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

I Just Need To Get This Out.... (Death Mentioned)


mommy2krj

Recommended Posts

mommy2krj Explorer

A little info for reference:

 

My best friend passed away 2 years ago. She had been diagnosed with depression, Crohn's, Ulcerative Colitis and IBS. I constantly tried to get her to ask her doctor about going gluten free. She seemed to use her various dx's as a reason to eat really crappy food as the doctors were all telling her that various fruits and veggies were things that were going to cause her all sorts of issues. She also had Sleep Apnea (pretty severely) and had been diagnosed with ADHD as a child.

 

 

Now. I'm just ANGRY. I have no where to go with my anger, either. I am currently in the process of having my youngest son dx'd with Celiac's (positive blood test just waiting for his biopsy) and am in the process of at least getting everyone else in the family (myself, my husband and his older brother and sister) blood tests before we go gluten free. After all the reading I've been doing because of this....I'm just more angry with her and her doctors. And I can't just call her up and tell her all the things I've learned. Or just talk to someone who may, at the very least, truly understand the worry I have for my child(ren).

 

I wish I could call up all her idiot doctors and give them a piece of my mind. They had her on prednisone all the time. She was taking that stupid sleeping pill that they had all sorts of people doing things basically in their sleep and she was one of them. She would "wake up" and take her dose of meds and then, not remembering doing so would actually wake up and take them again. This is actually what killed her. Overdosing accidentally on her meds. Her fiance and 2 young children found her but not in time to do anything. :(

 

So...I'm just angry and needed to get that off my chest. Reading all this makes me pretty certain that had she listened to me about the gluten free stuff...she might still be here and possibly healthier than she had been most of her life. I may still have the one person I could lay everything out to, who knew me better even than my husband. And her kids might still have their mom. So, yeah. I'm angry. Thanks for reading if you got this far. I have a feeling I'm going to be spending a lot of time on these forums as my family starts this journey into relearning how to eat.


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

:(  I hope you will get better gluten free and that one day you can assist people like your friend and your friend's children.  Sometimes there just aren't any happy answers.  :(

 

Did you see the Newbie thread?  It could help give you general information.

 

Get well,

 

Diana

Brandiwine Contributor

Welcome to the forum!

I'm very sorry about your friend, I too lost my very best to an autoimmune disorder and the doctors ended up killing her with and experimental drug that stopped her heart while laying in a hospital bed... I understand your anger and part of mine is just selfish I know it is because I don't have her anymore! I want to say that it does get better, but for me it's been three years and its only been the last few months that I don't think about her every single day I still do a couple times a week and still makes me cry.

Be proud of yourself for taking care if you and your babies! Your doing the right thing!

Again welcome to the forum! You'll find lots of info, answers and some laughs along the way :))

mommy2krj Explorer

Thanks ladies. I really needed to get that out. I've been through the newbie thread and it has helped immensely, thanks!

 

Brandywine, I'm sorry for your loss. It took me a full year to get the habit of reaching for the phone to talk to her out of my system. I spoke with her every day. My youngest son was born 5 days after her daughter. I know part of my anger is selfish...but every time I see her little ones...it just breaks my heart. My oldest is graduating from high school in 3 days and I get to be there, her daughter will never have that. It just completely undoes me sometimes...though, that is beginning to ease. The memory of the day she died is forever burned on my brain. Her fiance called me after he called 911. I beat the cops there. I was the one that called her mom and told her..that is a sound forever ringing in my ears. :( 

She pulled herself up out of drug addiction and had started getting her life back. She had dropped out of my life (after being my best friend since we were 12) due to the drugs and we got back in touch when we found out we were both pregnant and due around the same time. First of my three kids that I had a friend pregnant with me. So I got my best friend back and got another 4 good years with her.

Thanks for listening. My husband can only hear so much and understand so much. I've needed to get that out for a while. Now, I'm going to wipe my eyes and concentrate on my daughter graduating from high school and getting my son and my family healthy again.

notme Experienced

i'm so very sorry for your loss - just lost my best friend's husband in december :(  it sure sucks.  (nothing to do with gluten, he had a massive heart attack)  we were really close - now my husband has to walk their daughter down the aisle when she gets married.....  we were pregnant at the same time, too.  the shock of losing someone so suddenly just blows your mind.   

 

you do what you can.  that's all you can do.  one of my other friends, I SWEAR, should be eating gluten-free, she has been through all sorts of tests and they have diagnosed her with everything from lupus to 'pre-diabetic' to r.a. and she won't even *try* - says it's too hard, too much of a pain in the a$$ - even though she is very concerned about keeping my food safe and she is so helpful to try to feed me.  you can lead a horse to water, sweetie.....

mamaw Community Regular

Sorry  for the loss  of your  friend.  Life  is  a  gift  &  no one  ever said life  is  easy.... as  we  all have  loved  ones   I  find  it  very hard  when  one  of  them passes  on.  We  love  them  so much  we  want to make  them  well. BUt  in the  real  world  we live  in  that  just  doesn't  happen. We  all  are  of  a  greater  plan  by  a  greater  being. So  in all honesty  we  have  no  control , no  magic  wands. We  can  only be  there  for  the person  who  is  dying  &  pick-up  pieces  with  helping  the  family  members... for  me  this  is  the  most  vunerable   time  in  our  lives. We  want  to  do  so  much  but  as  humans  there is little  we  can  do.....

Remember  your  friend  for  her  accomplisments..  and praise  God  for  giving  you   a  great  friend... remember  life  is  so much better  with you  having  her  for  a while  than  never  to have known her  at  all....

 

blessings..

eers03 Explorer

I'm soooo sorry for your loss.  A friend and coworker of mine died at 36 of colon cancer that spread throughout her body.  It made no sense.  She always looked thin and healthy.  Once I became diagnosed with Celiac it really made me feel like its very possible that she was too and just never was diagnosed based on the symptoms she confided to me leading up to her passing.  She left a 10 year old and husband to be with the Lord.

 

If your son has it, the likelihood of someone else in your family is still statistically low but much higher than the general population.  The percentage increase is enough to certainly warrant additional blood tests to be sure.  When I was diagnosed, my mother did a blood test because she does have some other autoimmune issues but they came back negative.  

 

This board is a great place to be if you have a celiac in your family.  Keep us posted on things.


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

I'm sorry to hear about your loss. I think we all go through emotions like this (on top of grieving), especially regarding Celiac and people who have symptoms of food intolerance (possibly gluten related or otherwise). It's even harder when the person won't listen, or it's too late.

 

I struggle with relationships in my family...I receive looks and comments of pity about how I'm "so sick"...and I'm heading on vacation full of people who have had almost zero exposure to me since diagnosis...but I've heard their health stories for years.  And they won't listen if I suggest they may have a food sensitivity (or their thyroid is under treated). And it's incredibly hard to keep your mouth shut, and when you keep it shut for so long...eventually you get get really angry. Or at least I do.

 

Yeah, I'm so sick.... Nope. Not anymore. Too bad they don't notice that part.

 

I think most of us struggle with anger at physicians - our own, our family members...it's just a part of dealing with an illness. Some physicians deserve a good beating, and others are giving it a good honest try in a difficult situation. I think it's hard to tell one from the other, some days - especially when we aren't the patient.

 

I've listened to what a doctor had to say about a hideous situation and then heard others' interpretations of the same conversation - and I must say we had drastically different views of his recommendations and diagnosis. I sat in a hospice room and listened to a nurse offer morphine to ease a dying woman's suffering and perhaps speed her passing, and watched her friends and family turn it away because someone in the group said they'd heard morphine can cause oversensitivity and skin pain in dying patients. We hear what we want to hear - as patients and as family/friends of the patient.

 

Anger is normal. It's part of the grieving process.

GFinDC Veteran

Some Crohn's patients do better on a  gluten-free diet, but many do not. It's not the same for all people.  So it's not possible to know if it would have helped your friend I don't think.  Maybe, but maybe not.  It's too bad she had the problem with the pills and her memory.  I had the same kind of thing happen with some high blood pressure medication.  Kept forgetting I had taken them already.  And forgetting other things.  So I had to stop taking it.  I said a little prayer for you friend.  May she enjoy her life now that it is really beginning! :)

GottaSki Mentor

Welcome Mommy!

 

I too lost one of my very best buds just two short years ago.  Here is what I know from the bottom of my heart -- she is gone but lives on thru me and those she loved each and every day.  When times are the most dark...I think... WWKD....I think that and then double check it is legal and a good idea....my buddy was loads of fun, but not always prudent ;)

 

Live,  Get your family tested if there is any possibility of Celiac Disease or NCGS. Eat good whole foods. Move as often as possible on your own and then add family and friends to your exercise....these things honor your friend.  

 

Oh...and find a song that reminds you of her and play it regularly --- "Brown Eyed Girl" plays around here and I automatically get hugs from my sons and hubs....I know Kim is laughing out loud that I am using my missing of her to gain hugs!!!!  Not really...but it is the way she would see it...and I am cool with that.

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. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.