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 Am So Lucky To Have Celiac Disease!

MitziG

By MitziG
in Coping with Celiac Disease

Recommended Posts

MitziG Enthusiast
MitziG
Posted

Sounds crazy, I know. But I really DO feel lucky! A year ago today I was diagnosed, and had that not happened I would still be the same depressed, sick, miserable person that I was for the last 30 years. For me, the diagnose was a life saver. Had it been negative, I may have tried the gluten free diet at some point, but I know myself, and I would have cheated. I wouldn't have stuck with it long enough to see any results, that is for sure. It was WEEKS before I felt the beginning of the brain fog lifting, 6-7 months before I noticed I wasn't so sick and depressed as I used to be, and at 10 months, I realized I felt better than I had in 20 years! Today, at one year gluten free, I feel so DANG GOOD!!! I wake up in the morning without an alarm, and I have the energy to go through the day, usually without even a nap! I used to sleep 16 hours a day and was STILL so exhausted I thought I was dying! I have had exactly ONE virus in the last 12 months- I cant remember a time in my life when I wasn't sick with some cold or virus at least once a month!

Am I 100%? No...maybe I wont ever be. After all, no one is! But I feel about 80%, which is so darn good I could cartwheel most days! I am happy...and I have NEVER been happy!

I still have interstitial cystitis- but if I am very careful about avoiding dairy and any cross contamination of gluten, it is very manageable.

Struggling with adult acne- but eliminating dairy and sugar seems to be helping.

I don't have a ton of stamina yet, but since my vitamin D is still not quite up to snuff after a year of supplementing, I can only see that improving. I certainly don't deal with the crippling fatigue I was having!

So...my reason for posting is to offer encouragement for those of you still struggling. Those who are trying the diet but "dont feel any different yet" Those who think despite their Celiac dx, that couldn't POSSIBLY be why they feel so awful.

Hang in there. Life can get SO much better. I have proof! :)

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Yay!

squirmingitch Veteran
squirmingitch
Posted

Hooray!

Inspiring!

alex11602 Collaborator
alex11602
Posted
:)
jess-gf Explorer
jess-gf
Posted

It's so nice to see positivity every now and then :)

mamaupupup Contributor
mamaupupup
Posted
:) Thank YOU!
JustNana Apprentice
JustNana
Posted

Sweet Mitzi

Thank you sooo much. I've been gluten-free only 7-8 weeks and have sabotaged myself accidentally a time or two. It is very heartening to hear about your last year.

I can't remember what it felt like to be energetic, even-keeled emotionally, pain free, etc. But I know I did!

At my age, (mid 60's) I'm not expect g miracles, just some real improvement. My best estimate is that I've been undiadnosed for 10-15 years. My vitamin and mineral deficiencies are Bad enough to cause most of my symptoms, especially vitamin D and b12.

But I am very optimistic. Just knowing I'm not a head case and not alone means so very much.

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

Celiac.com Sponsor (A8-M):


dani nero Community Regular
dani nero
Posted

I so hear you!

Good for all of us :-)

Finally-45 Contributor
Finally-45
Posted

I'm going on 8 months and though I've had some improvement, I haven't had as much as you! You are an inspiration! I just posted about getting gluttened from Ore Ida Tater Tots (in a cafeteria of all places) on the food products forum and reading your post has encouraged me to stop taking risks like that, especially as I sit here still feeling the side effects 24 hours later. :rolleyes:

love2travel Mentor
love2travel
Posted

What an uplifting thing to read! It is awesome that you are feeling so much better. Just imagine how you will feel in another short little year! A year at the time sounds nearly insurmountable but it really is not that long retrospectively. I, too, was diagnosed a year ago. Thanks for sharing - this is encouraging news. :)

IrishHeart Veteran
IrishHeart
Posted

Well, you go GIRL!! :)

Good for you! :) I am so very happy for you!!!!

Thank you for sharing your progress.

I love your obvious joy about getting well and seeing an improvement in your symptoms, while still acknowledging that realistically, there are things still left to resolve.

Wisely, you are looking at where you ARE right now, not the past or the future.

Things steadily improve--this is what I have heard constantly from people 3, 5 even 10 years gluten-free. (I believe them! and I also keep my eyes on the prize-full recovery.)

You are very encouraging!!

So many times I have been told to just "hang in there" when things were so bad, and in turn, I say the same thing to newbies. It is TRUE. It takes time, but healing happens. I am living proof and so are YOU!

Keep up the great work!!

Cheers, IH

MitziG Enthusiast
MitziG
Posted
  • Author

Thank you everyone for your kind words! When I was diagnosed I did not have "classical" Celiac symptoms-those were long ago in my childhood and I think my body was just too tired to bother with the chronic diarrhea and vomiting that I had for years. As an adult I now had depression,terrible interstitial cystitis, low immune function, chronic fatigue, rotten teeth, bad breath, more aches and pains than I could count, hair falling out, constant sinus pain...and it just didn't seem logical that FOOD could be making me feel that way! SO many doctors dismissed me as a hypochondriac and just kept shoving antidepressants at me- I was even beginning to wonder if maybe they were right. I really had pretty much given up hope of ever feeling "normal."

But alas- here I am- normal-er than I have ever been! Everyone heals differently though, so I hope others who are at a year don't feel like they are not progressing if they are still suffering. My two kids were dx the same time as me- the 8 year old is much better- but still has some issues and slightly elevated antibodies. My 13 year old was asymptomatic at the time of her dx- and since going gluten free she is a mess. Her immune system just went nuts! But I am optimistic that they too will be leaps and bounds ahead healthwise in the long run!

I am happy if I was able to encourage any of you- I know how hard it can be to stay positive!

foofangirl Newbie
foofangirl
Posted

Thanks so much for your positive words! I am newly diagnosed and so thrilled to hear there is a normal me at the end of this tunnel. I thought I was crazy for so long, but it was Celiac. I know it will take time, I still have no energy and hurt like hell, but the constant abdominal pain, bloating and diarrhea have subsided.

Sounds crazy, I know. But I really DO feel lucky! A year ago today I was diagnosed, and had that not happened I would still be the same depressed, sick, miserable person that I was for the last 30 years. For me, the diagnose was a life saver. Had it been negative, I may have tried the gluten free diet at some point, but I know myself, and I would have cheated. I wouldn't have stuck with it long enough to see any results, that is for sure. It was WEEKS before I felt the beginning of the brain fog lifting, 6-7 months before I noticed I wasn't so sick and depressed as I used to be, and at 10 months, I realized I felt better than I had in 20 years! Today, at one year gluten free, I feel so DANG GOOD!!! I wake up in the morning without an alarm, and I have the energy to go through the day, usually without even a nap! I used to sleep 16 hours a day and was STILL so exhausted I thought I was dying! I have had exactly ONE virus in the last 12 months- I cant remember a time in my life when I wasn't sick with some cold or virus at least once a month!

Am I 100%? No...maybe I wont ever be. After all, no one is! But I feel about 80%, which is so darn good I could cartwheel most days! I am happy...and I have NEVER been happy!

I still have interstitial cystitis- but if I am very careful about avoiding dairy and any cross contamination of gluten, it is very manageable.

Struggling with adult acne- but eliminating dairy and sugar seems to be helping.

I don't have a ton of stamina yet, but since my vitamin D is still not quite up to snuff after a year of supplementing, I can only see that improving. I certainly don't deal with the crippling fatigue I was having!

So...my reason for posting is to offer encouragement for those of you still struggling. Those who are trying the diet but "dont feel any different yet" Those who think despite their Celiac dx, that couldn't POSSIBLY be why they feel so awful.

Hang in there. Life can get SO much better. I have proof! :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    Bryan s
    Newest Member
    Bryan s
    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
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • 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.