- 7 years ago
- Wedding: June 2013
Of course, what other choice would I have?
Of course, what other choice would I have?
Thank you everyone. It was just a rough night.We had to explain to her the big 6 diet because we were talking about it. It wasnt pretty.
My Fiance told me lets focus on what she will gain not what she is losing when they make their decision. Right now she isnt growing at all, she may even be losing weight. She’s very moody, and she hurts. I feel bad we thought the moodyness and disrespect were just part of her age going into puberty. We’ve decided to be a little easier on her for the next few weeks. He told me if this fixes her issues then we are gaining something a lot more important than food that she’s losing. She’s strong and I’m strong and we’ll get through this.
EoE is eosinophilic esophogitis. Its a newer autoimmune type disorder of the digestive tract. Essentially she gets GERD because her white blood cells are attacking her stomach and her esophagus. That GERD (gastrointestinal reflux) cant be controlled with a PPI (proton pump inhibitor: prevacid etc) because the root cause currently isnt being treated. She had been diagnosed with tree, grass, and ragweed allergies previously which means she spends half the year on antihistamines. This is happening in winter though, which means we have another cause. The problem is these children dont test positive for most of their allergies so when they run out of options they food trial them by removing the big 6 or all foods. They substitute with a formula called Neocate. Its very expensive. IT tastes bad, and insurance doesnt like covering it. Sometimes it has to be deliverd via picline.
I have celiac. We’ve been told she could have this too at this point and it could be driving the EoE. This would be our best case scenario.
@trueblue14: I am so very very sorry for your loss. This breaks my heart.
@dewingedpixie: First, this sounds awful. I’m so sorry you have to go through this
I would say there is a really high chance that this is celiac. My dad has it, and so do I. We had two completely different reactions to it when we were first diagnosed and mine went on for over FIVE YEARS!
My symptoms weren’t the typical stomach and digestive upsets. I had high blood pressure, clots (at age 19 I was at risk of having a stroke), cysts, joint problems, severe headaches, wounds that refused to heal, swelling – so SO much.
It wasn’t the celiac’s that was doing this to me – it was the malnutrition. and it affected me in ways that meant no doctor could diagnose it for over 5 years.
It still hasn’t been actually diagnosed in me. I just cut out gluten and I instantly felt better. The thing was, I’d eat gluten a little bit, but not 3 meals a day for 6 weeks like the test needed – so it always came back negative.
When I started on my gluten-free diet, I also went vegan. All those vitamins and minerals from all those good foods got me back in shape in no time.
Also – this is a massively big thing to suggest, but if you feel you are desperate about her life and her future – would you consider moving to a city that had a lot of places that catered for allergies?
I moved to a city that is FULL of vegan restaurants, veggie restaurants, and gluten-free cafes. There’s even a 100% organic supermarket that sells things that before I could only find online.
It means that when I go out with friends, I CAN eat whatever I want. When my dad came to visit this weekend he couldn’t believe that he could walk into a cafe and have his pick of any cake.
I know it’s pretty extreme, but I just wanted you to know that it IS possible to live with such severe allergies, and once you finally know what she can and can’t eat, you’ll become a master chef/baker and provide her with wonderful treats 🙂
@Miss Jackrabbit: We live in a very celiac friendly location. We are desperatly hoping her EoE is being driven by a 3rd condition celiac right now. If its not that the big 6 elimination will make finding food for her very difficult since the 6 removed will be: Wheat (or gluten), eggs, milk, soy, seafood, and nuts.
We started going through products in our house last night and we found a handful of my Girlfriend products that she likes that we can use. This was a relief. We also figured out the icecream place we love has snow cones which she’ll still be able to eat, she ate them every now and again anyway. We will start buying her steaks too for wraps, and do more casseroles with rice. We are trying to approach this now rather than ignore it incase we’re told in a month we have to go this route. I’d rather go home knowing what she can eat than confused.
okay those big six aren’t too bad. and she’ll definitely be healthy if she can’t eat any processed food!
a vegan diet isn’t massively hard so it shouldn’t be too tough for her. especially if she can eat lean meat, too.
and lean meat with veggies and rice/potatoes is a really easy meal for her to be able to eat regularly so that’s a real bonus!
she’ll be eating CLEAN and if this is the worst case scenario and she can’t ever eat those foods again, she’ll be soooooo healthy!!
My friend in the office doesn’t eat meat, soy, dairy OR nuts and she’s amazingly healthy. She knows all her nutrition and looks incredible.
And you’re really lucky to be living in an area that provides good food
Try not to worry too much about how this will affect her. Try and look at the positives! At least she’ll be better, one way or another!
@dewingedpixie: Consider joing a support group or action group in your local area. I found the DC Metro Celiac Organization pretty quickly. http://dcceliacs.typepad.com/ These organizations are grest for providing additional support and suggestions on how to cope with the stress you and your daughter are dealing with on a daily basis. They can also assist you in finding local grocers and restaurants that cater to you and your daughter’s dietary needs. You can do this!
Oh, and here’s a Mommy blog that may also help or at least put you in contact with other mommies in your situation. http://glutenfreemommy.com/
I work in a hospital that specializees in EoE. And so I know it sucks. It does. But there are plenty of people who deal with it and live healthy productive lives. Have faith. It’ll work out one way or the other. It probably won’t be fun but I’m sure you’ll be glad to just get some answers.
@trueblue14: I’m so sorry for your loss. 🙁 Your story is truly heartbreaking but beautifully-written and inspirational. Thank you for putting it into perspective for all of us that there truly are worse things. It was extremely kind of you to share this.
I’m very sorry for what you’re going through, I don’t know what the acronyms means, but it sounds just awful!
@beachbride1216: We already have contact with some of the celiac groups since I have celiac. I really would prefer her to have this situation since we can easily handle being a family with celiacs.
The EGID research clinic may provide support groups since this is a research group. We figured we would try that route after they decide which cuts to make. A celiac group probably really wont support her if its not celiac her cuts will be more drastic. One of my worries bringing her to a EGID clinic is some of those kids are a mess on feeding tubes. That worries me how that will affect her knowing those kids are in the same boat as her. When we took her to research clinic in the past it was crowded and busy, she was 3-5 and asked a lot of questions. She saw a lot of things and went through a lot of things that were not fun.I do agree meeting other kids and feeling included is important though. This is one reason they’ve already put her back into the research clinic group. It also gives her the possibility for clinical trials again like the one she had before. I’ll ask if they have a meet up group too though.
@dewingedpixie: If I were you, I’d be researching helminthic therapy (I warn you, it’s not for the faint of heart, but it could really help improve your child’s health). The medicine we practice here in the US is great for things like trauma, but it’s terrible for auto-immune disease.
@dewingedpixie: I’m so sorry you’re going through this– I can’t even imagine how painful it must be as a parent to see your child sick and in the hospital, with her health not improving. I hope you can try to see this not as a burden to you, your fiance, and your child, but an opportunity to grow, to nurture your relationship with your daughter, and to show her how supportive you will be for her for the rest of her life.
As for the extremely restrictive diet? I’m sure that won’t be easy, but there are so many options these days and recipes/food blogs online that you should be able to find new recipes (and experiment with your own) that she will like to eat. Hopefully, the physical/behavioral issues are stemming from specific foods that her body is reacting to, and once you can pinpoint and avoid those foods, she will be able to blossom into a healthy young girl. Wishing you all the best!!
I will share my story with with you. About 4 years ago I started having stomach issues, swelling (looking like I’m 7 months pregnant), gas, diarrhea, etc. It was like every time I ate, I was sick, so I started my own elimination diet. My Fiance who is a total meat and potatoes guy (like hates anything green in colour) stood beside me, held my hand, and gave up everything I had too.
I eliminated shellfish, red meat, eggs, dairy, basically became vegan within a year and saw no results. I couldn’t figure out what was causing so much pain.
I saw my GP who suggested I go for allergy testing and a celiac test and see where that goes. My celiac was negative, but my allergy test was positive for wheat, VERY positive. SInce you have celiac, you know how tough it can be to give up wheat when its in so many products.
I was so upset, I mean I live in a province known for growing wheat!! I loved cake, pies, cookies, crackers, etc. and now i’d have to give it up.
My Fiance saw me struggling, he took the positive outlook, by letting me know that this is our chance to explore new foods, ones we may not have tried otherwise. The benefit is absolutely worth the sacrifice, and together we could do this. We chose to look at all the options I do have, rather than what I can’t have.
I will be the first to admit, I struggle. And its ok to struggle and have moments where you’re not sure if you can really give things up- we’re human. But its gets easier. We just have to exchange old habits for new ones.
You can do this, and I know your child can do this! Keep positive 🙂
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