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

My Experience With Being Gluten Free

evie

By evie
in Coping with Celiac Disease

Recommended Posts

evie Rookie
evie
Posted

I have just learned (from experience) that I made a mistake 30 years ago when i found I was allergic to wheat that I did not stay off it completely!! :( Now in my older years (BD sunday..78) it may be too late to correct the many problems. I was finally diagnosed with Celaic diseas 2/20/06 amd went on gluten free foods. spent several months more losing weight, very weak and after 3 months of struggling finally began to be slightly better, also milk free still. If I had known at least 20 years ago I amy have been able to keep my teeth in better shape (many fillings which may be causing amalgram problems).

Just last week we found I now have osteoporosis of the spine, I suspect wrists and ankles (no rhuemy arthritis). this past Sat. I was hospitalised for bit over 24hours after passing out @ home..arrythmia of heart so am now on heart meds + water pills. may not be strong enough since my feet are swelling badly!! :( I will be having some more heart testing next week + more bone tests.

If my 'BAD' past can help anyone avoid these major problems my slow typing will be well worth every letter.

I firmly believe my severe allergies also fit in here and that this is all inherited from grfather having hay fever, my mother had sinus allergies, heart problems, was hypothyroid (completely quit in her 60's). I have thyroid problems too, all 3 dd have thyroid problems, some osteo, sinus allergies. mid dd has been tested (does not have it), hopefully other 2 will get tested soon. oldest dd has VERY severe osteo.

In case I may be presenting a gloomy future for myself I do not plan that. My local Dr. is up on my problems and 10/04/06 I see my U of Iowa specialist for further testing. If a new med comes up to help me am gungho to use it for improvement!! :o Also We are celebrating our 60th wedding ann., hubbies 80th, my 78th birthdays with family here this weekend so I am upbeat about a serouis health problem. My family is behind me which is very important to all of us. Hope this all helps someone!!! :) evie

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted

Well I'm just glad you finally figured out what was making you sick Evie :D

I'm sorry celiac disease has left it's mark on you-and wouldn't it be good if this site stopped people from suffering needlessly and discovering what was wrong with them.

Sounds like you have alot of celebrating to do this weekend-congratulations!!!!!! :D:D

jerseyangel Proficient
jerseyangel
Posted

Evie,

Bless your heart for sharing your experiences with us! I hope all of the bad stuff is behind you now, and you just keep getting better!

Congratulations on all of the happy events coming up this weekend. Have a wonderful time with your family :D

gfp Enthusiast
gfp
Posted

Evie.... good luck

On a personal level just when I start loosing faith in humanity I read your post and it lifts me that your first action is to help others.

On another level although osteoporosis is slow to recover from you will see enormous effects from being gluten-free.

My mother was 65 when diagnosed and looked 75 .. she now looks 5 years later 65.... she literally looks SO MUCH healthier all round.

TinkerbellSwt Collaborator
TinkerbellSwt
Posted

evie.. thank you for enlightening myself as to what to look for. I hope you feel better and enjoy your weekend!! it sounds great!

Turtle Enthusiast
Turtle
Posted

It's people like you that make the world a better place! Thanks for sharing!!

Hope you have a wonderful weekend (without any passing out). :lol:

Guest Robbin
Guest Robbin
Posted
:) Evie, you are such a dear, sweet, kind woman to share your struggles to help others. My mother has had diabetes, high blood pressure, heart bypass, arterial stints, arthritis, and osteoporosis. This all was dx. before age 55. Diabetes at 30 and heart attack at 49. She is now 65. She takes the once-a month osteo med (forget the name of it), and is doing pretty well. She doesn't take near the care of herself that you do, and that makes a HUGE difference. You have many people who care about you and that is a great healing power and motivation to keep strong. Enjoy your day and your wonderful family and thank you for being you.
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

Thank you Evie!

Have a great weekend with your family! :D

Happy Birthday 2 days early. :P

CantEvenEatRice Enthusiast
CantEvenEatRice
Posted

Thank you Evie!

mari-lyn Rookie
mari-lyn
Posted

There is a saying that life is too short for regrets and you certainly have helped me to look at that and start a new day. I would like to have the opportunity to share your story with a 50 year that I see as a patient about every 2 months. Here blood work indicates she has celiac disease, however, she is in some denial about it and says that "my doctor says that I just need to look for the symptoms - I only have Pre-Celiac". My lecture of either you do or you don't is not working. She is also has a rare blood disease and figures that this is the route of all of her problems.

If you are anywhere close to Anamosa Iowa give a reply - we have a new person every month to our support group at the hospital there - Jones Regional Medical Center. We have a good time and help each other along. We will be having our second annual potluck the third Thurday in October.

Marilyn

All-about-March Newbie
All-about-March
Posted

Evie,

First of all, Happy Birthday !! :D

Second, I want to say thank you. You wanted your post to help just one person....well it certainly helped me. :)

Just last night, I had a wee emotional breakdown. I am newly diagnosed and I have been really struggling with coping with the changes I'm needing to make and feeling guilty for the toll it is taking on those around me as well. I went through every emotion in the book last night and was ready to 'throw in the towel' and deem myself as misdiagnosed or that Celiacs is just a hoax. I do know better, just the frustration and depression got the better of me and I know I was overreacting to everything. (A thank you goes to the boyfriend for putting up with that last night!!)

I have no idea why I am finding this so hard to cope with and I feel guilty for not being able to just accept it, make the changes and move on... that is part of why I joined this forum. And your post is exactly what I needed to read this morning. Thank you again!

I hope that you have a wonderful day of celebrating!

AndreaB Contributor
AndreaB
Posted

Happy Birthday Evie!!!

Rusla Enthusiast
Rusla
Posted

Happy Birthday Evie!

Now I like you was told I had a wheat allergy 25 years ago at least. However, trying to force other doctors to look into things is futile. So like you I have a host of problems from this and the major one is losing more than ten teeth in less than five years. I just hope that people think back to you and many of us others when they don't think this disease can cause a lot of damage. May others benefit from what we all have lived through.

Guhlia Rising Star
Guhlia
Posted

Thank you for sharing, Evie.

HAPPY BIRTHDAY!!!

Ursa Major Collaborator
Ursa Major
Posted

Evie, you're great, I hope your story will help many.

Happy Birthday!

And I hope there are many more to come.

Guest nini
Guest nini
Posted

Evie, thank you for sharing, I too am on a mission to help others through my experience. I hope that I can help even one person recover from morbid obesity by going gluten-free... after losing 110 pounds I feel so compelled to share this with everyone I see, sure not everyone that is obese is because of gluten intolerance or celiac, but I hope if I can just help ONE person, my experience will have been worth it.

jukie Rookie
jukie
Posted

Evie-

Thanks so much for sharing! Being newly dx'd after watching four generations of my family suffer, your words give me hope for ALL of us.

And nini, consider your mission a success! My weight nearly kept me (and the doctors) from figuring this thing out. But thanks to people like you who have shared so much of your experience, I didn't fall through the cracks and am now on my way to recovery...THANK YOU!!!

CarlaB Enthusiast
CarlaB
Posted

Happy Birthday Evie!!! Happy Anniversary, too!!

Guest nini
Guest nini
Posted
Evie-

Thanks so much for sharing! Being newly dx'd after watching four generations of my family suffer, your words give me hope for ALL of us.

And nini, consider your mission a success! My weight nearly kept me (and the doctors) from figuring this thing out. But thanks to people like you who have shared so much of your experience, I didn't fall through the cracks and am now on my way to recovery...THANK YOU!!!

thank you for saying that! it means a lot

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Happy birthday, Evie! And--we have the same birthday!

Also wanted to let you know that, pretty much because of you, Nini, and Lynne, I have been gluten-free since finding this board in January--even though I have no diagnosis, just a really high IgG (which the dermatologist said meant nothing, even though I had a positive dietary response) on top of Hashimotos's and GERD. I have lost over 20 pounds of fat, several inches of bloating, been reminded what normal poops actually looked like (hadn't seen them in a couple of years), and eaten healthier than ever before (since I make everything from scratch now).

You guys have probably saved me from multiple autoimmune disorders, and have definitely saved my kids from countless tummy aches (they will get blood tests next week).

From the bottom of my heart--thank you!

daffadilly Apprentice
daffadilly
Posted

Happy Birthday Evie, AND Happy Anniversary - how wonderful !!!!!

marciab Enthusiast
marciab
Posted

Happy Birthday and Happy Anniversary. 60 years is quite an accomplishment.

Thank you so much for sharing your story. It is a good reminder for us all. Marcia

evie Rookie
evie
Posted
  • Author
Happy Birthday and Happy Anniversary. 60 years is quite an accomplishment.

Thank you so much for sharing your story. It is a good reminder for us all. Marcia

Was so occupied here with family visiting I have hardly been on my coputer for 2nd day until tonight!! came on tonight to a lot of NICE messages!! :) Want to THANK you all so very much!! :D Seems I have a second family on here!! We had a wonderful day with much family, friends & pastor here to share cake and ice cream with us. All except our younges dd, hubby and ddog are gone and they will start back home mon. am.

So of course i am on the tired side..g'nite dear friends.

Ursa Major Collaborator
Ursa Major
Posted
All except our younges dd, hubby and ddog are gone

Evie, the ddog just about killed me, you're taking the dear everything to the next level, I think. :D:blink::ph34r:

I am glad you had a good time!

gfp Enthusiast
gfp
Posted
Was so occupied here with family visiting I have hardly been on my coputer for 2nd day until tonight!! came on tonight to a lot of NICE messages!! :) Want to THANK you all so very much!! :D Seems I have a second family on here!! We had a wonderful day with much family, friends & pastor here to share cake and ice cream with us. All except our younges dd, hubby and ddog are gone and they will start back home mon. am.

So of course i am on the tired side..g'nite dear friends.

Who wouldnt be!

I spent last night listening to a legend .. a man of 81 (as of the day before yesterday) who tackled his illnesses and walked on stage (though he had to be helped on and off)

“A lot of people would like to have the actual truth. Some people don’t believe that diabetes is life threatening. But it is. I lost a sister and a niece who had diabetes. I tried to beg them to do what they should, but they’re not with me anymore.”

His message about the importance of diabetes management and blood glucose control is clear. “Make sure you check your blood sugar and see your doctor. Try your best to go with the diet you’re given— and don’t cheat by eating foods or quantities you’re not supposed to, or by doing things you’re not supposed to,” he says. “I’ve lived a pretty long time. I’m not sick today, and I haven’t been sick for a while.”

Just thought I'd share this in case anyone is feeling old... (and because the whole concert was so amazing and moving)

If its not clear already its obviously the great BB King!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,860
    • Most Online (within 30 mins)
      7,748
    Rena Celiac
    Newest Member
    Rena Celiac
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.