I’m terrified it’s too late for me😭

[Cathijean90]

I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 

[trents]

Welcome to the forum, @Cathijean90!

I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992.

Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago.

The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole.

Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart!

But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?

[cristiana]

Hello @Cathijean90

Firstly, welcome to the forum, you have come to the right place!

I know this is much easier to say than to do, but try not to worry.  Whilst it is awful on so many levels that you have only just found out that Coeliac Disease is the issue behind all your problems, when you could have known 15 years ago, as Trents has said, it is really not at all uncommon for people to have symptoms for years before the doctors know what they are dealing with. 

I was worried, too, that I'd never get better when I was first diagnosed.  My nutritionist said it wasn't too late and I didn't believe her!  But you know what -  I am feeling so much better now. 

I've known of people living near me who were diagnosed in their 70s and 80s and have bounced back, and my consultant has even diagnosed someone in their 90s!  So being diagnosed older is something that also happens a lot.

I am now in my 50s but my first symptoms, looking back, probably started with bouts of diarrhea in my teens and terrible nauseating migraines in my 20s, with a mouth full of ulcers twice in my 30s, aura migraines starting with my first pregnancy at 34, hallucinations with both pregnancies and a pre-term baby with my second pregnancy.  Weird liver function tests suggestive and iron deficiency, which sent me into a spin because my GP said it might be a type of cancer, then blood in my stools and clinical anxiety in the months prior to my diagnosis.    Wow - what gluten can do to someone!  But now, apart from a few minor issues with aura migraines, these issues have gone away.  It has been so worth giving up gluten, people say I have good self-control but frankly, and I am sure you feel the same, knowing how sick gluten can make us, I'm not remotely interested in eating gluten ever again!

I've recently discovered my GP didn't tell me my cholesterol is creeping up when he tested me three years ago.  If I had known I'd have started being much more careful with my diet.  I dread to think what my cholesterol levels are now,  I'll have to do a test sooner or later but I do need to try to do something about it now.  So I do relate with your situation. To have not had the diagnosis passed onto you is awful. 

But the good news is you do know now.   Also, you will be taking your diet seriously, which will give you the best chance of a good recovery.  

Kick gluten out of your diet, get your doctor to run some tests to see if you have any vitamin deficiencies, and address those, and also see if you have any thyroid issues which occasionally affect coeliacs and can be easily treated.   Build your strength up with the best whole food you can manage, and try to take one day at at time. 

On having children:  my friend had a series of miscarriages before she was diagnosed with coeliac disease, and then when she started a gluten free diet, no more - she carried two more pregnancies to term.  

I am so glad you have a faith, my Christian faith has been a huge help to me on my journey.  

Two  books on anxiety and depression too, helped, if you feel you are struggling with either or both.  The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs, by Dr Steve Llardi, and At Last a Life by Paul David.  Both available online.

Come back to us if you have any more questions.  You are not alone.

Cristiana

 

 

Edited March 9 by cristiana

[Scott Adams]

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Cathijean90]

Thank you so much Scott 🫶🏻

[James47]

Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x

[jeema]

@Cathijean90 It's pretty common to suffer from symptoms for a long time.  I had symptoms for a decade before I was diagnosed and I think that is about average.  The problem is the symptoms are often vague enough to be attributed to other digestive issues and that was the case with me.  It was only after I found out I was anemic from routine bloodwork and the doctor referred me to a gastroenterologist that I was finally diagnosed.  Afterwards I was mad at myself for not figuring it out sooner.

That being said, you do probably need to talk to your doctor and figure out where to go from here.  A dietician and online resources (including this site) can assist you with going gluten free and as long as you do that, I think you'll likely be okay and your body will heal in time.

[NavyMom]

Hi CathiJean,

Wipe those tears my friend.  Finding out that you have celiac just gave you the cheat code on how to start feeling better!  It may feel like a loss right now, but honestly within 6 months you will start feeling better.  Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime?  You mentioned 15 years, that's about how long I have been really ill as well.  I had told every doctor I saw that I kept getting sick, infections, hair loss, joint pain, etc. and nobody would listen to me until I turned 45.  I went in for a colonoscopy and the doc says how often do you have bowel movements and I said usually between 10-15 times a day.  Suddenly I had someone actually listen to me and the testing began.  What I can tell you is use this forum, talk to peers, read everything you can about how to gluten-free your kitchen, encourage your family to participate in your journey (trust me they love you enough to make the effort), how to order food in restaurants, and how to avoid cross contamination.  Accept that you will make mistakes and allow yourself grace as you implement your new normal and have a clear understanding that going gluten free will begin healing your body in ways that you will not even begin to understand until you actually do it.  So, have faith that the nutrient deficiencies that you are probably experiencing right now can be corrected and you are on a bright path to feeling SO much better.  Think about how incredible your mom journey is about to become as you begin to feel better!!  Your kids are going to be amazed at your energy levels, ability to play and go do stuff...you are leveling up knowing that you have Celiac.  Knowing gives you power my friend, harness it and have gratitude that it was discovered...even if the docs missed it - you know now and keep moving forward.  You got this!! 

[Cathijean90]

@NavyMom Thank you so much for this message!! I needed this positivity! There’s already been a huge difference. After a year of no menstrual cycle, it has returned. I made a mistake and ate something with gluten, my rash on my hands came back, my neuropathy pain in my feet was really intensified. I have no idea how I went for so long just dealing with these things. Im still so new though being gluten free, I have so much hope that I’ll feel a lot better by next year. 

[trents]

Keep us posted as to your progress, Cathijean90.

[Parkrunner]

I probably had celiac for 40 years, late 20s to late 60s, before being diagnosed.  I was a runner and had mild intestinal symptoms most of the time.  There was a couple of months in my late 40s where I had significant diarrhea every day for 6 weeks.  Saw two PCPs about it and celiac wasn't on their radar.  In my 30s, 40s, 50s, and 60s I had insomnia, hot flashes, night sweats, muscle cramps, muscle twitching, and cardiac arrhythmia.  It took osteoporosis and fractured vertebrae before I got diagnosed.  Long term undiagnosed celiac will lead to osteoporosis.

Once you go gluten-free, symptoms should away eventually.  But you may have other food intolerances.  I happen to be lactose intolerant also.  I'm in my 70s now.  In good health.  Running again.  Take no medications/drugs.  Sleep much better.  I digest more food than I used to, so I have to reduce my caloric intake.  I seem to be hungry all the time.  My cholesterol has gone up, as has my iron levels. I don't eat much junk or ultra processed food.  My bone density in improving.  Life is good!!

[Scott Adams]

@Parkrunner Your journey with undiagnosed celiac disease highlights how easily this condition can be overlooked, especially when symptoms are mild or mistaken for other issues. It’s frustrating that it took decades—and serious complications like osteoporosis—before getting answers, but it’s inspiring to hear how much your health has improved since going gluten-free. The fact that you’re running again, sleeping better, and avoiding medications in your 70s is a testament to the power of proper diagnosis and dietary changes. It’s also a good reminder that celiac can manifest in so many ways (like your arrhythmia, muscle cramps, and night sweats) and that food intolerances, like lactose, often go hand-in-hand. Your experience gives hope to others—even after years of undiagnosed damage, healing is possible. Keep enjoying that gluten-free, active life—you’ve earned it!