I haven’t written a post just about our day to day life in a long time. Some of you have been reading my site since 2005 and have followed me through childlessness, a pregnancy, numerous church changes, theological changes, a move and so on up to the present time. I thought as we get ready to head into a new school year I’d catch everyone up on life around here.
Eosinophilic Esophagitis
If you’re one of my long-time online friends, you know I’ve been battling physical issues for years. This spring we were finally able to figure out one of the issues plaguing me. After working with my new allergist for over a year, we determined via scope and biopsy that not only do I have Silent Reflux but I also have Eosinophilic Esophagitis (EoE). In layman’s terms, I’m having an allergic reaction in my esophagus. White blood cells are attacking things they aren’t supposed to be attacking. (Or as one fellow EoE person put it… We’re supposed to have well trained soldiers in there taking care of us. Instead we have drunken hillbillies shooting randomly.) Just in the past month, there was a huge announcement that researchers from the Cleveland Clinic have determined the gene responsible for EoE. Hopefully this will lead to better treatments. But it is clearly genetic so at least I know I didn’t do this to myself.
It seems fairly clear that EoE is caused by food and environmental triggers although they still aren’t certain how much each plays a role for each person. It seems that environment does play a role as people seem to experience worse EoE symptoms in the spring and fall when outdoor allergens are at their worst. All of the EoE people I interact with in online forums have said that this year has been brutal for them which coincides with one of the worst allergen seasons in quite some time the US. Stress makes EoE much worse. And inadequate sleep.
The Silent Reflux diagnosis last year changed my life considerably. I had to give up many foods (regular coffee, pop, onions, tomato-based products, peppermint, many berries, juice, lemon, mustard, pineapple, etc.). The EoE on top of the Silent Reflux coupled with my Oral Allergy Syndrome has completely disrupted our lives. It has been hard on all of us over the spring and summer. I’ve been working my way toward a major elimination diet, but can’t come up with enough food to eat to feel well while on it. So I’m trying to introduce new foods that I can eat on the elimination diet, but have to do that carefully when I feel well so I can determine if I’m reacting to them. For example, sweet potatoes are a big plus on the elimination diet. Except I’m apparently part of the population segment that doesn’t deal well with the starches in sweet potatoes. And so on.
I’m trying to get to the point where I can follow the Autoimmune Protocol (AIP) for thirty days and then reintroduce foods to hopefully expand my diet. That means no dairy, no grains of any kind (rice, bread, pasta, etc.), no legumes, no eggs, no nuts, no nightshades (potatoes, bell peppers, etc.), no corn, no soy, no seeds, no chocolate, no coffee… I think that is it. The AIP has you include fish and seafood, but the standard allergen elimination diet does not include them so I have taken those out too. Drinking bone broth is supposed to be a big part of the healing plan on the AIP. I’m sure no one will be shocked when I say that I’m one of those people who doesn’t react well to the bone broth. At the very least it bothers my reflux although I think it is more than that. To be honest, I’m skeptical I can even get to the point of doing the AIP which leaves me wondering where to go next.
I met with a standard nutritionist about a month ago and it wasn’t really helpful at all. I pulled out my three ring binder of all the information I had collected along with a two page description of what I couldn’t eat, what I had tried, etc. and I think she was overwhelmed since none of her standard dietary roadmaps would work for me. Kind of depressing in a way, but I also knew that I had already done a ton of research on my own that was very specialized so I wasn’t surprised when she couldn’t help me.
So if it sounds like I’m not left with much to eat, that’s the truth. Because of my Oral Allergy Syndrome, there are many fruits I cannot eat. And now things that have never bothered me (red grapes and raw carrots, for example) are now bothering me. I’m eating mostly meat, a few fruits and veggies, and some gluten-free snacks I’ve found that don’t seem to bother me. I’ve switched to (expensive) higher pH bottled water because water (even filtered through a Brita) flares my reflux. And Starbucks mochas. I cannot drink a cup of coffee any longer, but mochas with coffee, milk and chocolate (all bad for reflux) do not bother me. Go figure. But in order to get on the AIP I have to eliminate the mochas and all the gluten-free products because they all contain things I can’t have on the AIP. But I can’t get enough calories and fat to function without them.
If it sounds nuts, try living it for a few months and contemplating if the rest of your life will be this way.
If you can walk into your kitchen today and cook and eat whatever you want, I hope you will get down on your knees and thank God because I truly had no idea how good I had it before all of this started. I cannot eat anything at a restaurant or carryout at this point. I have to cook everything at home from scratch with so few foods that I’m starting to deal with food fatigue where I basically don’t even want to eat a lot of the time. Naturally I don’t expect Caroline and David to eat with the same limitations so trying to cook well for them and cook something else for me is getting old. On top of that, food in general has become stressful for me because I feel like I can no longer predict how my body will react to things and so wonder every time I eat something I haven’t eaten in a while if it will cause a reaction.
Because the outside allergens have been so bad this year and I’ve been trying to get the EE under control, I have been inside all summer. With the windows closed. We’ve missed a wedding, cancelled plans with friends, etc. all spring and summer because I’ve felt so unwell so often. My world has become very, very small. We haven’t been to church since January (but that’s another story).
(We’ll skip over the hiatal hernia details as well as the fact that I’m a 47 year old woman – if you know what I mean. And the fact that my scent sensitivities continue to worsen.)
What are the bright sides?
Well, I can eat bacon! LOL!
It could be much worse. I’ve interacted with people who have very extreme EoE. Every time I get frustrated, I remind myself it could be much, much worse.
Probably the biggest blessing is the fact that I can work from home and stay connected with people through the internet. I cannot imagine going through this with a regular job. I cannot imagine going through this without the internet.
A Gifted Daughter
So while I’ve been trying to deal with all the health stuff, I finally came to the realization that Caroline is a gifted child. It actually took another homeschool mom pointing it out to me after reading my blog to come to this realization.
As evidenced by the topics on my site, I’ve always known that Caroline had unique traits. But I never really researched the gifted angle seriously because… I don’t know. I just didn’t. Even though I’m gifted and qualify for Mensa so it would make sense she would be gifted, I just didn’t zero in on this with her. Maybe God’s restraining hand? However, after digging into the reading I have zero doubts. Some of the characteristics made me laugh out loud because it’s just SO OUR LIFE! There was one list in particular that zeroed in on some very. specific. things. that just astonished me how accurately they described Caroline.
I’m not going to say much about this here since I try to protect Caroline’s privacy online. But a gifted child is not the same thing as having a smart child. Gifted is different and it brings with it a whole set of challenges and opportunities. Like most gifted kids, Caroline’s development is asynchronous in some significant ways and so I’m struggling to determine the best ways to meet her needs and address areas that need focus. And have all of us stay sane in the process.
The Long-suffering Husband and Father
God knew what He was doing when He put David and me together. And He knew what He was doing when He gave Caroline the parents He did and vice versa. We know beyond a shadow of a doubt that God created our family and equipped us for each other.
That said, David has had plenty of opportunities to earn many jewels for his crown in heaven. Dealing with an intense, gifted child and an intense wife with health issues… Pray for him! LOL! Seriously! He really has to deal with a lot every day on top of trying to run a business, take care of a home, etc. We have one very specific prayer request related to this that I cannot write here, but if you pray about it, God knows what it is.
Three Full-time Jobs
So I am basically juggling what feels like three full-time jobs right now. When I do it properly, the EE stuff is almost like a full-time job with appointments, cooking, trying to find things to eat, trialing new foods, etc.
Homeschooling and parenting a gifted child is emotionally intense. I could spend all day with her, finding things for her to do in her never-ending need for new experiences/items/ideas/books. Researching, planning, and executing it all for a highly-relational gifted only child could be a full-time job.
And, oh yes, my actual need to work. God has opened some amazing doors for me and I have enough opportunities and ideas to keep me busy full-time now. Between writing here, blogging opportunities, creating learning materials, etc. I can easily work full-time. And, honestly, I need to do so after all the medical expenses and lost work time over the past several years. But finding the time to do it is nigh unto impossible with all the other demands on my time and energy.
The Rest of the Story
So now you know some of the behind the scenes stuff. I’ll have to share about not having a church home another time. And life in Cute Little Town. And the adventures of Daisy and Rebecca, our American Girl dolls. (The blonde Daisy belongs to Caroline and the brunette Rebecca belongs to me. LOL!)
See you then!
Relax and Plan More Homeschool Fun
Wow! You have an amazing story and testimony! Thanks for sharing it. My family also have several health issues but are trusting in the Lord to lead us to a healthier lifestyle. It’s very difficult with extended family. 🙁
I will definitely pray for you and your family!
Just a question- Is there a website questionnaire of some sort that I would help me determine if my children are gifted? Thanks!
Thank you for sharing Sallie. It is lonely place in the EE world. My son was diagnosed at 18 mos. and continues to be a daily challenge. My oldest son has also been identified as gifted which is a nightmare in the public school system. I wonder every day what it must be like to go out without intense planning.
I am so sorry about your EE. What a frustrating life! I have chronic migraine which has taken up my life and led me to quit my job as a family doctor. I don’t have any words of wisdom, just encouragement. My hubby and I homeschooled our daughter though high school and our son until last year. He’s starting public school in the fall as a junior in high school. We now run a yarn shop – well, my husband runs the yarn shop and I help. Weeks like this last week, I only help a little since I had migraines every day. Other weeks, I help a lot. So, be encouraged. There are a lot of us with chronic illness who struggle through every day. Lots of prayers.
Sabrina,
There isn’t one specific page I would send you to. If you do a search of traits or characteristics of gifted children, you’ll find lots of information. After reading several I think you’ll start to see a strong pattern if you have a gifted child. It will just click.
Hope that helps! 🙂
Lori,
Oh, the stories I have read about the little ones with EE just break my heart. I can imagine how hard it must be with your son.
I’ve read sooo many stories of the challenges of gifted children in public schools. Realizing Caroline is gifted pretty much cemented that we’ll be homeschooling the whole way unless something really significant changes our mind.
I hear you about the intense planning to leave the house. It’s so much easier to stay home or stay here in Cute Little Town. Like I said in my post, my world has gotten much, much smaller over the past few months. Hopefully it won’t always be like this. 🙂
I am an adult male with EoE. I am allergic to gluten, corn, dairy, nuts, seafood, shellfish, chicken, pork, eggs, soy, lettuce, pears, peaches, mushrooms and cantaloupe.
I have strictly eliminated each of these foods and had bone broth soup for a year almost every day.
I am much better now I’m happy to say and am taking no drugs.
The reflux will dissappear if you get off all of the problem foods, but it is tough as corn and gluten are hidden in many many foods.
Good luck!
Sallie,
Big hugs…
I can’t offer a lot but I will say the part about raising a gifted child – it has gotten easier for us as she’s gotten older. She’s more able to pursue her interests independently now that she is 14. Homeschool classes/resources have helped tremendously for her.
She was HIGHLY needy for her first 8 years or life or so. Lots of attention needed. She is still a very intense child, but she is now able to dig into her “things” and interests more on her own with less needed from me. Now, don’t get me wrong I still have to invest my time (and want to do so) but I can find more moments for myself.
Hang in there…
Hi! I followed your GHF post from FB over here today:)
I’m have three gifted, high-energy boys. We have struggled with food/autoimmune issues.
Last fall, we did a modified GAPS diet. We couldn’t do eggs, dairy or nuts so it was lots of broth and veggies, probiotic foods and that’s about it;) The cool part is that it did help us. My older two sons experienced a lot of healing on that diet. The youngest one and myself are still struggling with it some and plan to try another round as soon as soccer season is over.
Prayers that you would have wisdom about what to eat and how to make it work and for healing:)
I recently subscribed to your blog and FB page. It has been a real blessing to me and I wish I had found it years ago. Not long ago I discovered my husband is an HSP and both of my children are spirited and sensitive. It has been overwhelming for me at times, as I am normally a pretty laid back person. I could never understand why everyone was freaking out all the time. LOL! I am learning more each day and wanted to thank you so much for your part in that journey.
I also wanted you to know that I prayed for your healing today. And as I thought of you and your dear family, I could relate to our own struggle over the last year and a half: mine with wheat allergy and my son’s with gluten intolerance and severe dust mite allergy. The roller coaster of feeling overwhelmed, to the pure sadness of seeing a loved one suffering daily, to a fear of food have all been battles we have had to face. At times, I must simply pause and remind myself of God’s promises to “Bless our bread and our water, and to take sickness away from the midst of us.” (Exod. 23:25) I also love Romans 8:11, “And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of his Spirit who lives in you.” Hope these verses encourage you as they have me.
I am sure you have researched your situation to no end, trying to find help and healing. I know I have! But I wondered, if bone broth troubles you, have you ever tried Great Lakes Beef gelatin? I mix some in a tiny mug of coffee each morning along with a product my chiropractor gave me called Intestinal Repair Complex. They have done wonders for heartburn, bloating, digestion and elimination. I feel God really led me to my chiro- doctor. She does nutrition response testing, allergy clearing and more. Not sure if your little town has a doctor who practices these techniques or not. I have also heard some amazing things about a doctor in Arizona who does hair mineral analysis with his patients. He treats distance patients by Skype or phone. He has had amazing success dealing with all sorts of autoimmune conditions. His name is Dr. Garrett Smith. If any of this info helps, great. If not, put it in the shelf. I pray that in the sea of information out there, the Holy Spirit will lead you.
Lisa,
Thank you for your prayers! I am praying God will heal me. I do believe He can! Thank you for the verses as well.
I do use the Great Lakes gelatin. I use the green can one in water. I’ve tried making things with the red can stuff and just cannot get past the smell.
One good thing is I discovered I can eat sweet potatoes. It was the olive oil I was roasting them in that was bothering me, not the sweet potatoes. Now I have a baked one every day with some ghee and maple syrup. YUM!
Thank you for your encouraging words! 🙂
Hi Lisa,
I had the same issue for about 1.5 years. My GI did the scopes and told me to take anti-acids. Needless to say, I felt absolutely horrible. Besides having burning, pain and fybro symptoms in my chest, I also developed gallbladder issue. The elimination diet, which you mentioned did help, but… I lost about 15 pounds, started losing hair and my friends started calling me worried when they saw my Facebook pics: I looked dead. I read enough literature to become my own nutritionist. Here is what finally saved me: I started taking Betaine HCL (I buy Doctor’s Best on Amazon), every day, with every meal (I still take it, but only once a day), to kill all the bad bacteria which was living in my stomach and destroying the closing valve between the stomach and esophagus. I started taking Zymactive enzymes (it is a brand, but you can take Papain and Pancreatin), plus digestive enzymes. My swelling in feet was gone and my stomach is now healthy enough to eat a lot of foods (I still don’t eat beef, nightshades, drink coffee, alcohol, and eat only organic low fat or fat free yogurt for dairy). Most importantly, I began to stop worrying about my esophagus. I don’t have GERD anymore. I feel so much better! Also, I am taking Natural Calm (Mg) for my immune system to stop killing me. My fibro only comes back when my little ones get me sick. I feel like I can homeschool again. I thank the Lord every day for this.
Thank you for sharing those suggestions! I research everything so I’m always open to hearing something that worked for someone else! 🙂
The bone broth thing makes me wonder if you are histamine sensitive. I am and I react to fermented drinks like kombucha and I read that bone broth is high in histamines.
I think that is likely. I still need to figure that out too.
Hello,
I came across your website while I was researching giftedness. I have been struggling with my 7 year old daughter and it has been recently pointed out to me that she might be creatively gifted. I tried opening the link to the forum that you have mentioned in this article but I have been unable to do so, for some reason. I would greatly appreciate it if you would be able to give me links to websites and forums that will help me confirm whether my daughter really is creatively gifted or not. I’m rather lost right now. I live in a country that greatly lacks in resources identifying and helping children who are different, specially gifted children.
Thank you in advance,
A desperate mother
Sana,
I’m sorry it has taken me several days to respond!
I’m not sure why that link is coming up strange. Here is the link again:
http://giftedhomeschoolers.org/
Otherwise do a search for Gifted Homeschoolers Forum and take the direct link from the search engine.
There is also a Facebook group for Gifted Homeschoolers Forum. Your best bet is to simply start reading and continue searching. We’ve never done formal testing as it is too expensive, but once you start reading more about giftedness you’ll know if it applies to your child or not.
Is there something specific you are trying to figure out?
Bacon….I shouldn’t be able to eat it either, but I can! Beets are high histamine, yet I tolerate those as well. Even today, five years out from the latest flare up of my mast cell disease I am dealing with food fatigue. I get it…but am so very thankful for what I can have. *hugs* I know that this is, indeed, a lifetime journey.
I’ve just been recently diagnosed with EOE. I had an EGD done and took 4 biopsies of esophagus and stomach. Came back EOE in my Sphincter. I don’t know even where to begin. Doctor put me on PPI. I’ve always have had stomach issues. I have IBS, seasonal allergies, sensitivities to foods, positive to fructose, lactose, and SIBO when breathing tests were done. In previous years, doctors tried many H2 Blockers, but couldn’t take for very long. They all made my stomach hurt and symptoms got worse instead of better. New doctor put me on PPI. It got rid of heartburn and breathing issues, but still had a lot of belching, gas, and bloating. I had difficult time going to bathroom and was told to take MiraLAX. I don’t know if my illness was from the PPI or the MiraLAX or both. I ended up in ER with severe dehydration from diarrhea and vomiting. Did CT Scan because of severe pain in stomach and lower right side and back. Afraid it was my appendix. Also have gallbladder issues. Everything came back normal. Said it was Gastroenteritis. Send me home once I was hydrated. As soon as I got home, I started with the diarrhea again for the next day and a half with no vomiting, but stomach really hurt. Took myself off of PPI. Not sure if coincidence or not, but I don’t want to take this. It’s only a bandaid and doesn’t cure issues; I was told I will get Esophageal Cancer if I don’t take a PPI. I know from reading about PPI’s, I could also get cancer from this too. Frustrated because I don’t know what to do. Any more ideas than what I have read here?
Hi Jody,
I apologize it has taken me a few days to respond. The first thing I wondered was whether or not you’ve done an elimination diet yet.
Which PPI are you using? I use Prevacid (Meijer brand which works better for me than name brand). I tried Priolsec early on and had terrible side effects.
I have had to seriously change and restrict my diet in order to keep a lid on things. I also take a Pepcid once a day and swallow Flovent every other day. The Flovent works very well for me. With all of that, I keep it under control. EOE is a horrible disease and I hate taking the meds but it is better than having my esophagus swell up.
The diet modification is a big part of it. Among other things, I completely eliminated soy, gluten, dairy, wheat, eggs, nuts, etc. It’s very restrictive, but I had a clean scope and I feel better (plus no choking) so I am sticking with it. I may try to add some things in, but once you get it under control it’s very hard to start messing with what is working.
I hope that helps!
Sallie