Huel saved my life in one week

[JohnnieD72]

Thanks very much. It’s been quite a surreal year. As you know after reading everything, I can sympathize with not having much luck with doctors and GI issues. I am a little surprised they never actually did any tests to look at my small intestine, but ran the same tests over an over for the large intestine. If I do have Crohn’s, it is most likely in the small intestine. I always thought if you just let the doctors follow their protocols, they would arrive at an answer, but they seem to go through the motions, and if you have a disease that doesn’t fit the standard criteria, they are reluctant to try to figure it out.

In any case, my doctor did not say the canker sores alone indicate IBD. My understanding is that Crohn’s can affect any part of the digestive tract, so the correlation of a flare-up in my intestines with the flare-up of canker sores is what indicates some form of IBD. It is a bit hard to explain, but before I found Huel, I was actually in a state of moderate to severe flare-up all of the time. My body was under attack, presumably by itself for a long time, and I was plagued with canker sores and facial rashes for many years too. Because the issue was out of control, the problems were constant, so I could not actually correlate cause and effect; I thought I had multiple unrelated issues.

It was not until I went on Huel for a week, that everything started to clear up. I had no idea at the time if the symptom improvement was due to being able to get more nutrition and overall health improvements, or a direct relation to the core issue. I quickly jumped to the conclusion that is was all related. It was only after months of trial and error that I started to understand the sequence of events in my own body. I began to realize when I went too far with trying something and the GI issues started flaring, my face, mouth and anus also had corresponding issues. If I was able to get back on track and my GI symptoms improved, so did the the sores. That correlation is the key aspect that led my doctor to say it is not IBS.

Supposedly, IBS does not cause extraintestinal visible symptoms like that. So, a facial rash can be caused by a lot of things, canker sores can be caused by a lot of things, and anal sores can be caused by a lot of things, but when you put those together with increases in GI pain and symptoms, it starts looking like some form of autoimmune disorder, with IBD being the most likely, and Crohn’s being the most common likely candidate. The fact that my Mother and niece both have very similar conditions, and we have all struggled to get a conclusive diagnosis and symptom relief, that seems to indicate a strong likelihood for a genetic factor, possibly an uncommon manifestation of Crohn’s or maybe it is something the doctor’s don’t even have a name for, but is very similar to Crohn’s. My niece had evidence of Crohn’s on one colonoscopy, and nothing ever since then, also leading me to believe we have the same obscure issue. She paid out of pocket for some sort of blood test that supposedly confirmed Crohn’s, but in talking to my doctors, they did not seem to know anything about it, so I have no idea of how accurate it is. The point is that we both have a lot of symptoms that indicate Crohn’s, but the standard tests don’t seem to confirm anything. That’s a rather lengthy explanation as to what my understanding is of how the canker sores correlate with Crohn’s. Here is an article than provides some context regarding the canker sores correlating to Crohn’s. https://www.everydayhealth.com/hs/crohns-disease-treatment-management/crohns-symptoms-that-dont-affect-digestion/

When I started this journey a year ago, I quickly became convinced it was Crohn’s, but I honestly was too fed up with doctors to bother with more specialists. I have only seen one new specialist, one time since then. He was good at explaining IBS related concerns, but he didn’t really take a look at the big picture. I became tired of trying to explain things in ways so they might put the puzzle together, yet never seem to get anywhere. I was completely stressed out with trying to sort it all out, and ended up doubting myself for a while, giving into the idea that I must have IBS, since they surely would have figured out what it was by then, if it wasn’t IBS. As is so true in so many aspects of life, you often learn more by mistakes. I am not 100% certain what triggered the short, but severe flare-up on July 4, but suspect something related to the Sesame Tofu. Triggering a significant flare-up was the only way I drove the point home in correlating the symptoms.

My suggestion to anyone facing any health condition would be to ask yourself one simple question…are you doing everything you can do to improve your overall health. In my case, I had not, and it was not until I accepted the responsibility to change anything I needed to change to find a solution that I made progress. Whether Huel is part of the solution for others, or they simply choose to make healthier choices, I believe many, many people are likely suffering with conditions that could be improved with strong lifestyle changes. For me, it is mind-bending to think I was so far gone as to wanting my life to end, when it was within my own reach to make the changes to give me another shot at really living. It made me realize how much I had accepted as inevitable, that has since proven to be fixable, to one extent or another.

Good luck to you and thanks for the comments.

[rbgamblin]

Science prevails! Thank you for keeping such detailed notes, promoting skepticism, and sharing your story!!

[JohnnieD72]

Thanks very much for the kind words!

[JohnnieD72]

Well, everything went a little sideways and I have not been able to identify the cause thus far. I finally felt I could manage travelling back to the east coast to see my family and have some face time with the people I work with. I was extra careful leading up to the trip, and felt fine going there. I arrived on a Friday and by Monday, I started having problems. I had expected travel would throw off my digestive system a bit, but the first symptom was actually a pronounced rash on my face. It was on fire and easily the worst rash I have had in over a year. This was followed by a lot of urgency and discomfort all day. The rash started calming down by Tuesday night, so I hoped it had turned around. Wednesday was rough, as I had to go into the New York office, which meant getting out the door early, which is not easy for me, even on my good days. I had a very busy day and consumed less Huel than normal. By the time I made it back to the hotel Wednesday night, I was screwed. Everything felt irritated, just like it had been before I switched to Huel. Thursday was hell, and the flight back was pure misery. I thought I had it settling down, but it got much worse over the next few days. Sunday night, it seemed like the lining of my intestine was on fire. A couple of days later, I noticed extreme tenderness in my lower left. Pressing on it made me jump, which is the most tender it had ever been. I was in really rough shape, and almost considered going to urgent care, but this felt like a variation of the past, and they never saw anything. If I thought they would help, I would have gone, but I envisioned another small fortune for a CT scan that shows nothing. In any case, I am getting better, but still not right after over a week now. I ended up with two sores in my mouth too, one of which is pretty deep in my throat, so particularly annoying. In any case, I am still staying positive, as I know I forced it into remission before, but I cannot figure out what triggered this one.

The frustrating part of this is that I took all of my usual supplements, and had only Huel and some basmati rice. I did put margarine on the rice, because what I bought there was not very good quality rice and was hard to eat otherwise. The main reason I ate any rice was because travelling makes it very hard to consume Huel the way I normally do. It was difficult to have my usual refrigerated mix with me at all times, so I often was mixing and drinking on the go. One problem was that I did not consume enough, so I consumed some rice each day to add some calories. Aside from that, I did not consume anything other than Huel.

I cannot believe basmati rice could be a problem for me, and I would not expect anything in margarine would cause such a reaction either. This has led me to think that perhaps I have been thinking about the benefit of Huel to me in reverse. I tried more food exclusions than I can count before moving to Huel, yet was constantly plagued by GI issues, the rashes and canker sores, which I now am confident are connected in some fashion, whether directly or indirectly. I had originally considered Huel just a safe option that would give me a means of trying to get answers to the cause by applying a more scientific approach, but now I am thinking more and more there are therapeutic benefits to Huel that keep things in check. Perhaps ingesting it in sufficient quantities coats my intestines in a way that prevents the inflammation from forming. For the past few days, it has been Huel and Huel alone. As much as I enjoy the taste and convenience, I am avoiding the RTD version, as that does not seem to have the same effect for me at all. It won’t go to waste, since my wife and son are using that every day now, but I need to stick with what works, and that only really seems to be Huel powder.

The first thing that comes to mind is that if I presume plain white rice almost has to be a safe choice, I could consume only that for a few days, and I would know for sure if Huel is preventing the issue from flaring. The main problem with that is once a flare starts, it is torture until I get it under control again. I want to validate things, but potentially triggering another serious flare-up is a bit hard for me to find the courage to do at this point; perhaps after I am back to my “normal” level for a while, I will try that.

If not that, I could only assume the issue was triggered due to the stress travelling caused, but aside from the health issues, it was not all that stressful to me. The horrid traffic in Virginia might be the exception to that.

So, this whole event has led to more confusion for me. I submitted another inquiry to Grand Rounds, and the specialist assigned says by all current diagnostic criteria, it is very unlikely I have Crohn’s or IBD. The facial rash is not the type of skin rash typical with Crohn’s, so I am told, and they say the mouth and anal sores are inconclusive. So, I have something that causes canker sores, a facial rash, and intestinal inflammation, but all other symptoms would be closest to IBS-M. For all I know now, the mixed nature of my bowel movements may be caused by the amino acids I take, as large does of some of them cause increased secretions in the intestines, which can lead to watery stools. Either way, the remaining symptoms appear to be some form of FGID. I do truly believe some of the issues are FGID, but that does not explain the extraintestinal symptoms, and other than a few articles suggesting otherwise, the common opinion is that FGID do not cause inflammation in the intestines.

This led me to one other condition, that covers things pretty well, but should be impossible, celiac disease. I was tested for it and it came back negative, and I have avoided gluten for a year now. It can cause mouth sores, rashes and intestinal inflammation, so it covers those issues. Gluten causes an immune response, in reaction to the gluten, instead of being without a food related cause, such as with Crohn’s, but to one degree or another, I would expect the immune response could be similar. So now I am baffled, as it is hard to determine any viable cause an effect. When putting everything together, some aspect of this issue really seems to be autoimmune, but I also had blood tests for common autoimmune disorders. The flare-up while travelling to the east coast was amidst chaotic circumstances, so it is hard to draw any viable theories, much less anything conclusive.

Anyway, onward and upward. I am just going to stick with Huel powder again to get back to “normal”. I really need to figure this out, so I have an option other than relying on Huel, but so far, the only other thing that truly helped my GI issues have been probiotics, but those don’t seem to have the same effect as before.

If anyone has any theories as to what else might be causing this, or why Huel seems to be the only thing that keeps it in check, I would welcome some theories. There is a lot of information out there that I do my best to make sense of, but trying to get any experts engaged to bounce ideas off of has proven difficult. Doctor’s seem to prefer to talk more than listen during the office visits that last about as long as getting fast food, and I am tired of spending a fortune on regurgitated information, rather than actual analysis. I keep chipping away at the data to gain more understanding, but I am getting in the realm of more theory than anything commonly identified that truly aligns with my issues. Perhaps it is some obscure variant of IBD, FGID, an uncommon autoimmune disorder, or an allergic response. If not, it would almost have to be a combination of things, which seems less likely. Overall, I have been doing very well this past year, but it seems it may be even more fragile of a balance than I had expected, so instead of truly improving anything, I might just have found better ways to barely keep things under control.

If anyone has any thoughts or suggestions, please send me a message or reply back to my post. I am good at research and analysis, but there is a plethora of information out there, and I am no doctor, so help and suggestions for avenues of additional research would be welcomed. As always, I appreciate anyone who takes the time to read my lengthy posts.

[miked]

Since it’s unlikely you are ever going to have a doctor diagnose this complex interaction of systems…

Have you researched the bio/chemical processes involved in the various symptoms you experience?

Your symptoms are so extreme I don’t want to even suggest there could be a single nutrient deficiency or gene miscode or who-knows-what. However, you’ve had a lifetime of coping and have the rest of your life to figure it out. I imagine you may become quite the subject matter expert on immune system gone haywire.

I will ask the doctor I work with to give me some specific keywords for where to start more research.

[JohnnieD72]

Thanks very much. Yes, I am diving into as much information about how our bodies supposedly work as I can understand. Just recently, I read up on how protein breaks down into polypeptides, tripeptides and dipeptides before breaking down into individual amino acids. I have also been studying how nutrient absorbtion works. Whatever the cause of my issues, I am pretty confident that I have trouble absorbing nutrients very efficiently, so was looking into ways that I might improve that. I also have been researching th nerves, as well as trying to wrap my head around the sodium and calcium channels and whether there might be some tweaks at the nerve level. I am currently researching some different things to see if I can calm the nerves in ther; to that end, I am trying slippery elm next week. I am still hoping if I make the rest of me as healthy and strong as possible, it might help my digestive system. As for the immune reactions and trying to understand how that works, I have been trying to understand more about that, but having a tough find the right search result yet.

Anyway, I do appreciate the suggestion. I do spend a lot of time pretty much every day trying to understand the science of it all. Some articles are way, way beyond my ability to understand, at least at this point. I think I understand every other word on those. I definitely have learned a lot and share your thoughts that I have time to sort through it. I made a lot more progress on my own in a year than in all the other years I have been dealing with this combined. So long as I don’t loose my ability to manage it as well as I had been, I can stay positive and focused. Gets hard when a flare-up occurs and I get knocked down. I am fighting to regain my strength each day, but I still struggled on a two mile walk tonight. I barely managed to N minutes on my bike yesterday. I know I will struggle even more if I don’t exercise though and my gut did feel a bit better afterwards.

Thanks for the offer to ask your doctor for search suggestions. I really appreciate that. I definitely don’t mind doing the homework, so suggestions on topics would be appreciated.

[nickturboturner]

Hi i have been on Huel for 5 weeks and would note the following, i have had ongoing gut issues following a huge cancer op and being on antibiotics for almost 3 years. Since starting after a week my bloating and gut problems are a thing of the past. I have steadily lost weight, 8 kgs to date and have the energy to exercise daily. I have at least 2 Huel meals a day and 1 normal meal in the evening. Brilliant product!!

[JohnnieD72]

Just wanted to say that is really great news and I hope things keep getting better for you. Huel rocks!! Thanks for sharing.

[JohnnieD72]

I had not thought to write again since my bump in the road in August. I still don’t know what set things off, and I am a bit embarrassed that I let it get to me. Once I passed that problem, I got much better. I don’t know if it is a matter of something in the long list of supplements I have been trying, or my digestive system just finally recovered enough to start working better, but once I recovered from my trip, I have not had a single day with anything more than rather trivial issues. I was shocked when I realized how much better it was getting. It is really hard to explain how it felt. My best analogy would be when you get a cold and because you feel bad, it is at the forefront of your thoughts. As you get better, it just fades until one day you realize you are all better. Well, I am not all better, but I am damned close these days.

I am now eating healthy salads and adding some vegetables to rice. I had zero issues at all from eating those. After a while, I decided to try the Huel RTD again, as those has caused some distress before, but I am now able to drink those with no issue. My wife made a rice dish the other day that was a little spicy, and would have lit me up when it hit the problem area in my intestine before, but it caused me no issue at all.

I am never going back to eating junk, but I can finally eat without misery. I am now trying to balance things out a bit, consuming 2000 calories of Huel, and 1000 to 2000 calories of rice, salads and will start trying some vegetable soups. When I moved to 100% Huel, I became vegan and plan to stick with that. I saw too many documentaries about what it takes to farm meat, and just don’t want to be part of that anymore.

It has not been long enough to declare an all out victory, but something really seems to have clicked. The most recent supplements I added before this might be the catalyst. They did not immediately help, so it is hard to be sure, but I was targeting boosting nerve function and some new things to calm GI irritation.

I did realize I no longer need the high dose probiotics too. I had wondered what was the situation with that for a while. I had been taking them four times per day, and sometimes more on days when things got worse, but eventually, I did not notice any effect any more. The effect was almost overpowering when I first started taking them and then again when ramping up, but not any more. I have reduced my intake to two doses per day with no issues, and plan on reducing to the standard single dose per day in another couple of weeks, if all goes well.

If things continue to go so well, I will have to start sorting through the myriad of supplements I have been taking to decide what to keep taking and what I can do without. I think most of them have some potential benefits, but it gets expensive taking this many. It might be worth it in other ways though. I am in the best shape of my life right now, and getting better all the time. In the past two weeks alone, I went on two hikes to Sandbeach Lake. The trail takes you 4.5 miles up an elevation gain of 2200 feet to the lake which sits at just over 10,000 feet.

HUEL Rocks!!! I would not be able to do all the things I do without it! I was not able to truly live for a long time, but the sky is the limit these days.

[JohnnieD72]

I decided now might be a good time to post an update, as things changed a lot.

After the last post, I was doing way better until January. In October, I finally figured out what set things off in August and what had thrown off a lot of my results when trying other foods throughout the year. It was the margarine that I added to the potatoes and the rice and the oatmeal and some other things. I believe the main issue is soybeans. I have never heard of anyone being sensitive to soybean oil, but…. Soybeans, yes, but that is due to the soy protein. I have zero understanding of what the deal is with soybean oil, but I was able to trace all the facial rash flare-ups to increased intake of margarine. In August, I was travelling and for a few reasons, I had some problems relying on Huel alone, so I made some white rice and used a lot of country crock, since my caloric intake was low and I thought it surely would be safe. My face broke out in a painful, very hot rash and then, as usual, my gut was completely screwed up. Ever since I excluded soybean oil, just avoiding margarine of any form, and I have had zero issues with the rash or the associated GI issues. That has been over three months, so it seems fairly conclusive, but still will take time to prove with more certainty. The only oils I use currently are coconut oil when cooking and olive oil on salads.

So, that hopefully pins down the root cause of the major issue. I can think back over the years how many times I restricted my diet, but did not believe it was necessary to worry over fats like that, due to the common foods that are typically a concern for IBS and IBD. Even when I restricted my foods, I still had coffee with non dairy creamers based on soybean oil. There were a couple of times that I don’t recall eating anything with soybean oil, but it is in a lot of things you would not expect unless you read the label.

As for what happened in January. I was doing as well as I had been on Huel, and even was able to eat some social meals while our son was home from the Army. Right at that time, I decided to try switching to Huel Black Edition. Huel was always great, but the gas was a bit hard to deal with. Keep in mind my GI issues always caused bloating and gas, so I didn’t consider it a factor of Huel. No matter what I had tried, it always seemed to cause bloating issues, so I have been spending a lot of time trying supplements to combat that. My thought was the oats were to blame, so Huel Black Edition seemed perfect. I started slowly at first and was disappointed that I could not tell any difference at all. Once the holidays were over, I decided it was time to go back to 100% Huel for a while and try combinations of original Huel and Huel Black Edition. To my surprise, the bloating became much worse instead of better, reminding me of the challenges I had when first adapting to Huel. I tried Huel Black Edition alone, and it was even worse. I then thought about how everything I read talked about carbs causing bloating, so I tried adding extra protein powder to Huel Black Edition and it went out of control. The amount of rotten egg gas was almost unbelievable, but then I did the math and a little research. With Huel Black Edition and the added protein powder, I was consuming about 300 grams of protein per day. Research pointed me to a condition known as protein bloat, fully describing my issues. It happens often to athletes who consume more protein than they can effectively use. So, I started realizing that was a solid explanation, and decided to switch back to original Huel to avoid overconsumption of protein.

The bloating went down some, but I struggled to get it back to the levels it had been. This continued for a few days, and during that time, I did more research to learn that pea protein is considered a potential issue if more than 20 grams are consumed, but I have found very little explanation for the time frame surrounding low Fodmap recommendations. 20 grams in what time frame? I do not believe that pea protein had been listed years ago, but maybe it was added after pea protein became more of a thing. When I started on Huel, my gut was a complete, nonfunctional disaster, and I specifically chose it while searching for a recipe of safe foods that might help me. Since it is marketed as low Fodmap and without any ingredients of concern, I presumed it to be the perfect food for continuing the process of determining how to fix my digestive system and preventing problems. It did such an amazing job of keeping things moving while I recovered from the prescribed laxatives, that I believe caused much of the actual damage, so I absolutely feel it was critically important…. for a time. I had to basically retrain my bowels with consistent habits for months, and tried the supplements and such to try to move forward towards more normal bowel function. Huel really helped in that process.

So, if you can imagine a person who has massive inflammation, facial rashes, and canker sores while having a digestive system so messed up, even passing gas was impossible without laxatives, imagine how hard it to even consider stopping anything that provided relief. That was where I was at with Huel. It became a lifeline I was too scared to let go of, even a little. The thought of trying to do without Huel filled me with a lot of anxiety.

So, back to January. Since I could not get it back to reasonable bloating levels, I decided to try to limit Huel to one serving. I had much less bloating, basically the same amount I usually had with many servings a day before. One serving obviously could not sustain me by itself though, so I pondered what to do. The obvious solution eluded me because of the fear of potentially having the severe issues again. Finally, I decided I needed to try to stop Huel entirely for a while. I had plenty of foods I had cleared before things went sideways, so it seemed a good time to try to come up with a balanced diet I could follow consistently and compare results. It terrified me, but I planned it out and went cold turkey on Huel. I love Huel, but if it is not the best option for me, it is time to find out what is.

What I got was immediate relief the very first day. I picked cooked Spinach, brown rice pasta, sweet potatoes and chicken for my trial. I was really reluctant about chicken, as I really want to do my part in terms of the environment, but it is not so easy when I seem to have issue with at least a couple of major vegan protein sources. Even that is still not enough protein for my fitness goals, as I am not eating chicken all day, and am hooked on the benefits of more protein now. I decided to go for grass fed whey protein, carefully reading labels to find one with ingredients I like, and none of what I want to avoid. I had thought whey was a problem before, but the protein bars had…… soybean oil. So far, so good on the whey protein powder working for me.

Overall, the nutrient content of the foods I chose is high is some key micronutrients and covers the macros in the proportions I want, so I am happy with it for now, and can add things back over time, with more ability to gauge my tolerance. To give you an idea, the bloating issue before Huel would have been a 10 out of 10. Most with functional GI issues have increased pain levels, so imagine how painful bloating can be; you cannot sleep or even think straight. This would go on for weeks at a time. On Huel, the best I had was bloating at about a 4 or 5, sometimes as bad as an 8, but passing within days. When I switched to the new diet, bloating dropped to maybe a 3 at first, but after a few days, it became a 2. Some days are a 1 now, which probably falls into the normal category. The nerves are still more sensitive, but I am hoping they will now calm down over time. Regardless, the lack of bloating will make it much easier to gauge food tolerance.

The only bad news in this is that the bowel movements are a bit more difficult right now. It has improved some, but I am still anxious wondering if a little more difficult is going to become a blockage. My bowel function improved a lot in the past year, so I think things are coordinated enough to avoid that…. I hope. It just takes a little more time to get moving, but it responds more normally to cues now than a year ago.

A lot of supplements I was taking were to try to manage the bloating, so I have been able to reduce my supplement regimen substantially. I plan to try to add Huel back some, once more time has passed and I maintain more consistent function. I am still very grateful for Huel, as I really don’t think I would be here if I had not come across it. I am, however, glad I got past my phobia of trying to function without Huel, and proved I have some good options that will not leave me in dire condition. I still have to take things slow from here, but Huel will be a choice for me now, not a necessity. Hopefully, I will find a balance that let’s me avoid the issues, but be able to make use of Huel when I choose. Right now, I have almost 30 bags, so here is hoping that I can work it in! The RTD version doesn’t seem to cause bloat problems, but I have not tried more than a bottle at a time and that was after switching my diet. I plan on giving it a while longer before trying to have a serving of either powder form per day.

If I could go back in time and give myself a hint, I would have suggested going to a dietician. That was not something the doctors suggested, but I believe a dietician might have helped me understand food better a long time ago. I have spent the past year studying, but my inaccurate understanding of the complexities of food and nutrition caused me to be on this ride longer than needed. If I had to suggest to anyone reading this who has GI issues what they should take from it, it would be not to overlook the importance of extensive food knowledge. Doctors have a little, but a dietician, particularly one who specializes in GI issues would be a wise option to consider. If you don’t have access to a dietician, you will need to find your own way too, but look for the little things. We take medicines that come in small capsules and we know a lot of those have an effect, but I think many, myself included, neglect to consider a dash or this, or a sprinkle of that, to be significant. The small things we consume matter too. I would also suggest to be careful about chasing problems with loads of supplements. It can be an addiction to keep trying things. It helps keep you going in terms of hope, but I spent about $10,000 in supplements in one year, and that is not factoring the cost of Huel in the quantities I was consuming. Some supplements are definitely worth it and I will keep, but I am going to put myself on a supplement budget, and pick only the most significant ones. Most of the ones with a proven benefit are sports supplements.

I am sure if I read over my postings from start to finish, they may seem like the ramblings of a madman. The trauma caused by the years of severe problems definitely had an effect on me mentally; I am not ashamed of that. There were many times that I really thought I was crazy in this past year, but desperate, scared and determined would be more accurate. I needed to have that enthusiasm and positive energy to drive me to keep trying for the next level. It often came out in ways that seemed less than stable, but I considered every moment of every day a fight to keep the upper hand and keep progressing further. Fitness goals boosted me even further, as I tried to combat the issues by simply getting into shape. I now have goals to hike a 14er mountain here in Colorado this year, and want to get at least 1,000 miles trail biking this year. I would not have dreamed that it would be feasible for me to even consider such goals a year and a half ago. I did some intense hikes and put over 600 miles on my bike last year, but I think the gloves might be off now, and I can really excel. I even took up running now, and I always hated running. I still suck at it right now, but am making progress each time I run. Giving myself fairly intense goals kept me going, and it has become who I am now.

Anyway, I hope someone someday can take something from all of this. This forum post is practically a book now. I did not mean for it to become what it did, but sharing has both been my way to keep fighting, and in hope to help someone figure out their own situation.

Onward and upward!

[Dan_Huel]

@JohnnieD72

If I could go back in time and give myself a hint, I would have suggested going to a dietician. That was not something the doctors suggested, but I believe a dietician might have helped me understand food better a long time ago.

Thank you for sharing again Johnnie. I totally agree with this a dietitian is specialised in this area, it’s what they do.

[acelanie]

This is beautiful seeing your commitment to your health, would eating fermented foods for probiotics do the same thing as taking the pill? A search on google says one gram of kimchi has 10 billion CFU. Would love to know if you trying fermented live foods before moving to the pills.

[acelanie]

Also the blotting may be from the gum products that are in the mix, I found an article saying that can be bad for people with IBS. I have followed your whole story, and the deep research you have gone into I would be interested to know. I feel like IBS is such a horrible term and gives doctors a reason to just put you on medication that could make things worse instead of really focusing on diet and education, I guess its a business after all. I think your story would help a wider audience and maybe you could start a youtube channel. I just went on a all whole foods diet and am generally following FODMAP but my stomach is still super bloated and gassy, always feel like I need to go even if I’m not constipated. I am looking into hurl just for the fact that following a vegan diet generally doesn’t get you enough calories and I seem to be sensitive to oils. Anyways your story is truly inspiring and a great read and informative, you did not seem crazy at all!
Be Well!

[acelanie]

Also curious to what supplements you kept after all over your experimenting especially for bloating.

[JohnnieD72]

Thanks so much for the your kind words. I really appreciate the feedback. I considered doing Youtube videos along the way, but I never go around to it. I kind of feel like it is a bit late in the process to start now. I had a brain tumor removed in 2009 and did a series of videos to give people some insight into the recovery process, which sucked…

It sounds like you have some of the same issues problems I have had. To me, following a FODMAP diet without a very limited set of foods didn’t work. I really tried several times, but it was more about trying to look up foods I thought might be an issue, so I often missed something. Personally, I think the best possible way to sort it out is by doing a short term diet with limited whole foods that are simply not mentioned anywhere as being a concern for GI issues. Of course, if you look hard enough, there probably is something out there that would say spinach is bad for you! I picked my staples for switching back to whole foods carefully, and they should work well for most people with bloating issues. Chicken is a good choice for a protein source. The grease can leave me with a little indigestion, so I am opting for white meat more now. Cooked with some coconut oil, salt pepper and cayenne pepper is how I am cooking it now. If you are trying to stay vegan, Huel will be a great option for protein, if it agrees with you. If it proves to be an issue, and you are open to whey protein, this one checked the boxes for me. Spinach, Kale and such as great for micro-nutrients, and if sauteed, it is a little easier on the stomach that the raw leaves, for me, plus I can eat more easily that way. I personally think brown rice pasta is one of the best things for carbs. Sweet potato may or may not be an issue for some, but that helps provide some other nutrients and more readily digested carbs too. I would still say going to a dietitian is probably the most direct way to figure out what is right for you, but if those foods are something you could eat, you might give it a try. If you are like me in that regard, it should not take more than a couple of days for bloating to be pretty much completely gone. From there, you can add foods back slowly to see what causes bloating and what does not. I kind of needed to take the journey the way I did, for a lot of reasons, but I would say if I had gone on that strict diet years ago, before it got really bad, I might have stopped it then. All it takes is missing an ingredient or two in a processed food, so I am sure I botched all the dieting before. Mostly excluding intolerable foods is not good enough, and unfortunately, it requires strict adherence to make headway.

Do you have any pain with it? I just tried stopping dicyclomine again, and it went very badly again. It was far worse after going back on whole food, with the tenderness coming back for about a day until I started taking it again. I would love my digestive system to stand on its own, but it does seem that helps still. I had a tough time gauging the effect, as it does not work as quickly on me as would be expected. It only works to keep the pain away when I take it regularly, it seems. If you have pain and were put on an antispasmodic, you might want to talk to your doctor about using it regularly, instead of only when the pain hits. I tried it “as needed” off and on for years, but it never seemed to help. I don’t know why, but it seems to have to either build up or something.

As for supplements for bloating, the only thing I am really taking that seems to help are probiotics. I did actually try making kefir and there is a high potency probiotic in coconut water availing in Colorada that I have tried as well. I honestly did not notice any benefit from them in terms of my GI issues, in terms of controlling bloating. The only probiotic that has proven super effective has been the RAW Ultimate probiotics. I was taking four per day, as that is how I was best able to keep bloating under control for months. It took some adjustment, but I could easily tell it was helping with the bloating back then. The problem was the expense, as each capsule is $1. Worth it, if that was my best option, but now that I figured out some whole foods I can eat without bloating, I have not needed as many. Currently, I take one capsule at night, after I last eat, which seems to give the best results. I have had a number of probiotics that kind of work, but that is the only one that had a definite impact for me. Everyone is different, so what worked for me, may not work for others, but for me, these are the most potent.

I did find some Gas Relief Tea on Amazon that seemed to help a little. I have not needed it since switching back to the whole foods I picked.

L-Arginine does not help with GI issues, but helps with energy, circulation and a bunch of other things. I take about 15-20 grams per day, but could probably do with more like 24 grams or so.

L-Glutamine is good for fitness too, but it also is used by your digestive system, so may also aide in GI repair, but nothing conclusive on that. I have only been taking about 10 grams per day, but 20 grams would be better.

L-Ornithine is supposed to help with growth hormone, and it does seems like it might help with growing muscle, but hard to tell, as I added that after others, so no way to isolate any results.

Creatine Monohydrate helps with energy for workouts and giving muscle a little booster charge. I have been taking about 8 grams per day.

Iron was one of the first things I added and one of the most important. I always was very lightheaded when I would get up from kneeling. Anemia can be a common problem with GI issues, but my blood tests no longer showed anemia, but last time I pulled the iron, I still got lightheaded. It might also be due to my increased activity levels now.

Magnesium is important for both fitness and GI issues. I can’t conclusively say how much it helped, if any, but it is one that seems wise.

Calcium is not something I am really getting from food now, so I am taking that each day.

Zinc, along with Magnesium and Calcium were ones I brought into the mix as they can be related to issues with nerve function, so I thought they might help the nerves in my colon, but I can’t say they worked. I take the Zinc too, mostly because it seems like it could be a good idea.

Vitamin D is supposedly also important for nerve function, and I had read it could help GI issues. Can’t say it helped, but it doesn’t cost much for a little prevention.

Milk Thistle is supposed to help the liver and supposedly may help bloating. It did not help with bloating while on Huel, but I am still taking it, as it is a popular supplement for liver care. Don’t know if it really works, but don’t see it hurting either.

Dandelion root may be a little helpful with the bloating. If so, it was pretty minimal, but maybe with higher doses.

Wormwood may be helpful in stabilizing things in the GI tract. It does seem to help after a time. I am not taking it regularly, since it is not recommended to take all the time. I took a break from it, but it seemed to help clear up the candida or whatever was growing on my tongue. It got noticeably better when taking this, and tended to help prevent the stools from becoming watery as much. It was hard to pin down exactly how beneficial it was, but every time I stopped before, I ended up back on it, as I determined it was better overall on it than off.

Apple Cider Vinegar is much better than I had expected. The capsules are useless, but actual apple cider vinegar diluted in water seems to do a lot of things. I use about two tablespoons in eight ounces of water. It is not too hard to drink, but I feel it when it hits the stomach. Using that daily almost completely cleared up the growth on my tongue. I believe it may help with other aspects of GI issues too. Well worth trying, in my opinion.

Here is an odd one, for IBS. Caffeine. They tell you to avoid caffeine with IBS, but I need it sometimes. The feeling you mention with feeling like you need to go, but can’t is the same I had all the time. It is hard to imagine how debilitating it is for your body to have the urge to go, but you can’t. I still have the issue where things feel “stuck” inside. I get cramps, mostly in the evening, that pass pretty quickly now, but I actually hear the groaning when it finally moves. If it is bothersome, I can sometimes skip ahead with some caffeine. Within minutes, it hits the intestines and seems to force them to move past the issue. It also can help in the mornings, if my colon needs a jump start.

I also take a multi-vitamin right now, just to help fill in any gaps until I get enough variety in my diet.

Lastly, I would say acacia senegal fiber has some benefit. It is a prebiotic fiber, and does seem to help, but is tricky to get the right amount. Too little has no effect, and too much can cause bloating.

There are others I am still taking, but plan to back off of, but artichoke leaf extract and burdock root supposedly might help bloating too. As before, it never really helped me conquer the bloating on Huel, but now I don’t have bloating. If I back off, and find out it returns, I guess I will know then, but I really didn’t notice any effect.

Aside from food, I would say the number one thing that I absolutely had to do in order to troubleshoot things was establish a consistent routine. That means going to sleep and waking at the same time each night, taking supplements on a schedule, and over time, establishing a time frame each morning to have a bowel movement. Before I did that, I could not see any patterns due to the myriad of variables. Once I had set routines in that regard, then a lot of the experiments involved changing the timing of other things, i.e. a few large meals, or split into a lot of small meals, eating more early or eating more late. Also timing of exercise showed a pattern for me too. Exercising towards the evening is more beneficial than the morning. By the evening, food has moved into the colon, so the exercise seems to help it move past the problem areas.

If you are going to give Huel a try, I would keep in mind that you might react differently to the powders versus the RTD version. I have no clue what happened to cause it, but even trying one scoop of the original powdered Huel caused some bloating for me. The RTD does not seem to cause much, if any. I really love Huel and will be disappointed if I can’t have it some again.

One last response regarding your issue with oils too. I checked in with my niece, who has the same problems, as far as i can understand, and she said she figured out the issue with Country Crock for her a while back. She also has had issues with other oils too. Weird that I have never read anything about oils being a concern, but maybe I just didn’t stumble on the right article. I honestly believed the problem foods were more likely limited to carbs, but it seems obvious now that it is more complicated than that.

If there is any more information I can provide, feel free to send me a direct message or post here.

[Mitzy]

Hi JohnnieD72,
I know it is a very old post but wanted to say
Thank you for sharing your story,what an experience it must have been for you going through that and trying to figure everything out.How are you doing now?
Have you been tested for something called CSID? Sucrase isomaltase deficiency?
The deficiency causes inability do digest sugar and starch although some people with it can process starch especially if slow digestive starch. CSID is related to chron. Huel has very minimal sugar content and starch is from oats which is very slow to digest. Wondering it it might be related.
Hope you are doing great in any ways and all the best!