the sick feeling that I get form soy, eggs and milk....it does get me bloated and my guts gets irritated and sour. I've tried white rice in moderation and i seem to handle it fairly well. For breakfast I have been having Beechnut Baby Rice Cereal as a hot cereal and have not been having a problem. Gerber maeks it with soy! so that's out of the question. Beechnut says it right on the box....SOY FREE. sometimes I add a litte beechnut banana ro one of their other cereals and it's ok. Then I stzrted to get daring and ate some walnuts and almonds for protein with breakfast....bad choice! boy did they make me sick....ALL DAY!. so they are off the list too!

The OK list seems to be getting smaller and smaller. ;(

With time I hoe the list can get more varied again. Let's see what the pros at Columbia have to say tomorrow. I want to address my other health issues as well and see if they feel there is any connection. My 2 cents isthat there is a common thread.

Feel better and let us know how you are doing.

[minibabe]

I always feel bloated, i never feel right. how do u know if you are having an allergic reaction to dairy? i eat a bowl of cereal every morning and most of the time for dinner also. i was just wondering if this could be from eating dairy? thanks

Amanda

[bmorrow]

Amanda,

I was tested by EnteroLab and York. Both of them showed that I was intolerant to casein and milk products. I have always had problems after eating ice cream or drinking milk. I would have bloating, diarreha and congestion.

[jknnej]

I agree with Tarnalberrys suggestion: don't eat out. I know it's a discouraging thought, but really, it is a small price to pay for your health.

I am a former restaurant junkie. I haven't stepped foot in one in 6 weeks and I only intend on eating out when I absolutely have to.

I work 16 hour days quite a bit and have to bring 2 full meals plus snacks with me. It sucks, but it is well worth it. I force myself to cook my weekly meals for a few hours on the weekend and then all of my work for the week is done!

Other than that, the other suggestions about testing other food allergies sounds like a good idea.

I hope you start feeling better soon-we all know how frustrating it is!