This is my story. Here's to hoping it helps you or someone you love!

APRIL 2018 //

It's been a roller coaster of seeing different doctors off and on over four years now. I'm disheartened that that it took this long to even consider food as factor.

And for full disclosure, I am still newly "diagnosed" but the changes have been so dramatic that there's no doubt in my mind there is a food-gut connection, so I'm sharing my story early in the hopes it helps you, or someone you love because, honestly, I got lucky that I sort of stumbled into this discovery. Gluten, specifically, was certainly never a go-to possibility for any doctor that I saw, at least not directly. And, frankly, I feel like that needs to change!

Ok, so as I mentioned, I've been dealing with strange issues for a solid four years now. At first they ebbed and flowed with no rhyme or reason and in 2015 they even seemed to get better for a bit. But, a few months after having my third child, things came back and then my symptoms flared in the spring of 2016 at a time when I believe my immune system was weak and that's when my symptoms were worse than they had ever been, with significantly more bad days in a month than good.

Debilitating fatigue 1-2 hours (after waking from a full night's sleep) which I would know would be setting in because my head would start to feel strange and I would feel dizzy and out of it, almost as if I had just downed a couple strong glasses of wine. And my hands hurt with arthritis (stiff and joint pain worse at night and in the morning but also persisted throughout the entire days some days) and were weak, and my I would also have pins/needles sensations in my feet up on waking. None of this was normal for a woman in her mid-30s.

At first I was seeing primary care docs who would all run regular blood tests, finding low iron and/or ferritin (but not alarmingly low) and a slightly elevated sedimentation rate, but didn't seem too concerned. I was told "take an ibuprofen" and it was suggested I was I might just be stressed and could try out an anti-depressant. Not happy with this course of treatment, I continued reading up and at that point in time, with my hands and (and also both knees) having arthritis pain daily, I honestly believed I had rheumatoid arthritis since both of my grandmothers have it and the symptoms are SO very similar. After waiting three three months to get into a specialist, the rheumatologist ran the basic RA tests (all normal) and also ran a lyme test. When everything came back pretty normal, the dr told me to (and I'm not kidding here) take an ibuprofen for the pain and didn't suggest any other course of action. 　

Feeling extremely down and increasingly frustrated that no one was believing me, I went to see a integrative/holistic doctor that my friend recommended. He sat with me for an hour and listened to all of my admittingly strange, but very real symptoms. He started me on some supplements with the idea of building my immune system back up and, after a few appointments, also recommended I consider removing gluten, dairy, and egg from my diet for awhile since those food groups exacerbate inflammation. This was around Christmas and I was feeling really awful and, again, desperate to try anything that might help. I honestly didn't really think that the food would work (and in a weird way at first I didn't even want it to work because *not* eating those things also seemed awful, in a different way) but I had nothing to loose.

So, just a few days before new year's, I cut those foods out cold turkey. A little unsure of what I actually could still eat, I was apparently not eating enough and every time I turned around was starving! I eventually learned I could have a much chicken, veggies and fruit I could handle, so pretty much stuck to that and, within a week all the fatigue was gone! It was the first time in almost 9 months that I had such a long stretch of days with no crazy fatigue and drunken feelings. The joint pain still persisted during this time, but overall I was thrilled with any change for the better!

But, after my cycle that next month (a time when my symptoms would always be predictably worse), everything came back and I was devastated. I felt foolish for thinking the food fixed me and made an appointment with another new doctor. When went to see him and gave him my health history I mentioned that the only time I saw relief was when I removed gluten, dairy, and eggs. He asked if I was still gluten-free, to which I admitted that I had gotten lax on my diet. When I first removed those foods I was super strict, but then I started buying and eating things that said "may contain trace amounts of wheat" or "made in a facility where other wheat containing products are made" and I was still occasionally eating fast food that were "likely" not to contain gluten, and I was also still cooking with things like regular glutened soy sauce or dressings, or even just out-right letting myself have an obvious gluten food from time to time.

Basically, I started thinking it was ok if I let a little gluten creep in here and there. I assumed that since I was pretty sure I didn't have true celiac disease (I don't present any of the gastrointestinal symptoms that most celiacs do), that it wouldn't be a big deal if I let a little gluten get in here and there. He corrected me and said that no, it is possible that i could have NCGS/NCGS (non-celiac gluten/wheat sensitivity) and that any amount would still cause problems. This was to my surprise, of course. He told me to go home and do two weeks gluten free and see what the result was. He also ran the celiac blood test, but said that it is frequently inaccurate (the test often gives false negatives) and that the true test is really just to eliminate it and see if anything changes for the better.

I am happy to report that within 2-3 days of removing gluten almost ALL of my problems were gone! It is/was crazy! It is so hard for, even me, to believe that all of my issues were caused by food.

I should note that I am still experimenting with removing foods to try and improve things even further. I still occasionally have "fat", tender feet (meaning they feel slightly inflamed but they do not appear visibly swollen) and hands that also feel "fat" in the morning and I am trying to see if there is a connection to another food. I mentioned egg earlier because I think that this is another food that triggers these symptoms as well. One morning the other day I felt a little off (slightly fatigued and a little dizzy) and I started reflecting on what I had the day before and I realized that I ended up eating two slices of gluten free bread and half of a gluten free english muffin, both of which had egg in them. I am also dairy free currently, but I've tested this a couple of times and so far I don't seem to have a flare up when I consume it, but I'm still omitting at the present time.

I've been reading up on "leaky gut" and I really think there might be something to that. I'm majorly summarizing here but, the theory is, for certain people who's gut or immune heath has been compromised, that the small intestine becomes stressed or damaged in some way and then begins to allow things that have no business being in your bloodstream to enter your blood (like gluten proteins, toxins, bad bacteria, etc). This then creates a host of problems which manifests itself in different ways, depending on the individual. And yes, it can even cause problems with brain function and neurological symptoms - called gluten ataxia.

If you decide to cut gluten from your diet and notice positive changes, it's worth also mentioning there are foods that have an apparent cross-reactivity where, essentially, your body temporarily *thinks* those other foods are also gluten and, therefore, certain other foods can also trigger symptoms. This is where I think my egg sensitivity might be coming from and I also think there may be another cross-reactive food that might also be causing the issues I'm still having. Here's a link for more info about gluten cross-reactivity.

And, in case you are wondering, yes, my blood test did come back negative, as my doctor said it might. I'm so glad I didn't just rely on this test alone and moved foward with an elimination diet.

I wonder how many times doctors do not even suggest food as a possible factor and, instead, start with pills as a first-line treatment. Even the the doctor I mentioned above said that if I didn't see any positive changes with the diet, that I may have fibromialgia and chronic fatigue syndrome and that he wanted to start me on lyria and cymbalta to see if those would help. Those are serious drugs that, while effective and appropriate in some cases, in my personal opinion, should not be taken without first truly trying to rule out and/or treating other possible underlying issues. I would much rather try an approach that can heal my body, vs something that just tames the symptoms, often temporarily. Afterall, these type of drugs come with their own adverse side effects, some which may even be worse than what the person is being treated for. When I asked how long I would have to be on those before it was determined if they were effective, he said he starts people on a low dose to get their bodies used to it and then works them up to the "normal" or highest dose they can tolerate and keeps them there for a minimum of six weeks before making a determination. Again, I think that for some who aren't dealing with other underlying issues, treatments such as this make complete sense, however, it's my concern that there may be a subset group of people who have similar symptoms, but have never been presented with the idea that something else might be going on that is causing their symptoms in the first place.

While it seems overwhelming at first, removing foods isn't really that bad, especially when it compares to being on medicine. I love that it is a natural approach to trying to heal my body and, therefore, cure symptoms. I found that getting started was the hardest part. Learning what I couldn't eat and then all of the things that I could! There are still so many foods that I can eat, I am just rethinking the way I cook for myself and my family. Eating out is definitely a challenge and I suppose that's what stinks the most - when I want to be lazy and I can't; or, when it's convenient for my family to eat on the go, but yet I still require special arrangements; or, when I am eating in a social setting (whether out with family/friends at a restaurant or at their home) and I don't want to cause a scene by mentioning it. I'm still learning how to navigate all of that, but, again, I would welcome this any day over medicine am grateful for healing to take place so that one day I may even begin to eat some of the things I can't currently. If there is in fact a leaky gut component, in my situation, the thought is that once you heal your gut, you can begin to reverse the entire process and eat normally again one day!