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PamelaB

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About PamelaB

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  1. Hi J, I am challenged with both Celiac Disease and SIBO so I can understand your concerns. I have been on many courses of Rifaximin with Neomycin to get rid of the bacteria and what you are experiencing is par for the course. You may find that at the half way point you seem extra bloated then it just disappears. All the side effects from the drugs will end once the treatment ends and actually get better towards the end of your cycle of meds. But you do know that once diagnosed with SIBO it can always flare up. There is no cure for it, only a management of symptoms through diet. To keep the bacteria eliminated in your system you have to stick to a strict SIBO diet. I hope your GI doc has talked to you about this. I adhere to both a very strict gluten free and SIBO diet and still deal with bacteria overgrowth on occasion. Hopefully these meds will do the trick for you and you have a good medical support system, who knows their stuff.
  2. What I try to remember is that celiac disease and my health issues do not define me. I define me. One day I realized all I had to talk about were my illnesses and how boring was that. So I stopped talking about it. There is so much more to me and I refuse to let any illness be my identity. Doesn't mean it's easy. Doesn't mean I often don't live with nausea 24/7 but it will pass and I will have good days. We all have actually been blessed in a back handed way because gluten is truly unhealthy for everyone. Eating healthy is a wonderful way to honor your body, mind, and spirit.
  3. I realize this post will not make very popular with the group. But I get frustrated reading how miserable people feel and then read what they are eating. I want to pull my hair out when I read how staying away from gluten makes someone feel so much better and yet they are careless about it, get glutened and then opine about it. PEOPLE if you have been diagnosed with Celiac Disease or NCGS this is the new normal. You cannot and will never be able to eat or live like you did before. You will adapt. You will create a new lifestyle. Is going out to eat more important then feeling good? Is that piece of food worth your health? While you are laying in bed miserable because you were afraid to advocate for yourself to your family and friends, they are going about their lives. It is not easy. I know. In fact there are days I just want to put my face into a box of donuts. I have been diagnosed with celiac disease since 2013, SIBO since 2012, I started this journey weighing 132 lbs and now can't get past 108 lbs, had my gallbladder out last week, anemia with more blood transfusions then I can count, in 2014 a GI bleed that about did me in until they found it and I could go on. My brain surgery in 2007 was easier then all of this but I am a pit bull about my diet. I only eat clean and high end. Buy my fish from a fish monger who catches it locally and cleans it right there. Live on veggies, berries, fish, chicken and some red meat but only organic. Fresh herbs and have to cook every day. Going out to eat is in the past but I would rather feel good. I don't eat at other people's houses but I do still go and bring my own food. The only processed gluten-free I eat are a bread I order from a special bakery and Synder's gluten-free pretzels. My vice is delicious wine. Having both celiac disease and SIBO is extremely limiting. There is very little to eat. I adhere to a strict SIBO diet. Yes, eating like me is very expensive but I am worth it. And so are you. If you want to feel good you have to be hyper vigilant about what you put into your body. The New Normal but so worth it!
  4. Have you had your blood levels checked for possible anemia. I was fatigued beyond belief and found out I was severely anemic but didn't know the cause therefore they did and endo to look for GI bleeding and ended up getting diagnosed with Celiac. Even though a year ago blood tests for celiac disease were negative. But since the biopsies were positive, I am now positive for celiac disease. With celiac disease there the inability the absorb nutrients led to my anemia. It is just a thought. On another note, when I first went gluten free, I felt just like you. I am now 5 weeks gluten-free and still am battling the process. It takes time.
  5. I can't thank all of you enough for your kind words of support. Like you said as my husband sees me getting better then maybe his support will grow. I have to admit it is still hard for me to wrap my head around the fact that this is for life. Nothing feels in my control anymore. As I gain a sense of control back and a routine to shopping, cooking and eating, I am hoping that things will get better for the household. Right now is an awful learning curve. And yes, getting him to understand the cross contamination issue is huge. Was thinking today that I might give him his own dedicated counter space in the kitchen, since he doesn't clean up after himself. Anyways thank you again for allowing me to just vent and think out loud.
  6. I have been 5 weeks gluten free and it has been a struggle. I also suffer with IBS-C and anemia due to the celiac but am currently receiving IV iron infusions to increase my levels. My struggle is my spouse and his inability to grasp the severity of the situation. Or maybe he has just become desensitized to hearing me say "I don't feel good" for so long that he doesn't get it. I think he hopes that some time in the future I will be better and no longer have to adhere to a gluten free diet. I feel like I am constantly debating with him about how I feel and that it is related to what I eat. He doesn't seem to get that I don't feel well because of what I eat therefore I can't eat certain things anymore. To be more specific, I am finding the longer I go gluten-free more food intolerances are rearing their ugly heads. I am already lactose intolerant, have been for numerous years, but now seem to be corn intolerant and he just cannot and will not accept this. Today I ate a gluten-free English muffin made out of corn flour and I am now down for the count...fatigued, body aches, nauseous. And I have been noticing trouble with corn products but just wanted to ignore them. How do I get him to understand that being Celiac can be more then just needing to be gluten free, but a whole host of other things can come into play? Thinking of going to an allergist to have a blood test for food allergies done because he only seems to believe it if I have medical proof. How I am feeling does not matter. Feeling all alone.