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Hi everyone!

I am desperately looking for any suggestions or stories similar to mine during my 3 years of incurable IBS.

My story:

I am a 23 year old female who started experiencing IBS symptoms over 3 years ago. Originally I would get cramping and gas that was completely unbearable and would pass once I had a bowel movement. Fast forward to now, I have absolutely out of control gas and bloating that happens AS I am eating basically anything OR if I don't eat for a long period of time (normally gives off a strong rotten egg smell), I have acidic and generally loose stools and bowel movements that happen at least four times a day, I wake up in the middle of the night to my skin itching all over, itchy ears, eczema, gingivitis, yeast infections that are brutal and won't go away with medicine, toenail fungus, and just recently found out via blood test that I have iron deficiency, almost NO Vitamin D in my system whatsoever, and low levels of Vitamin B12.

I have tested negative for gluten intolerances/Celiac twice, I had an allergy skin test which was negative for everything, I had an upper endoscopy which was normal, I had an MRI that led the doctors to believe that I don't have diverticulitis, Crohn's, or ulcerative colitis. The last stool test I took was negative for parasites and h-pylori.

I have a history of antibiotic use, and I am also currently taking birth control. Just when I thought hope was on the horizon, I took a hydrogen breath test to test for SIBO last week, and the results were negative. My doctor was almost positive that this was what I have. I have a fructose breath test in two days as well, but I don't have much hope for that.

Finally, I suggested a yeast overgrowth to my doctor who told me there was no way to test for that, and that if I had SIBO the same treatment would fix that if it were the case.

I am at a complete loss at this point (as I'm sure many of you understand) and am losing my will to even live. I am so exhausted and depressed. The SIBO test was my last string of hope and I cannot believe it was negative. Does anyone have any ideas/similarities/suggestions? I would appreciate any and all feedback. Glad I found this community. Thanks everyone.
 

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so sorry you're feeling so miserable.

the link below (scroll down to "limitations of the hydrogen breath test") says that the HBT may only be able to diagnose 60% of patients with SIBO. i have read elsewhere of even lower percentages. some people say that because of this inaccuracy, their gastro docs just treated them for SIBO anyway, without testing. if the patient felt better after the course of antibiotics, then the doc assumed it was because they had SIBO. i even know of people who tested negative for SIBO but, because of the very real possibility of test inaccuracy, their docs went ahead and treated them anyway. and they felt better afterwards.

this article also goes on to discuss the various reasons why it can be so inaccurate.

http://www.emedicinehealth.com/small_intestinal_bacterial_overgrowth/page6_em.htm

you might want to discuss all this with your doc. maybe he would agree to treat you anyway to see if treatment helps.

good luck to you. i do hope you can find some relief.
 

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Sorry to hear that you are suffering. :( I wish I had more words to help but I am in a similar boat...working on getting a second opinion. If you can, maybe get multiple opinions?

Even though you have tested negative for Celiac/NCGS have you tried cutting out of their diet entirely anyway? Also, are you drinking enough water and eating well? Sometimes things can be cleared up by just following a good diet. I had a friend who thought she had gluten intolerance and it turned out that she was dehydrating herself because she was drinking almost solely tea! After she changed her diet around she was back to normal. Not saying that it is a cure-all but more that it might help you a lot. Also, have you considered or are you taking any probiotics? That might help with the yeast infections...

There IS a way to test for Candida Overgrowth but it's expensive. I haven't done it but my nutritionist had suggested it to me. It's called Genova: : https://www.gdx.net

My nutriotionist suggested I do the anti-candida diet and I did that around Thanksgiving. It was awful and I was only on it for two weeks. I would not recommend unless you are 100% certain there is a chance for candida overgrowth! Some of the signs are similar to IBS along with other physical symptoms but I believe that Candida GI issues are more predictable and regular than sporratic IBS symptoms.

There are days when I feel really desperate, too, but remember that it's something that you can work with. Maybe you need to change some things but it definitely isn't hopeless and it will be for the better! :) Hang in there!
 

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I realize it's been a while, but hopefully you'll see this message. If not, hopefully this will be helpful to other people.

I completely understand your frustration. I've been dealing with similar issues for several years now and it has consumed much of my 20's. While obviously everyone's case is unique, I'll share some things that have really helped me.

First of all, if at all possible, I would try to pull together the money to see a functional medicine practitioner. I wasted so much time seeing regular doctors and an equal amount of time with naturopathic doctors. The naturopathic doctors weren't even covered by my insurance, so I was paying up the a** to see them, and unfortunately I was never helped by a single one I went to (and I've seen 5). This is not to say that there are no naturopathic doctors who can be of help, but in my experience, they just weren't experienced/skillful enough to treat my problem and often recommended things such as castor oil packs and acupuncture as a means to overcome this. Sorry, but that isn't going to cut it. Dysbiosis is a difficult thing to treat, and often requires pulling out the big guns (antibiotics, prescription antifungals, etc) in conjunction with natural treatments.

Ultimately, as a last resort, I finally found a way to pull together the money for a functional medicine practitioner, and it has made all the difference. Am I all better? No. But let me tell you, it is an INVALUABLE asset to have a doctor who is knowledgable and open-minded in your corner. My breath tests (hydrogen and methane) both came back negative, and I've struggled for a couple years to determine whether my issues were a result of SIBO or fungal overgrowth (aka candida). I did an organic acids test as a sort of "tie-breaker" and it indicated fungal overgrowth with no elevated markers for sibo. While every test has it's setbacks, this test should give you a better indication of what's going on. Keep in mind; however, that there is currently no way to test for hydrogen sulfide bacteria in the small bowel, and considering the fact that your gas has a "strong rotten egg smell", this is highly indicitave of hydrogen sulfide bacteria. The treatment for this is a combination of neomycin and xifaxan.

You may even have both candida and SIBO- it's actually quite common to have several pathogens rather than just one, as an overgrowth of one often leaves you more sucseptible to others. But the bottom line here is this: you can make yourself absolutely CRAZY trying to figure these things out on your own, and In the past I've often tried to cut corners in regards to testing as I wasn't working and wanted to save money. But ultimately, I wasted more time and money by guessing (not to mention your LIFE- how much is your quality of life worth?).

I know this is a lot of information, but please don't let it discourage or overwhelm you. As a summary, these are the things I would do:

1) See a functional medicine practitioner. They are expensive, but your health is worth it. This is hands down the #1 suggestion I would make. If you need to take out a credit card to do it, I believe it would be worth it. Please consider this.

2) If you can swing it, do the Doctor's Data comprehensive stool analysis and Great Plains organic acids test. As one doctor told me, there is no absolute guarantee that they will tell you anything, but in the event that something shows up, it can save you lots of time, money, and sanity. There are certainly cheaper stool tests, but this one is the best by far. Chris Kresser has a blog post explaining the details as to why, which you can check out here: http://chriskresser.com/which-lab-tests-are-essential/. While the sticker price on this test can run at around $500, if you're paying directly (aka the lab doesn't have to submit to your insurance for payment), the price is $275, which ends up being about the same as the less comprehensive stool tests. Note: I am in no way affiliated with this lab or any other lab, these are just the tests my functional medicine doctor recommended for me. It took me so many years to figure out these details amidst all of the conflicting information out there, so if I can help anyone save themselves a little time and heartache, it would be my pleasure :).

If you have insurance, there is also a serum candida antibody test that you can have done at virtually any lab, and my insurance covered it. It's not the most telling of tests, but it can certainly provide you with another clue as to what may be going on.

3) Cut out sugar. I wouldn't recommend going too low carb as it can cause problems of its own (low thyroid function, as well as other hormonal imbalances). Also, when you eat a very low carb diet, your body produces ketones, which candida can also feed on (see paul jaminet's perfect health diet blog post regarding low carb diets and candida for more info). I personally found eliminating sugar while still eating around 100g complex carbs to be ideal for my body. Everyone is different though, so most importantly, LISTEN TO YOUR BODY (regardless of what anyone says is the "best" diet).

4) If you can't afford the tests, I would personally just treat as if I has hydrogen sulfide SIBO. The rotten egg smell is very telling. While doing this, I would also follow Jeff McCombs' Candida Plan. It worked quite well for me, and will help prevent candida from getting out of control while on the antibiotics. Note: I didn't buy any of his supplements while following his plan. I bought SF722 online and took vitamin C and echinacea from whole foods. Saved me a lot of money. His diet was very do-able unlike other ridiculously restrictive candida diets out there.

I hope this helps, and best of luck to you in your health journey!

Tanya
 

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I revisited this thread and considering HappilyHealing advice of 100 g starch and no sugar. I'll try a combination of perfect health diet, low fodmaps and no sweets diet.
 
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