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

Recommended Posts

evie Rookie

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

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

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

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

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

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
:) 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

Thank you Evie!

Have a great weekend with your family! :D

Happy Birthday 2 days early. :P

CantEvenEatRice Enthusiast

Thank you Evie!

mari-lyn Rookie

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

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

Happy Birthday Evie!!!

Rusla Enthusiast

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

Thank you for sharing, Evie.

HAPPY BIRTHDAY!!!

Ursa Major Collaborator

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

Happy Birthday!

And I hope there are many more to come.

Guest nini

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

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

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

Guest nini
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

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

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

marciab Enthusiast

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
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
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
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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,955
    • Most Online (within 30 mins)
      7,748

    Mabelie
    Newest Member
    Mabelie
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.