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

Is It Too Late For Recovery


suebright

Recommended Posts

suebright Rookie

HI I'm 57 & after learning all about celiac disease I realise I've had symptoms all my life. After 5 weeks gluten free my tummy is feeling much better & the digestion is working well for the first time. My question is

: even at this age after only just discovering the problem will the long list of other symtoms improve or is it too late?

The symptoms are: severe headaches, occular migraine, difficult breathing, dizziness, extreme temperature variations, extreme sensitivity to light sound & motion, blurred vision, difficulty speaking, bad muscle pain in back & neck, chest pain, tremours, cold hands & feet, sense of unreality & disconnection.

Much has improved with the new diet so I will continue it anyway, but I would like to hear from others who have realised they were celiac at this stage in their life. Thanks.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I have had celiac since I was around 6 years old. I was finally diagnosed at age 48. 6 months before I was diagnosed I was in such bad shape, and had been for so many years, that my daughter came to me one morning in tears and told me the family would understand if I committed suicide. Like you I had doubts I would ever recover. My recovery from the daily and nightly attacks of excrutiating diarrhea were over fairly soon after diagnosis. The migraines were gone for good also within a short time. The other issues took a bit longer. Within 6 months though I could walk again without the canes that had been a part of my life for years. 2 years later doctors found I had reflexes again, I had lost those in childhood. My brain fuction returned to close to normal within a few months also.

I still have a couple neuro issues but they are mild, ataxia and mild memory issues. But now 8 years later I am healthier than I remember being for any part of my life.

Noone can guarentee that you will recover to a point where it was like you never had celiac to begin with but in time you will heal.

Be patient with your body. Do get you vitamin and mineral levels checked and supplement with a good for sure gluten free supplement what you need to supplement. Hint, barley and wheat grass are thought to be gluten free but many of us do react to them so avoid supplements that contain those. Also be sure to check all your meds, if you take any, for gluten with your pharmacist or the maker. If you take generics check at each refill.

Read as much as you can here and take care to avoid cross contamination.

I hope you recover quickly but we do usually have some ups and downs at first. Ask any questions you need to and do feel free to vent your frustrations. Most of us have been there and we are a pretty understanding bunch of folks.

Ahorsesoul Enthusiast

I was in my 50s when going gluten free. It's never too late!!!!!

Takala Enthusiast

I don't see any reason why you wouldn't be able to get rid of many of those symptoms, as long as you went to truly gluten free. Takes awhile. You might have other food sensitivities or allergies in addition to the gluten, the most common are reactions to soy and dairy. You also have a lot of the symptoms I was getting from an over the counter anti acid medication taken for heartburn.

I went off grains in my mid forties and am in my mid fifties now, back on many foods I gave up initially, as my body re adapted after removing the real culprit, which was gluten.

knittingmonkey Newbie

HI I'm 57 & after learning all about celiac disease I realise I've had symptoms all my life...

Much has improved with the new diet so I will continue it anyway, but I would like to hear from others who have realised they were celiac at this stage in their life. Thanks.

I'm 53, diagnosed celiac on 4/30, after at least five years of discomfort. I'm grateful it seems we found the problem and am working diligently om healing. Have embraced the Gluten-free lifestyle

suebright Rookie

I have had celiac since I was around 6 years old. I was finally diagnosed at age 48. 6 months before I was diagnosed I was in such bad shape, and had been for so many years, that my daughter came to me one morning in tears and told me the family would understand if I committed suicide. Like you I had doubts I would ever recover.

thanks so much for your reply, I'm greatly encouraged. Should I go the route of a nutritionist to check vitamin &

mineral levels or GP

ravenwoodglass Mentor

Your GP can check those levels. If you are not knowledgeable about nutrition do make an appointment with a nutritionist, if you ask the doctor for a referral it should be covered under your insurance. Do not however think the nutritionist will be able to give much info on being gluten free, some are knowledgeable but many are not. Your in the right place here to learn about the lifestyle as there is alot more than just food involved.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

It's never too late--I was 49 when diagnosed 5 years ago. It took longer for me to get to a point where I have more good days than bad, but compared to how I was before is like night and day. I had symptoms from the age of about 29 that got much worse after a bout with the flu in late 2003.

Best of luck--and welcome :)

T.H. Community Regular

I agree with everyone: it's definitely not too late! But the adult diagnosis definitely presents its own challenges

My father was diagnosed at about 56. He had some issues improve, and some it was too late for. He'd already had both hips replaced, and some of his joints are permanently injured from what his body has been through. Other problems have healed.

However, he didn't do too much research, and his doctor did not check him for vitamin levels or other issues like osteoporosis. It is 8 years later, and now he is having new health problems appear. He's having to go find a new doctor who will look at him again and see what may have been missed, or not have healed, that should have been taken care of when he was first diagnosed.

Another thing that we never did was look at anyone else in the family. Now we know the statistics: of people 1 degree separated (sibling, parent, or child) from a celiac positive person, 1 in 22 will also be positive. I started getting sick myself last year, got tested, and I came back positive. It started a round of testing, and my brother and daughter came back positive as well, with my son having symptoms that improved on a gluten free diet, even though he tested negative. Many of us have discovered food allergies, as well, that we have to adjust to now, as well (that is not uncommon for celiacs).

Asking around the family, we've found cousins who have had gut issues for years with no diagnosis that are now getting tested, too.

Here's wishing you well and hoping all of your symptoms improve!

HI I'm 57 & after learning all about celiac disease I realise I've had symptoms all my life. After 5 weeks gluten free my tummy is feeling much better & the digestion is working well for the first time. My question is

: even at this age after only just discovering the problem will the long list of other symtoms improve or is it too late?

The symptoms are: severe headaches, occular migraine, difficult breathing, dizziness, extreme temperature variations, extreme sensitivity to light sound & motion, blurred vision, difficulty speaking, bad muscle pain in back & neck, chest pain, tremours, cold hands & feet, sense of unreality & disconnection.

Much has improved with the new diet so I will continue it anyway, but I would like to hear from others who have realised they were celiac at this stage in their life. Thanks.

sandsurfgirl Collaborator

HI I'm 57 & after learning all about celiac disease I realise I've had symptoms all my life. After 5 weeks gluten free my tummy is feeling much better & the digestion is working well for the first time. My question is

: even at this age after only just discovering the problem will the long list of other symtoms improve or is it too late?

The symptoms are: severe headaches, occular migraine, difficult breathing, dizziness, extreme temperature variations, extreme sensitivity to light sound & motion, blurred vision, difficulty speaking, bad muscle pain in back & neck, chest pain, tremours, cold hands & feet, sense of unreality & disconnection.

Much has improved with the new diet so I will continue it anyway, but I would like to hear from others who have realised they were celiac at this stage in their life. Thanks.

I was diagnosed at 40 after having it my whole life. I was VERY sick with much more than just gastro symptoms. I improved little bits each week gluten free but did not have a completely symptom free day until I was 5 months gluten free. I'm 6 months into it now and feeling great!!!! Don't give up and don't lose hope. Be diligent and get the gluten out of your life, even in your shampoo and soap.

My dizziness was made worse because I had electrolyte imbalances. I had to drink Gatorade daily for awhile and lots of water. I still do some days. People give me a ration about Gatorade being crap, but every natural electrolyte supplement I tried gave me horrible D and made me feel worse. Salt is not electrolytes so don't try to just add salt to something.

Ahorsesoul Enthusiast

My dizziness was made worse because I had electrolyte imbalances. I had to drink Gatorade daily for awhile and lots of water. I still do some days. People give me a ration about Gatorade being crap, but every natural electrolyte supplement I tried gave me horrible D and made me feel worse. Salt is not electrolytes so don't try to just add salt to something.

I agree with the salt statement. A Mayo Clinic specialist told my Dad to drink Gatorade to get rid of his heart arrhythmia. Dad won't do it but I do and presto my funny heart beats and flutters are gone. Such a simple solution.

Mari Contributor

I guess I'm the oldest so far, diag. at 70 but I read a message from a woman's daughter who was 86! and doing better. I'd had celiac disease all my life and after more than 4 years gluten-free and dairy free I'm returning to health tho it's been slow progress. Problems with diet and allergy I partly solved by using the Specific Carbohydrate Diet, and since I usually use alternative and herbal remedies, I've done various types of cleanses and they were a great help in the 25 years when I was getting worse and had no idea that I had a problem with gluten. I'm going to be 74 this fall and think that I'm going to be able to enjoy some of those golden years that people talk about.

wildflwr43 Newbie

I'm 67 and was just diagnosed after a lifetime of misdiagnoses. It's never too late. I was so run down I ended up with a 4-day stay in the hospital, during which time I had a battery of tests. The EGD uncovered the small intestine damage (flattened villi). I am now living gluten-free and slowly regaining my health. Keep at it....!!

gf-soph Apprentice

My grandmother, 84, went gluten free a couple of months ago. Although she is not celiac (negative blood tests & biopsy) she had GI problems all her life, as well as bowel cancer in her 50s, and osteoporosis. I was unsure if she would see much benefit as it is likely it has been a problem for her all her life, she was a fussy eater as a child as so many foods made her feel unwell.

Within a couple of days her digestive system felt better than it had in years, and within a couple of weeks she looked a decade younger. She was happier, enjoying her food for the first time in years, had less back pain - even her eyes were brighter! She accidentally glutened herself recently, and she had lots of stomach pain, a flare up of bad back pain, and had trouble breathing the other night - luckily it was just terrible indigestion. Even subtle things like being less suspicious of people, and there is far less clutter in her house (she is a bit of a hoarder).

So no, it is not too late! Of course it is possible that some things may not resolve, but there is a good chance that with a nutritious diet and appropriate supplements, you may feel better than you can imagine!

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. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      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
      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
      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
      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.
×
×
  • 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.