# My long story: IBS, fatigue, hypothyroidism. Really don't know what to do anymore.



## Knyttet

Hi.

This has been a very long road for me, trying to manage my gut issues. Don't know how to make this as short as possible. Typical background story, my IBS symtoms started when I was 14: daily cramps, bloating, gas and pain. Since then I've always had a very sensitive stomach, reacting to all kinds of foods (especially more unhealthy stuff like white bread, sweets, sugar) and also to stress. Slowly it started getting worse and worse and in the summer of 2013 I woke up every morning with my stomach in total cramps, bloated and in a lot of pain. That summer I started doing research on how to resolve my stomach issues, naturally, by diet and lifestyle changes. I started eliminating dairy, sugar and gluten. Eliminating gluten helped the most, the horrible cramping in the mornings went away. But I still suffered from pain, occasional constipation and severe bloating and gas. I tried digestive enzymes, peppermint capsules and fiber supplements. I left out sugar and processed foods, but my symptoms only got worse. I also suffered from terrible fatigue and my period stopped coming. In january 2014 I was diagnosed with hashimoto's thyroiditis. I got no help from the doctor's, they didn't find any sign of chron's, celiac disease etc. They didn't diagnose me with IBS but I knew that that's probably what I have (I had known that for years).

In the spring of 2014 I went to see a functional medicine doctor because I knew they would try to find a cause for my symtoms and not just tell me to live with them. She ordered a stools analysis. It showed that I had dysbiosis, an overgrowth of klebsiella species and malapsorbiton of fat and carbohydrates. The doctor prescribed antibiotics to kill off the klebsiella overgrowth, and lots of supplements to support my thyroid and gut. I also went to see a dietician who made me a meal plan to get rid of the bacterial overgrowth and dysbiosis. I think here the biggest mistake was that the meal plan wasn't low-fodmap. I was a vegetarian so I had been eating a lot of beans, soy and lentils. The dietician told me to leave out beans but I could keep tofu, lentils and other fod map veggies. My symtoms didn't go away, I could get a couple of days when my stomach started to calm down but it always flared up again. I was eating a healthy diet with a lot of whole foods, made all my food myself, left out dairy, high starch foods like potatoes and maize, sugar, fruits except berries etc. Didn't help.

In august 2014 I tried an elimination diet when I only ate full grain rice, sweet potatoes, carrots, quinoa, berries, and fish, herbs and olive oil (I started eating fish again in order to try this). This is when my stomach finally started to calm down. At the same time I started acupuncture which brought a lot of relief. For around one month I ate like this but when I started reintroducing foods everything caused issues: beets, coconut milk, eggs, swedes... I felt weak and hungry all the time, I wasn't getting enough energy. I continued sticking to the safe foods and slowly I got introduce spinach, kale and oak choi. I decided to start eating meat, cus I could not tolerate even lentils or tofu. I felt desperate that my stomach wasn't healing so I thought that a paleo diet could finally be the missing piece to this puzzle. I started transferring to the autoimmune paleo protocol, also following the low-fod map diet, because I believed that it could be good for my thyroid and other symtoms as well. By now I was suffering from such severe fatigue that I couldn't study full time, only a couple days a week. I was so exhausted all the time. In the beginning the paleo AIP diet worked quite well and the acupuncture had helped me so much that I could incorporate more veggies in my diet. I could eat parsnips, sweet potatoes, sautéed in oil, I drank bone broth and so on. But then slowly my IBS symtoms started getting worse and worse, even though otherwise I was feeling better. My joint pains were almost completely gone, I wasn't hungry all the time, my skin wasn't itching like it had been like crazy in august. But then I started reacting to everything I ate, low fod map foods like minced beef and parnsips with spinach etc. I had to leave out more and more foods, I couldn't sleep at night because I was in so severe pain. Acupuncture didn't even help anymore. So for christmas I tried eating white rice again, to sooth my stomach. I left out the tubers and root vegetables and only had rice, carrots and meats. The rice caused me itching but helped for my stomach.

Later I quit the autoimmune paleo protocol and started focusing on more IBS friendly foods. now all that I'm eating is this:

full grain rice

turkey

chicken (low fat cuts)

ham slices on full grain rice crackers

spinach

carrots

green beans

ghee (though I noticed it gives me gas so now I'm taking a break from it)

olive oil

herbs

black pepper

ginger

parnsip

a bit of celery root in carrot soup

This has helped me relieve my stomach issues but I still have varying degrees of pain everyday, bloating and gas. Most days the pain is really bad.

In february I went to see my conventional doctor again and did some blood work, and found out that my liver enzymes are elevated. I got then moved to the gastro clinic at our hospital and last week I saw a doctor there. They're trying to figure out what's wrong with my liver and I had to quit all the supplements and meds I was on. I'm really feeling worse then ever right now. I have jaundice ( yellowish skin), itching, swollen joints and worse joint pain then ever before, terrible exhaustion, sleep problems, swollen face and whatnot. When I asked the doctor about my stomach issues she says that it sounds like I have IBS. I had to ask for them to do a colonoscopy already next month, she would have only focused on the liver now. But I believe that they are connected, they have to be.

My whole health has been deteriorating for the last 2 years even though I have sought so much help and tried so many different things. I feel so bad everyday right now that I had to apply for sick leave. I can't study, I simply don't have the energy. I keep on losing weight, and I can't afford to lose anymore. My period has still not returned, but at the same time I've gotten really bad PMS symptoms. For the last 3 weeks I've had mild period like pain in my lower back and stomach.

I don't know what to do with my diet. It stresses me out that I'm not getting enough nutrients and that even though I'm on such a restricted diet I'm not symtom free. The biggest question for me is if I should keep on avoiding foods that are restricted on the autoimmune paleo diet, esp. nightshades (tomatoes, potatoes, aubergine, peppers etc) and try to try for example a low carb diet like the SCD, to heal my stomach. Or should I try to broaden my diet according low fod map principles, and allow myself to eat foods like gluten free oats, nightshade vegetables and seeds and nuts (these aren't allowed on AIP). Is low fod map the way to go (including grains etc) even though it doesn't address the root cause for the issues?

I've also been drinking homemade water kefir for several months now but it irritates my stomach. In the beginning I could tolerate it when my stomach was in better shape, and it helped prevent constipation. But now I can't see any benefits. I'm not sure if probiotics help me. I feel like I got some relief when I started eating a 30 billion probiotic but it gave me gas because of FOS prebiotics. I really wonder if I have SIBO or not. I seem to not be able to tolerate non-starchy fibrous vegetables. Starch gives me gas, fiber gives me pain and burning. I don't know what to do.

Even though I'm on sick leave now I can't relax. I feel so anguished, because no one is really trying to find the root cause for my issues. I feel so alone with this. I'm too exhausted to fill my life with any joy. I just have to stay at home and try to rest and my whole life surrounds around cooking and thinking about what I should eat next not to irritate my stomach more, but at the same time to get some nutrients in me.

I know there's a lot of you guys out there who knows what a horrible life it is to live with these issues. I really need some support from people who know what it's like. It feels so tough to be around healthy people, who even though they have their own struggles, at least they aren't in pain 24/7.


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## AlanZ

Knyttet, you are certainly are not alone in this. While discomfort and embarrasment have been a constant in my life pain was never really a factor, and I'm so sorry that you have to deal with that.

I'm a novice to this board and frankly with this problem in general. In my day people pretty much told you that it was all in your head, and all you needed to fix yourself was a good Psyiciatrist. Yeah, sure, but with that level of support I dealt with it on my own the best way that I could. Having admitted to my lack of all around knowledge I have never heard of a woman not getting her period because of this, though I welcome someone with more knowledge coming in and correcting me. That seems a bit extreem. I don't know what the healthcare situation is in Finland, but if you're not getting the help that you need, I can only suggest trying another Doctor if that is an option. And another if necessary. An maybe another.

I wish so much that I had more and better words for you, and hope that somone else will come in with better advice. I will say this though, you must, must find a way to relax a little. Stress does nothing to help with IBS, if IBS is what you have. My young adult life was filled with stress, and twenty some odd years later I'm still trying to deal with some of it. When I have attacks in public places, I say to myself over and over, "God doesn't give you more than you can handle". It works for me, at least a little, though things still happen sometimes. When those things happen, I just tell myself that it can always be worse, and I'm always right.


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## Knyttet

Thank you so much for all your kind words, AlanZ. I really appreciate it, they are a comfort to me in this misery. I will reply in greater length tomorrow, too tired right now to think clearly. But thank you!


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## AlanZ

If I was able to offer even a small bit of comfort Knyttet then I'm pleased. I know from experience that sometimes just having someone to commiserate with is all it takes to cheer me up a bit. I was at a public event for around ten hours this weekend, and while chatting with the wife of an aquaintence my IBS came up. She told me that she too was a long time sufferer and I immediately felt more relaxed. Just being able to talk with a person who gets it and being with someone who would back you up if something went wrong was just so so nice.

Hopefully you'll be able to get some sleep. Be well.


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## Knyttet

You are so very right, it really helps to talk to someone who actually knows how it feels to live with something like IBS. And you are also so right in the fact that I need to find a way to relax. It's just been really hard in this situation, just waiting for the tests and doctor appointments. And the fact that I am so fatigued that all my energy goes to the daily tasks like cooking food, causes stress as well. But last friday I went to my dad's place and I actually managed to start relaxing a little bit more. And today my meditation practice went better than in a long time. I actually managed to feel quite relaxed for a bit. I also have acupuncture again tomorrow, which also helps my whole body relax and makes it easier to meditate.

Unfortunately I got more bad news last week. I went to see my gynaecologist who had told me in september to come back if my period won't come back within 6 months. The examination showed that I have almost no oestrogen whatsoever, I'm pretty much in a menopause like state. This explains my PMS like symptoms of insomnia, anxiety, back pain etc. It could also explain my joint pain and swelling... He consulted another doctor specialised in hormones and ordered some labs. Now I have to wait for an appointment to the hormone clinic where they will probably start hormone replacement treatment. My doctor was quite surprised of how bad my situation has turned out and said that it's not common to see so much autoimmune symptoms in one person (based on what I've read online it's not really uncommon but apparently in his practice it has been, even though he's a professor at our university hospital). He thinks that the main problem is that I'm underweight, but the problem is that I keep losing weight even though I eat as much as I can of what I can tolerate. And I eat quite a lot.

I just pray to god that I'll find a doctor who will try to get to the root cause of everything and not just treat the symptoms, or a few of them. Starting my hormones with hormone replacement therapy will not treat the underlying cause. Where I'm being examined now is at our University hospital's gastroenterology clinic where pretty much our countries biggest specialists are. The hormone thing will be at the same hospital but another clinic. But I'm afraid that they don't really take IBS that seriously, that they're better at treating Chron's or colitis and more "serious" illnesses.. That's the vibe I got from the one appointment i've had so far. And that they'll only focus on doing the basic tests and after that leave me on my own and not try to understand the whole picture. It seems like if you don't have anything that threatens your life then after your diagnosis you ought to seek help from a private doctor. This is in our public healthcare. But I have my next appointment in April and I will try to demand proper help and ask them to consider every option.

Thank you AlanZ, I've managed to sleep a little longer in the mornings now which helps make up for the interrupted sleep I get during the night.


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## AlanZ

Well that's some good news and some bad news. I have the feeling that you're not very old so the oestrogen issue was a bit of a shock, but at least it's out there now and you can get the treatment that you need. What you said about the Doctors not taking IBS very seriously struck a chord in me though. Years ago a Doctor told me straight out that research focus is on things like cancer and AIDS (understandable), and that nobody is going to fund research so that I can have a better social life. There's so much more to this than having a social life, but such was the mentality at the time.

You gave me a smile though when you said that you've been able to relax a bit and also get a little more sleep. It's just so important. Stress and sleep deprivation make this condition worse, so if you can keep this up it will only help.

I had an unusually bad day with this today. My stomach was horrible, and I was passing nothing but liquid at work. This can be a real problem as we have a shortage of restroom stalls for men and today I was simply incapable of holding it. To be this bad is rare for me, but thankfully I have an understanding and tolerant boss who let me go after half a day.

Keep us updated on your progress Knyttet. I'd love to hear some happy news from you.


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## Knyttet

Indeed, it was a shock. And by now it seems like I can't really handle any more bad news. I felt really awful that week. Because yes, I'm only 23 years old and my body shouldn't be in this shape.. Considering how much I've tried, eating healthy etc.

Yeah, but that's the thing, doctors need to start thinking about life in broader terms than just life and death. It's not enough to keep people alive and breathing, if they're suffering horribly. But a big part here is the fact that there isn't a gold mine of money to be found in treating chronic disease's and therefore it's not prioritised by research.. Because it's way too complex for one pill to solve.

Yes, it's slowly going in the right direction I think. With relaxation and sleeping..

I'm really sorry to hear that you had such a bad day







Do you have any idea of what might have triggered it? I'm glad you have an understanding boss and that you could go home and rest. I hope you've felt better since then?

Next week I have the colonoscopy and ultrasound so I'll update you after those.


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## AlanZ

Wow, I didn't realize you were that young. I don't know much about that condition but hopefully they will be able to get you fixed up and back to normal.

As far as my poor day, since that tournament I was at on Saturday I've been absolutely awash in triggers. Bad food, sleep deprivation, lack of exorcize (I injured my foot there and have some forced downtime), too much alcohol, and this time of year is the aniversary of the deaths of my parents, so, yeah, pick your trigger. I only get that bad a few times a year at this point, so I grin and bear it the best that I can.

You're sounding more positive though, and I hope that really is the case rather than it just being my wishful thinking. One step at a time. More relaxing and sleep is a great start, and if they can get the oestrogen issue sorted out you are well on your way to better health and a better life.


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## Knyttet

Yupp. The problem is that no one yet knows what really is causing all these symptoms and the hormonal problems. But I already got an appointment with at doctor at the hormone clinic for Monday! So I'm really happy that I get to go there so soon. And maybe the hormone treatment will help with my fatigue and insomnia.

Oh wow, you've certainly had a lot going on  I'm so sorry to hear that! And I'm really sorry about the death of your parents. I hope you already feel better and that you won't have to suffer like this again in a long time (hopefully never).

I do feel more positive. My stomach has been a tiny bit better the past few days, except for a flare last night caused by a small contamination of garlic powder in my food. The problem is just that I'm soo hungry all the time, craving food but not being able to eat anything else than what I listed above. It sucks. But one day at a time.


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## AlanZ

As you say my friend, once day at a time. Where there's life there's hope, and you're still very much alive









I'm just so so so glad to see the improvement in your mood. I'm literally to the point that if someone tells me this is all in my head I would punch them, but I can't deny that there is a mental aspect to all of this and being upset and stressed only makes it worse.

As far as me, yeah, it was a rough few weeks, but my parents have been gone a long time, since long before you were born. There is still a lot of sadness when that time of year comes but we all have our crosses that we need to carry. It's the way we carry them that defines us









Please do post news when you get some results.


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## Other2502

Have you had your blood glucose levels checked? Unexplained weight loss (among other things) can be a symptom of diabetes type 1.

I wish you the best! I've had very similar symptoms to yours but not as severe, also I'm overweight. I had back pain, severe anxiety attacks, etc due to hormones (my progesterone was extremely low, so I wasn't ovulating... But i was having my period). Many of those symptoms were alleviated or lessened by standard oral birth control. I've changed my diet to gluten free and I'm slowly going towards paleo, but it seems the more I cut out the worse I get. I tested negative for hashimotos and other thyroid disorders but my labs were not in the optimal range, just slightly off. My fatigue is awful (I take 25mg/day of generic adderall for it)... Like you, I'm still getting tests done to ty to figure out what's wrong with me... It feels awful not knowing, and feeling like crap inside but looking normal on the outside...

Let us know what you find out! I hope you get some good news!


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## Christy Lou

There are so many of your symptoms that sounds like mine. 25% of the population have a mold intolerance (and most don't know it) and their health slowly declines.

There are several simple ways to tell:

Take a free VSC test which takes 5 minutes. www.vcstest.com

Go to Biotoxinjourney.com and take the Biotoxin illness test. Also takes 5 minutes.

These 2 things might show you what is really causing your problem. I wish someone would have told me.

Lots of luck, Christy


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## Knyttet

Thanks everyone for your replies and support. Last week was a very rough week with a doctor's appointment at the hormone clinic, colonoscopy and the ultra-sound examination.

At the hormone clinic they told me that the hormone labs had been normal, except for my TSH is in the lower range, which could mean that I should try lowering my thyroid medication. It could explain at least partly the constant hunger, anxiety, sleep problems and weight loss that I'm struggling with. After the appointment I've thought about it more and I do think that I might be suffering from hyper symptoms. So I'm going to try to lower the dose a bit, I'm just scared that it'll again make my levels sink too low and then I have hypo symptoms again. Other than that the gynaecologist said that they won't start any hormonal treatment yet because they don't know what is causing all this. According to them the biggest problem is my weight which I need to increase (which I'm aware of). So I'm gonna have to wait for all the results at the gastroclinic.

And yes, I've had my blood sugar levels tested several times, the last time in january. But they're testing them again now. Other than that the hormone clinic doctor gave me another appointment for September and said that if my period hasn't returned by then they'll reconsider the HRT. They're also going to have a hormone meeting among several doctor's and discuss my case.

The whole colonoscopy process was terrible, the enema, the exhaustion and the pain caused by the air they pumped in my stomach. But the results were good, my colon looked completely healthy, like a "school book example". So no serious disease was found. So I'm probably going to get a confirmed IBS diagnosis. In the end of the examination I started crying when I realised that I'll get the IBS diagnosis. I was just so exhausted and tired of the doctor's appointments and not feeling understood. It feels like the doctor's have no idea how serious my IBS is and how many other health problems I have been suffering from for so long. It feels like they think it's "just" IBS and that I need to stop stressing and just start eating more etc. They have no idea how much I've tried and how my health never the less is deteriorating. When they finished the colonoscopy I was pretty much having an anxiety attack, I couldn't breath properly just doing all I could not to cry hysterically. At the same time my stomach was in total cramp from all the air. The doctor tried to comfort me saying that we can try pain medication but I told her that I've been eating Amitriptyline for 4 years with no relief whatsoever for my stomach. She suggested that I'd try an SSRI medication when my liver is well again. Then she said that there are some new medicines for constipation. All this I'll discuss with my doctor whom I'm seeing in a couple of weeks.

I just hate this approach of just treating the symptoms. I guess that's all that conventional medicine has to offer. I just wish they would try to find out what is causing MY IBS. I asked about SIBO but she said that there's no medically approved test to test for it. But that they in some cases can try treating it with metrodinazole. I'm going to ask my doctor about it when I see her.

My fatigue hasn't gotten better at all. Instead my back pain and joint pain in the knees have only gotten worse. The pain in my back feels more and more like it's also in my spine and it radiates down. I can't sleep properly because of the stiffness and pain in my body, and my joints crackle a lot. I'm getting quite scared that this could be ankylosing spolynditits. Pretty much all the symptoms match. I also have some light swelling in parts of my spine, with small bruises. It's terrible that I'm too fatigued to stay active, exercise even lightly and take walks, but I can't rest properly because the pain worsens when I lay down. And because i'm in pain all the time I can't think of anything else than doctor appointments, possible diseases and the future.. I try to stay positive and take one day at a time but it's really hard.

Christy, thank you for your tips. Those sites were new to me and really interesting. I need all the help and tips I can get right now! Feels like this could be caused by anything. I hope you've found relief yourself?

Other2502, good luck with finding help and a right diagnosis. I feel your frustration. If you still suffer from symptoms of e.g. hypothyroidism and your labs are even slightly off, I would not out rule the option that you might have issues with your thyroid. What thyroid tests have you taken?

I'm so frustrated by the fact that I would like to eat 100 % paleo (or AIP) but my stomach can't handle it. I know I felt a lot better otherwise while on AIP, and I think it would help me a lot right now as I suffer from all these autoimmune symptoms. But my stomach is so damn sensitive and can't handle substituting grains out. I recommend you to take it really slow and cook all your veggies and tubers really well, make them into purees and soups. Replace one thing at a time and listen to your body. Good luck! I do believe paleo is a really healthy diet that most can benefit from. But we are all different.


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## AlanZ

It's been a little while Knyttet, are things going any better for you?


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## Knyttet

Hi,

it's been a while indeed. Unfortunately things aren't really any better. My liver enzymes started going down in february/march but then they were checked in April and had gone up again. 2 weeks later they checked them again and they had gone slightly down but they are still elevated. The doctor's don't know why. I still suffer from extreme fatigue, joint and muscle pains, itchy and dry skin, dry eyes, jaundice, brain fog, cognitive difficulties, heart racing, heart palpitations, insomnia, anxiety and whatnot. My IBS symtoms are still the same. In March I managed to calm my gut a little bit by sticking to my safe foods and stressing less , but I've noticed that I have quite a bad histamine intolerance. This makes everything so much difficult for me as the things that my stomach likes causes me really bad symptoms of heart racing, the brain working on "overdrive", anxiety and itchy skin. It's really terrible, it literally feels like i'm going insane. So now I have to avoid things like smoked fish, herring, ham and thyme. When I tried to reintroduce berries and mushrooms my symptoms got a lot worse. It makes me very sad that I can't even eat berries anymore because of this!! When my stomach actually could handle them. This is just terrible.

I asked my doctor about SIBO and he said that it was a possibility and he would consult other doctors at the clinic at their meeting. When he got back to me he said that they don't think I have SIBO because I don't have any signs of significant malabsorption... Since my ferritin and albumin levels are okay. Do you think that you can out rule SIBO based on this? For what I've gathered some people with SIBO suffer from severe malnutrition and malabsorption but not everyone. And wouldn't it be more likely to have malapsorbtion issues if you have SIBO with diarrhea? And I don't suffer from diarrhea but constipation. But they think it's a severe case of IBS-C and he prescribed Resolor to me. At first it didn't work at all but now I take 2 mg of resolor and 1 dosage of macrogol 4000 (12 mg) per day and now I have like 2 bowel movements every second day, compared to a strained one every fourth day. But resolor is very expensive and gives me side effects of headache and nausea.

I think a big factor in all this is my hypothyroidism. Like I maybe mentioned earlier I'm also being examined at our Women's hospitals hormone clinic because of the absence of my period. Well they told me to lower my thyroid medication even though my levels weren't too high. I was very sceptical but did what they told me to to see if it helps with my heart palpitations, heart racing etc. Well like I said I after that noticed that it was being caused/worsened by high histamine foods and lowering the meds did not help. Instead my hypo symptoms have gotten a lot worse and now my blood levels are really low, and I KNOW that they're too low for me (but still inside the reference rage). All these symptoms of itchy skin, body aches, joint pain, dry eyes, constipation, anxiety and fatigue are symptoms of hypothyroidism. I actually never had a problem with constipation before I got diagnosed my hashimoto's. It might have been that all along together with the symtoms the liver problem causes... I don't know. But they still don't want me to increase my meds now even though I told them about my worsening of symptoms!

The most worrying thing is that my weight has continued to decrease and I'm starting to get really worried. I've also noticed a very rapid increase of hair growth especially on my neck, a little bit on my back and arms, behind my ears and so on. I read that this might be due to my weight issues and something that occurs for example in anorexia. The worst part is that now the docs at the hormone clinic suspect that I have an eating disorder (and they wrote that the patient has a psychiatric background). They have not brought this up with me but I read it online in the database were you can see your information and lab tests. It shocked me, and made me so angry and disappointed. It seems like they have no idea how I've battled with my IBS and all my other symptoms. For how long I've been PHYSICALLY ill. I know that my diet is too restricted but every time I try to introduce new foods I get such severe symtoms that I can't sleep at night and it's just way too much. What should I do?? And the foods that I CAN eat I eat a lot of! At breakfast I eat vegetable soup with 100 g of chicken or fish, at lunch and dinner 150 g-200 g of meat/fish, 1,5 dl rice and as much carrots and parsnip as I can handle. As a snack I eat rice cakes with fish or meat and carrots. I add olive oil to all my meals and have tried increasing the dose. I eat fatty fish and every once in a while fattier cuts of chicken with skin. Since the beginning of this year when I realised that my weight is coming off way too much I've tried to eat more and I have been eating more. But I just can't eat enough of fats and nutritious food. But my gastro doc said that it's not that I don't get enough calories, that it's something else that is wrong. I also think that it's something that is way wrong with my body that is causing this. This is just another big stress for me concerning food, which is exactly what I don't need. Since I read about the hormone clinics suspicions I keep thinking about how I will make them understand my situation and how much I WANT to eat whatever and that I don't have problems with my body image etc. Though I'm starting to, as my body really doesn't look like my own anymore. It makes me so depressed and it feels like I'm not getting any help. Now I feel desperate to get more foods into my diet and more fats but since I'm stressed 24/7 I'm also in pain more than usually. This is such a vicious cycle.

I have my next appointment at the gastro clinic on the 26th of june (!!). on the 22.6 they will test my liver enzymes again and measure copper from my urine. That's all they're gonna do. I've decided that i'm going to go to a private doctor but I'm not sure if I should go already or after I get the results from the gastro clinic. At the first of june I have an appointment at the hormone clinic and apparently they will bring up the eating disorder matter then.

What do you guys think, do you think this still could be SIBO or should I trust the GI doctors at the hospital? I feel like I don't know how much longer I can handle this all.


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## cmcsf

Hi Knyttet,

I completely sympathize with you! I'm 22 and have been dealing with IBS for a while as well and it is a horrible condition. But, looking at what foods you have reduced to is making me think that I could help you! I went on the SCD diet a while ago and it did absolutely nothing if not made me worse. Then a few weeks ago I tried another diet that really changed my life. I talk about about more in detail on my blog, the link is below, so please take the time to watch the 5 min video. I really think that it could help drastically with your symptoms. The diet is completely based on research and has been proven to help 75% of IBS sufferers, so please take a look! I also have been to about 6 different GIs in the past year and they all gave me different useless answers. This diet is the only thing that helped me to the point where I don't have to run to the bathroom anymore, and I have no more bloating! You can also email me if you have any more questions at [email protected] Good luck with everything!

http://sideeffectsandibs.blogspot.ca/


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## Knyttet

cmcsf said:


> Hi Knyttet,
> 
> I completely sympathize with you! I'm 22 and have been dealing with IBS for a while as well and it is a horrible condition. But, looking at what foods you have reduced to is making me think that I could help you! I went on the SCD diet a while ago and it did absolutely nothing if not made me worse. Then a few weeks ago I tried another diet that really changed my life. I talk about about more in detail on my blog, the link is below, so please take the time to watch the 5 min video. I really think that it could help drastically with your symptoms. The diet is completely based on research and has been proven to help 75% of IBS sufferers, so please take a look! I also have been to about 6 different GIs in the past year and they all gave me different useless answers. This diet is the only thing that helped me to the point where I don't have to run to the bathroom anymore, and I have no more bloating! You can also email me if you have any more questions at [email protected] Good luck with everything!
> 
> http://sideeffectsandibs.blogspot.ca/


Hi!

Thank you for your kind words. That's what I'm suspecting, that SCD could make me even worse even though the theory behind it makes so much sense... I actually read the first posts of your blog and commented of one of them! I really like it. I'll watch the video, thank you.

But actually I am familiar with the low fod map diet, the problem is that even foods low in fod maps are causing me symptoms now.. Like gluten free grains besides rice, vegetables like zucchini, leafy greens and even eggs. I feel like besides not tolerating fod maps I have multiple other food intolerances, and now also histamine intolerance apparently. It really makes me believe that I suffer from SIBO and that this won't get better until I get it treated. But for that I need a good doctor  But I'm again going to try to reintroduce more low fod map foods so that I could get reach a more balanced diet.

I'm really glad to hear that you've found something that helps! Stick with it  good luck to you too! and thank you.


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## richgel999

Hi Knyttet,

Your story reminds me of mine a bit. Here's what I've found that helps:

My guess is your dysbiosis is still there, and the metabolites from the overgrowth are stressing your liver's ability to detoxify them. An over the counter supplement named SAM-e helped me a lot with that (400mg-1000mg/day) while I dealt with the overgrowth:

https://umm.edu/health/medical/altmed/supplement/sadenosylmethionine

I had to find a SAM-e that didn't have any sugar alcohols like Mannitol (Natrol SAMe), which I react quite badly to.

I had food poisoning in early 2013, which triggered IBS-C and SIBO. I eventually developed very painful leaky gut, gastritis, and I developed food intolerance to corn, dairy, and chocolate. I took several rounds of antibiotics (Rifaximin and several natural antibiotics), which helped with the bloating/gas but didn't fix the problem. For the gastritis/stomach pain I found Liquid melatonin (10-20mg per day - a huge dose) to be a lifesaver - it was like a painkiller for my stomach.

I finally went on this element diet (using the homemade option):

http://www.siboinfo.com/elemental-formula.html

I basically "ate" nothing but free form amino acids, Manuka Honey, Date Syrup, MCT oil, and a multivitamin for 2 weeks. I choose Date Syrup and Manuka Honey (vs. the usual glucose syrup because it's usually made from corn) because they both have powerful antibacterial properties:

http://www.sciencealert.com/date-syrup-could-fend-off-bacterial-infections

It's a very hard diet to follow, mostly because the amino acids taste so terrible. But after being in pain for months I was ready to try anything. This diet starves the beasties out. This diet should be quickly absorbed by the upper part of your small intestine, leaving little to nothing for the overgrowth to consume. I've heard of others using this diet combined with antibiotics, too.

Anyhow, after the elemental diet I very slowly introduced a single food at a time and waited 2-3 days for any reactions. I also had to eliminate FODMAP's. So far, this has been the only thing that has really worked for me to get this under control. My stomach has healed and I'm no longer reacting to seemingly everything I eat. I still follow a very strict diet, but I no longer feel like I'm in a food prison.

To keep my migrating motor complex (MMC) moving along I also take 5-HTP (a serotonin precursor), 100-150mg per day.


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