Writing, singing, researching random obscure topics on the internet, old horror movies, 1950s noir, hollywood glamour, photography, cooking, living natural and organic, being outside, exploring the world and everything it has to offer (once I get out of New Jersey…)
I started a thread about my SIBO but didn't get nearly as popular as this one lol. I have so may questions and concerns about it. Originally I thought once I was diagnosed with it I'd get better on the antibiotics they gave me. I'm on my 5th day of the 20 day regimen and don't feel any better. if anything, I feel worse. On top of my usual gas and bloating symptoms I feel very nauseous all the time. I'm confused about probiotics and whether they help or harm someone with SIBO. I'm confused about diet. I thought I should start a combination of the SCD and FODMAP diet as soon as I started the antibiotic but now I'm reading stuff about how I should start it as soon as I'm finished, that continuing to eat sugars and starches while taking the antibiotic is like bate, making the bacteria come out for the antibiotic to "catch."
More importantly, I'm reading many many posts about SIBO coming back and quickly. Especially the methane dominant bacteria, which is what I have. They say that since they don't know what CAUSED the SIBO it keeps coming back.
I have one question for everyone even if you aren't too familiar with SIBO. Did Celiac Disease cause my SIBO? Or is there yet another thing I have to figure out about what's wrong with my body? Because on December 6th 2013 I felt normal. Then December 7th I woke up in pain and have felt this way ever since. 2 weeks later I was diagnosed with Celiac, and then 6 months later I haven't healed and was diagnosed with SIBO.
It seems like the Celiac would have caused me to have SIBO. Or is this like "the chicken or the egg?" kind of thing?
I've read into both SCD and FODMAPs and then found a list of foods legal and illegal on BOTH diets combined to fight sibo. And it's printed out on 10 pages in such a neat order!
I'm about to follow that shit like a bible.
I am so ready for this to be over with so I finally feel myself again!!!
Cylinglady, did you or do you now have SIBO? I've been reading so much contradictory information about probiotcs :/ Whether I should take them while on the antibiotic, or once I get off the antibiotic, or not at all? So confusing. Do you have any input on this?
So I finally found my answer!! The doctor I'm seeing at the Celiac Center tested me for SIBO today despite the fact that I already tried taking the antibiotic for a week a few months ago (the dose was too small she said). It tested positive immediately for large amounts of methane. I'm so happy it doesn't seem real!
So after being strict paleo for almost 6 months after my celiac diagnosis with no relief, I finally found my answer I took a breath test for small intestinal bacterial overgrowth today and it cmd out very, very positive. The doctor was able to tell me it was positive not even half way through the test! There's a very large amount of methane, which explains my severe bloating, gas, and constipation that's been worsening every day since going gluten free. I was so happy to have an answer I burst into tears, while simultaneously cracking up and hugging the nurse who told me it was positive (whom I'd just met that hour…) Needless to say, this was the best news I've ever heard. I finally get to have a life again! I'll get to go out, eat normal amounts of food, wear tighter clothes again without having to worry about my swollen gut showing lol. I'm pretty much ecstatic!!!(:
Now my questions are….well, what do I do now? Is there anyone else who experienced this? Not getting better after going gluten free then finding out SIBO's the culprit?
My doctor prescribed me Rifaximin twice a day for 10 days and then Neomycin twice a day for another 10 days afterwards. But she also mentioned that a large amount of methane as opposed to hydrogen in the intestine is harder to treat and less common /: (with my luck) This scares me and makes me feel like I should be extra careful. Is there anything else to do to kill off the bacteria? What probiotics would be good for helping to treat sibo? I already take Acidophilus but is there one that would work better?
WHat about diet? I know the bacteria feeds of sugar and carbs? What sort of diet it recommended when treating SIBO, if there is any?
And most importantly.. did this simple fix, the antibiotic, cure your ongoing symptoms? I feel like in a way it's too good to be true. I've been living in unbearable constant pain from the time I wake up till I go to bed for so long I feel like I've grown accustomed to it! Could this really be the end?
Support is desperately needed here. Thanks everyone!
There's a flour I use for everything and it's the perfect substitute for regular flour. Baking gluten free is exactly like baking with gluten containing flour. It's called "Namaste Foods Perfect Flour Blend"
It's a mixture of sweet brown rice flour, tapioca flour, arrowroot flour, sorghum flour, and xanthan gum. Literally you can just use this in replace of regular flour in any recipe and it'll come out perfectly.
It's expensive but completely worth it. I also have a baking addiction
lol no obviously not a hundred But I do take a lot.
I'm taking a supplement caleld DIgestive Advantage Constipation formula which helps me stay somewhat regular. I take a fish oil pill. A probiotic (acidophilus). Digestive enzymes with every meal. L-Glutamine on it's own, and also something called G.I. Revive powder which also contains L-Glutamine along with glucosamine, citris pectin, aloe vera, slippery elm, marshmallow, mucin, chamomille, okra extract, cat's claw, msm, prune powder, and zinc. I've heard many good things about the GI Revive which I just odered about a week ago, so I guess it's too soon to tell if it'll help. I also take regular vitamins (which yes are gluten-free....i know some of you are going to ask that)
Also, uhm.. No one's heard of IgG food intolerance testing? I know it's somewhat controversal, and that elimination diets are typically what people do to try to figrie stuff out but I've already eliminated SO much and it still seems I react to absolutely everything I eat.
I feel like I'm drowning.
I've been on this paleo diet for 5 months and I feel worse and worse everyday. I don't know how much more I can take of this.. My stomach is stretched out so far it literally hurts to breathe!! I don't care what it is I'll have to do as long as I can get better. No one's been able to help me. My old GI doctor went as far as saying that it's IBS and I'll probably just feel like this forever. Granted, she also originally doubted I had Celiac Disease (before I got the biopsy and bloodwork) soley because diarrhea wasn't one of my symptoms... -__-
I don't know how much more of this I can take. THis whole thing has taken over me entirely. I'm not myself at all anymore. I don't care about any of the things I used to care about. I rarely even leave me house. I'm in constant agony 24/7...sometimes I"ll spend entire days crying... I feel like I'm being punished in a way. I was never really a happy person and now I realize how much I should have appreciated my life while I still had one.
I'm afraid I'll have to live like this forever. After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else.
Sorry for whining like this lol I know some of you don't really wanna hear it. I know my parents and my boyfriend are tired of hearing it. All I talk about it Celiac Disease and trying to find out what's wrong. I tried the FODMAP diet, the SCD diet, I once even did 2 weeks of eating nothing but homemade soup, gelatin, and baby food veggie purrees. Nothing helps at all. I never get a chance to breathe.
I've heard of that btu I haven't been tested for any bacteria or parasites or anything like that. Yet (hopefully) I've wanted to get a stool test for a long time but my GI doctor wouldn't sign off on it... (then again, she also said she doubted I was Celiac because my main symptom is constipation, not diarrhea. After the biopsy and bloodtest showed it she seemed surprised...)
Are infections like this common for people with Celiac Disease? I pray it's something simple like this.
Yes I've looked at all the "newbie" stuff back when I was frst diagnosed 5 months ago...
And I've been taking l-glutamine on it's own for a few months but it didn't do anything, which is why I got the GI revive supplement. My diet, like I said, is far more than just gluten-free. There's no cross contamination going on. There just isn't. And I did get tested for SIBO. I don't have it :/
I feel like since I"ve already eliminated so much what else can I try? eggs? nuts? I've already eliminated sugars, processed foods, all grains, all dairy, and certain things I've noticed that hurt my stomach even more (such as broccoli and beans)
This was beautiful, thank you :') I love all the support I get from this website!!
I just started taking a supplement I heard about from a website called The Celiac Diva, for healing leaky gut called "G.I. Revive" that has (this is a long list):
L-Glutamine, glucosamine, citris pectin, licorice root, aloe vera, slippery elm, mucin, marshmallow root, chamomile, okra extract, cat's claw, prune powder, and zinc carnosine. For $65 this better do something. I'm still waiting for my Celiac Center appointment. I want to ask the doctor about getting a test for food intolerances. Either the IGe or IgG or something? I don't know much about it, but elimination diets don't do anything for me because it's been 5 months I've been doing it and I still seem to react to everything.
Can anybody point out anything else it could be that's wrong? After 5 months on a strict gluten free, grain free, dairy free diet I should be seeing SOME results but I haven't even imporved in the least bit. In fact I'm getting worse.
Does anyone have ideas?
Other than bacterial/parasitic infections of the intestines, pancreatic insufficencies, other food intolerances, or SIBO?
And does anyone know anything about "leaky gut" and what to do about it?
I do keep a food journal, and I do avoid "gluten-free" foods, I only eat veggies, fruit, meat, and nuts. And thats all. No grains or sugar or dairy or processed food asside from coconut flour (certified gluten free)
I've heard 6 months is the minimum time for healing, although most people tend to start feeling better in some ways with ANY little imporvement over a month or so. I don't feel any different! And it's been almost 5 months! I look like i'm pregnant my stomach is so huge and bloated, i never stop crying. I woul do absolutely anything to stop this hell... it hurts so bad and it never stops! i had to quit school, quit my job, i dont go out, i dont do anything. Even my GI says she doesnt know what could be wrong, she reffered me to the Celaic Center in nyc so im going there in 2 weeks. Hopefully i'll get some answers...