Diagnosis has triggered health anxiety and I'm struggling

[GFinDC]

7 hours ago, Fbmb said:

The reason my parents have triggered my anxiety is that they are both dealing with health issues that I'm having to face with them. My mother has a liver disease that is coming back 20 years post-transplant, and I'm watching my father die from alcoholism. I'm also an only child and am facing this alone. So yes, it's been difficult. I know better than most how futile life is. I don't need to be reminded to tell them I love them. I do that everyday, and the fact that I struggle with this doesn't mean that I don't love them. Realizing your parents' mortality is really scary and for me it leaves me wondering if these diseases are hereditary and it makes me fear for my children and for myself. When my mother was sick I was little and I didn't know what was going on. Now I do, and it's very scary to me. Dealing with this diagnosis for myself and for my son while supporting my mother as she faces her disease again while also coming to terms with my father's condition (he just started with hospice) has been very difficult. Maybe I'm not as tough as some.

I am sorry you are going through such a tough time FBMB.  It's not easy watching loved ones decline, and feeling helpless to do anything about it.  My mom died of cancer some years ago.  She was told by the doctors she had 6 months to live, but she made it 5 years.  Most of that time at home.  I don't think its a matter of being tough.  Maybe its more important to realize that this life isn't the end of things, and our loved ones have something better to look forward to.  I know it's not easy at a time like this, but making sure they have their wills together and a living will in place can be very important.  It can be tough to deal with financial issues when you are mourning, and maybe not thinking straight.  And a living will can make their passing more comfortable and easy than what the medical people can do without one.  The medical people have their hands tied by legal issues and can't always make things as easy on people who are incapacitated as they would prefer.  In that case a loved one can give them permission to apply drugs to ease pain with a living will.  You probably already know all this since your dad is starting hospice.

There is a link between the celiac genes and other AI conditions.  But having the genes doesn't mean you automatically get the condition.  We can't really change our genes (yet), so we have to take the cards we are dealt.  Whatever those may be.  Your kids have a head start, since you know about celiac disease now.  They can be tested every few years for it.  And you can teach them to eat healthy foods from the beginning so they will have a better/healthier diet than most kids do.  We can only do what we can do, that just has to be enough.

[GFinDC]

1 hour ago, Deb K said:

Just diagnosed in Nov. I had thought I was depressed due to my mom's sudden passing in June from lung cancer. I was lethargic, unmotivated to do anything, and irritable. Once I began the gluten free diet I felt energized! Wow, I couldn't believe how much gluten had effected me. 

During the holiday I was careful not to eat eat gluten but then realized, after now 3 days of discomfort, that I missed a few things. It's frustrating and mentally draining to watch everything I put in my mouth. I am becoming a bit obsessive about food. The best practice for me is to stick with a few known foods and go from there. Any help would be appreciated.

Hi Deb K,

It's easy to make mistakes at first.  Getting the gluten-free diet down can take months really.  What you said about starting small and slowly adding foods is actually a good plan.  That's one way to do an elimination diet.  The biggest sneaky gluten culprits are usually processed foods and cross contamination.  you can eliminate the processed foods issues by not eating them.  Stick with whole foods like meats, veggies, nuts. eggs and fruits instead.  It's usually a good idea to avoid all dairy for a while too.  Carbs and sugars are generally a bad idea while healing also.

Your gut is still healing from celiac.  So it may react to many foods at this point, that later on may not cause any problems.  You might get more responses if you started a separate thread of your own.

[Fbmb]

1 hour ago, Deb K said:

Just diagnosed in Nov. I had thought I was depressed due to my mom's sudden passing in June from lung cancer. I was lethargic, unmotivated to do anything, and irritable. Once I began the gluten free diet I felt energized! Wow, I couldn't believe how much gluten had effected me. 

During the holiday I was careful not toeat eat gluten but then realized, after now 3 days of discomfort, that I missed a few things. It's frustrating and mentally draining to watch everything I put in my mouth. I am becoming a bit obsessive about food. The best practice for me is to stick with a few known foods and go from there. Any help would be appreciated.

I'm so sorry about your mom. That has to be so  hard. I'm new to this like you are. I have found a lot of help on this site. I also read Elisabeth Hasselbeck's book and thought it was helpful. I know some people have mixed feelings about it but I needed all the help I could get! I know what you mean about obsessing about food. I went crazy when I was diagnosed and scrubbed my kitchen, separated all the gluten from my food, went shopping (that book has good tips for keeping your kitchen safe and shopping). I have had some setbacks too. I ate cool ranch Doritos the other day and had an issue with them. I think it's the processed corn. I've had good days and not as good of days and the people here have taught me it's all par for the course. I'm just doing my best. I'm new to this like you are, so I don't know how much help I can be. I grew up with celiac because it's rampant in my family, so maybe I'm a little helpful? I would advise you to:

not eat out. At all. Unless you have done your homework and know for sure that you're eating at a safe place. For example, everything I have heard and read says chick-fil-a is great for us, and I have been happy with them.

eat Whole Foods and try not to eat a ton of processed food, even if it's gluten free. It can be hard to digest and it's got a lot of other yuck in it. Just eat it in moderation. But nuts (I love almonds), fruits, veggies, eggs, meats are your friends. I have just started re-introducing dairy and haven't had too many issues. But I'm going very light on the dairy. 

The internet is an amazing tool. I google everything to see if it's safe. Today at the store I called a company to ask them if their shampoo is gluten free because I could find an answer online (it was baby shampoo because my toddler has celiac also). The great thing is because celiac is so common it's been relatively easy for me to figure things out because people know what I'm asking when I say "is this gluten free?" 

Water water water. My aunt has celiac and said that she guzzles it when she gets glutened. 

Cook for yourself and don't go out to dinner at a friend's house yet. It's a steep learning curve and you can't expect your friends or family to learn it overnight, so you should have dinners and entertain at your place for now - unless it's a potluck and then you can take something you can have. For my Christmas party I took 7 layer dip, and it was great

 

i hear this gets easier. I have 2 aunts and an uncle with this and it's all kind of second nature to them now. They're about 15 - 20 years in. It's overwhelming but I'm learning that it's so common and people can help you. 

 

Good luck!

[Deb K]

On 12/27/2016 at 10:21 PM, Fbmb said:

I'm so sorry about your mom. That has to be so  hard. I'm new to this like you are. I have found a lot of help on this site. I also read Elisabeth Hasselbeck's book and thought it was helpful. I know some people have mixed feelings about it but I needed all the help I could get! I know what you mean about obsessing about food. I went crazy when I was diagnosed and scrubbed my kitchen, separated all the gluten from my food, went shopping (that book has good tips for keeping your kitchen safe and shopping). I have had some setbacks too. I ate cool ranch Doritos the other day and had an issue with them. I think it's the processed corn. I've had good days and not as good of days and the people here have taught me it's all par for the course. I'm just doing my best. I'm new to this like you are, so I don't know how much help I can be. I grew up with celiac because it's rampant in my family, so maybe I'm a little helpful? I would advise you to:

not eat out. At all. Unless you have done your homework and know for sure that you're eating at a safe place. For example, everything I have heard and read says chick-fil-a is great for us, and I have been happy with them.

eat Whole Foods and try not to eat a ton of processed food, even if it's gluten free. It can be hard to digest and it's got a lot of other yuck in it. Just eat it in moderation. But nuts (I love almonds), fruits, veggies, eggs, meats are your friends. I have just started re-introducing dairy and haven't had too many issues. But I'm going very light on the dairy. 

The internet is an amazing tool. I google everything to see if it's safe. Today at the store I called a company to ask them if their shampoo is gluten free because I could find an answer online (it was baby shampoo because my toddler has celiac also). The great thing is because celiac is so common it's been relatively easy for me to figure things out because people know what I'm asking when I say "is this gluten free?" 

Water water water. My aunt has celiac and said that she guzzles it when she gets glutened. 

Cook for yourself and don't go out to dinner at a friend's house yet. It's a steep learning curve and you can't expect your friends or family to learn it overnight, so you should have dinners and entertain at your place for now - unless it's a potluck and then you can take something you can have. For my Christmas party I took 7 layer dip, and it was great

 

i hear this gets easier. I have 2 aunts and an uncle with this and it's all kind of second nature to them now. They're about 15 - 20 years in. It's overwhelming but I'm learning that it's so common and people can help you. 

 

Good luck!

Thank you!  It is mentally exhausting to shop and prepare dinners now. I know it gets better.

 

[DJFL77I]

Thank you for your comments, I was also diagnosed with this disease and I am very scared.

[Scott Adams]

Welcome to the forum @WendyParr ! Have you begun your gluten-free diet? Did you get diagnosed via a blood test and/or biopsy?

This article may be helpful:

 

[DJFL77I]

Dear Scott, thank you for the article, I just started my gluten-free diet, that's why I'm here.

I wish you all good health!💗

[DJFL77I]

By the way, I know so many people who are concerned about gluten sensitivity or gluten disease. In fact, this is a common problem, and many people actually feel better if they have removed processed foods, particularly gluten, from their diet. Unfortunately, celiac disease usually remains a lifelong problem and requires very strict removal of all gluten from the diet. If you have a real gluten disease, the consequences of not following strict gluten removal can lead to an increased risk of heart disease, cancer, and other serious illnesses. Dear Grace, when I found out about my diagnosis, I studied the information about it and I admit that my first reaction was similar to yours, I was so scared. But when I accepted this situation, I felt better. Besides, I've heard that dietary supplements can improve our health. Are you taking any supplements? Please share your experience. Thank you in advance.

[AlwaysLearning]

I only read the first couple posts in this thread, but my first thought is that you are going to be totally fine in no time at all. A bit of paranoia is completely healthy when it comes to trying to keep gluten out of your life and I suspect that you'll be much better at it than those who don't take it seriously.

I remember when I was in my 20s and sometimes felt like a hypochondriac. In hindsight, I wasn't being a hypochondriac at all and I actually was suffering some pretty major health problems at the time, just didn't know it. 

But when it comes to things like lymphoma that has been linked to celiac, it should not be an issue if you went gluten free. So just think of your worries as being good motivation to get and stay gluten free!

You have the power to control what you eat and how you think! You already know where you want to be with both, so I would cut yourself some slack and just keep working on your goals. Keep up the research too!

[BuddhaBar]

If you would get another more serious autoimmune disease or lymphoma and the doctor told you you only had months to live, you would probably regret worrying so much. That's probably the most common regret of people on their death bed.

[PiterPidum]

My friend also recently found out that she has celiac disease. She had long suspected this because she had frequent abdominal pains, fatigue, and anxiety attacks. A couple of weeks ago, the doctor confirmed that she had celiac disease. Now I try to support her, because she is very worried. She has never followed any diet and I understand that it will be very difficult for her at first.

[trents]

On 12/27/2016 at 7:21 PM, Fbmb said:

i hear this gets easier. I have 2 aunts and an uncle with this and it's all kind of second nature to them now. They're about 15 - 20 years in. It's overwhelming but I'm learning that it's so common and people can help you. 

It does get easier. First thing is that through time, education and experience you develop this sixth sense as to where gluten is likely to show up in food items and of the things you need to stay away from so that you don't have to think so hard about it and wonder. You just know and say, "no." You come to realize that the risk is just not worth trying it if you are suspicious of it. Second, you come to grips with this disease being a new reality in your life. It's part of who you are. Third, family and friends come to  grips with this new reality that's part of you and begin to accommodate your need to avoid gluten. That part has become easier of late as there is more awareness of celiac disease/gluten sensitivity than there was when I was first diagnosed almost 20 yr. ago. Oh, there will always be those family and friends who are skeptics but in time most come around if you work at patiently educating them and learn to handle the awkward moments with grace.

Edited April 8, 2021 by trents

[CMCM]

Things really are so much better now!  When my mother was diagnosed in 1967, her doctor said "Don't eat any wheat/rye/barley."  That was was the extent of his advice.  There were zero gluten free foods in the stores, zilch.  No internet existed to find recipes.  Gluten free baking had not yet evolved at all.  About 10 years later she found a cookbook of some sort about it, but the recipes weren't great.  She shopped for rice flour at Asian markets and started experimenting with how to make gluten free baked goods, usually without great success.  One thing she did figure out was how to make gluten free waffles....and for decades that's what she made to use for sandwich bread, etc.