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How To Cope With Gluten Anxiety


livelifelarge24

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livelifelarge24 Enthusiast

I have been gluten free for 14 months now (yea!) and everyone on here was right... it has gotten much easier. I just had two major accomplishments - I got married last weekend and we had a 100% gluten free wedding (I even made the cake myself) and everybody loved the food and I don't think the non-celeacs even realized anything was "missing." Accomplishment #2 was our honeymoon - it was our 4th successful gluten free vacation and it made me feel confident now in taking back up my love of travelling that I thought I would have to do without.

The problem I'm dealing with now is major anxiety. We have been back from our honeymoon for 3 days now and I am STILL in a constant state of panic that something I did on the trip will have caused me to get glutened. I know that it is silly because I react very quickly so it would have hit me by now. But I haven't been feeling well since we got home (after wedding crash, no doubt) and every tiny symptom I blow up in my head to be this huge deal and immediately feel sure I have been glutened and I'm doomed.

I am in counseling for this and because of the wedding activities it has been four weeks since I was able to go in. I usually go once a week and am resuming that this friday. I am also in a support group that meets once a month and our next meeting is tonight. I really am working the tools that I can to deal with this but I'm wondering if any of you have similar gluten anxiety and how you deal with it?

My husband and I created a list about 6 months ago and it is my symptom chart. When I feel like this he has me check the chart. I don't have any of the symptoms on there so he says see... you haven't been glutened. I am thankful for him and the chart. But this anxiety really has a hold of me this week. I am starting to wonder if it really is more of the wedding being over and I'm just focusing on this instead of dealing with being back to reality? A year is a long time to plan and look forward to something.


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ravenwoodglass Mentor

Congrats on the wedding and glad to hear that all went well with it and the honeymoon. It sounds like you have a very supportive spouse which does help a lot.

You mention feeling like you are 'doomed' if you get glutened or think you might be. Can you keep in mind that even if you do get glutened it will be a temporary thing that will pass? I get horrible depression when glutened but know it will be short lived and that gluten is what caused it. That knowledge does help me deal with it. It doesn't make the depression go away but knowing the reason for it helps.

It is good that you have a group to talk to and that you are in counseling. If the anxiety is crippling do mention it to your doctor. Sometimes medication may help if it is a short term effect of a glutening. I hope they are able to help you get some relief soon.

Razzle Dazzle Brazell Enthusiast

I feel for you. I was extremely anxious as I went gluten free. I used to get really scared cooking in a gluten-filled kitchen. It made me almost not want to cook. The whole time in the kitchen was extremely stressful until I was finally done. I would snap if anyone touched any of my things even stainless steel (stupid i know).My dad insisted on taking me out to eat for my birthday to a Mexican restaurant and the thought was punishing. At the last minute I expressed my fear and we went to a different restaurant whose manager knew me and did a very good job himself to cook my food. It took me a while to settle down but my anxiety is still the worst when the kitchen is a mess. I do not have time to clean everyones piles of dishes and wash the countertops and stove knobs and cabinet doors so I just I wash my hands a million times.

I like Raven's viewpoint. I think about how even if I did get a little glutened, it will only be temporary. I also have to just get out and do something. A little exercise helps tremendously since it literally burns off the anxiety and stress hormone. Even just lifting dumbells and walking a little helps when I am on edge. I also think about how that I know I am learning more and more and my body has to be healing so things can only get better right?

I hope your anxiety level improves as you become empowered, learn more and also become more confident in noticing your body's early signs of discontent.

livelifelarge24 Enthusiast

I totally understand the kitchen anxiety! When I was first diagnosed I had a roommate that was baking bread twice a week and brewing beer in our home.... that didn't work out at all. I think the real issue for me is that I cannot see getting glutened as being something temporary that I will get through. The depression and brain fog get so severe for me that I cannot see my way out. Literally the only thing that helped me hold on to hope last time was my husband telling me constantly to trust him that I would feel better eventually. He would name all of these other things that I trust him about and say to trust him on this too. I get the worst brain fog to where I can't even really read so it is very hard to understand logic and I live in this fear that I will end up trying to commit suicide or something. I am not a suicidal or unhappy person but the last time I got glutened it happened three times in a row and I have never imagined such a hopeless feeling in my life. Now I am above and beyond careful and have severely limited where I go and what I do for fear of spending another 3 months in bed. I know in the grand scheme of things 3 months isn't a very long time but it sure feels like it when you are laying there day in and out! I am still learning what my limits and levels are and the support group is super helpful.

Mom-of-Two Contributor

I am more new to this, 6 months gluten free, but wanted to say I understand how you feel! It was hard before I discovered my kid also has to be gluten free, now I am anxious about it all the time. Worrying about yourself is one thing, but constantly thinking about my daughter getting sick from gluten at school, a party, sleepover, etc is enough to make me crazy at times!

It is difficult, but my husband is super supportive and really tries to put my mind at ease. As with all things in life, you can only control what you can and do your best. You know how to eat safely, minimize your exposure and take all the precautions you can. If those efforts fail you, you know it is temporary and you will be OK when it's over. Keep yourself healthy, good vitamins, probiotics, lots of water, exercise, and rest if/when you do get exposed to accidental gluten.

I think the anxiety surrounding a gluten free lifestyle is so overlooked, I wish my family and friends understood!

dani nero Community Regular

I even had nightmares at some point about eating glutenous things by mistake or someone making me eat them haha, but I got over it because it eventually happened and it wasn't the end of the world, and I saw that the fear itself was bigger than the actual deal I was scared of. No one wants to get glutened, but keep in mind that you've been training and getting better at this so it's not so easy. Best thing to do is to blame the paranoia before blaming your body for the symptoms, but if they persist and get worse, then blame the body ;-)

Are you anxious due to the paranoia alone however or do you find yourself anxious about other things too? Anxiety can be a side-effect to other intolerances that you don't know about. Have you tried an elimination diet? Sugar and cashews make me agitated and anxious for example. Body can't handle them so reacts by making me a grouch monster ;-)

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