Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

What If I Already Have Permanent Damadge?

Electra

By Electra
in Coping with Celiac Disease

Recommended Posts

Electra Enthusiast
Electra
Posted

Ok after reading most of the posts here I realize that I should be dead right now. I'm really pretty scared at this point because I can't even get in for a test until Monday and my symptoms have been so bad for so long that I'm afraid I may end up in a comma by then. If I have to continue to eat Gluten then my symptoms are going to escalate again until I can't eat for days again and until my stomach swells up and my spleen is so sore I can't walk. My back will ache so bad I won't be able to roll over and my visual migraines will send me into chest pain panic that might not end. I have been living with this for YEARS and it just continues to get worse, but lately it's gotten so bad at times that I literally thought my insides were going to explode out of me!! My leg is so bad I feel like they should amputate it, and my family gets the wrath of my moody outbreaks when I'm on Gluten.

How could I have this for so long and no one ever know it. How come I have to diagnose myself on this one? How come someone didn't do something before now. It might be too late to undue the damadge that's been done by my disease, so how am I ever going to get that back? What do I tell my kids if my organs start to fail? How could I not know I had something like this?

Sorry I know I can't blame myself and I know no one could have known, but I'm just so upset right now and confused that I can't even function on a normal level. Monday could not come early enough for me!!

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

Celiac.com Sponsor (A8-M):


Lymetoo Contributor
Lymetoo
Posted

Take a deep breath! You're going to be fine! I've probably had this forever also. Once you go gluten free, your body begins to heal. You're going to make it!!

tarnalberry Community Regular
tarnalberry
Posted

I could be misreading your post, but I'm getting quite a sense of panic from what you've written.

Big deep breath!

You're stuck in a negative 'what if' loop. But you don't know that it's likely to go that way. Heck, you could find yourself in a positive what if loop (what if you get tested on monday and get the results back in three days? what if the results come back with a really obvious answer? what if the dietary test gives you results right away? what if the diet is really easy to stick to? what if you feel better in a few months on the diet?). Or even just a relatively nominal what if loop.

Monday is five days away. You can make it through those five days. It'll be alright. Just take it one day, one hour, at a time, focusing on all the other things you need to do, or can do.

Guest nini
Guest nini
Posted

I was 34 by the time I was dx'ed... yeah I was probably nearly dying, but I'm still here... Once you go gluten free (and dairy free if you need to) the damage will begin to heal. It takes time but it does get better. Granted I do still have some residual effects and probably some permanent damage, but I believe in the body's innate ability to heal itself once you remove the offending poison and get on with the business of listening to your body. I'm so much better than I was nearly 4 years ago, and fortunately through my experience my daughter will not have to grow up with a lifetime of illness and being accused of being a hypochondriac or being crazy.

IrishKelly Contributor
IrishKelly
Posted
Ok after reading most of the posts here I realize that I should be dead right now. I'm really pretty scared at this point because I can't even get in for a test until Monday and my symptoms have been so bad for so long that I'm afraid I may end up in a comma by then. If I have to continue to eat Gluten then my symptoms are going to escalate again until I can't eat for days again and until my stomach swells up and my spleen is so sore I can't walk. My back will ache so bad I won't be able to roll over and my visual migraines will send me into chest pain panic that might not end. I have been living with this for YEARS and it just continues to get worse, but lately it's gotten so bad at times that I literally thought my insides were going to explode out of me!! My leg is so bad I feel like they should amputate it, and my family gets the wrath of my moody outbreaks when I'm on Gluten.

How could I have this for so long and no one ever know it. How come I have to diagnose myself on this one? How come someone didn't do something before now. It might be too late to undue the damadge that's been done by my disease, so how am I ever going to get that back? What do I tell my kids if my organs start to fail? How could I not know I had something like this?

Sorry I know I can't blame myself and I know no one could have known, but I'm just so upset right now and confused that I can't even function on a normal level. Monday could not come early enough for me!!

NO!!! You are not too late to heal yourself...as long as you are still alive you can always heal, REMEMBER THAT!! NEVER LET ANYONE TELL YOU DIFFERENT!! I reccommend to take the following supplements (it will cut down your healing time in half) L-Glutamine and Digestive Enzymes. These are natural and you can find them at your nearest health food store. The L-Glutamine has natural amino acids (like fresh fish) that help to actually heal the damage done to your intestines, and the Digestive Enzymes (an enzyme your body is already suppose to be creating which has to do with the good bacteria in your diegestive tract) helps to break down the food, which in turn means less gas and watery diarhea, which in turn means waaayyyyy less pain!! Good Luck and God Bless!! :D

Ok after reading most of the posts here I realize that I should be dead right now. I'm really pretty scared at this point because I can't even get in for a test until Monday and my symptoms have been so bad for so long that I'm afraid I may end up in a comma by then. If I have to continue to eat Gluten then my symptoms are going to escalate again until I can't eat for days again and until my stomach swells up and my spleen is so sore I can't walk. My back will ache so bad I won't be able to roll over and my visual migraines will send me into chest pain panic that might not end. I have been living with this for YEARS and it just continues to get worse, but lately it's gotten so bad at times that I literally thought my insides were going to explode out of me!! My leg is so bad I feel like they should amputate it, and my family gets the wrath of my moody outbreaks when I'm on Gluten.

How could I have this for so long and no one ever know it. How come I have to diagnose myself on this one? How come someone didn't do something before now. It might be too late to undue the damadge that's been done by my disease, so how am I ever going to get that back? What do I tell my kids if my organs start to fail? How could I not know I had something like this?

Sorry I know I can't blame myself and I know no one could have known, but I'm just so upset right now and confused that I can't even function on a normal level. Monday could not come early enough for me!!

Oh yah, and the Digestive Enzymes will also help if your constipated ;)

jerseyangel Proficient
jerseyangel
Posted

Oh gosh--I know how you feel! It's going to be alright--really :)

I was sick for at least 20 years, and was misdiagnosed over and over.

I was finally diagnosed last year at age 49. I pretty much figured it out on my own, too, before going to a Gastroenterologist and asking if this might be my problem. It makes me mad that no one else ever thought of this, but there's not anything I can do about it now.

I've been gluten-free for about 16 months. It was slow going at first-- and took about 4 months before I began to "turn the corner". Shortly thereafter, my symptoms returned. Through an elimination diet, I discovered I was intolerant to several other foods. I cut the last of those out and have been much better lately.

It can take some time, but you'll begin to heal. The important thing is that you finally know, and can really now do something to reverse the damage and begin to get better. :)

Best of luck on Monday.

happygirl Collaborator
happygirl
Posted

For most, Celiac damage is reversible. There are cases (including cases on this board) where people don't fully recover.

That being said, the vast majority who have Celiac, when they go on a strict 100% gluten free diet, recover. It takes awhile for some to return to 'normal', but Celiac is actually a "great" (haha!) disease to have because it is controllable. How many other autoimmune diseases can you say THAT about?!!!!

We are ALL living proof that you will be ok. How's that ;)

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

Celiac.com Sponsor (A8-M):


jukie Rookie
jukie
Posted

I have also been sick for a long time and was recently dx'd just before turning 43. What I can tell you is that even at this early stage in the healing process I am noticing changes and improvements. Yes, they may be slow in coming or even seem insignificant, but it's only going to continue getting better. Once you start the diet and the healing begins, even the smallest of improvements can seem miraculous...and with miracles comes hope. You will get better!

Lymetoo Contributor
Lymetoo
Posted

I was dxd at age 55 and I'm doing great! :)

tiredofdoctors Enthusiast
tiredofdoctors
Posted

I agree with the "take a deep breath" advice! Interestingly, I had intermittent enlargement of my spleen, and my doctors would always say, "I have NO idea why it would be like this." Oddly, I mentioned this last month when I went to the allergist/immunologist, and he said, "It was probably when you were producing large amount of antibodies. It stands to reason that when your body is producing that many antibodies, your spleen would HAVE to be enlarged." First doctor I have heard say that . . . and I've seen plenty!

Once I went gluten-free (over 1 1/2 years ago) I haven't had an enlarged spleen since. My guess is that about 6-8 months (sorry, that's the bad news) you will feel like a new person! You will probably feel BETTER prior to that, but it does take awhile for the antibodies to decline. So, relax, take a breath, and know that everything is going to be FINE.

Hugs to you,

Lynne

Ursa Major Collaborator
Ursa Major
Posted

Electra, I self-diagnosed myself a year ago, at the age of 52. I was sick from the age of three, and was getting worse and worse.

I am still healing and getting better. Yes, I do believe I've suffered a lot of permanent damage. But even if I get only 50 to 75% better, that would still be a huge improvement. And who knows, I might improve even more than that within a few years.

I believe that you are quite a bit younger than me, and have therefore a much higher chance of getting completely well. It is believed that people who were undiagnosed until their fifties or later may not heal 100% any more, as the damage is too bad, and has been there for too long - but there are plenty of exceptions here as well.

But any improvement is still amazing and seems like a miracle. So, don't panic, five more days are NOT likely going to kill you or cause suddenly irreparable damage, even if it feels that way. You will be fine, you need to focus on that.

Lymetoo Contributor
Lymetoo
Posted

What happened to Electra?? :huh:

Ursa Major Collaborator
Ursa Major
Posted

Probably putting kids to bed, and then too exhausted to come back here. I'm sure she'll be back tomorrow.

Electra Enthusiast
Electra
Posted
  • Author

Sorry I'm still here, but have had a bunch of appts lately and am dealing with school issues for one one my children. Man I just have so much going on right now that I can't keep up UG!!

Archived

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

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


  • Member Statistics

    • Total Members
      127,956
    • Most Online (within 30 mins)
      7,748
    BLF
    Newest Member
    BLF
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Vaccines

      By Beverage · Posted

      I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting rusty wood and probably animal droppings, and it had been 10 years, so I got a booster recently, but took someone with me. My doc back then did say he was concerned about my reactions to vaccines, but we never talked about what alternatives there might be. What is your risk when you do get sick? For me, I almost always end up needing prednisone and antibiotics and have to crawl back to life for months after those are done, prednisone really messes me up, raises my blood pressure to stroke levels, and the antibiotics mess up my intestines really bad. I have to take mega doses of C and D and B's, especially flush niacin, and probiotics.  So preventing flu is critical for me since I always get a long term negative effect from the treatment. I did a lot of research, traditional and alternative medicine, and they all say high vitamin D levels are crucial to so many kinds of illnesses, including flu, cancer, etc.  People with high D during covid had much better outcomes.  I always tested low in D even with high oral supplementation of D3 and K2.  So last year I saved up and bought a real vitamin D lamp, not one of those cheapie ones that you can get on Amazon that don't work, seriously, those are junk. Wow what a difference with a real D Lamp. We haven't been sick all year, which is rare for me, even after being around several sick people or people that came down sick just after visiting. I use the lamp about every other day or if I've been in a group of people or around anyone sick.  I have not yet had my D levels retested since starting with it (will do that at annual check up later this year), but I have not gotten a cold or flu (knock on wood), feel better than usual for a cold wet winter in the NorthWest, and my hair is growing in like crazy, all signs of improved vitamin D levels. It doesn't take long to use, just a few seconds and first and gradually build up. I now do it for a count of 200, which is about 3 minutes. I don't remember all the details on how the body creates its own vitamin D, but I do remember that the body makes a reaction on the skin and you don't want to wash that off for a few hours.  So I do the D Lamp right after my shower, not before.  There are 2 reputable ones that I found in my research: Sperti Vitamin D Lamp uses florescent tubes, you stand and turn in front of it, be sure to get the VITAMIN D LAMP, not the tanning lamp:  https://www.sperti.com/product/sperti-vitamin-d-light-box/ Chroma Vitamin D Lamp is LED's, you can stand and turn in front of it or hold it in your hand and wave it over your body, always keeping it moving so you don't burn:  https://getchroma.co/products/d-light-vitamin-d-light-device-uvb-red-nir AND YOU MUST WEAR SPECIFIC EYE PROTECTION WHEN USING, KEEP ALL PETS AND OTHERS AWAY, THE GLASSES ARE PROVIDED WITH THE D LAMP. I got the Chroma D Lamp when they had a huge sale last year, it's a small start-up company in Seattle.  Sperti is a larger longer term well known, and you can sign up for a 10% discount on their web site.  If Chroma had not had the sale when I was going to buy one, the Sperti would have been fine. They both often have back orders on them, but they do deliver as promised. I have read various articles on the effectiveness of the flu vaccine for example, not always highly effective every year.  Since your risk with vaccines is high, or if your risk of bad illness if you get sick is high, maybe consider how to mitigate both in another way, perhaps a D Lamp. 
    • trents
      Facial pain

      By trents · Posted

      That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
    • Mnofsinger
      Facial pain

      By Mnofsinger · Posted

      Hi @CeliacMom502, As always, consult a medical professional on any advice you receive.  I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate> I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch. Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously.  Hope my situation helps even now this is now almost three years later from your message!  
    • Scott Adams
      Celiac-safe home for summer rental in Washington DC

      By Scott Adams · Posted

      It's nice to see celiac-safe options out there for guest homes.
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      Your situation involves interpreting elevated Deamidated Gliadin Peptide (DGP) IgG levels, which can indeed be confusing without clear symptoms or additional diagnostic tools like a biopsy. Here’s a possible approach to help clarify your next steps: Understanding DGP IgG: DGP IgG is a blood test often used to help diagnose celiac disease, particularly in individuals with IgA deficiency. However, since you’ve confirmed you don’t have IgA deficiency, the focus should shift to other celiac-specific tests, such as tissue transglutaminase IgA (tTG-IgA) and endomysial antibodies (EMA-IgA), which are more specific for celiac disease. Elevated DGP IgG alone is not diagnostic of celiac disease but may indicate gluten-related immune activity. Non-Celiac Gluten Sensitivity (NCGS): You’re correct that NCGS does not typically show abnormalities in blood tests like celiac disease does. NCGS is diagnosed based on symptoms (e.g., bloating, fatigue, brain fog) that improve on a gluten-free diet, after celiac disease and wheat allergy have been ruled out. Since you don’t currently have symptoms, NCGS seems less likely in your case. Possible Next Steps: Monitor Symptoms: If you remain asymptomatic, it’s reasonable to continue eating gluten and retest after some time. This is because celiac disease can develop or become symptomatic later, and ongoing gluten consumption is necessary for accurate testing. Repeat Testing: Consider repeating the tTG-IgA test, as it is the most sensitive and specific for celiac disease. If this is also elevated, it strengthens the case for further investigation. Genetic Testing: If available, HLA-DQ2 and HLA-DQ8 genetic testing can help rule out celiac disease if negative, as nearly all celiac patients carry one or both of these genes. However, a positive result doesn’t confirm celiac disease, as these genes are common in the general population. Dietary Trial: If testing remains inconclusive and you develop symptoms, a supervised gluten-free diet trial might provide clarity. However, this should only be done after thorough testing, as going gluten-free prematurely can interfere with accurate diagnosis. Biopsy Limitation: Since a biopsy is not available in your town, you’ll need to rely on blood tests and clinical judgment. If your tests remain inconclusive but you develop symptoms, you may need to travel to a facility that can perform a biopsy for definitive diagnosis. In summary, if I were in your position, I would continue consuming gluten, monitor for symptoms, and retest with more specific celiac markers (tTG-IgA and EMA-IgA) in a few months. If symptoms develop or tests remain ambiguous, consulting a gastroenterologist for further guidance would be advisable. Always work with a healthcare provider to interpret results and tailor next steps to your specific situation.
×
×
  • Create New...