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Christina A

Anxiety and celiac

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Hey everyone. Maybe you can help me! It's a bit embarrassing to admit but... Since being diagnosed with celiac disease (February 2016) I've had a lot of anxiety. Seems to be only getting worse. I'm so afraid of being 'glutened'. My live-in boyfriend has been so supportive and even goes gluten-free with me. So our home is strictly gluten free. Does anyone else have anxiety about it and what do you do to help it? For example, the in laws are in town for 2 weeks, and there is gluten everywhere...(I mean everywhere). I have to watch them like a hawk to make sure they don't put the knife back into the peanut butter jar. Or get crumbs in the microwave. My boyfriend has told them about it, and they clean up after themselves (not to my standards, but they do try). I know I can't expect them to not eat it around me. I've noticed how bad I'm getting when I'm around people who eat gluten. Someone even shook my hand after eating a sub from subway and I quickly went to the bathroom to wash my hands. Am I over thinking this? Anyone else in my position? It's driving me crazy lol ? if I could live in a bubble I probably would! Thanks everyone.

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Celiac.com Sponsor (A8):

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Yep, exactly like me. I did a post on the mental trauma of this earlier. There are plenty of post related to this with others talking about it. I do a mixed regime supplements to help with the anxiety, and has really taken the edge off. As for the fear, yeah my reactions are so bad that is instilled in me as a trauma and I have very similar dramatic reactions, I am even overly careful about washing grocery's, and not letting stuff touch the conveyor belt at checkouts, shoes off at the door, and wash my hands like crazy. I swear I fear what I would do if someone tried throwing flour at me.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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This sounds a lot like OCD, if not full on then at least bordering on it. It's great that your boyfriend is supportive and that he's willing to eat gluten-free. Maybe he should eat what he would normally eat because he's allowing your fear to grow, the more you avoid it the more the fear will grow and things will only get worse.

Obviously this is just my opinion but I'm basing it on my own OCD and hearing from other sufferers when it comes to germs and things like that and how bad it can get.

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47 minutes ago, Christina A said:

I know I can't expect them to not eat it around me. 

I would be very unhappy if I had a strictly gluten free household and someone brought gluten into it.  My household is not completely gluten free (my husband prepares foods with gluten in a separate area)  but I'd still be unhappy if guests expected to eat gluten in my house.  It's your health, not just a preference.

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You are not over-thinking this!  I am the same way.  I wash my hands a lot!  I make everyone wash their hands when we return home.  Humm...we do not get sick often either.......I care about getting glutened far more than picking up germs.  Anxiety is so common with those who have celiac disease.  It can be a direct result of the disease itself or acquired after diagnosis.  What other disease is managed completely by the patient?  

One way we have dealt with anxiety is that we made our house is 100% gluten free.  No gluten is allowed.  My family, friends, clubs, Girl Scouts, etc  know it.  If a guest brings a pie, I just thank them and set it aside (give to my neighbors, FIL later).  I provide no gluten food items to any of my guests (even house guests).  Our  traditional holiday dishes are gluten free.  If anyone wants gluten, they can eat it before they come to our house.  No one complains, because I am the best cook in the family.  No one can tell that the dish is gluten free.  I know this because they ask for seconds!  For those that wish to contribute, I ask for flowers, paper good, drinks, or fresh fruit (not cut up) or cash (just from family if they offer since we host almost always).  

Why take this hard line approach?   We need (hubby and me) a place where we can fully relax and let down our guard.  It is our health at stake.  My last glutening took three months for symptoms to subside and another three to regain lost weight (all verified by my GI via antibodies testing).  (Your glutening mileage may vary).  The risk is too great!  We are self-emlplopyed and our product is my hubby!  Glutened and he is worthless (though his recovery is faster than mine.)

My kid does eat gluten.  She consumes it at school and I make sure she eats it daily for 12 weeks prior to any celiac testing (even if symptom free) and she eats it on the porch (good thing we live in sunny California.) Her friends take pity on her and often bring a Peanutbutter and jelly sandwich to school or invite her to dinner.  Funny thing is she still prefers everything I make (except fish, but I make it anyway because Dad and I rule!!!)  

The bottom line is you are adult with a serious disease.  You need to insure that your health will not be compromised.  If people think it is too difficult to not live without gluten while in your house, then they are not worth being in your lives.  Seriously.  And if you think that you are just marrying/cohabitating with just your boyfriend -- you are wrong.  You get the whole enchilda!  Set the ground rules now (always be nice).  It might not be gluten, but how you rear your children or keep your house!  

 

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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1 hour ago, cyclinglady said:

The bottom line is you are adult with a serious disease.  You need to insure that your health will not be compromised.  If people think it is too difficult to not live without gluten while in your house, then they are not worth being in your lives.  Seriously.  And if you think that you are just marrying/cohabitating with just your boyfriend -- you are wrong.  You get the whole enchilda!  Set the ground rules now (always be nice).  It might not be gluten, but how you rear your children or keep your house!  

If I took that approach I'd have to disown my family and live alone (couldn't think of anything worse) as they won't go gluten-free - best it gets is split appliances and a separate cupboard.

My anxiety has gone through the roof now since the blood test result, mainly because of all the negative lifestyle changes it brings and then the side effects (feel 10x worse since giving up gluten compared to when I was eating it). As for the cross contamination I sit there wondering if a spoon used to stir tea can end up hurting me, not sure if that's possible but if it is then I can't see this ever calming down.

 

 

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I absolutely can empathize with the anxiety...your not alone! I've even thought maybe I should seek guidance on how to minimize the anxiety from Celiac...I am so unbelievably terrified of being glutened that it effects so many things. I understand the family bringing gluten into your home as mine does the same as well as many of the guests we have staying with us (we host a lot of people). I believe we do our best in our given circumstance...but definitely must be an advocate for yourself as health always should come first before anything or anyone. Again, find comfort that your not alone in this :) 

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On 10/8/2016 at 2:25 PM, RMJ said:

I would be very unhappy if I had a strictly gluten free household and someone brought gluten into it.  My household is not completely gluten free (my husband prepares foods with gluten in a separate area)  but I'd still be unhappy if guests expected to eat gluten in my house.  It's your health, not just a preference.

I’m currently dealing  with this and struggling. 

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Yes yes yes. I do not have any OCD towards anything else, but if I see a potential contamination with food I am about to get, that is all I am focused on until I can deny the food in a respectful way lol. It is hard sometimes. The most difficult for me is denying the food. I am a people pleaser by nature, and really hate to see a friend share a spoon when stirring gluten-free and regular pasta. I hate telling them as the act happens (I can't predict peoples moves), and even worse, having to really put my foot down sometimes on the legitimacy of cross contamination. I love my friends and family, and I empathize with their prospective of not having to deal with these issues of living as a celiac. Still, there are some days in where I have been running around all day, haven't eaten much, and I end up at a friends where they either do have gluten-free food but contaminate it while cooking OR have no gluten-free food (with no fault of their own they just forgot).

Over time, I have learned a lot. I almost always will have food with me, especially while traveling. I have patience with friends when the forget (I mean it is my life and disease not theirs). If I am eating out at a restaurant with friends and they servers not only doesn't have another gluten-free menu, they don't know what gluten is in the first place, I will refrain from risking it even with a salad (you can still have a nice time with friends and not eat anything, people do it all the time). I make sure that my cupboards are stocked, as I come home starving sometimes. 

Thank goodness we have this disease today. There are SOO many gluten-free options at grocery stores and even in some eateries. Even though gluten-free is stupidly more expensive, the prices are even coming down a bit since I was in college (3 years ago). It is insanely hard and frustrating sometimes, and we get tested for sure! But, I have grown to see it as a positive in life; where I am eating healthier, have more iron (energy lol), and the occasional opportunity to grow/exercise my patience and empathy with others. And that helps. I wish you more good than difficult days ahead! 

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