Gluten-Free Roommate

[zoeylove]

Hi there, I'm looking to move but simply can't afford to live on my own at the moment. My family has disregarded my celiac diagnosis and there is no respect for cross-contact at all. They think I'm OCD and mentally  "not well" when I clean refrigerator doors and beg to cook upstairs in my bedroom on a hot plate. They continue to  not allow me to do so yet no accommodations are made when I try to keep gluten-free items away from their food. They get very angry and let me know how burdensome I am to ask to simply keep certain foods away from mine.  When I was initially diagnosed, 4 years ago, they didn't believe in my diagnosis. They thought it was nonsense. It took me a year to find someone in the family, a cousin whom I hadn't spoken to in 30 years, to convince them that the diagnosis was real. This is because she's a nurse and has 2 children with Celiac Disease. So after my family found out that she had children with celiac disease they finally believed that I had it but then immediately began to say to me, "well, ok so you do have celiac disease, but you are exaggerating your illness." Since that day, they still say those things to me.

I stopped attending family events because one Easter I went to my brother's house and brought my own food. He degraded and insulted me verbally in front of his friends and the entire family for bringing my own food saying I was being ridiculous and exaggerating. He was insulted because his wife had spent days cooking for the event and he felt that it was a complete and utter insult to her that I brought my own food. That was the last family social gathering I attended because I was made to feel like a criminal for trying to stay safe. Whenever they celebrate birthdays or holidays I'm either m.i.a. or I simply go upstairs and eat my own food, away from them. I even have a brother who keeps teasing me, "hey, do you want some of this food!!!" knowing that i can't eat it because it will make me sick. People laugh it off. I can go on and on about how my family has treated me.

When I was initially diagnosed I was down to 78 pounds because my body wasn't absorbing any nutrients! And when I told my sister-in-law about my diagnosis, she brushed it aside and said, "oh, you don't have celiac disease. You are just going through a phase like many of us do. I went through it in college. You are just anorexic, that's all!" I was speechless when I heard that comment come out of her mouth. So these are the type of people that surround me. I was so weak when I was first diagnosed that I couldn't hold a job. That's because I was living on raw veggies and hummus. I had no safe place to cook and my body wasn't absorbing anything that I ingested. It took 2 years for my body to start gaining some weight back. For 4 years I've had to deal with such a family. They will never change.

Last year I was living on my own in an empty home, gluten free,  that belonged to my friend's deceased parents because she wanted to try and help me until she sold the house. I worked small jobs throughout the pandemic, never stopping until March when I found out the house had been sold and I knew I needed to quickly try and find a better paying job that would help me afford rent. My car is on the fritz. It's a nightmare.  I'm educated. I have a bachelors and 2 years of med school under my belt but finding a good job has proven to be difficult. I'm not sure what I'm doing wrong? But I do have money saved for a place and I'm not afraid to work whatever job I can find. That's never been an issue. It's really about finding something affordable and gluten free. So this is why I'm searching high and low for a miracle or at least a gluten free roommate so that I can live in a safe environment. 

Sorry this was so long. I really needed to share part of my story. Needed to vent. Not sure if anyone else is going through this.  

 

 

[trents]

Zoey, welcome to the forum! Your story is heartbreaking but not an uncommon one unfortunately. 

Have you looked into celiac support groups in your area?

[Scott Adams]

Welcome to the forum, and I am really sorry that you are going through this with your family, and that they are not more supportive. If you've been diagnosed with celiac disease your first degree relatives have a ~44% chance of also having it, so they should also be tested, although it sounds like any of them getting tested would be unlikely. My thought here is that if one more person in your direct family also got diagnosed it might give you another ally within your family, and make the others be more respectful of your condition.

Also, you mentioned two years of med school. Is there a chance you can live on campus, take some student loans, and finish your degree? Just a thought. It does sound like moving out might be the best option, but just be sure that you can manage this financially before you commit to it.

We've published some articles by this author that may be helpful:
https://www.celiac.com/profile/81392-jean-duane-phd/

Including:

 

 

[zoeylove]

22 hours ago, trents said:

Zoey, welcome to the forum! Your story is heartbreaking but not an uncommon one unfortunately. 

Have you looked into celiac support groups in your area?

The last time I even went to the local support group, which was lead by a dietician, I was floored with how outdated the information she was providing those seeking help. She was saying the opposite of what I was reading and what info I was receiving from my own dietician. So I never looked back but I will email her and see if anything comes up. I have tried contacting local church groups and other places. Trust me, I'm out of ideas. 

[zoeylove]

17 hours ago, Scott Adams said:

Welcome to the forum, and I am really sorry that you are going through this with your family, and that they are not more supportive. If you've been diagnosed with celiac disease your first degree relatives have a ~44% chance of also having it, so they should also be tested, although it sounds like any of them getting tested would be unlikely. My thought here is that if one more person in your direct family also got diagnosed it might give you another ally within your family, and make the others be more respectful of your condition.

Also, you mentioned two years of med school. Is there a chance you can live on campus, take some student loans, and finish your degree? Just a thought. It does sound like moving out might be the best option, but just be sure that you can manage this financially before you commit to it.

We've published some articles by this author that may be helpful:
https://www.celiac.com/profile/81392-jean-duane-phd/

Including:

 

 

Thank you for the articles. I will read them in a sec. I can't continue with medical school. I would love to but I almost maxed out on student loans and after leaving I defaulted on them because after leaving school I had to endure a lot of emotional abuse in addition to the severe fatigue and symptoms from celiac that I didn't even know I had at the time....severe and debilitating migraines that left me in a dark quiet bedroom on the floor vomiting, pica from anemia due to malabsorption, down to 78 pounds, and a misdiagnosis of bipolar disorder which had me on a slew of unnecessary medications for over 8 years!!! I only found out that it was a misdiagnosis after spending every penny that I could on going to a world reknown clinic. In fact, I got into credit card debt because of it and am still paying the collection agency off but it was well worth it because I got answers about my health that no other doctor could provide.  The doctor at this clinic was the one who helped diagnose me with celiac even though I had gone there to confirm an ADHD diagnosis that went undiagnosed all of my life. So...it has been a whirlwind and traditional medicine has failed me. If I could afford to study functional medicine and nutrition, I would. But for now, that seems impossible. I don't have the funds and I definitely could not enter a program right away as it has been far too long since I've had basic science courses. I would have to retake general classes like chemistry and ochem all over again. Trust me, I've looked into it. Also, I"m just not feeling well. I'm always so fatigued. I don't have much stamina. It's hard for me to even hold jobs longer than 7 months because of so many underlying medical issues that need to be addressed, like kidney problems which I just found out I had but I don't have medical insurance. So trust me, my situation is so complicated. I was diagnosed 4 years ago. It has explained so much! However, it has also caused me a lot of trouble. I'm trying so hard and I'm running out of steam. 

[zoeylove]

Oh and my family refused to get tested for celiac disease. I tried to educate them and to tell them that they needed to get tested for it. They don't want anything to do with it. They still tell me that I'm exaggerating my illness. So they aren't going to check nor to change their ways. 

[ravenwoodglass]

I will have to be brief as I need to head out the door. I am so sorry for what you are continueing to go through. Have you considered contacting a lawyer who specializes in disability and Social Security? If not you may want to do so. Most do not charge anything for the first consultation and you may qualify for temporary disability that will enable you to find a place to live. With your medical history that might be a way to get out of your abusive situation. SSDI also has some training programs that you may be able to access when you have recovered a bit more. Hope things improve for you soon.

[zoeylove]

8 hours ago, ravenwoodglass said:

I will have to be brief as I need to head out the door. I am so sorry for what you are continueing to go through. Have you considered contacting a lawyer who specializes in disability and Social Security? If not you may want to do so. Most do not charge anything for the first consultation and you may qualify for temporary disability that will enable you to find a place to live. With your medical history that might be a way to get out of your abusive situation. SSDI also has some training programs that you may be able to access when you have recovered a bit more. Hope things improve for you soon.

I've tried that route. Unfortunately, office of temp assistance in morris plains is of zero help and their social workers treat you like a criminal and I've often been made to feel like I've been lying to them. It is atrocious. I was on the phone with them last week and was literally in tears because the social worker was so verbally aggressive and lacked any sense of compassion. I don't want to deal with such mean-spirited people as I'm emotionally pretty fragile at the moment. I've been praying a lot and making as many calls as possible...211, united way, houseshares program etc etc and I know that somehow God's got my back. Just got to see how things unfold. In the meantime I am trying to seek whatever help I can find. 

 

[Scott Adams]

How much weight have you gained back since your diagnosis?

I will just throw this out there, but perhaps you could go the route of an RN, or even a RN medical practitioner? It sounds like you have enough science under your belt for that, but I don't know how much more school would be involved.

In any case, it sounds like moving out of your current situation would be a positive thing for your mental health.

[zoeylove]

16 hours ago, Scott Adams said:

How much weight have you gained back since your diagnosis?

I will just throw this out there, but perhaps you could go the route of an RN, or even a RN medical practitioner? It sounds like you have enough science under your belt for that, but I don't know how much more school would be involved.

In any case, it sounds like moving out of your current situation would be a positive thing for your mental health.

Yes, I know. I tried that route a few years ago. I was told that I had to re-take chem, immuno, anatomy, and micro before even applying for a nursing program. This was because too much time had lapsed since I had taken those classes in med school. I actually began with Anatomy and phys and that was the year that my migraines continued to debilitate me and I was down to 78 pounds. I had such a hard time focusing and was working so hard. I honestly think it was because I was malnourished and not absorbing any nutrients. Plus the migraines were triggered by gluten, unbeknownst to me. That was the year that I went in for the ADHD diagnosis and the clinic also lead me to the celiac diagnosis. And honestly, I'm not cut out for the running around and rushing between patients thing! It is not only morally disrespectful towards those who are seeking treatment, but it's also so physically taxing, especially when you really don't feel well yourself.  I worked at an urgent care center all throughout the pandemic and it sucked the life out of me. The fatigue was indescribable.  I thrive when I connect with others! And I"m great at making them feel at ease but running around like that is not good for my body. I have too many underlying medical issues that need to still be addressed but I can't afford to take care of them.  

What I'm in desperate need of right now is a safe roof over my head where I can cook without cross-contamination issues and away from abuse. A place that's affordable so that I can work a not-so-stressful job but one that will provide me with enough money to go to the right doctors. Once my health issues are addressed I imagine I will have the physical strength to pursue anything.

And since I moved back into my toxic family's home, temporarily, I have lost weight. Now I'm 80 pounds and lots of gi symptoms. It's not good.

 

 

[Wheatwacked]

Zoey, sorry to hear your tribulations. Gluten is more addictive than potato chips, so that is why you get that response from people. Like telling an alcohalic in denial that he has a problem. You are, by existing, threatening their food choices. My wife had stage 3b ovarian cancer, a year to live, and was still denied SSI disability. There are companies that specialize in getting disability for you.  One helped us. Once you get sorted out you will see every one around you getter sicker, while you are getting healthier, so have faith.

Thought I was bipolar, but it turned out to be SAD out of control. 250 mcg vitamin D reversed it for me in less than a week (after 30 years of depression that no one believed was real), like suddenly the sun coming out on a dreary day. I take 14 individual vitamins and minerals every day because I know I don't get enough and I know which ones I lack through my food log spreadsheet, even though I make healthy choices, simply not enough.

On 6/22/2021 at 7:46 AM, zoeylove said:

That's because I was living on raw veggies and hummus.

Check out Dr Fuhrman's Eat to Live. Raw veggies and hummus are full of nutrition. Watermelon is good.