The dietitian has changed things again! I saw Kara on February 6th to follow-up on the low FODMAP diet. As I mentioned in my last low FODMAP roundup, the diet really didn’t seem to be doing anything for my symptoms. Since it wasn’t helping at all, she took me off the diet completely! Of course, I’m still eating sort of low FODMAP since I still have so many groceries… but I’ve been able to eat some of my favorite foods that were taken away from me (burritos is a big one).
Obviously, we have just changed what we’re going to do. For now, I’m on a free diet (I can eat anything I want), but it won’t be staying that way at all. Nope. We have moved forward with the LEAP/MRT protocol. LEAP = lifestyle eating and performance, and MRT = mediator release test. I got my blood drawn for the testing February 10th, and it’ll take a little bit for the results to come back.
What exactly is LEAP testing?
Well, in short, it’s a blood test that checks for food sensitivities. Now, these are not IgE allergies (the kind of allergy testing that is conducted on the skin at an allergist office) but are “allergies” that trigger a mediator release of some sort. From Oxford Biomedical Technologies’s website: “It’s the release of cytokines, histamine, leukotrienes, prostaglandins, etc., from neutrophils, monocytes, eosinophils and lymphocytes that lead to all the negative clinical effects a food sensitivity sufferer endures.” As you can see, it is still an immune response, but it’s far more complex than the typical IgE allergies. The IgE testing – the skin prick testing you are likely familiar with – is unreliable for foods, especially in people with multiple environmental allergens such as myself. There is a very high false positive with the skin testing, and false negatives are also a very real probability. If you remember, I actually had skin testing done back in August 2015 that showed I was allergic to yeast, chocolate, beans, and aged cheeses. However, since I get almost no symptoms from any of that and the skin testing for foods is so unreliable, my dietitian has told me I may move forward as if I am not allergic to any of those.
Since we have to wait on the blood test results to come back, I do not currently have any restrictions. However, she does still want me eating every three hours. Normally, that’s a gastroparesis type of diet to help keep the digestive system active and moving. Even though I don’t have gastroparesis, I definitely have some sort of motility problem so we are going to leave the frequent eating in place for now.
What is the test checking?
Kara ordered the full panel check for me. This test will check 30 common chemicals and 120 foods. You can see the full panel on Oxford’s site, here (it’s the LEAP 150 panel). Included in these chemicals are medication components like acetaminophen and ibuprofen, foods dyes like red #3 and yellow #5, naturally occurring chemicals like fructose and caffeine, and synthetic chemicals like MSG. With 120 foods, it obviously checks quite a huge range! There are all the common nuts (pistachios, cashews, peanuts, and even coconuts), tons of fruits (citrus fruits, grapes, berries, etc), vegetables, meats, grains, everything! Seriously, I’ve never seen a more complete list. With the extensive food specific testing, and the chemical testing, there will be very few foods we don’t know about at the end of this!
What happens when the results come back?
Unfortunately, this gets extremely complicated. Obviously, it depends on the results. The results are reported with a bar graph next to them showing reactivity. The low reactive foods are green bars, then yellow bars for moderately reactive, and red for extremely reactive. The bars are also scaled, so the foods I barely react to will have tiny green bars, and then the super reactive foods will be giant red bars! First, we will be checking out the most reactive foods (red bars), seeing what those are (at least, that’s what I’ll be looking at first!) and probably eliminating them permanently. She didn’t say we would eliminate anything permanently, but I’m assuming that they’ll be eliminated for an extremely long time. Then we look at the green bars.
The foods with the tiniest green bars will be considered first. Our immune systems can remember foods for about 20 years, apparently, so even if I haven’t eaten something in a long time my test results should still be accurate for that food (like all nuts). However, some of the tiny green bars could be foods that I have never eaten in my life, which means they will be eliminated from my potential diet (at least at first). Then, based on my environmental testing, we will eliminate everything except about 15-20 foods/chemicals from my diet. The 15-20 smallest green bars will be the only things I’m allowed to eat for the first two weeks! Yes, that will be it! If rice is one of them, I can have things like rice pasta, provided the ingredients list says “rice flour, water” only. Those first two weeks are going to be complicated, to say the least. However, she thinks that I will have a significant reduction in symptoms by day 10. These aren’t just gastric symptoms; they’re general symptoms like “muscle pain” and “sinus pressure!” This is very exciting to me, as I’ve struggled with these things forever and I don’t even know what I’d do if I woke up without feeling like that.
Then, if everything goes well, we will slowly add in more green bars. This happens slowly, based on symptoms, and can take several months! (She said six months or more is possible.) I believe at some point, late in the diet, we will get to try yellow bars and gauge symptoms.
Wait, why did I say “based on my environmental testing?”
I am getting my environmental allergy testing redone in about a week (February 24th) with the super-specialist immunologist. Unlike food allergy testing, environmental allergy skin testing is fairly reliable. We already know I’m allergic to a ton of environmental allergens, but this will give us a clearer picture of where my allergies are right now. (Every single test I’ve had gives me different results.) There is a thing called “oral allergy syndrome,” which is where you are allergic to a specific type of pollen but not a food, however you react to the food when you eat it because it’s proteins are very similar to the pollen proteins you’re allergic to so your body attacks it anyway. There are also a lot of other cross-reactivities due to similar mechanisms that occur on a systemic level (not just in the mouth). Unfortunately, that will impact what I am allowed to eat. Even if I test as non-reactive to apples, I will not be allowed to eat them because they are one of the most common foods to cross-react. I love apples, so I’m sad about this (plus there are apples in everything).
Does anything else impact your diet?
Yes, sadly, my eosinophilic esophagitis does. Even though this diet should dramatically help my eosinophilic conditions (we suspect I have both esophagitis and enteritis, and possibly more), it does impact what we’re going to be doing with my diet. Kara is thinking of also doing the six food elimination diet at the same time, even if I test non-reactive to any of the foods. The six food elimination diet for eosinophilic esophagitis eliminates soy, dairy, eggs, wheat, shellfish, and nuts. I already don’t eat any nuts, and most will probably be eliminated due to the cross-reactivity of them, nor do I eat shellfish, so those won’t really be problems. However, if you’ve read any ingredient labels lately, soy is in everything! I’ve already done this diet once, and soy was the first thing we reintroduced because it’s so hard to find foods without it! I also absolutely love dairy, eggs, and wheat products, so that is pretty heartbreaking to me that I’ll likely be eliminating them again.
Is it worth it?
Obviously, I haven’t started it yet, so I can’t answer this for sure. However, Kara is all but guaranteeing that I’ll get noticeably better on this diet! Apparently, she has another client with a lot of autoimmune conditions (psoriasis, eczema, etc) that has benefited dramatically. And all the research points towards it helping dramatically. I’m cautiously optimistic about it. I really want it to help, but part of me has kind of accepted that I may never find relief from a lot of my symptoms – I’ve lived with severe allergies, chronic pain, and severe IBS problems my entire life. However, I think if anything can help it will be this!
I am very worried, however, that everything will come back with moderate green bars (or worse). I’m really not sure what we will do if that happens. Part of me is terrified she will want me on some sort of elemental formula for two weeks, or that I’ll only get to eat five foods instead of fifteen. The reason the two weeks is so strict is to allow the immune system to “reset” itself and stop “freaking out.” To me, it would make sense to go as extreme as formula or similar to get the system to calm down. Though, she may have other tricks that would prevent that.
So, I’m quite nervous, but at least I’ll be getting a lot of answers about my food sensitivities! This will be a huge journey, and I will definitely document it! I may not do weekly posts with my food lists, since this will be such a long journey, but I’ll definitely do regular updates (based on what is going on).
Fingers crossed that I am not super sensitive to my favorite foods!!!