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

Recovery Happens. Believe It!

squirmingitch

Recommended Posts

squirmingitch Veteran
squirmingitch
Posted

In 2 months I will have been strict gluten free for 3 years. I have dermatitis herpetiformis, the skin presentation of celiac disease (for those of you who don't know me). 

 

I have good news to report. I am 5'1" and celiac disease had me down to 93 (at times 90) pounds. After going gluten free I would weigh myself & get depressed that I was not gaining weight. This went on for literally years. I did know not to expect much the first year so I wasn't that concerned & it didn't bum me out too much during that first year. By the end of year 2 though, it was getting pretty depressing every time I stepped on the scale & I hadn't gained anything. I got tired of seeing the same thing every time I stepped on the scale so I just quit weighing myself. Just about the last month or two, I noticed my jeans felt a bit tighter than they had been. I screwed up my courage the other day & stepped on the scale. 103. I thought it was an apparition. I Have weighed myself every day for 4 days & it always turns up 103! It's REAL!!!!!! FINALLY, FINALLY!!!!!!!

Ha,ha,ha,ha,ha! If this keeps up, I'm going to have to get a new wardrobe because of weight gain for the very first time in my life (I'm 57)! :lol:  :lol:  :lol:  :lol:  :lol:

 

Also, my bp had been steadily inching up in the years before I found out I have celiac disease. Well folks, my blood pressure is now back to so normal there probably aren't many people in the world who have such normal bp. 

 

I've told you the things that can be measured. The other things like fatigue & gas, bloat, migraines, depression, etc., etc., etc...... have all resolved.

 

I do still have the rash. It is a billion times improved but I still get itchies here & there; rarely ever blisters any more. This is a humongous improvement. Those who know me, know what I'm talking about. I had the rash bad. It's just going to be a long time for me before I'm completely free of any vestige of the rash but I can certainly live with the state of it now. 

 

I have been reading in this forum thread after thread where you "newbies" are chomping at the bit for permanent improvement. I wanted to post this to let you know it really & truly WILL happen for you but it is not something that happens in mere months, nor in 6 months, nor in a year necessarily but it WILL happen. Some take longer than others. Just stay the course and know that one day it will be YOUR day to write a post like this.

 

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Awesome reminder to hang in there and stay patient.  :)  Here's to your good health!! :D

1desperateladysaved Proficient
1desperateladysaved
Posted

Oh, what good news!   I step on the scale daily too and find a new low nearly every day.  It is so strange when different things finally begin to happen.  I remember those days in the beginning when I just wanted to measure my bloated waist and have it go down!  I just wanted something to be visible that someone besides me could see.  NOW these things are happening, though I have felt much better for over a year.  I am so glad for you to be experiencing measureable change and hope that squirmyitch will one day be able to change her name!  I posted before and after pictures elsewhere, and would like to post them on Celiac.com using only my code name.  However, so far my attempts have failed!

 

Dee

.

bartfull Rising Star
bartfull
Posted

:D  :D  :D

 

Squirming, you have been one of the most informed and helpful people here on the board. You may never know how many people you have helped, but they know. You deserve perfect health and it's so good to see you well on the way. :wub: (((((HUGS))))) :wub:

cyclinglady Grand Master
cyclinglady
Posted

Congratulations!

I am really happy that your rash has improved. You are an inspiration for all folks with celiac disease, but even more so for those with DH!

squirmingitch Veteran
squirmingitch
Posted
  • Author

Awwwww, you guys are getting me all teary eyed but there's a huge smile on my face at the same time.

 

((((((((HUGS))))))) to all of you!

 

Happy healing! :)

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

I love reading posts like this!  Glad you are improving, and always a great reminder that good things will happen in time  :)

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Yay Squirmy : )

moosemalibu Collaborator
moosemalibu
Posted

Wonderful to read -  am still a newbie myself and sometimes find myself getting impatient. Great reminder as well as hope! :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,948
    • Most Online (within 30 mins)
      7,748
    Stephanie94
    Newest Member
    Stephanie94
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      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
      New Celiac Mama in My 30s

      By Mari · Posted

      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
      My only proof

      By Mari · Posted

      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
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.