Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Trouble Working And Managing Daily Activities, Feeling Hopeless :(


Miss Emily

Recommended Posts

Miss Emily Apprentice

I was diagnosed with Celiac almost two years ago now. It is thought that heart surgery at age six to repair a heart murmur triggered my Celiac. So, ever since I can remember I have been sick. Daily nausea, fatique, endometriosis, depression, bone pain, muscle weakness, severe diarreaha, cramps, frequent hospital and doctors visits, absences etc and too numerous diagnosis to list. I had always napped in the afternoon to be able to handle evening activities and was never able to work while in school. In highschool I suffered from a misdiagnosed spinal fracture, ankle fractures, and arm fractures due to undiagnosed osteoporosis. Finally I received a Spinal Fusion to correct my petical fracture but continued to have back pain after physical therapy was discontinued. I barely made it through four years of college before I was forced to quit after failing several courses based only upon absences. I was married and subsequently divorced because of my chronic illnesses. I finally was diagnosed with Celiac but struggled for over a year before I felt any relief. I tell you all this because now, at 23 I am lost. The good news being I have found new hope with a diagnosis of Celiac, reversed my osteoporosis, and have dramatically reduced the diareaha ailments. However, I have no money to go back to school, student loan debt equivalent to a Bachelor's degree with only 50 credits, medical bills piling up and little income. I work part time as a nanny, but find I am extremely limited in the amount of time and labor I can put forth before my body rebels. I feel so stuck because I cannot move forward. I am always hungry because it is difficult to afford foods that don't make me ill (at this point no gluten, dairy, soy, additives, etc. the list is very short) and I have a difficult time getting my family to buy these items. (Although my home is gluten-free, thanks to my family :) ) I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do. And I guilt myself all the time saying "this could be worse, you could have cancer!." But, that certainly does not help. So, I am in therapy, working closely with my doctor and reading all I can about my options. However, I really need to hear that someone gets where I am coming from. That it is tough to want to do so much but only be able to do a little. So, kind words anyone?

PS. Sorry this is a bit of a rant but I need support!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rachelmoon Rookie

I feel for you! It is such a relief to know that we can feel better, but it feels like its at such a cost. I get angry at my husband for eating a peanut butter and jelly sandwich not because I want one but because its not fair that I cant have it! I feel so childish! And I also understand how you feel being so weak! It takes me so long to make dinner because I have to rest in between. I ache after chopping vegtables or even just stirring something! So know you are not alone!! I hope things start looking up for you soon! I like to believe that everything happens for a reason and the road you were forced to take will lead you to where you need to be!

nasalady Contributor
I tell you all this because now, at 23 I am lost. The good news being I have found new hope with a diagnosis of Celiac, reversed my osteoporosis, and have dramatically reduced the diareaha ailments.

I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do.

Emily, I'm so sorry about what you're going through. And you've come to the right place for support! Many of the people here were extremely ill when they were diagnosed with celiac disease. Believe me, there are a lot of us who understand the frustration of not being able to physically handle the day-to-day necessities of life.

But please don't believe that your life is over at the tender age of 23!

I've only recently been diagnosed with celiac disease, a few months ago at the age of 52. I'm just beginning what I hope is a journey of healing, but I have several different autoimmune diseases in addition to celiac, plus fibromyalgia. I'm in a wheelchair because of the pain of fibro and rheumatoid arthritis....it hurts too much to walk more than a few yards. But some of my symptoms have improved substantially, particularly the neurological ones (hand tremors, vertigo, peripheral neuropathy, headaches, etc.). So this gives me hope that I will continue to get better. I have to get better! As do you!

Is there any way you can apply for disability so that you can have some time to rest and continue the healing process?

mushroom Proficient
I was diagnosed with Celiac almost two years ago now. It is thought that heart surgery at age six to repair a heart murmur triggered my Celiac. So, ever since I can remember I have been sick. Daily nausea, fatique, endometriosis, depression, bone pain, muscle weakness, severe diarreaha, cramps, frequent hospital and doctors visits, absences etc and too numerous diagnosis to list. I had always napped in the afternoon to be able to handle evening activities and was never able to work while in school. In highschool I suffered from a misdiagnosed spinal fracture, ankle fractures, and arm fractures due to undiagnosed osteoporosis. Finally I received a Spinal Fusion to correct my petical fracture but continued to have back pain after physical therapy was discontinued. I barely made it through four years of college before I was forced to quit after failing several courses based only upon absences. I was married and subsequently divorced because of my chronic illnesses. I finally was diagnosed with Celiac but struggled for over a year before I felt any relief. I tell you all this because now, at 23 I am lost. The good news being I have found new hope with a diagnosis of Celiac, reversed my osteoporosis, and have dramatically reduced the diareaha ailments. However, I have no money to go back to school, student loan debt equivalent to a Bachelor's degree with only 50 credits, medical bills piling up and little income. I work part time as a nanny, but find I am extremely limited in the amount of time and labor I can put forth before my body rebels. I feel so stuck because I cannot move forward. I am always hungry because it is difficult to afford foods that don't make me ill (at this point no gluten, dairy, soy, additives, etc. the list is very short) and I have a difficult time getting my family to buy these items. (Although my home is gluten-free, thanks to my family :) ) I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do. And I guilt myself all the time saying "this could be worse, you could have cancer!." But, that certainly does not help. So, I am in therapy, working closely with my doctor and reading all I can about my options. However, I really need to hear that someone gets where I am coming from. That it is tough to want to do so much but only be able to do a little. So, kind words anyone?

PS. Sorry this is a bit of a rant but I need support!

Dear, dear Emily, of course you need support!. What a tough row to hoe! So many fractures with undiagnosed osteoporosis (what was wrong with those docs???) A failed marriage due to celiac, saddled with student loan debt for classes you were too ill to attend, medical bills you can't afford because you can't get a job that will pay for them because you couldn't complete college, hungry trying to afford foods that contain no gluten, dairy or soy. That is a heavy burden to bear. No way do you guilt yourself over that. :rolleyes: Believe me, you have friends here who can try to comprehend what you are going through, but what you are going through is way more than most of us have had to deal with; many of us here find it hard enough to give up eating gluten. You, my dear, have been overburdened. I am so glad you are in therapy because your situation calls for it. Come here any time to rant and ask for support; we will do our feeble best to give it to you.

But do know that it is possible to feel better, to regain control of your life, to kick that gluten in the butt and live a full and satisfying life. I'm not saying it won't take some work, but you CAN do it. Keep coming back and asking questions and for support and we will go all out for you; you deserve a break!

Here's a big {{{hug}}}} for you.

JNBunnie1 Community Regular

Miss Em, I tried to send you a PM but you have it disabled. Would you be willing to Pm me with your email address,

or just Pm me?

There are some things I'd like to share with you!

Miss Emily Apprentice
Miss Em, I tried to send you a PM but you have it disabled. Would you be willing to Pm me with your email address,

or just Pm me?

There are some things I'd like to share with you!

I couldn't figure out how to message you. But you may send me a message at emilyann1226@aol.com

thanks!

Miss Emily Apprentice
Dear, dear Emily, of course you need support!. What a tough row to hoe! So many fractures with undiagnosed osteoporosis (what was wrong with those docs???) A failed marriage due to celiac, saddled with student loan debt for classes you were too ill to attend, medical bills you can't afford because you can't get a job that will pay for them because you couldn't complete college, hungry trying to afford foods that contain no gluten, dairy or soy. That is a heavy burden to bear. No way do you guilt yourself over that. :rolleyes: Believe me, you have friends here who can try to comprehend what you are going through, but what you are going through is way more than most of us have had to deal with; many of us here find it hard enough to give up eating gluten. You, my dear, have been overburdened. I am so glad you are in therapy because your situation calls for it. Come here any time to rant and ask for support; we will do our feeble best to give it to you.

But do know that it is possible to feel better, to regain control of your life, to kick that gluten in the butt and live a full and satisfying life. I'm not saying it won't take some work, but you CAN do it. Keep coming back and asking questions and for support and we will go all out for you; you deserve a break!

Here's a big {{{hug}}}} for you.

Thank you so much for your support. It is always tough when there seems to be no means to an end... but it definently helps to have this group!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



VioletBlue Contributor

I can sympathize. I'm certainly not 23, just over twice that actually, but I'm frustrated by what my body cannot do. At one point, years before I was diagnosed I spent a year or so falling down a lot. I'd be walking along and just suddenly be on my knees with no memory of tripping. I retrospect I now realize it was a form of nerve damage. But the damage repeated falls did to me knees has left me in pain just trying to walk up and down stairs. I'll never be able to jog again and I spent a good part of my 20's and 30's as a runner. I miss it. I walk on a treadmill now but even that is a challenge because I suffer from gluten ataxia and have balance issues, not to mention speech issues - I used to be a classical announcer, and issues with writting and language as well.

I don't know that I have an insight that will help. All I can say is that I understand the frustration. I was raised to believe I could do anything I set my mind to. That was the way I lived a good deal of my life. It's hard to accept that it's no longer true.

I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do. And I guilt myself all the time saying "this could be worse, you could have cancer!." But, that certainly does not help. So, I am in therapy, working closely with my doctor and reading all I can about my options. However, I really need to hear that someone gets where I am coming from. That it is tough to want to do so much but only be able to do a little. So, kind words anyone?

PS. Sorry this is a bit of a rant but I need support!

cyberprof Enthusiast
I was diagnosed with Celiac almost two years ago now. It is thought that heart surgery at age six to repair a heart murmur triggered my Celiac. So, ever since I can remember I have been sick. Daily nausea, fatique, endometriosis, depression, bone pain, muscle weakness, severe diarreaha, cramps, frequent hospital and doctors visits, absences etc and too numerous diagnosis to list. I had always napped in the afternoon to be able to handle evening activities and was never able to work while in school. In highschool I suffered from a misdiagnosed spinal fracture, ankle fractures, and arm fractures due to undiagnosed osteoporosis. Finally I received a Spinal Fusion to correct my petical fracture but continued to have back pain after physical therapy was discontinued. I barely made it through four years of college before I was forced to quit after failing several courses based only upon absences. I was married and subsequently divorced because of my chronic illnesses. I finally was diagnosed with Celiac but struggled for over a year before I felt any relief. I tell you all this because now, at 23 I am lost. The good news being I have found new hope with a diagnosis of Celiac, reversed my osteoporosis, and have dramatically reduced the diareaha ailments. However, I have no money to go back to school, student loan debt equivalent to a Bachelor's degree with only 50 credits, medical bills piling up and little income. I work part time as a nanny, but find I am extremely limited in the amount of time and labor I can put forth before my body rebels. I feel so stuck because I cannot move forward. I am always hungry because it is difficult to afford foods that don't make me ill (at this point no gluten, dairy, soy, additives, etc. the list is very short) and I have a difficult time getting my family to buy these items. (Although my home is gluten-free, thanks to my family :) ) I feel like no one understands what it is like to have such a strong spirit and drive, but to be extremely limited by what your body can do. And I guilt myself all the time saying "this could be worse, you could have cancer!." But, that certainly does not help. So, I am in therapy, working closely with my doctor and reading all I can about my options. However, I really need to hear that someone gets where I am coming from. That it is tough to want to do so much but only be able to do a little. So, kind words anyone?

PS. Sorry this is a bit of a rant but I need support!

Others have given good advice. If you decide that you want to - cheaply - continue and try to get a college degree, let me know and I can help with that. I teach classes for colleges that offer online degrees, some very cheaply. I'm talking about accredited colleges, not diplomas that you "buy". I have sources that can help you plan a degree (for free), and you can probably get some credit via testing - like AP tests for adults - so that you can finish faster and cheaper.

Online degrees are expanding, mainly because you can do the work from home. That means you can pace yourself and do the work when you have energy. It might be the best way to finish the degree (if you want to) so you can earn more money and find a career that is right for you. There are many different programs at many colleges.

Best of luck to you in your healing.

Miss Emily Apprentice
Others have given good advice. If you decide that you want to - cheaply - continue and try to get a college degree, let me know and I can help with that. I teach classes for colleges that offer online degrees, some very cheaply. I'm talking about accredited colleges, not diplomas that you "buy". I have sources that can help you plan a degree (for free), and you can probably get some credit via testing - like AP tests for adults - so that you can finish faster and cheaper.

Online degrees are expanding, mainly because you can do the work from home. That means you can pace yourself and do the work when you have energy. It might be the best way to finish the degree (if you want to) so you can earn more money and find a career that is right for you. There are many different programs at many colleges.

Best of luck to you in your healing.

I would be interested in more information please contact me, emilyann1226@aol.com thanks!

ravenwoodglass Mentor
I couldn't figure out how to message you. But you may send me a message at emilyann1226@aol.com

thanks!

Hi Emily Just wanted to let you know if you want to message someone put your cursor just to the right of that persons name. You will see a little arrowheady looking thing, click on that and a pull down menu will appear and you will see the words 'send message'. If you click on that you will be able to send them a private message. I do need to note that for new members there is a certain number of posts that you have to have before you can do so. If you ask in the technical section someone may know how many you need before you can PM. There are also restrictions on how many PMs can be sent in a certain time frame, I think it is one an hour but not sure.

Hang in there, it is very tough especially at first but we are all here for you. Your not alone in your struggles.

cyberprof Enthusiast

Emily, I sent you an email via your AOL email address.

~Laura

shirleyujest Contributor

Hugs to you sweetie! You have gone through a lot of hardship in your young (relatively) life! It's a tough road you've been on, also assuming whatever health problems led to your heart surgery, you've really never been well. Yet! Yet is the operative word. It sounds like you are on the right path. Anyone who has completed 50 credits and works part-time as a nanny with these obstacles is very strong, not to mention you've dealt with marriage and divorce. You just need to reframe the situation and view things that way: you are a survivor. I love your quote from ER. This reflects who you are inside.

Your healing will not happen overnight. Just keep learning about food, nutrition and cooking so you can eat healthy meals. Do what you can and know that it is enough. I'm glad you have a family there for you. If you can, like you're living with your parents and don't need to pay rent, then overpay your student loans until they're gone or almost gone, and save up money to finish college. Finish up at a public university. I didn't get my degree until age 27 b/c my folks had not saved money. So I put myself through college, first at a junior college then at a very good public univ. It can be done. Be your most stubborn self and you'll be fine.

Miss Emily Apprentice
Emily, I sent you an email via your AOL email address.

~Laura

Hi Laura, I just replied! Thank you so much!

Miss Emily Apprentice
Emily, I sent you an email via your AOL email address.

~Laura

Thnak you!

Miss Emily Apprentice

I wanted to thank everyone for your replies! I can't tell you how much it means to have your support! :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,547
    • Most Online (within 30 mins)
      7,748

    GSward
    Newest Member
    GSward
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.