Emotionally Right Back To Where I Was 18 Months Ago

[tspiggy]

I was DX with celiac on 10/11/12, about 18 months after initial onset of symptoms.  Except for chronic upper abdominal pain and an 11-lb. weight loss, my symptoms had been more neurological than digestive: massive brain fog, occasional tingling in hands and feet, chronic fatigue.  The worst was raging anxiety and panic attacks, followed by crushing depression.  The doctor who diagnosed my celiac clearly knew next to nothing about it -- he actually said I could occasionally cheat and eat gluten.  I was left on my own to research my condition as well as what I could and couldn't eat.  With my gluten-induced anxiety levels so high, my research sent it through the roof.  I posted questions on this forum about coping mentally with the disease and how to manage the fear, and was reassured by a lot of caring people.

 

With the help of my wonderful nutritionist, I responded quickly to the gluten-free diet.  In two months my abdominal pains were gone and my energy returned.  In six months all the other symptoms resolved themselves and I gained back all the weight I'd lost.  I didn't seem to have any additional food intolerances.  After time, effort and a couple of accidental glutenings, I mastered the lifestyle and it became second-nature.  My anxiety, while not entirely gone, improved tremendously and my mood improved.  I felt well and optimistic for the first time in a couple of years.

 

Even prior to diagnosis I continued to have annual routine exams, but the doctors couldn't figure out what was wrong with me.  All my blood work was normal.  Thyroid functions were normal, I had no anemia or other deficiencies.  The celiac panel is what caught the disease and confirmed by endoscopy.  It seemed I was very fortunate to have been diagnosed only 18 months after onset of symptoms and seemingly before any serious complications set in.

 

Earlier this week I felt mentally strong enough to go back to researching celiac information online.  I found a blog that I thought was the answer to my prayers.  But I started reading one story after another from celiacs who developed food intolerances or other illnesses after being gluten-free for years and my anxiety ramped up again.

 

I feel well.  I've been feeling well for nearly a year.  My most recent blood work last November showed no deficienices and everything to be normal.  Even my monocyte levels were normal (they were sky-high at diagnosis).  Based on exams and test results I appear to be healthy except for the celiac.  I thought that by avoiding gluten (accidental exposure notwithstanding) and eating healthy my gut would eventually heal and I'd be ok.  Now I was reading stories about people who were developing other illnesses after being gluten-free for years.

 

So now I'm emotionally back to where I was 18 months ago, except that I feel physically well but scared to death, anxious as all hell and unable to deal.  I've gotten nothing accomplished all week because fear has kept me paralyzed.  I need reassurance.  I need answers.  My nutritionist has already warned me that I will not heal if I don't learn to manage my stress levels, and until I read those blog posts I had it all under control.  How do you manage the fear and the knowledge that even doing everything right there's still the possibility of complications down the road?  I can't imagine living the rest of my life with this fear.  That's not living.

[kareng]

I have been gluten-free & diagnosed for over 4 years.  I have not developed any additional intolerance or autoimmune diseases.  I know several people locally with Celiac Disease who don't have other issues.  I know one girl with a lot of allergies  but she has had those since birth.  Some "intolerances" are normal in lots of people - even non-Celiacs.  For example, many people are lactose intolerant.  This is just a  normal fact of life.

 

I would say that the majority of Celiacs do not have a lot of other problems pop-up when gluten free. The ones who continue to have problems post on Forums.  The ones that are doing well- don't.  I really think the vast majority of Celiacs are doing well and you won't see much about them.

 

I used to work at a Children's hospital.  We had a neonatal intensive care doctor.  The only patients she ever saw were the exceptionally sick or very pre-mature patients.  She didn't get the "just a bit pre-mature" or a "little bit sick" ones.  She got the worse ones.  Many died.  She never treated well or normal babies.  When she got pregnant,  we asked her if she was more worried than a normal mom because all she ever saw were the sickest babies.  She said no. She realized that the babies she treated were a very small minority of all the babies born in the world.  Its like that with Celiacs - the majority of them are doing well, we just don't see them on these forums/blogs.

 

Hope that rambling story was helpful.  

[dilettantesteph]

I did have further problems, but I managed them and life is good.  Don't worry so much.  When things go wrong, people need to vent about it.  When things go right, people get on with their lives and don't write long blog posts about that.  If something comes up, you will figure out.  There are lots of researchers out there figuring stuff out.  This gets easier and easier.

[GF Lover]

I wouldn't spend one minute of my time worrying about what might happen.  You are healthy now and enjoy and your good health will help you if something comes up down the road.

 

Colleen

[cristiana]

I was very anxious before my diagnosis..  I found a book by a chap called Paul David which helped me understand anxiety better and it gives advice on recovery. I gather some GPs in the UK recommend it and I can see why.   He also has a website.    Thing is, he explains that setbacks can occur but that doesn't mean you are back to where you were.  That helped me because there were days when it came back in force and I thought all was lost.  But it wasn't, it is just a part of the process really.  

 

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[Gemini]

The one thing to remember is that everyone, regardless of whether or not they have Celiac Disease, could develop a problem as they get older. It's called the aging process.  However, that does not mean you will develop further problems from Celiac.  I have 3 other autoimmune diseases from going so long with undiagnosed Celiac and will turn 55 years old in June and I am doing great.  I am so optimistic, it pisses people off.    I just cannot waste one moment of healthy life worrying about what could or might happen down the road. I know that can be difficult sometimes and we all have our moments of anxiety but if you follow a strict gluten-free diet, exercise doing something that is fun and you enjoy and take part in life on a regular basis, then you will be doing all you can to ward off potential problems.  You are also only 18 months into the gluten-free lifestyle and I bet you didn't know that seratonin is made in the gut?  It is and 18 months is just the beginning of long term healing, so give it awhile longer and you might find the anxiety receding because your gut will continue to heal and your brain will be happier.  I will add that exercise does amazing things for anxiety and worry.  I can go into the gym after a bad day and do my weight training and cardio and when I leave an hour later, I am so mellow and all the bad is banished. 

 

To be very honest, I also do not go to the doctors as much as most people.  I go when I need to but I find they are Debbie Downers myself and actually try and instill too much fear in people.  I know they see a lot of sickness but really...no need to instill chronic fear in the rest of the population.  You seem to have found a great nutritionist, which is good.  But get out there, exercise and enjoy life.  Do the things you love often.  It really helps. 

 

[JosieToo]

I'm not sure if it helps, but I went through a similar phase. I became terrified after reading online comments about other "intolerances" and other diseases. I finally went to see an allergist and he told me this. "Some people have Celiac disease and other issues. Most just have Celiac disease.". I would try to avoid any speculative and anecdotal commentary about celiac disease - I tend to stick with reputable, supported-by-science sources (like the University of Chicago Celiac Disease Center). For example, aside from dairy which some Celiacs have a problem with (which resolves for many after a time on a gluten-free diet), there is zero peer-reviewed medical literature that supports the idea of "food intolerances" with celiac disease.

 

My GI doc told me that while people with celiac disease can have a higher rate of developing some other related auto-immune conditions, the risk is still relatively low and strict adherence to a gluten free diet is your best defense.

[HavaneseMom]

It is fantastic that you have been feeling physically well nearly a year and that all of your test are normal! Congrats!

If it is has caused you so much anxiety to read that blog, it might be best to avoid reading things like that from now on. I have dealt with anxiety issues for a lot of years too. When I was in college I saw a counselor about it. I was getting really upset about world events and things I was reading in the paper, etc. She told me that I should stop reading the newspaper and watching the news, because there is nothing I can do about those things anyway and they are just upsetting me and making me anxious and fearful. It seemed like strange advice at the time, but it is true. I don't know much about world events as a result, but I do have less anxiety, fear and sadness. Also, As a worrier myself, my mom has always told me that 99% of the things I spend time worrying about will never actually happen. I have found this to be pretty much true. You are doing great with your Celiac recovery. Try to have some fun this weekend to keep your mind off of the things you have been worrying about :-)

[tspiggy]

I was very anxious before my diagnosis..  I found a book by a chap called Paul David which helped me understand anxiety better and it gives advice on recovery. I gather some GPs in the UK recommend it and I can see why.   He also has a website.    Thing is, he explains that setbacks can occur but that doesn't mean you are back to where you were.  That helped me because there were days when it came back in force and I thought all was lost.  But it wasn't, it is just a part of the process really.  

 

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Yes...Anxiety No More.  I discovered his website when the anxiety attacks first started and ordered his book.  I still have it but haven't read it in a few years.  It's time to check out both the book and website again.  Thanks for the referral. :-)

[cristiana]

Yes...Anxiety No More.  I discovered his website when the anxiety attacks first started and ordered his book.  I still have it but haven't read it in a few years.  It's time to check out both the book and website again.  Thanks for the referral. :-)

Amazing book - an absolute godsend.  I think it helps that it is written by an ex-sufferer.   That chapter on Setbacks may be all you will need to read. Oh... and make sure your iron and B12 levels are good, that will really help.  All the very best.    

[1desperateladysaved]

It helps me when I feel anxious to remember how badly I use to feel.  I haven't lost it all.  Don't forget to enjoy how strong, clear headed and energetic you are.  I also need to remind myself that when I am having a low day, that it will pass.  I tend to lose hope very fast and feel as if I am dying again.  But so far, after a few days I am feeling better again.

 

Are you sure some gluten didn't sneak in to spoil your feelings?

 

Dee

[tspiggy]

It helps me when I feel anxious to remember how badly I use to feel.  I haven't lost it all.  Don't forget to enjoy how strong, clear headed and energetic you are.  I also need to remind myself that when I am having a low day, that it will pass.  I tend to lose hope very fast and feel as if I am dying again.  But so far, after a few days I am feeling better again.

 

Are you sure some gluten didn't sneak in to spoil your feelings?

 

Dee

Dee,

 

The thought crossed my mind that I could have been accidentally glutened, as my anxiety hadn't been this high since before DX, but after retracing my steps I still can't figure out where it would have come from.  In any case, I'm feeling MUCH better...everyone's positive, supportive replies have helped me calm down considerably and I went out and burned off some of this excess nervous energy yesterday. Some housework still needs to be done, but after that it's time to kick back and put my feet up to relax.

 

Thanks again to everyone.  Hope you're having a great weekend.

[tspiggy]

The one thing to remember is that everyone, regardless of whether or not they have Celiac Disease, could develop a problem as they get older. It's called the aging process.  However, that does not mean you will develop further problems from Celiac.  I have 3 other autoimmune diseases from going so long with undiagnosed Celiac and will turn 55 years old in June and I am doing great.  I am so optimistic, it pisses people off.    I just cannot waste one moment of healthy life worrying about what could or might happen down the road. I know that can be difficult sometimes and we all have our moments of anxiety but if you follow a strict gluten-free diet, exercise doing something that is fun and you enjoy and take part in life on a regular basis, then you will be doing all you can to ward off potential problems.  You are also only 18 months into the gluten-free lifestyle and I bet you didn't know that seratonin is made in the gut?  It is and 18 months is just the beginning of long term healing, so give it awhile longer and you might find the anxiety receding because your gut will continue to heal and your brain will be happier.  I will add that exercise does amazing things for anxiety and worry.  I can go into the gym after a bad day and do my weight training and cardio and when I leave an hour later, I am so mellow and all the bad is banished. 

 

To be very honest, I also do not go to the doctors as much as most people.  I go when I need to but I find they are Debbie Downers myself and actually try and instill too much fear in people.  I know they see a lot of sickness but really...no need to instill chronic fear in the rest of the population.  You seem to have found a great nutritionist, which is good.  But get out there, exercise and enjoy life.  Do the things you love often.  It really helps.

Some doctors are awful.  When I was still trying to get a diagnosis, one internist told me it was IBS due to stress.  He gave me prescriptions for Lexapro and Xanax and actually said that I would end up institutionalized if I didn't get a handle on the anxiety.  Can you imagine?  I had one horrible reaction to the Lexapro and never touched it again.  The Xanax remains unopened in a desk drawer.  An eye surgeon who was called in to examine my elderly mom in the E.R. when she fell a couple of years ago and struck her eye socket discovered macular degeneration (she was 85 at the time).  He told me it was hereditary and I could expect it to happen to me.  What was the point in telling me this?

[kareng]

 discovered macular degeneration (she was 85 at the time).  He told me it was hereditary and I could expect it to happen to me.  What was the point in telling me this?

 

 

Not to have you spend your life worrying about it.  But to let you tell your eye doctor and keep an eye out for it.  There are better and better treatments for it. If you get it, you may be able to fix it before it gets bad.

[notme]

i use xanax when i am stressing.  i take very little of it (i break the pill into, like 6 pieces) but it works wonders because i am a worrier, like you.  but i can't think or function to solve my problem that is stressing me when all i'm doing is stressing.  if that makes any sense.  

 

i was also thinking you may have been glutened.   when i do, my anxiety goes thru the roof...  glad you are feeling better

[notme]

ps - the serenity prayer works to keep things in perspective  

[Gemini]

Some doctors are awful.  When I was still trying to get a diagnosis, one internist told me it was IBS due to stress.  He gave me prescriptions for Lexapro and Xanax and actually said that I would end up institutionalized if I didn't get a handle on the anxiety.  Can you imagine?  I had one horrible reaction to the Lexapro and never touched it again.  The Xanax remains unopened in a desk drawer.  An eye surgeon who was called in to examine my elderly mom in the E.R. when she fell a couple of years ago and struck her eye socket discovered macular degeneration (she was 85 at the time).  He told me it was hereditary and I could expect it to happen to me.  What was the point in telling me this?

Yeah, I think that any doctor who would say that is kind of a jerk. Just because something is hereditary does not mean you will get it. My father has glaucoma and I never give it a second thought. He is on eye drops to control the pressure in his eyes and has not lost any vision and he is 81. I see an ophthalmologist because I have Sjogren's Syndrome and have dry eye and told her and she did not seem too concerned. I have perfect pressure in my eyes and she even told me that doesn't mean I will get it. She is one of a few doctors I have had that I actually like for her level headed answers. She is not a scare monger.

I think part of the problem is that people get sent to a different doctor for every problem. Even if you are managing your health issues well, they want to send you off all the time for the ever popular "monitoring". Some health problems may require this, especially if you aren't doing all you can to manage it but not all problems need constant attention, if you pay attention to what is normal for you and what is not.

I have 4 autoimmune issues and I have never gone to a Rheumatologist. I have never heard of a satisfied patient that goes to a Rheumy.

They tend to push meds that you may not need. I kind of cheat because I have my thyroid doc do some of the blood work for my other issues so I can check them myself. They keep improving so no need to see yet another doctor for now.

I think everyone who eventually was diagnosed with Celiac has had the IBS with paranoia/ stress thrown at them. Really insulting, especially considering IBS isn't even a real diagnosis. Yeah, thanks for telling me my bowel is irritated.......I never would have known without your highly professional input!

[KCG91]

I had three doctor's appointments where after prodding my stomach and ascertaining that I wasn't pooping blood, she sent me away because there 'wasn't anything seriously wrong with me' - so when the doctor who diagnosed me prodded my stomach and then ordered further tests I freaked out... (Sweetened the coeliac pill though!) 

[tspiggy]

Yeah, I think that any doctor who would say that is kind of a jerk. Just because something is hereditary does not mean you will get it. My father has glaucoma and I never give it a second thought. He is on eye drops to control the pressure in his eyes and has not lost any vision and he is 81. I see an ophthalmologist because I have Sjogren's Syndrome and have dry eye and told her and she did not seem too concerned. I have perfect pressure in my eyes and she even told me that doesn't mean I will get it. She is one of a few doctors I have had that I actually like for her level headed answers. She is not a scare monger.

I think part of the problem is that people get sent to a different doctor for every problem. Even if you are managing your health issues well, they want to send you off all the time for the ever popular "monitoring". Some health problems may require this, especially if you aren't doing all you can to manage it but not all problems need constant attention, if you pay attention to what is normal for you and what is not.

I have 4 autoimmune issues and I have never gone to a Rheumatologist. I have never heard of a satisfied patient that goes to a Rheumy.

They tend to push meds that you may not need. I kind of cheat because I have my thyroid doc do some of the blood work for my other issues so I can check them myself. They keep improving so no need to see yet another doctor for now.

I think everyone who eventually was diagnosed with Celiac has had the IBS with paranoia/ stress thrown at them. Really insulting, especially considering IBS isn't even a real diagnosis. Yeah, thanks for telling me my bowel is irritated.......I never would have known without your highly professional input!

 

IBS seems to be the "go to" diagnosis when the doctors can't figure out what's wrong with your gut and don't know enough about celiac to test for it.  My dx was a fluke...the G.I. doc I went to for the pain under my ribs ordered an endoscopy suspecting gastritis.  Turned out negative for that but positive for celiac.  Glad he found it, but then he showed his ignorance about the disease by telling me it was ok to cheat occasionally.  Uh...no.

[tspiggy]

I have been gluten-free & diagnosed for over 4 years.  I have not developed any additional intolerance or autoimmune diseases.  I know several people locally with Celiac Disease who don't have other issues.  I know one girl with a lot of allergies  but she has had those since birth.  Some "intolerances" are normal in lots of people - even non-Celiacs.  For example, many people are lactose intolerant.  This is just a  normal fact of life.

 

I would say that the majority of Celiacs do not have a lot of other problems pop-up when gluten free. The ones who continue to have problems post on Forums.  The ones that are doing well- don't.  I really think the vast majority of Celiacs are doing well and you won't see much about them.

 

I used to work at a Children's hospital.  We had a neonatal intensive care doctor.  The only patients she ever saw were the exceptionally sick or very pre-mature patients.  She didn't get the "just a bit pre-mature" or a "little bit sick" ones.  She got the worse ones.  Many died.  She never treated well or normal babies.  When she got pregnant,  we asked her if she was more worried than a normal mom because all she ever saw were the sickest babies.  She said no. She realized that the babies she treated were a very small minority of all the babies born in the world.  Its like that with Celiacs - the majority of them are doing well, we just don't see them on these forums/blogs.

 

Hope that rambling story was helpful.  

 

I meant to reply to you sooner...sorry about that!

 

Your story wasn't rambling at all.  It clarified the situation for me in a way that none of my well-meaning but non-celiac friends could.  The neonatal ICU nurse story was a perfect example.  It's similar to being afraid to fly after hearing about a plane crash.  Of course the news is going to report (endlessly, it seems) about a plane crash or mishap without even mentioning the thousands of planes that land safely every day in this country alone.  When my anxiety is that high, however, all logic goes right out the window.  Compounding the situation is that my OCD kicks in and I obsessively research everything celiac-related I can find, distressing myself even more.  I seem to go looking for trouble. 

 

Thanks to you, and to everyone who responded, for being my voices of reason.  I'm feeling better.

[kareng]

  When my anxiety is that high, however, all logic goes right out the window.  Compounding the situation is that my OCD kicks in and I obsessively research everything celiac-related I can find, distressing myself even more.  I seem to go looking for trouble. 

 

 

 

 

I am glad you are doing better.  If this continues to be a problem for you, you might need to get some help.  Maybe some counseling/training and some medication until you have learned the coping skills?