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I feel like I am drowning.

Erin1712

By Erin1712
in Coping with Celiac Disease

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Erin1712 Newbie
Erin1712
Posted

I was tested 3 years ago. No one ever gave me my results until last week. Now trying to go gluten free is just overwhelming. I read the Newbie 101 thread and just ended up crying and in shock and overwhelmed. I just don't know how to do all this. I feel like I am fighting a silent battle and losing. I don't think I will ever be gluten free. The cross contamination in my house is ridiculous because I have 5 kids. The younger ones like to drink from my water bottles and share my food. As much as I say no they sneak it when I am busy. Also I don't know what to do for meals. Everything I used to eat had gluten in it. If it didn't have gluten in it it was pared with something that did. I feel like I am just going through the motions but screaming on the inside. I don't want to feel like this forever. But I don't want to be sick either. 

I need someone to talk to. I need someone to tell me it is normal to cry in frustration and sadness the first few days. Today is day 6 and I feel very alone. 

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cyclinglady Grand Master
cyclinglady
Posted

It is normal to grieve!  Going gluten-free is hard but it gets better!  You are not alone!  When you get a moment to yourself, sit down and make a plan.  You have to create a safe environment and lay down the law at your house.  

your kids need to be tested.  All first degree relatives need to be tested.  Check out the University of Chicago's celiac website for testing information.  

Got out to get to work.  Hang in there!  

Hugs!

manasota Explorer
manasota
Posted

Oh Erin1712, you are not alone!  We have all been there.  Your frustrations and sadness are completely normal. Whose life is going so well that they would welcome a major life problem like Celiac?  Nobody's!

It is tough and time-consuming to master the gluten free lifestyle; but you WILL be able to do it!  One step at a time.  Keep reading topics on this site and keep coming back with your questions.  This site is loaded with kind and knowledgeable fellow Celiacs who are eager to help you.  There is plenty of love and support available here.

I can't help you with issues relating to others in your house eating gluten as my home is entirely gluten free; but there are others who do manage to do it.  I'm pretty sure they'll chime in and give you concrete tips to help you.

You will be able to do it.  Just take one step at a time.

Just keep going...

 

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome. It is hard at first. More than a few of us have broken into tears at the grocery store during the first few days or weeks. Some of us also go through a withdrawl which can contribute to the depression and anxiety about all the changes we have to go through. It will get better.

Try to concentrate on all the naturally gluten free food that is around especially at first. Fresh meats, chicken, fish, eggs, potatoes, fruit, rice and plain veggies etc are all naturally gluten free. With 5 kids you are likely very busy so things like a crock pot or cooking in large batches and freezing will be helpful.

Do be sure to get the kids checked. If they are negative on the first test make sure that you retest every 2 years or so. Celiac can hit at any age so do let your parents and siblings know they also should be tested.

I can't stress enough that things will get better. The trade off for all the hassle is being healthy for yourself and your family.

Do check out the recipe section and I hope you heal quickly.

Darren Apprentice
Darren
Posted

How you are feeling is perfectly normal Erin  we've all been there. I am new to this lifestyle as well and can tell you that my first several weeks felt horrible, stressful, overwhelming. I found that by researching as much as I could so I could plan for the change helped a lot before I actually went gluten-free. Designate part of the kitchen counter to your food and no one else's. Get some of your own utensils that are colored  differently to make it easier. Review your common meals and then find the gluten-free alternative for most of them, it's actually not as hard as you would think. You will find that you will actually be eating healthier and will feel great. The stress of it will start to feel better probably in a few more weeks once you've researched and made the change, it definitely gets easier to the point where now I am two months into being gluten-free and it's really not that big of a deal at home anymore.  Once you have things figured out for yourself, then focus on your kids in terms of testing. There are at home genetic kits that you can  order on the Internet such as genesure from gluten pro, that can help give you answers regarding your families potential risk. Take all of this one step at a time to make it manageable and you will get there. 

ERH Newbie
ERH
Posted

There are worse things that could happen to your family than going gluten-free with you!  You are probably the "shopper" so stop buying those gluten foods!!  Your kids can survive by having some favorite gluten-foods at school, when they are out somewhere, or at other people's homes.  As you adjust to converting your home to gluten-free, you will find dozens of new gluten-free products to make the transition less drastic.

Your health is more important than individual food preferences and you should not feel guilty for expecting your family to help you stay healthy.  Before I was diagnosed, I was constantly vomiting and having diarreah -- my weight dropped to 89 lbs.  I worried that I would die -- and my doctor admitted he worried about that, too.  I was on artificial feeding (intravenious) and my diagnosis was such a relief that my husband has not complained once -- at home, he eats gluten-free and is happy to do so.  

If you don't take care of yourself, you may not be able to take care of those children.  Plus, Celiac disease is genetic, so you may be preparing those children for an easier transition to a gluten-free diet if they develop the disease during their lifetime.

MsMarginalized Rookie
MsMarginalized
Posted

Gee, "Let's order this test but not give the patient the results" Said NO conscientious Doctors office, EVER!!!

Just curious, have you fired them? 

I have a unique perspective: the first GI Doctor I went to who told me "I will NOT diagnose you with Celiac Disease because I cannot treat Celiac Disease" and this moron is actually a graduate of 2 very prestigious colleges (undergrad/med school).  He went so far as to lie to me to withhold the freakin' results of the 2 (that's right, he took only TWO) biopsies he took when he did the endoscopy that I demanded & he "allowed" because I agreed to a colonoscopy as well!  I did fire them and was able to have those biopsies read at the Jacksonville Mayo Clinic.

As others have said, grieving is a very real part of this process! Networking & reaching out to others with this disease will also help you feel not so alone. There are many good books (Jennifer Espinoza wrote one: Open Original Shared Link 

& here's another:  Open Original Shared Link

 

As well as some really informative blogs:

Open Original Shared Link

 

  

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      Contact them.
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