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Confused and anxious

Ruth P

By Ruth P
in Coping with Celiac Disease

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Ruth P Newbie
Ruth P
Posted

Hi - so I am 60 years old and have occasionally had issues of IBS after being diagnosed in my 20's.  I also suffer from depressive/anxiety disorder and have been on the smallest dose of Effexor since 2009.  Although there are other things going on in my life that are stressful, it seems like my Celiac diagnosis has catapulted me into depression and anxiety. I went for routine colonosopy and they added in a endoscopy due to my worsening symptoms.  Biopsies came back for possible celiac and then my doc ordered blood test which confirmed.  I was in disbelief.  The first week I went gluten free I felt amazing.  Then things kind of went down hill as I struggled to learn to eat especially since we had a lifestyle of eating out so much.  Anxiety started kicking in and soon I couldn't tell if my worsening GI issues were anxiety or gluten I might have accidentally ingested.  I struggled with feeling food that I was so much in love with was now potential poison.  And while trying to adopt a glass half full attitude over what I could still eat I got depressed over what I couldn't or the hassle of constantly planning or trying to figure out meals.  I read a blog somewhere that someone said the first year they felt they were going crazy.  HELP.  I don't know how to get out of this vicious cycle of anxiety which is messing up my efforts at eating right.

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cyclinglady Grand Master
cyclinglady
Posted

Welcome Ruth!  I am so sorry that you are struggling with your new diagnosis.  It is common.  You are not alone.  You are grieving about the loss of old foods, the constant label reading, and your old social life.  All NORMAL!  

It will take time to heal both physically and emotionally.  But there is good news!  Your depression and anxiety might become a thing of the past.   Both are common symptoms of celiac disease.  

I would suggest reading our Newbie 101 thread as an introduction.  Then out together a plan of action in terms  of keeping you safe in your home.  A shared household can be done with the cooperation of all its occupants.  You need a safe haven!  We decided that our home needed to be 100% gluten free as it work best for us.  

  My hubby had been gluten free for 12 years prior to my diagnosis.   You can imagine the disbelief, when I went for a routine colonoscopy and during my GI consult, he recommended an endoscopy and celiac blood test.  (Life long anemia was my symptom).  What?  Two of us with a gluten issue?   I knew exactly what it meant!!!!  I had already been keeping him safe so at least I had already mastered the gluten free diet.  

But with time, things get easier.  We still go out to eat with friends.  We just typically order a drink and eat prior to going out.  We bring snacks.  Our friends have been great.  We entertain at home.  I make a special effort in making our dining room look like a restaurant and use all the inherited china instead of saving it for special holidays.  We entertain in our backyard too (we live in sunny California).  We do not accept gluten items into the house.  Most of our guests bring wine or they ask about gluten free foods that they can bring in (e.g. Breyer's ice cream or uncut fruit/veggies, etc.).  Our non-celiac kid eats gluten outside if the house.  

Look for a celiac group in your area for support. You might find it helpful, or just hang around here.  

I would suggest a more Whole Foods diet until you start to see improvement and avoid going out to eat (or go and just order a drink) as cross contamination is a serious issue.  Look for a gluten-free bakery in your area.   I think you will find that you will heal faster.  But indulge every once-in-while gluten-free treat.  

Get hubby to brush his teeth before kissing you!  You can get a gluten exposure from that alone!!!! ? 

Make sure your medications are gluten free.  Call the manufacturer or get you pharmacist to confirm for you.  Most are gluten free, but a few are not.  

Take one day at a time.  Things do get better, I promise!  

 

Airchee Rookie
Airchee
Posted

Hello and welcome!

Airchee Rookie
Airchee
Posted

Hello and welcome.

 I was diagnosed four months ago with biopsy. You sound exactly like me. I was shocked by the diagnosis. For the first few days Gluten-free I felt good and then suddenly plummeted into a depression/anxiety like I had not experienced in many years.  It made it much more difficult to deal with learning this new lifestyle. I hated hearing that I just needed time. I just wanted my old life back! Grieving is definitely part of the process   Well, even though I am only four months in and still on this learning curve, I understand that time really is on our side. As this new life becomes more normal each day I feel better and more able to accept it. Even embrace it. My depression and anxiety has improved significantly and my G.I. symptoms are virtually gone. I know I have a long ways to go but I am very encouraged by the fact that I am healing. I had two mantras in the beginning that helped me a lot. The first one is: "This day." Referring to the fact that this day that I am in is the only one that I need to worry about and I can handle it. The second one is "Patience"  meaning that it's so important that you are patient with your body and yourself.  Try to find a Celiac group in your area or someone who has celiac disease or is gluten-free. Talking with them helps a lot. Even though it seems hard to believe right now everything is going to be OK. It will become normal and you will be amazed how you came through it.

Jmg Mentor
Jmg
Posted

Hi Ruth and welcome :)

You've found  what I think is the best place on the web for those of us with a gluten issue. There are some great people here with awesome experience of just what you're going through. They got through it and so will you. 

This struck a chord with me and doubtless others:

7 hours ago, Ruth P said:

 The first week I went gluten free I felt amazing.  Then things kind of went down hill as I struggled to learn to eat especially since we had a lifestyle of eating out so much.  Anxiety started kicking in and soon I couldn't tell if my worsening GI issues were anxiety or gluten I might have accidentally ingested.  

Check out this graph, it's about learning curves but it could equally apply to the first few months on the diet: Bipolar-Learning-Curve.webp

After that immediate amazing feeling when gluten is removed I had what you may term a relapse and my stomach was churning and gurgling so much it was like a washing machine! Gradually over time it settled down and I started to feel better, but it wasn't an instant thing and it wasn't a constant upward gradient, again like the graph. The good news is that eventually, like the graph, I felt better even than that first initial high. You will too, but in between now and then you have healing to do. Your body has been under attack for a long time and you now need to give it the best chance to heal. That means eating well, eradicating any rogue gluten from your diet and maybe supplementing vitamins, you may want to ask your doctor to check your levels if that's not already happened. I know I feel a lot better when I'm taking a Vitamin B supplement and you may too. 

As for this:

7 hours ago, Ruth P said:

 HELP.  I don't know how to get out of this vicious cycle of anxiety which is messing up my efforts at eating right.

It's natural to feel some anxiety, but did you know some of that may originate with gluten? It can cause depression, anxiety, brain fog and other symptoms you may not even be aware you had. As you progress on the diet and become more proficient and knowledgeable your anxiety will reduce. Again look at the graph, this time as a learning curve, the key word is TIME, as it passes the initial shock and then the grieving process will pass and you'll be able to appreciate the healing process underway. You'll become a master of the gluten free diet and you'll find all the workarounds you need to integrate this diet with your wider life.

Best of luck! 

 

 

Ruth P Newbie
Ruth P
Posted
  • Author

Thank you so much! The biggest help is having someone validate my feelings.  Family members can't seem to understand despite their best intentions. I felt I would be wrong to assign any serious emotions to this diagnosis and always struggle with giving any credence to anxiety and depression. But sometimes you have to stop fighting to move forward. I will try to be more patient with the process and myself. 

EasterLily Explorer
EasterLily
Posted
On 4/6/2017 at 8:48 AM, Ruth P said:

Hi - so I am 60 years old and have occasionally had issues of IBS after being diagnosed in my 20's.  I also suffer from depressive/anxiety disorder and have been on the smallest dose of Effexor since 2009.  Although there are other things going on in my life that are stressful, it seems like my Celiac diagnosis has catapulted me into depression and anxiety. I went for routine colonosopy and they added in a endoscopy due to my worsening symptoms.  Biopsies came back for possible celiac and then my doc ordered blood test which confirmed.  I was in disbelief.  The first week I went gluten free I felt amazing.  Then things kind of went down hill as I struggled to learn to eat especially since we had a lifestyle of eating out so much.  Anxiety started kicking in and soon I couldn't tell if my worsening GI issues were anxiety or gluten I might have accidentally ingested.  I struggled with feeling food that I was so much in love with was now potential poison.  And while trying to adopt a glass half full attitude over what I could still eat I got depressed over what I couldn't or the hassle of constantly planning or trying to figure out meals.  I read a blog somewhere that someone said the first year they felt they were going crazy.  HELP.  I don't know how to get out of this vicious cycle of anxiety which is messing up my efforts at eating right.

Hi Ruth.

I am very new here also, but I can totally relate to the anxiety. I have anxiety and depression too. I've been dealing with a lot of extreme nausea which is making me very anxious and depressed. I don't have any words of wisdom, but you will find a lot of great advice and support here. I am on day 11 of my diet and still waiting to feel better and I've had more panic attacks lately than I can handle. About 6 months ago, my dr lowered my dosages on my anxiety and depression meds and I am terrified he'll take them back up. Just know that adjustment is temporary and there will come a day where you'll be looking back and seeing how strong you've been. 

 

Hugs

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  • 4 weeks later...
Ruth P Newbie
Ruth P
Posted
  • Author
On 4/9/2017 at 3:58 PM, EasterLily said:

Hi Ruth.

I am very new here also, but I can totally relate to the anxiety. I have anxiety and depression too. I've been dealing with a lot of extreme nausea which is making me very anxious and depressed. I don't have any words of wisdom, but you will find a lot of great advice and support here. I am on day 11 of my diet and still waiting to feel better and I've had more panic attacks lately than I can handle. About 6 months ago, my dr lowered my dosages on my anxiety and depression meds and I am terrified he'll take them back up. Just know that adjustment is temporary and there will come a day where you'll be looking back and seeing how strong you've been. 

 

Hugs

You are so right!  I'm now a couple months in and have met with my doctor again with a positive visit.  It's trial and error but I feel like I'm getting it down and feeling better more often than not.  The anxiety is better right now and I know exactly what you mean about not wanting to increase meds.  But please consider it if you feel like you keep struggling!  It really has taken me a couple months of ups and downs to feel better but I do!  I was like you and the nausea and other symptoms made my anxiety worse.  Eventually I adopted an attitude of trying to not worry and fixate so much on the diet and whether I had eaten something "bad" and going with the flow and it really helped. Thanks for the support!  

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