It’s been a little while since I shared a health update with you and I’ve definitely been on a journey these past few months. I did two posts a couple of months ago, talking about my food intolerance’s and my leaky gut syndrome, but I’m still no clearer on why I have these issues. My leaky gut was caused by something (and it’s not yeast) and my food intolerance’s happened out of the blue just over 2 years ago. There’s been no answer as to why any of this happened or how to fix the root cause and I’ve seen specialists numerous times, a dietician, I’ve tried remedies to try and heal myself, and I have almost exhausted all resources. I just wanted to give an update on my situation as I know a lot of you ask how I am doing, so I’ve broken it down into parts and a background of what happened, just in case any of you out there are doctors or might have the same experiences, any advice or ideas would be most welcome, please!
What happened? In May 2015, I had an acute attack of something that made me have mild sickness and diarrhea, I couldn’t keep any food down or in, and water was a struggle as well. This happened for about a day or two, and I had really bad stomach pain. After this, my small intestine and stomach area between my ribs swelled up huge like I had swallowed a tennis ball, and was burning like lava all the time. Sometimes I was doubled up in pain because I couldn’t stand straight.
After a couple of weeks of that, I went to the doctors and she said I has gastritis and put me on Omeprazole (a proton pump inhibitor which lessens stomach acid). These tablets were really bad and gave me migraines and weight gain, so I came off of those and went onto Ranitidine, but they weren’t strong enough, so I then swapped to Lansoprazole. For a while this was working, but food intolerance’s were getting really bad and most foods were causing issues. I was then put on Domperidone, to push the food through faster and stop acid sitting in my stomach, but those made me gain weight even more and they actually caused me to not be able to retain any foods. The food would fly through and it was awful. I stopped taking those and was still on Lansoprazole, but the pain in my stomach would not go away. The only way to describe it was like someone had punched me between the ribs on top of when you’re starving hungry, so you get that deep, pitted, gnawing ache. If anyone knows what that means?
I was treated for H.Pylori last year, but that didn’t work. The antibiotics did stop the stomach pain for the duration of being on them, but the side effects were absolutely awful. I came off of my Lansoprazole tablets about 4 weeks ago as I found out they had corn in them and wondered if the corn might be causing the pain, but so far the pain is still there. I just can’t figure it out. It’s getting me down a lot of the time and my stomach is often the size of a 6 month pregnancy. All of it swells up so huge, and it’s full of gas and inflammation to the point that I can’t sit or walk properly. It’s so uncomfortable. So this is what’s happened to me over the last couple of years, but below I’m going to comment on what I’ve been told and have tried.
Gastroenterologist – I paid to see a private gastroenterologist and I had a 45 minute consultation. I found out I have gained about 12-14 pounds during this time, for no reason (I’ve actually been eating less). He couldn’t find anything physically wrong, or feel anything, but he did say a few interesting things. He said I wasn’t really a candidate for getting a stomach ulcer, the treatment rules out H.Pylori, and I’ve also had the blood test to show I wasn’t Celiac. He did say a lot of my symptoms are very much like IBS (which I know) and that we need to rule out anything that could be mimicking that (like SIBO – Small Intestinal Bacteria Overgrowth) and he also said that my Ehlers Danlos can have large effects on my nerve endings and my digestive system, which means mine is hyper sensitive and stretchy.
SIBO Test – I went through and had the SIBO test last week at the hospital and it meant I had to starve for about 16 hours in total. It was incredibly uncomfortable as the longer I go without food, the more the pain in my stomach worsens. I then had to drink a glucose substance and breathe into a breath monitor every 20 minutes, 5 times in total. This test came back negative (even though I was certain it would be positive) and it’s put me at even more of a loss. I’ve read that there are numerous substances the bacteria can react to and glucose isn’t always effective, plus it can take hours to go through your small intestine, so it might not have been accurate. I’m still debating right now whether or not I should try the treatment for it, just in case the test was wrong, since it would make so much sense for me to have it, but I don’t know.
Dietician – I met up with a dietician in July and I wasn’t too impressed with that. It was via the NHS and I don’t feel like I was taken seriously at all. She said the weight gain is because I’m older and not very active… When I know it’s not. I’m eating the same foods and as active as I was before (unless I am in pain) and I’ve aged about 2 years. That to me was ridiculous. The letter she sent back to my GP was also completely wrong as she only listed about 5 foods on there that I can eat. She also said that I need to try and eat the foods that cause me problems to see… but I already know they hurt. The only thing she did say that I did think could be possible, was the fact that sometimes having something like Gastritis could have damaged all my digestive enzymes, so I no longer have the ones that break down my food groups. This did make sense to me, but I wasn’t really given anything more on that or how to fix that issue. That was just left hanging in the dark. What are anyone’s thoughts on that?
Supplements – For my Leaky Gut and my overall digestive health, I’ve been taking a mixture of L Glutamine to help with the healing, and digestive enzymes. At first, I wasn’t sure if this was going to help, but I do think the L Glutamine is doing something to help my gut, but the digestive enzyme is the best. If I take 1-2 tablets of those after my meal, it is a lot easier for me to digest and cope with, however I do tend to get constipated sometimes when taking them, and I’m not sure why. I’m no longer on medication so the only things I am taking are these two. I’ve tried Slippery Elm and didn’t get on too well with it.
Symprove – I had to come off my Symprove for about 10 days before my SIBO test as it could have interacted with the results as it’s live bacteria. The time off of Symprove proved very difficult though. I was having more and more stomach upset and frequent bathroom trips, which I knew was because my body wasn’t enjoying not having its friendly bacteria daily. The day after my test, I was literally overjoyed to be taking it and despite the vile taste that I can never grow to like, I am so happy to be back on it. It genuinely helps with my cramps and the feeling of my gut lower down, but not my stomach issues since that’s separate. I wasn’t sure at first if Symprove would really work as it took so long to get into my system (3 months), but now I know it does and I don’t want to be without it.
Spontaneous Food Intolerance’s – So when I was speaking about my food intolerance’s before, Wheat, Egg, Yeast, Mushrooms, Onion, Cabbage, and Milk seem to be the main ones for me. They cause me gas, bloating, bathroom trips, and nausea, however one thing I have noticed is that it’s not with all the same food. Sometimes I am able to manage fresh baked bread with no problems. Sometimes I can handle something else I shouldn’t eat, and then other days, all hell breaks loose and it’s absolutely awful just from consuming a small bit. Or, what’s even more confusing, I might not have eaten anything at all that’s a trigger and my stomach has swollen up to look pregnant again… There’s no consistency and I don’t understand what’s going on here. What’s even worse is if I consume gluten, my nerves burn on my arms and I get cystitis pain, however that gnawing ache in my stomach vanishes and I don’t have the pain there, instead I have external nerve pain. Why?
Final Thoughts – I am waiting to see a consultant about my Ehlers Danlos and see if that could be related to Small Fiber Neuropathy which is causing nerve pain all over, including my digestive system. But that’s it, I have no idea where to go from here. I’ve come so far, but I have gotten nowhere. It’s really difficult for me to even begin to explain how hard it is on me mentally now. I can almost never go out to eat, if I do, I can’t eat and just sit there with others who are eating and endure the questions and odd looks. There’s only one restaurant I can go to safely. The fact that my stomach is so unpredictable and painful most of the time causes me to get stressed out more, but stress isn’t the root cause of this. I don’t think I can go through the rest of my life living off of potatoes, fish, chicken, and restricted vegetables and fruits. I don’t enjoy any of the food I am eating and it’s still making me gain weight. It’s also getting hard for outfit shoots when I’m so swollen as well. I can’t really travel anywhere without suffering either, so it’s impacting my life hugely. So please, if any of you know something you could suggest for me or know of any possible causes, I am literally all ears right now. Thank you!