Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Need Support!


bmorrow

Recommended Posts

bmorrow Rookie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



chronic Newbie

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 Community Regular

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 Newbie

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 Rookie

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 Enthusiast

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 Rookie

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! :rolleyes:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mela14 Enthusiast

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 Rookie

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 Enthusiast

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 Contributor

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 Rookie

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 Collaborator

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!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,187
    • Most Online (within 30 mins)
      7,748

    Kris46
    Newest Member
    Kris46
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...