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

More Progress

Questore

Recommended Posts

Questore Rookie
Questore
Posted

Today is my 2 year anniversary from going gluten free, and I am better.

Of course, I am not as better as I would like to be...58 years of diminishing nutrition has taken it's toll.  I am now on Insulin for the Diabetes that hit two years before the discovery of those nasty alleles in the family genetics when my Niece was diagnosed.  It seems that not enough nutrients cause no end of ramifications to your overall health, but I can say with truth that I am making progress.

I am sleeping well, and actually feeling somewhat rested by the sleep, and evidently am taking up more nutrients for all purposes, since I have more energy, and do more to continue to alter my life to chase a full recovery. In the world's eyes it does not look like much, but when I consider how ill I have been in the past, and how much better I have come to feel, I can ignore other people's opinions.  I will never be the normal active person I failed to be the rest of my life while eaten gluten, but I will be a little less disabled, step by step, and consequently, happy that good things are happening to me, even if it seems like little progress to others who want an instant fix for a problem I have been suffering from since conception.

I wish, of course, to be fully healed from everything my body is reacting to due to lack of nutrients, and continue to take  mineral supplementation in an ionic base so that I can get some of the minerals to the right places.  And I am changing my diet for the fourth time, and cooking differently once again, and getting rid of low nutrient foods as my upper intestine seems to be acting as if the villi are back in place to a degree.  My stomach still protests anything with fiber being put in it.

I only know that going off gluten has made me better, and being properly diagnosed has changed my entire view of myself as being an unhealthy person.  I now only see myself as a starvation victim despite always having had a full belly, and have begun to look at who I have been, and the choices I made from the knowledge that I was a fine racing car operating on watered fuel, and suffering from bad mechanic's who had no idea they should check what was making my engine sputter!

I wanted also to report in, for those that think they will never get past the desire for a hot piece of garlic bread, and the lack of edible pasta...it can be done, and if you will but be patient with your self, and study all your reactions to food, you can design a life that will suit you well enough to enjoy being alive.

 

 

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

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted

Thank you for such an uplifting post. Your positive attitude and determination are inspiring, something I'd forgotten that this board was full of. Best wishes for your continued recovery.

manasota Explorer
manasota
Posted

Questore

Boy can I identify with you.  I was misdiagnosed after 60 years (of a very gluten-filled life).  I have been strictly gluten free for over 6 years.  I have not seen very much progress, if any.  I, too, suffer from many afflictions caused by this diagnosis delay.  It is now these other affliction which make me the most miserable--not the Celiac.  Sadly, I cannot say I have reached a point where I find life enjoyable.  I hope to get there.  I strive hourly to get there.  Please keep posting...

cyclinglady Grand Master
cyclinglady
Posted

I am so glad that you took the time to update us on your progress.  By doing do, you are helping so many people!  

Hugs!

icelandgirl Proficient
icelandgirl
Posted

Wow!  Thank you for that post...this will give hope to so many!

squirmingitch Veteran
squirmingitch
Posted

Hooray, hooray!!!! Progress is GOOD! 

Thank you for telling your story. It demonstrates that healing does happen!

Sheena Newbie
Sheena
Posted

Thank you, I needed to read this tonight. I've been struggling for the past 10 years with celiac symptoms and was completely brushed off and told it was an anxiety dissorder and ibs. It took my sister getting diagnosed for me to get taken seriously and positively diagnosed myself. 

Well, by the time I was diagnosed my teeth were chipping due to vitamin deficiency, my stomach wouldn't digest anything, chronic muscle aches, fogginess, and extreme fatigue.

im still struggling with trying to digest anything with fibre or lactose. Forget gluten-free bread. Luckily the fogginess and exhaustion have subsided so I actually feel like I can stay awake past 2pm to spend time with my kids. Yay for a bit of progress. 

I guess it's just nice to know there's a light at the end of the tunnel and that I won't go crazy craving prawn and lemon pepper fettuccine forever haha. 

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

I can assure you that the longer you are gluten-free, the better it gets and, unless you have other underlying conditions that complicate things, there is no reason people cannot make a complete recovery.  Do not stay in a negative state of mind, although it is allowed from time to time....everyone has their bad days.  There is also exceptional gluten-free pasta out there and gluten-free garlic bread can be easily made, for those who wish to have some when they are up to it. I know recovery time can be daunting for many of us but it always takes longer to heal when you do it the natural way, instead of plying yourself with meds. 

Good post, Questore!

Archived

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

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


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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

    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. 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:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis.  I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t.  Who knew that if I fed my dear invalid cousin a hamburger and used the same hand to eat a couple of her gluten free fries that I was cross contaminating myself.  Who knew that if my husband makes a sandwich and leaves crumbs on the counter which I sweep away with a dish towel then wash my hands and dry them on this same dish towel and then touch my lips that I potentially cross contaminated myself.  Who knew that just wiping off the table crumbs could still leave gluten on the table that has to be washed off with soap and water.  Who knew when my husband heats a tortilla by draping it over the toaster that gluten residue is possibly left behind.   Who knew that if my husband eats a gluten product and I kiss him on the lips that I was cross contaminating myself.  Who knew that if I should walk into the bakery to get my gluten free cupcake if they have been mixing up a batch of flour batter and there could be flour particles in the air I could inhale and contaminate myself.  Who knew I needed to be careful that my grand baby shouldn’t put there fingers in my mouth because they just ate a biscuit and I was cross contaminating myself.   Eating gluten free is the easy part.  But know one tells me how to live in the real world filled with gluten contamination just waiting to happen!   There I feel better getting all that off my chest but I feel isolated and alone in this journey. I sleep with a back scratcher, stand in my freezing cold pool, glob on tons of triamcinolone for the rash on my knees, back, bottom, elbows and ankles.  I use bottles of Scalpicine for the extensive rash on my scalp.  All my make up, medications, soaps, shampoos, cleaners, detergents are all gluten free.  But I still have a rash and I fear I will gouge and claw holes in my head and body before I can’t figure out how I am exposing myself to gluten.  I don’t even want to leave the house anymore.  I never eat any food or drink offered me at anyone’s home ever.  I can drink wine and eat potato chips!  Hurray for me, I finally agreed to try Dapsone even though I read it’s hard on your body but if I don’t get some relief am going to have a nervous breakdown from lack of sleep and high anxiety. Can anyone point me in the right direction? Thank you,  Helpless but Hopeful
×
×
  • 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.