If you want the whole story, start with Part I
After seeing such a strong reaction in Tavian, Cole and I decided no more dairy. We decided to make the commitment as a family because I wanted to protect Tavian from these changes as much as possible. After all he is 4 and I wanted to protect him from having to experience this type of relationship with food. Turns out that isn't really possible, but it was my original hope and intention. We still don't keep dairy in the house because I don't like the idea of eating things in front of him that he isn't able to have. It meant switching to Almond Milk, finding dairy free bread, using olive oil butter, and no cheese or a cheese alternative when needed. This initial switch was daunting for the first few days just trying to make sure we new all the different ingredients to avoid, but after that it wasn't super difficult. The thing I missed most was pizza and calzones, so we just started making them every so often and using a non dairy cheese substitute. Not too bad!
Tavian's behavior did seem to continue to change for the better. Don't get me wrong, he is still a 4 year old rambunctious boy, but there was definitely a tangible difference. And some of his skin issues seemed to clear up. And if we did end up cheating (for example eating out while Cole was on a business trip and I couldn't make sure there was zero dairy in all of the food) his skin and behavior seemed to be noticeably affected.
So all of that was good. But, of course, the story doesn't end there. Mother's tuition came into play again and I had this feeling that there were still probably other intolerances in his diet. After all, if he had one significant intolerance, chances are there may be more. Plus, although things were improved, I still felt like randomly he was being affected.
This is where the story gets a bit controversial. I had heard about doing a blood test to measure food intolerances and found out I could get them done through a chiropractor here in town. It is a pricey evaluation and test so I knew we had to wait until September to save up for it. I was hopeful this would give a thorough evaluation of all the different foods Tavian was eating. This is controversial, or course, because depending on who you ask this is completely unreliable. I had the chiropractor telling me that Tavian had a leaky gut and was going to have huge medical issues down the road if we didn't eliminate these foods. At the same time our family practice Dr. told us it was a load of crap and that he had seen people turn their lives upside down trying to eliminate all of these things and saw no difference. So, what are you supposed to do?? Who do I believe?! Let me tell you, it is hard not knowing which way to turn. I so badly want to protect Tavian and make the decisions that are best for him, but like other areas of parenting, sometimes it is really hard to know which decisions are best.
Well, we actually had already gotten the blood test before hearing our family Doctor's perspective, and I don't really regret that because I think it was something I would have wanted to do eventually anyway. I am one of those people that seeks answers. If it isn't going to cause harm, then I always feel like trying anything, exploring all the options is totally worth it. So we got the results back from the blood tests and it was not good news. According to the results it said Tavian couldn't have dairy, any grains what-so-ever, eggs, soy, peanuts, citrus fruits, almonds, legumes...this list goes on. Talk about defeating. And so very overwhelming. For probably two weeks Cole and I tried to implement the new changes and really give it a go. Pretty immediately we realized it wasn't going to work. At least not all at once. It was just too much to take in at once and as much as I wanted to be helping Tavian, it felt more like I was failing him by not being able to provide him with any nutrition that he enjoyed. I get that some people think food is all about the health aspect. I get it. But I'm not talking about wanting to pump him full of sugar. I just wanted to give him a peanut butter and jelly sandwich, or pancakes, or some fruit with yogurt and granola. (plus, I'm the first to admit that I think eating healthy is great, but I also believe in yummy food, and treats, and enjoying the food we consume!) It was just very hard. Pretty quickly we decided we had to allow eggs at least for the time being. I was struggling with what to give him for breakfast and also with making other items from scratch without the use of eggs. I know it can be done, but was just too much for me to handle at the time.
So that is how we lived for a long time. And it was hard. And not all that fun. And I felt like I was constantly failing. I made numerous attempts at healthy "treats", or pancakes, or bread, etc, and it was always such a let down when Tave would try it and not like it. (don't get me wrong he was super sweet about it. "thanks for trying mom. I like it, but I think I probably won't eat anymore". Lol. And I couldn't blame him. It was pretty horrible!) We tried sunflower butter but he didn't like it. I think it was the combo of things too. Maybe regular bread with sunflower butter and jelly would have worked. But altered bread and unfamiliar "peanut butter" made for too much of a change. Or pizza with alternative cheese is doable when the crust and sauce are yummy and familiar. Or even a gluten free crust is maybe more tolerable when you are using normal, delicious mozzarella. But combining all of these changes just seemed to be too much for him. I think I could do fairly well on this diet...it wouldn't be easy by any means...but I think I could do it if I needed to. But that is also because I love salads and all kinds of vegetables. I think it is asking a lot of a 4 year old.
Anyway, after a bit we decided to make our main focus dairy and gluten (and soy if possible because I don't like soy anyway!) But soon we were feeling really burnt out (especially because it is hard to make such a large commitment when you aren't 100% sure it is necessary...does that make sense?) and our Doctor's words were definitely in the back of our minds. Cole and I decided maybe we would just go back to no dairy. After all, we saw that reaction first hand and we needed a little break from the craziness. Well, let me just tell you, crap got crazy around here! After one week of eating grains again Tavian went insane. Practically intolerable behavior. And skin issues flared up. During these periods of time life is not fun for anyone. Tave and I struggle getting along, he is more apt to bug his siblings which makes my job entirely more exhausting, and I know that Tavian must be feeling really crappy. Even his teachers (who are so supportive and understanding in regards to all of his food needs) noticed a big time difference in his behavior. :( It was so sad to see.
So we immediately changed things up and went back to specifically no gluten. And within another week of a strict no gluten (and no dairy) diet we had our little boy back. I know it sounds crazy. But if you experienced it you would understand. It is very hard to verbalize the difference but it is definitely there!
About this time my sister-in-law took her daughter to Children's Hospital in Denver to see a pediatric allergist. She had a really positive experience and referred me. Once again, I really wanted to see all sides to the story and I think it is worth making every effort possible to find an answer. I felt like there had to be happy medium between my Doctor and the Chiropractor. And who better to ask then someone who specializes in allergies and in little kids. So at the end of December we made the trip to Denver and saw Dr. (currently blanking on his name) and although we didn't get a ton of answers, we definitely got helpful information and I think it was a great stepping stone in the right direction. Once again they performed the skin test on Tavian's back. He was negative for all food allergies and reacted to the same environmental allergy he had when he was younger, as well as to dust mites.
But the allergist did help explain the differences between intolerances and allergies to foods, and really did meet us in the middle. He basically said that intolerances do exist, but that they don't have the capabilities yet to test for them. He said parents research and intuition is the best place to start with concerns like this. When we presented him with the blood results given to us by the chiropractor, he explained that they were tests for IgG and IgA responses (basically the immune systems response to the food) and that every food would react to some degree because every food is initially foreign to our bodies. When Cole questioned why some of the foods came back more severe then others therefore considering Tavian intolerant to them, he said that it probably very likely correlated to which foods Tavian ate the most. And that he would be much more worried if all of the foods came back with no reaction because that would worry him that Tavian's immune system wasn't working properly. So obviously a very different interpretation then that of our Chiropractors...and many other believers. I don't' know exactly what to believe, but I will say that overall that explanation makes sense to me. After all, all the high offending foods were the ones that Tavian ate the most of. And I have since talked to someone who had the same test done, changed her diet, had it done again a year later, and all the new foods she was eating became the high offenders. (for example, if she first took the test and almonds were "offending", she switched to eating peanuts and the next time she had the blood test peanut showed "offending". Make sense??)
So yeah, this is a lot to take in. But seeing the specialist was great. Because we also talked to him about a different symptom that I hadn't really mentioned much to anyone else. Tavian burps all the time. all.the.time. They are silent air burps and they drive me crazy but he has no control over it. This, and other symptoms, led the allergist to recommend we get Tavian tested for Celiacs Disease and make an apt. to see a pediatric GI specialist.
The BIG bummer about getting him tested for Celiacs is that he has to be ingesting gluten in order for the test to be accurate. :( So as of Tuesday we started adding it back into his diet. And slowly but surely things have gotten hard. Today was the first full day of extreme difficulty. It is so frustrating on all counts that we had to do this again. But we want answers. And Tavian deserves answers. He deserves to feel good.
So the journey continues. Hopefully in the next 2-3 weeks we will have him tested for Celiacs and in with a GI specialist shortly after. If you think of it, please pray for my little guy. I don't hope he has Celiacs...it actually really makes me sad that it could be the case...but more then anything, I want answers. Please pray we see the right Doctors, get the right tests, and are able to find answers. And pray more then anything that Tavian can feel good!! (and that this Momma doesn't go crazy in the process!)
Stay tuned for Part III...let's all hope the last in this crazy journey!
p.s. I realize that the above could be interpreted as me implying that the IgG blood test was a total waste. Although I don't think it was entirely reliable for Tavian, or that it provided us with all of the answers we needed, I do think it can be beneficial and I am by no means trying to dissuade someone from looking into it. I actually would be very interested one day to see what my results were. I do believe in food intolerance. I do believe the things we eat matter and can make us feel good or bad. But I have also since learned that in general these tests can unreliable in someone Tavian's age. So maybe don't pursue until they are older. Plus I think it would be far more beneficial when the person is old enough to really understand how their bodies are feeling and adequately verbalize those feelings to others. Another tall order for a 4 year old. Ok, just wanted to clear that up a bit!
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