Post-diagnosis depression

[mewnicorns]

Hi everyone. This is my first post so bear with me.

Let me start by saying that as little as one month ago, I had absolutely no reason to believe that I would ever be posting here. I, like many of you, was getting ready for the holidays and had no suspicion whatsoever that anything was wrong with me. One thing I had to do in preparation for the holidays was get a refill of my Synthroid (thyroid medication). I went for what I thought was a very routine appointment that would ultimately change my life.

My previous doctor left the practice, so I saw the new endocrinologist that was hired to replace her. She asked me all the usual questions and took my height and weight. Then she looked through my file to see what dosage I was on. She looked surprised and said it was a relatively high dose for someone of my size, so she wanted to test me for celiac in case I had an absorption problem. I just shrugged it off, fully confident it would come out negative. I know there is a strong association between Hashimoto's and celiac, but I have never had any symptoms or nutrient deficiencies, other than Vitamin D (which improved as soon as summer came around and I was getting more light). No one in my family has celiac either (or at least hasn't been diagnosed with it).

So imagine my surprise when my TTG test came back positive. It was a weak positive, but a positive nonetheless. Despite that, I still held out hope. I read that the TTG test has an extremely high rate of false positives, especially in people with other autoimmune disorders. I followed up with a GI and he was not prepared to say I was even likely to have it based on that one test result. He needed more information before he could confirm, so he ran some more tests. In the meantime, he told me to not worry about it, eat normally, and enjoy the holidays, which I tried to do, but I was pretty scared. I scheduled my endoscopy for Jan. 5 because that was the earliest possible date available.

I did not get my test results until I went in for the procedure this past Friday. He told me they all came back positive (still a weak positive, but positive).  I just nodded because I was afraid if I tried to talk, I would start crying. When I was hooked up to the monitor, he noted my heart rate and asked me if I was nervous. I nodded again. He asked me if it was about the procedure or about the results. I told him it was the results and I did indeed start to cry (he held my hand and told me I could keep a poker face, but I can't hide from the heart rate monitor). Then he said to just relax. The blood tests weren't definitive and I should just wait and see what the biopsy shows. I knew he was just saying that to make me feel better, though. I did my research, and I know that if all the tests are positive, then it means I have it. At this point, all the biospy will tell me is how much damage is there. He noted that my intestines looked fine superficially, but that they do in about 80% of celiac cases.

I'm not going to get into all the details of why this makes me so upset. All of you are already familiar with the challenges of this extremely onerous diet: the hypervigilance, lack of spontaneity, social isolation, etc. The reason I am so depressed is because I'm not suffering to begin with! At least not in a way that I can physically feel. I'm not going to feel better because I don't feel bad in the first place, which makes all of this seem like even more of a burden. Not to mention I have no idea how to find out if I HAVE accidentally ingested something bad if I don't notice it physically. I eat a LOT of gluten-containing foods, and even in the quantities I consume now, I feel nothing. If I ate a crumb of bread, I won't experience anything.

I know I must sound incredibly whiny to most of you who actually experience suffering from ingesting gluten. I'm lucky not to be very sensitive or experience a great deal of pain. But at least you must have felt some relief to finally have an answer to and a solution for your suffering. I have no nutrient deficiencies, no pain, no GI issues, no brain fog, etc. I only have a bit of fatigue, but so does everyone I know. Having to give up all my favorite foods and cultural cuisine sucks, and I don't know where I'm going to find the time to cook the majority of my meals from scratch (not to mention I don't even enjoy cooking). I'm also a vegetarian of 15 years, which I don't think I can maintain anymore, and that utterly breaks my heart. The whole ordeal has sunk me into a serious depression. I can't stop thinking about it and obsessing over it. It feels like a nightmare I can't wake up from. I sincerely hope it won't be as bad as it seems right now, but in the meantime, I just needed a vent. I don't know if there's anyone reading this who has also gone through a similar thing (asymptomatic, surprise diagnosis, depression from the results). I just wish I could rewind a month and never see that endocrinologist. There is something blissful about ignorance. 

[cyclinglady]

1 hour ago, mewnicorns said:

Hi everyone. This is my first post so bear with me.

Let me start by saying that as little as one month ago, I had absolutely no reason to believe that I would ever be posting here. I, like many of you, was getting ready for the holidays and had no suspicion whatsoever that anything was wrong with me. One thing I had to do in preparation for the holidays was get a refill of my Synthroid (thyroid medication). I went for what I thought was a very routine appointment that would ultimately change my life.

My previous doctor left the practice, so I saw the new endocrinologist that was hired to replace her. She asked me all the usual questions and took my height and weight. Then she looked through my file to see what dosage I was on. She looked surprised and said it was a relatively high dose for someone of my size, so she wanted to test me for celiac in case I had an absorption problem. I just shrugged it off, fully confident it would come out negative. I know there is a strong association between Hashimoto's and celiac, but I have never had any symptoms or nutrient deficiencies, other than Vitamin D (which improved as soon as summer came around and I was getting more light). No one in my family has celiac either (or at least hasn't been diagnosed with it).

So imagine my surprise when my TTG test came back positive. It was a weak positive, but a positive nonetheless. Despite that, I still held out hope. I read that the TTG test has an extremely high rate of false positives, especially in people with other autoimmune disorders. I followed up with a GI and he was not prepared to say I was even likely to have it based on that one test result. He needed more information before he could confirm, so he ran some more tests. In the meantime, he told me to not worry about it, eat normally, and enjoy the holidays, which I tried to do, but I was pretty scared. I scheduled my endoscopy for Jan. 5 because that was the earliest possible date available.

I did not get my test results until I went in for the procedure this past Friday. He told me they all came back positive (still a weak positive, but positive).  I just nodded because I was afraid if I tried to talk, I would start crying. When I was hooked up to the monitor, he noted my heart rate and asked me if I was nervous. I nodded again. He asked me if it was about the procedure or about the results. I told him it was the results and I did indeed start to cry (he held my hand and told me I could keep a poker face, but I can't hide from the heart rate monitor). Then he said to just relax. The blood tests weren't definitive and I should just wait and see what the biopsy shows. I knew he was just saying that to make me feel better, though. I did my research, and I know that if all the tests are positive, then it means I have it. At this point, all the biospy will tell me is how much damage is there. He noted that my intestines looked fine superficially, but that they do in about 80% of celiac cases.

I'm not going to get into all the details of why this makes me so upset. All of you are already familiar with the challenges of this extremely onerous diet: the hypervigilance, lack of spontaneity, social isolation, etc. The reason I am so depressed is because I'm not suffering to begin with! At least not in a way that I can physically feel. I'm not going to feel better because I don't feel bad in the first place, which makes all of this seem like even more of a burden. Not to mention I have no idea how to find out if I HAVE accidentally ingested something bad if I don't notice it physically. I eat a LOT of gluten-containing foods, and even in the quantities I consume now, I feel nothing. If I ate a crumb of bread, I won't experience anything.

I know I must sound incredibly whiny to most of you who actually experience suffering from ingesting gluten. I'm lucky not to be very sensitive or experience a great deal of pain. But at least you must have felt some relief to finally have an answer to and a solution for your suffering. I have no nutrient deficiencies, no pain, no GI issues, no brain fog, etc. I only have a bit of fatigue, but so does everyone I know. Having to give up all my favorite foods and cultural cuisine sucks, and I don't know where I'm going to find the time to cook the majority of my meals from scratch (not to mention I don't even enjoy cooking). I'm also a vegetarian of 15 years, which I don't think I can maintain anymore, and that utterly breaks my heart. The whole ordeal has sunk me into a serious depression. I can't stop thinking about it and obsessing over it. It feels like a nightmare I can't wake up from. I sincerely hope it won't be as bad as it seems right now, but in the meantime, I just needed a vent. I don't know if there's anyone reading this who has also gone through a similar thing (asymptomatic, surprise diagnosis, depression from the results). I just wish I could rewind a month and never see that endocrinologist. There is something blissful about ignorance. 

Welcome! 

You are not alone.  I went to the GI for a routine colonoscopy (yep, I am over 50).  The GI noted my life-long anemia.  I already knew that I had Thalassemia (genetic anemia) and that my iron stores were probably low due to menstruation and menopause (I have Hashimoto’s too).  He said he wanted to screen me for celiac disease.  I had no GI issues.  My hubby had been gluten free for 12 years, so I knew exactly what it meant!  I only had one positive on the panel, but my biopsies revealed some pretty severe damage.  Me.  The baker.  Heck, I even baked my own burger buns!  I was shocked!  More shocking and devastating was two months after my diagnosis, I fractured a few vertebrae doing NOTHING!  I had osteoporosis due to my swinging thyroid and celiac disease.  And there is more....

I took a year off to build bone before I got back on my bike.  Then I got my diabetes diagnosis.  How much more restrictive can you get?   

As far as experiencing a gluten exposure, you might be surprised.  I have had bouts of GI issues when I have had a gluten exposure.  Who would have guessed?  

So, there are tons of us here on the forum with comparable stories.  You are really not alone.  Grieving is normal.  Mourn, cry, rant all you want here — we get it.  Depression is common, but can resolve.

After a while, it all becomes the new norm.  Really.  Sometimes, you can feel like having a pity party, but that usually dissipates quickly.  Life is short.  Are you going to be thinking about bread on your death bed, or your family and friends and the good times you had?

You just have to keep moving forward.

 

 

[mewnicorns]

11 hours ago, cyclinglady said:

Welcome! 

You are not alone.  I went to the GI for a routine colonoscopy (yep, I am over 50).  The GI noted my life-long anemia.  I already knew that I had Thalassemia (genetic anemia) and that my iron stores were probably low due to menstruation and menopause (I have Hashimoto’s too).  He said he wanted to screen me for celiac disease.  I had no GI issues.  My hubby had been gluten free for 12 years, so I knew exactly what it meant!  I only had one positive on the panel, but my biopsies revealed some pretty severe damage.  Me.  The baker.  Heck, I even baked my own burger buns!  I was shocked!  More shocking and devastating was two months after my diagnosis, I fractured a few vertebrae doing NOTHING!  I had osteoporosis due to my swinging thyroid and celiac disease.  And there is more....

I took a year off to build bone before I got back on my bike.  Then I got my diabetes diagnosis.  How much more restrictive can you get?   

As far as experiencing a gluten exposure, you might be surprised.  I have had bouts of GI issues when I have had a gluten exposure.  Who would have guessed?  

So, there are tons of us here on the forum with comparable stories.  You are really not alone.  Grieving is normal.  Mourn, cry, rant all you want here — we get it.  Depression is common, but can resolve.

After a while, it all becomes the new norm.  Really.  Sometimes, you can feel like having a pity party, but that usually dissipates quickly.  Life is short.  Are you going to be thinking about bread on your death bed, or your family and friends and the good times you had?

You just have to keep moving forward.

 

 

Thank you

Wow, that is a lot to get hit with, especially as a baker  I'm sorry. Is the diabetes related or unrelated? Were you able to put your baking skills to make some good gluten-free/sugar free treats?

Much of the problem is that most of the good times I've had with friends and family have revolved around food. I can't think of a single culture or society that evolved to treat food as a simple matter of survival as opposed to a source of community and joy. To not be able to go to someone's house for a dinner party, meet with girlfriends for brunch, go on a first date, or attend a work lunch without anxiety or wondering if you're about to get poisoned seems like a terrible way to live. Not to mention traveling! All these things that are supposed to be a source of relaxation and fun have suddenly become terrifying to me. I can see myself giving up and withdrawing just to avoid thinking about it.

That being said, I am lucky that I live in pretty much the best place in the country to be a celiac, so I shouldn't be complaining so much I guess. But despite that, it still feels very lonely. I'm not married or in a relationship, and I don't know anyone else who has this disease, so I really am going through it alone. My ex-bf had it, and if anything, thinking about that just makes it worse. The most well-intentioned people just don't seem to get it. They think it's just giving up bread, beer, and pasta, and that a gluten free menus at restaurants are sufficient. 

[RMJ]

I think you have a very smart endocrinologist and a caring GI, although that may not matter to you right now.  I was tested because of my migraines.  I didn’t think I had symptoms, but once I went strictly gluten free I just felt better and had more energy (although still the same migraines). Maybe that fatigue is due to celiac.  I’ve been to work lunches and dinner parties and just not eaten anything.  It is hard the first time, but much easier the second time.  

[Cheerymarie]

Diagnosed in late September myself, I feel you! I totally understand what you are going through you are NOT whiny, it does suck. As time passes you figure out little things that make it way easier overall. The first few months I’ve been really depressed and the holidays were SO hard this year since it was all still brand new. I bought a NIMA (gluten sensor) and that honestly has helped a lot with checking for cross contamination and going out to eat, or going to relatives.

 

As far as not cooking there are actually a decent amount of gluten-free frozen dinners! Even lean cuisine brand! More so in places like earth fare or one of those type places but Walmart has a surprisingly good selection. As far as the vegetarian thing I am so sorry, it would be possible to continue but you’d be very very limited. There are nutritionists that specialize in celiacs disease if you are having trouble I would recommend. Definitely check out the newbie posts here. This website has a bunch of other celiacs that are here for you anytime you need to talk. 

Pasta blends are the best like rozonis gluten-free pasta. There’s a delicious brand of break and bake cookies called sweet Loren’s. They are SOOO good and they are vegan, dairy free and nut free! I’ve found discovering all these things that taste just like the gluten version has made me much happier bc I don’t feel like I’m missing out on as much. If you do decide to make some stuff most “paleo” and “whole30” recipes are gluten-free so that another good google tool like “paleo stuffing” etc. 

also there’s a lab that pays $1000 for your blood within 1 week of diagnosis so they can use it to make more blood tests. I wish I would have known bc I spent a pretty penny replacing food and beauty items.  Best of luck! When first diagnosed I read a bunch of posts saying “ it’s not as bad as you think” from celiacs and it made me sad bc I was all “yessss it isss  “ but I realized they were all right a few months later. 

[Cheerymarie]

Snap also I forgot to mention. Ignorance can be bliss until you get cancer! Undiagnosed celiacs can cause lots of types of cancer. I personally had a pre cancerous polyp removed (I’m 25!!!) I wouldn’t have had a colon screening until 50! Very thankful for celiacs versus death by horrible cancer. 

[Jmg]

On 1/8/2018 at 3:43 AM, mewnicorns said:

The whole ordeal has sunk me into a serious depression. I can't stop thinking about it and obsessing over it. It feels like a nightmare I can't wake up from. I sincerely hope it won't be as bad as it seems right now, but in the meantime, I just needed a vent. I don't know if there's anyone reading this who has also gone through a similar thing (asymptomatic, surprise diagnosis, depression from the results). I just wish I could rewind a month and never see that endocrinologist. There is something blissful about ignorance. 

Hi and welcome

First off, whether you had symptoms or not, the diagnosis / realisation (I tested negative but still lifelong gluten-free duet to symptoms) that you are gluten free for life hits almost everyone like a train. I had a major depression hit me after the initial thunderclap recognition. I think many/most do.  So this reaction would be with you whether or not you had symptoms, the difference is you can't concentrate on the feeling better aspect to try and mitigate the grieving process.

You have come to the best community I'm aware of on the web to get the info and support you need in coming to terms with this. That's at least some good news!

Secondly, although you didn't have symptoms you were aware of they may have been just around the corner. They may have snuck up you like they did me and many others and they could in turn have robbed you of many of the pleasures of the following years. There's no way of knowing, but you may have wandered around with depression, brain fog, aches, pains, nerve damage etc etc or even worse been through needless health procedures as well meaning doctors tried to work out what you have. It doesnt feel like it but that sharp doctor of yours may have done you the biggest favour anyone will ever do for you in your life. 

Use this space to vent as much as you like. There will be people here who have trod a similar path and come through the other side. Use their experience and support to help you in the months ahead. It gets better. You'll get better. In the meantime don't worry if you get the occasional tear in the supermarket or restaurant. It's natural, it will pass. 

Best wishes to you!

Matt

[mewnicorns]

20 hours ago, RMJ said:

I think you have a very smart endocrinologist and a caring GI, although that may not matter to you right now.  I was tested because of my migraines.  I didn’t think I had symptoms, but once I went strictly gluten free I just felt better and had more energy (although still the same migraines). Maybe that fatigue is due to celiac.  I’ve been to work lunches and dinner parties and just not eaten anything.  It is hard the first time, but much easier the second time.  

How do you not get hungry just sitting there and watching everyone else eat and smelling their food while you go without? I work long hours and have a long commute home so I can't just make something at home to eat before I go. Idk, maybe this isn't the right place to ask this question but it sounds torturous to me.

It would be nice to have more energy for sure. I did go to the doctor in the past because I was feeling so tired all the time, and every time they would test my iron levels, vitamins, and metabolic panel and everything came back normal. That was really my only symptom. I have depression as well, but it's likely I would have had that anyway due to certain events in my life. This probably didn't help though. It would be nice if it improved, but I am skeptical. 

[kareng]

10 minutes ago, mewnicorns said:

How do you not get hungry just sitting there and watching everyone else eat and smelling their food while you go without? I work long hours and have a long commute home so I can't just make something at home to eat before I go. Idk, maybe this isn't the right place to ask this question but it sounds torturous to me.

It would be nice to have more energy for sure. I did go to the doctor in the past because I was feeling so tired all the time, and every time they would test my iron levels, vitamins, and metabolic panel and everything came back normal. That was really my only symptom. I have depression as well, but it's likely I would have had that anyway due to certain events in my life. This probably didn't help though. It would be nice if it improved, but I am skeptical. 

You may find some things ypu didn't associate with Celiac go away - migraines, nerve problems, cold sores, thyroid issues, etc.  

As for the watching people eat -  you might be able to get them to go to a Celiac safe place.  You may just have to plan your food life better.  Cook ahead, keep a package of nuts or protein bar with you always.  Sometimes, I will take something with me to eat before or after ( if I don't feel like whipping it out while they are eating) that is a  treat like a Snickers bar , dark chocolate peanut butter cups, or Fritos ..... I can bring a protein bar for the hungry part, but  need something for the " feeling sorry for myself" part.  Plus, after you do,this for a while, you mostly get used to it and figure out how to cope.  

[mewnicorns]

12 hours ago, Cheerymarie said:

Diagnosed in late September myself, I feel you! I totally understand what you are going through you are NOT whiny, it does suck. As time passes you figure out little things that make it way easier overall. The first few months I’ve been really depressed and the holidays were SO hard this year since it was all still brand new. I bought a NIMA (gluten sensor) and that honestly has helped a lot with checking for cross contamination and going out to eat, or going to relatives.

 

As far as not cooking there are actually a decent amount of gluten-free frozen dinners! Even lean cuisine brand! More so in places like earth fare or one of those type places but Walmart has a surprisingly good selection. As far as the vegetarian thing I am so sorry, it would be possible to continue but you’d be very very limited. There are nutritionists that specialize in celiacs disease if you are having trouble I would recommend. Definitely check out the newbie posts here. This website has a bunch of other celiacs that are here for you anytime you need to talk. 

Pasta blends are the best like rozonis gluten-free pasta. There’s a delicious brand of break and bake cookies called sweet Loren’s. They are SOOO good and they are vegan, dairy free and nut free! I’ve found discovering all these things that taste just like the gluten version has made me much happier bc I don’t feel like I’m missing out on as much. If you do decide to make some stuff most “paleo” and “whole30” recipes are gluten-free so that another good google tool like “paleo stuffing” etc. 

also there’s a lab that pays $1000 for your blood within 1 week of diagnosis so they can use it to make more blood tests. I wish I would have known bc I spent a pretty penny replacing food and beauty items.  Best of luck! When first diagnosed I read a bunch of posts saying “ it’s not as bad as you think” from celiacs and it made me sad bc I was all “yessss it isss  “ but I realized they were all right a few months later. 

When I say I don't cook, I just mean I tend to be very minimal when I do, not that I only eat frozen dinners or anything. It's going to be a lot harder and more tedious to find convenience items like sauces and condiments now, and when I do find ones that are usable, they may not taste great. I used to buy this low calorie, high protein very thin pizza crust and would just switch out the veggie toppings. It made a very fast and healthy dinner. I can't find anything comparable in a gluten-free version. They're all very calorie-dense and nutrient-light. But making it from scratch is just not sustainable. I had a lot of go-to healthy, quick, low calorie meals in my back pocket that aren't really replaceable in a gluten-free format. I did have Banza pasta not too long ago and I really liked it and planned to continue using it even before I had a clue about my diagnosis. So I'll probably stick to that. I'm not really sure about going for a lot of gluten-free versions of gluteny things yet. They're so much higher in calories and lower in nutritional value :\ I just worked pretty hard to drop 10 lbs and I don't want to gain it all back. It will suck though. 

But honestly, I also go out to eat a LOT. Probably more than most people do. I live in a city where eating out or ordering delivery is a way of life. No one brings their lunch to work and weekend brunch is a regular occurrence. From that perspective, it seems so anti-social and depressing to just sit in my office and eat a boring sandwich while everyone else on my team heads out to pick something up. Or sip on a glass of water while everyone else is getting orders of pancakes and waffles. But I guess that's just how it's going to be from now on. 

Anyway, I hope you're right that it gets better but I'm not really seeing that at the moment

[Jmg]

22 minutes ago, mewnicorns said:

How do you not get hungry just sitting there and watching everyone else eat and smelling their food while you go without?

Sometimes you do go hungry. In time you realise that isn't so bad, in fact it's probably far more natural a state - it's only recently that people have had their appetite sated at a moments notice. 

Mainly however this happens less and less as you get more attuned to the diet. You keep some nuts/gluten-free protein bars/fruit/safe chocolate etc with you, either at work, in your car, in your coat etc. You use the time when you can eat safely to eat high protein low GI meals that will keep your appetite sated for longer, reducing the cycle of sugary highs and lows that most of the western world is in thrall to. You can turn this to your advantage, but it will take some planning and preparation. 

22 minutes ago, mewnicorns said:

every time they would test my iron levels, vitamins, and metabolic panel and everything came back normal.

I tested normal but improved markedly on the diet. You may want to try a magnesium supplement - I take a combined magnesium, calcium and zinc one and it's had a noticeable effect. Most people on the modern western diet have a magnesium deficiency. Also consider a good B complex.

22 minutes ago, mewnicorns said:

I have depression as well, but it's likely I would have had that anyway due to certain events in my life.

Going gluten free has done me more good than the many anti depressants I was prescribed or the talking therapy I completed. If it is a factor for you then strict adherence to the diet will reap dividends on your mental health. You may also find removing dairy helps with this, but one step at a time

2 minutes ago, mewnicorns said:

Anyway, I hope you're right that it gets better but I'm not really seeing that at the moment

One final observation. When you're depressed it's very easy to see the downsides. Negative automatic thoughts can take over your thinking. You probably know this already, but its helpful sometimes to recognise them before they take hold. 

 

 

[kareng]

If  you live in a big city, you will find lots of places to eat out.  breakfast foods like omlettes are usually gluten-free.  You might have to skip the toast.  

You can find sauces, etc that are gluten-free.  Most all pasta sauces, for example.  For Asian cooking , San J makes life lots of nice gluten-free sauces.  Salsa and many canned enchilada sauces are gluten-free.  You will  have to be able to read small print.  ?

[kareng]

On the work lunches - you may find people a bit jealous of  the lovely grilled chicken taco salad or left over steak salad you bring for lunch.  Your homemade chili will smell so good coming out of the company microwave.  I have found people often wish they were eating my left overs over the junk they got.  And you may not have noticed before,because you didn't care if something was gluten-free, but everyone's favorite soup and salad carry out place has good gluten-free options.

[mewnicorns]

11 minutes ago, kareng said:

I feel you live in a big city, you will find lots of places to eat out,  breakfast foods like omlettes are usually gluten-free.  You might have to skip the toast.  

You can find sauces, etc that are gluten-free.  Most all pasta sauces, for example.  For Asian cooking , San J makes life lots of nice gluten-free sauces.  Salsa and many canned enchilada sauces are gluten-free.  You will  have to be able to read small print.  ?

We have TONS of gluten-free options where I live (seriously, almost everywhere has a gluten-free menu), but the CC issue is very concerning to me. Most of these menus seem to be cashing in on the gullibility of fad dieters more than considering people with actual diseases/intolerances. Often the menu will come with a disclaimer that they can't guarantee that there won't be CC so they don't recommend the menu to celiacs. I think they should just not offer gluten-free items in that case. If you can't guarantee your gluten-free offerings are free of gluten, what's the point?! 

I love San-J's Szechuan sauce! It's not even remotely authentic but it's tasty at least. I think as a vegetarian I relied a lot on healthy, gluten-containing foods like barley, whole grain breads and pastas, etc. so I literally have no idea how to eat anymore. On top of that, I just read that even naturally gluten-free foods like lentils and pulses are usually contaminated?! It just seems like every time I think I've found a solution, it's not actually safe. I actually haven't been eating these past couple of days because everything I'm reading is making me so paranoid

[mewnicorns]

BTW just wanted to throw out a general THANK YOU to everyone who is responding. I appreciate all the support, even if I'm being a bit of a sourpuss right now

[cyclinglady]

Ha!  Karen is right.  You may find friends/co-workers envying your gluten free food.  I pack lunches for my kid and hubby and she ends up sharing (not hubby).  You should see the looks of envy we get a high school football games (we are marching band parents).  I even would bring my favorite soy milk into Starbucks (did not like theirs) when I was lactose intolerant.  

I invested in an assortment of attractive and/or practical coolers.  Pretty ones to take into a restaurant and sturdy ones to withstand the heat (sometimes pack a cooler within a cooler in the summer).  I never leave home without food.  I can always stop in a convenient store for a banana or yogurt.  Easy.  I also food prep in the weekends.  So even if I get sick, I have food ready to go.  It just becomes second nature.  

I bet that depression dissipates once you get a handle on your health!  ?

[Jmg]

26 minutes ago, mewnicorns said:

I think as a vegetarian I relied a lot on healthy, gluten-containing foods like barley, whole grain breads and pastas, etc. so I literally have no idea how to eat anymore.

It definitely looks tougher for vegetarians. Search this site, there's been lots of threads about it and some fantastic looking recipes and tips from users who have been in just your position.

20 minutes ago, mewnicorns said:

BTW just wanted to throw out a general THANK YOU to everyone who is responding. I appreciate all the support, even if I'm being a bit of a sourpuss right now

You're welcome  This is your time to be a sourpuss, revel in it! 

[kareng]

On the restaurants - I live in Kansas city.  It isn't as big as a New York or Seattle.  But we have some very safe places to eat.  Yes, they have the disclaimer.... but they are very careful.  There are some chains that do gluten-free right.  Most higher end places  are very careful with food.  The problem might be bar food.... but even that is possible.  You will learn to judge what places  are safer than others.  for instance - if the menu says fries are gluten-free.... but you ask and its a shared fryer with flour coated things .... question them about other gluten-free.  Might not be a good place for a Celiac... but some will understand and steer you to safe food.   A new trend is to use rice flour to coat onion rings, fried chicken, etc.   That is fabulous for Celiacs.  Certain cuisines are more naturally gluten-free than others.  

 

Look at the app (or just look at the on-line site) "Find me gluten free".  just type in "find me gluten free "name of my city'.  They have reviews that you can read and see if people have Celiac.  IF a place has lots of good reviews, over a period of years, check on them further.  Your city might have a gluten free or Celiac Facebook page, too.  You could make a topic in our restaurant section and ask about your city.

[Ennis-TX]

On 1/7/2018 at 9:43 PM, mewnicorns said:

Hi everyone. This is my first post so bear with me.

Let me start by saying that as little as one month ago, I had absolutely no reason to believe that I would ever be posting here. I, like many of you, was getting ready for the holidays and had no suspicion whatsoever that anything was wrong with me. One thing I had to do in preparation for the holidays was get a refill of my Synthroid (thyroid medication). I went for what I thought was a very routine appointment that would ultimately change my life.

My previous doctor left the practice, so I saw the new endocrinologist that was hired to replace her. She asked me all the usual questions and took my height and weight. Then she looked through my file to see what dosage I was on. She looked surprised and said it was a relatively high dose for someone of my size, so she wanted to test me for celiac in case I had an absorption problem. I just shrugged it off, fully confident it would come out negative. I know there is a strong association between Hashimoto's and celiac, but I have never had any symptoms or nutrient deficiencies, other than Vitamin D (which improved as soon as summer came around and I was getting more light). No one in my family has celiac either (or at least hasn't been diagnosed with it).

So imagine my surprise when my TTG test came back positive. It was a weak positive, but a positive nonetheless. Despite that, I still held out hope. I read that the TTG test has an extremely high rate of false positives, especially in people with other autoimmune disorders. I followed up with a GI and he was not prepared to say I was even likely to have it based on that one test result. He needed more information before he could confirm, so he ran some more tests. In the meantime, he told me to not worry about it, eat normally, and enjoy the holidays, which I tried to do, but I was pretty scared. I scheduled my endoscopy for Jan. 5 because that was the earliest possible date available.

I did not get my test results until I went in for the procedure this past Friday. He told me they all came back positive (still a weak positive, but positive).  I just nodded because I was afraid if I tried to talk, I would start crying. When I was hooked up to the monitor, he noted my heart rate and asked me if I was nervous. I nodded again. He asked me if it was about the procedure or about the results. I told him it was the results and I did indeed start to cry (he held my hand and told me I could keep a poker face, but I can't hide from the heart rate monitor). Then he said to just relax. The blood tests weren't definitive and I should just wait and see what the biopsy shows. I knew he was just saying that to make me feel better, though. I did my research, and I know that if all the tests are positive, then it means I have it. At this point, all the biospy will tell me is how much damage is there. He noted that my intestines looked fine superficially, but that they do in about 80% of celiac cases.

I'm not going to get into all the details of why this makes me so upset. All of you are already familiar with the challenges of this extremely onerous diet: the hypervigilance, lack of spontaneity, social isolation, etc. The reason I am so depressed is because I'm not suffering to begin with! At least not in a way that I can physically feel. I'm not going to feel better because I don't feel bad in the first place, which makes all of this seem like even more of a burden. Not to mention I have no idea how to find out if I HAVE accidentally ingested something bad if I don't notice it physically. I eat a LOT of gluten-containing foods, and even in the quantities I consume now, I feel nothing. If I ate a crumb of bread, I won't experience anything.

I know I must sound incredibly whiny to most of you who actually experience suffering from ingesting gluten. I'm lucky not to be very sensitive or experience a great deal of pain. But at least you must have felt some relief to finally have an answer to and a solution for your suffering. I have no nutrient deficiencies, no pain, no GI issues, no brain fog, etc. I only have a bit of fatigue, but so does everyone I know. Having to give up all my favorite foods and cultural cuisine sucks, and I don't know where I'm going to find the time to cook the majority of my meals from scratch (not to mention I don't even enjoy cooking). I'm also a vegetarian of 15 years, which I don't think I can maintain anymore, and that utterly breaks my heart. The whole ordeal has sunk me into a serious depression. I can't stop thinking about it and obsessing over it. It feels like a nightmare I can't wake up from. I sincerely hope it won't be as bad as it seems right now, but in the meantime, I just needed a vent. I don't know if there's anyone reading this who has also gone through a similar thing (asymptomatic, surprise diagnosis, depression from the results). I just wish I could rewind a month and never see that endocrinologist. There is something blissful about ignorance. 

Sorry late to the party here, but there are many meal options...I am mostly vegetarian myself egg whites are the pretty much the only animal product I eat daily, I sometimes have fish or crab.
Stir Fries, soups will probably be a huge to to for you, your lucky you can have rice and gluten-free pasta....I can not, I have to have konjac no carb versions due to another AI disease that flares up with sugars and carbs. I personally love using coconut secret coconut aminos and their teriyaki sauce in recipes often. I have a whole list of gluten-free food options I compiled for others and recipes on my profile blog here, many vegan. Hopefully they will be of some help for you, PS mealprep. Make HUGE pots of soup and pans of stir fry and pack them for a few days of meals.
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

[mewnicorns]

1 hour ago, Ennis_TX said:

Sorry late to the party here, but there are many meal options...I am mostly vegetarian myself egg whites are the pretty much the only animal product I eat daily, I sometimes have fish or crab.
Stir Fries, soups will probably be a huge to to for you, your lucky you can have rice and gluten-free pasta....I can not, I have to have konjac no carb versions due to another AI disease that flares up with sugars and carbs. I personally love using coconut secret coconut aminos and their teriyaki sauce in recipes often. I have a whole list of gluten-free food options I compiled for others and recipes on my profile blog here, many vegan. Hopefully they will be of some help for you, PS mealprep. Make HUGE pots of soup and pans of stir fry and pack them for a few days of meals.
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

What a wonderful reference. Thank you! Glad to hear you've been able to make it work for you despite being so restricted.

I've never been much of a prepper or planner when it comes to food. I tend to do things very spontaneously and just go by what I feel like eating that day because I get bored easily. This is going to be very difficult for me, but I made an appointment with a dietician next week who can hopefully help me figure it out. I think for now, it might be best to divorce the idea of food from pleasure and only look at it as a tool for survival. Then once I start getting the hang of it, I can start looking into how to make it enjoyable again. It's just all so overwhelming right now.

[pikakegirl]

Mewunicorns, first love the name. Second i am so sorry for your new membership to our Celiac survival. Third i just want you to know that i have silent Celiac also. Took 20 yrs to diagnosed. Lived a life with strange illnesses befalling me slowly but traumatically. Now i see all related to active Celiac. At first everything was about food and healing. Used my fear, anxiety and depression like adenaline to research. Became a little overwhelmed but set up an eating and preprepping routine for my food life. I have not eaten out for 10 years but i am considered extreme i suppose. For me diagnosis saved my life but more than that pushed me to take control of my food education and future health. Even my family members are eating healthier because of me. At first it was stressful but now i dont remember my old eating habits and i dont even see restaurants as i drive by.  I look forward to my food everyday and have lost the memory of what all the old diet tasted like. I wish you health and longevity.

[Ennis-TX]

1 hour ago, mewnicorns said:

What a wonderful reference. Thank you! Glad to hear you've been able to make it work for you despite being so restricted.

I've never been much of a prepper or planner when it comes to food. I tend to do things very spontaneously and just go by what I feel like eating that day because I get bored easily. This is going to be very difficult for me, but I made an appointment with a dietician next week who can hopefully help me figure it out. I think for now, it might be best to divorce the idea of food from pleasure and only look at it as a tool for survival. Then once I start getting the hang of it, I can start looking into how to make it enjoyable again. It's just all so overwhelming right now.

LOL your thinking about it wrong, you do meal prep bland no seasoning or neutral, STOCK up on many different spices, and flavors like flavors from capellas seasonings from Spicely organics, sauces form coconut secret, organicville, Heck if like me and miss meats, I grabbed some chorizo and sausage seasonings from The Spice House and seasoning each meal differently HELL season 2-3 portions of the same meal differently and enjoy a buffet of flavors and cuisines. And feel free to go a tad crazy sometimes, >,< Today by example I used Kite Hill Ricotta almond cheese in scrambled eggs with Italian seasonings, beyond meat beefy crumbles, and topped with a bit of homemade marinara sauce, for a ravioli tasting scramble served with my own keto bread (like Julian bakery bread) with butter flavored coconut oil on it and some garlic powder and parsley. and used romaine lettuce leaves for scoops.

[mewnicorns]

2 hours ago, pikakegirl said:

Mewunicorns, first love the name. Second i am so sorry for your new membership to our Celiac survival. Third i just want you to know that i have silent Celiac also. Took 20 yrs to diagnosed. Lived a life with strange illnesses befalling me slowly but traumatically. Now i see all related to active Celiac. At first everything was about food and healing. Used my fear, anxiety and depression like adenaline to research. Became a little overwhelmed but set up an eating and preprepping routine for my food life. I have not eaten out for 10 years but i am considered extreme i suppose. For me diagnosis saved my life but more than that pushed me to take control of my food education and future health. Even my family members are eating healthier because of me. At first it was stressful but now i dont remember my old eating habits and i dont even see restaurants as i drive by.  I look forward to my food everyday and have lost the memory of what all the old diet tasted like. I wish you health and longevity.

That is extreme, but I bet you have healed well. Thank you <3 

[mewnicorns]

1 hour ago, Ennis_TX said:

LOL your thinking about it wrong, you do meal prep bland no seasoning or neutral, STOCK up on many different spices, and flavors like flavors from capellas seasonings from Spicely organics, sauces form coconut secret, organicville, Heck if like me and miss meats, I grabbed some chorizo and sausage seasonings from The Spice House and seasoning each meal differently HELL season 2-3 portions of the same meal differently and enjoy a buffet of flavors and cuisines. And feel free to go a tad crazy sometimes, >,< Today by example I used Kite Hill Ricotta almond cheese in scrambled eggs with Italian seasonings, beyond meat beefy crumbles, and topped with a bit of homemade marinara sauce, for a ravioli tasting scramble served with my own keto bread (like Julian bakery bread) with butter flavored coconut oil on it and some garlic powder and parsley. and used romaine lettuce leaves for scoops.

I know it seems that way but I don't ever really cook anything very complicated so just getting that nailed down is going to be difficult for me, especially given what a terrible planner I am. I do not have a lot of free time and I have no help. It's going to be a huge adjustment. I figured I'd try to just get the basics nailed down and then worry about how to make things taste good. For me, this is almost like having to forget everything I know about food and completely re-learn how to eat. I'm going to try and see it as an opportunity to try new things and focus on what I can eat and forget about what I can't, but it's going to take some time before I'm there. It also occurred to me that one reason I don't cook much is because I don't have a lot of energy after work. If I start feeling better, though, maybe I will. I really hope that I do.

I am, however, happy to hear BM products are gluten-free! I have like 4 bags of chicken strips in my freezer and I was afraid to look at the ingredients. That makes me feel a bit better  

In the midst of all this craziness, I just got invited to a pizza party :\ It's unlimited pizza for $40/person. I'm obviously not going to be partaking in this, so I guess I'll be saving money at least. Going to see if I can bring my own from one of the gluten-free places.

[Jmg]

2 hours ago, Ennis_TX said:

Today by example I used Kite Hill Ricotta almond cheese in scrambled eggs with Italian seasonings, beyond meat beefy crumbles, and topped with a bit of homemade marinara sauce, for a ravioli tasting scramble served with my own keto bread (like Julian bakery bread) with butter flavored coconut oil on it and some garlic powder and parsley. and used romaine lettuce leaves for scoops.

And here's me thinking I'm Gordon Ramsay when I chill a tin of coconut milk for a whipped cream substitute on my Christmas Trifle! You're showing me up mate