Diagnosed 5 Years Ago, No Symptoms. I Don't Care Anymore.

[elliott34]

Ok so here's my story.

 

• 24 year old male
• Diagnosed 6 years ago (full biopsy). Basically my bloodtest post-Mono was still weird after the mono went away so that prompted all these doctor visits and so on and so forth.
• I am hypothyroid. I am allergic to cats, dogs, and springtime.
• I have no symptoms from eating gluten and never had any, and nothing has ever changed or improved. I feel fine eating all sorts of foods. Even after slipping a few times during college (and I mean once or twice a year max), I never felt a thing.
• I could survive on bagels and ryebread and cookies and pizza and pasta for a week and feel nothing but my waistline expanding.
• Obviously the social impact of not being able to drink beer or pizza has made life pretty miserable for me over the past 6 years. Not because of the enjoyment of the food as much as the inconvenience and not being able to do things other people do like go to beer festivals)
• I am grateful that I don't have a life threatening disease and am in good health, and for that I shouldn't complain.

 

So for my situation, can I see someone about rediagnosing my celiac? What's the worst that can happen if I stop following the diet? Do I die earlier? To be honest taking 10 years off my life is definitely worth living a normal life.

 

 

Again. I have never ever never had any symptoms in my life.

 

What should I do in this situation? Ever since the biopsy and phone call from the doctor I've done nothing except confirm that those elevated blood markers returned to normal (which who knows why they came down, no scientific method was really used here)

 

 

Thanks for your help

 

Marc

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[CajunChic]

This lifestyle is no fun, but gives us a better life! You have celiac, which makes it lifelong. I think it would be more severe than "just 10 years" off of your life. Exposing yourself to gluten could set off more AI diseases, osteoporosis, vitamin deficiencies, neurological defects, and CANCER! I think that would be more painful to live with. It wouldn't be simply dying early...Embrace who you are, what you live with, and praise God it can be contained with only a diet. You can do it! I believe we're all given things in life to make us better and stronger. Keep fighting this disease, many other celiacs are inconvenienced and are severely suffering through it. Another thing to be grateful for : ) I'm sorry you're feeling discouraged, but you can find peace with celiac disease.

[nvsmom]

I mostly felt fine in my early 20's too. I looked good, ran marathons, had a great social life... but after eating gluten my whole life my poor health caught up to me in my 30's . I hurt, I'm tired and I am not looking that hot any more.  If you want to start eating gluten again, I strongly suggest that you get retested so that you don't damage yourself with years of gluten.

 

For accurate tests, you will need to consume the equivalent of 1-2 slices of bread per day for about 3 months.  If you have the biopsy done, the gluten challenge is shortened to 2-4 weeks.  Get as many tests as possible done as not all tests show up positive in all celiacs. The tests are tTG IgA and IgG, DGP IgA and IgG, EMA IgA, and possibly the old AGA IgA and IgG.

 

Personally though, I think you are just in denial - a positive biopsy is pretty specific to celiac disease. Was there any other health issue that the doctors mentioned that could have caused the destruction of your small intestine? A positive biopsy and positive blood tests are about as certain as one can get though.

 

I know it is inconvenient not to drink beer with the guys but think about how functional you want to be in 5 or 10 more years. Being forced to eat gluten-free is not fair but it beats the alternative.

 

Best wishes.

[cyclinglady]

I was just anemic and had Hashimoto's thyroiditis . No tummy issues. GI doc caught it during a routine colonoscopy pre-op visit (yep, I am old enough to qualify for one of those). Three months later, I had two vertebrae fractures. I had to stop riding my bike! I had to worry about falling while running! Less than a year after my celiac disease dx I was diagnosed with diabetes (type not yet known). Good news is that I am getting healthy again.

Let's say that I chose to ignore the diabetes. I could say, "So, I will live 10 years less." But at what quality? Missing a foot, blind.....? Eat gluten and fracture a hip that might never heal? Live with crippling neuropathy? Get lupus, MS, RA, etc.....

In a few years the old pizza and beer phase will be over in your life. Until then find something positive to do that will help others and really help you!

Take care!

[Adalaide]

I used to be a little clumsy from time to time. No biggie, but the most annoying thing was I would occasionally slip when I was stepping off the curb in front of the house and twist my ankle. This happened a few times a year. Like I said, I was never concerned, I always just iced and elevated it and went on with my life. I know now that the clumsiness was gluten ataxia, a side effect of undiagnosed celiac, but that isn't the real problem I still suffer from. The real problem was what my undiagnosed celiac left me susceptible to. Anyone with an AI disease, such as untreated celiac, is at much higher risk than others of developing a condition called CRPS which is accepted in the medical community as the most painful chronic pain condition to exist. Because I was undiagnosed, and therefor not eating gluten free, a sprained ankle has turned into excruciating pain, 24 hours a day, 7 days a week, that will last for the rest of my life. The best I can ever hope for is to have more good days where it doesn't get so bad that pain and sleeping pills will keep me from at least 6 hours of uninterrupted sleep, which is the only relief I get. I also have lots of other "fun" side effects from being undiagnosed for over 30 years, Raynaud's (started when I was 12), osteoarthritis (diagnosed at 14), iron deficiency anemia for which I required infusions, I once was actually diagnosed with scurvy. For real.

 

This and what other people have mentioned isn't even touching on things like your increased risk of cancer. Sure, maybe you don't have any obvious symptoms now... but if you throw your health under the bus for a quick and easy lifestyle change it may not be long until you find yourself very, very sorry.

 

I'd also like to point out, that there is nothing about my life that isn't "normal." We each get to decide what is normal, and it sounds like maybe part of your problem is accepting  your diagnosis. Yes, you've done the actual steps involved in taking care of your body but it doesn't sound like you made any progress in 6 years in taking care of mentally or emotionally accepting that this is your reality. Your life. Your normal. This is forever, and you need to accept that to be healthy (not to simply be alive but to be able to enjoy being alive) you have to remain gluten free or there will eventually be dire consequences.

[GottaSki]

Hi Marc.

There are many of us that had our health, careers and for some their families destroyed by undiagnosed celiac disease. Celiac may be silent for you right now, but return to regular gluten consumption and you will not simply go about your life and die a few years prematurely....my minor symptoms turn moderated in my late 20s and severe during my 30s and completely ruined my career and any remaining social life in my 40s.

I have met many gentlemen and ladies that were diagnosed in their forties like I was and none of them have had an easy path.

I do know a little about what you are going through...my sons were 13 and 15 when I and subsequently they were diagnosed. Each has gone through periods of asking the same question you pose and have cheated (not for over three years now because they did have obvious symptoms when they did so).

We are simply you....in 20 years after a lot of needless pain and suffering.

We cannot stop you from eating gluten...only caution you for what likely lies ahead.

Are there particular foods you miss...my pals and I can replicate anything...just ask.

Or is it the social aspect....this is the hardest for my 20 year old...I can tell you he has a much better attitude lately and think it is because he is now comfortable in his need to live gluten-free.

If you go back to eating gluten...and don't end up with any symptoms....do get tested again after three months.

Hang in there

[BlessedMommy]

I started eating gluten free over 4 years ago, a couple of months before I turned 28. Though I've had a number of health issues in the past, overall I feel fine now. Actually I rarely go to doctors, period. No anemia, osteoperosis, diabetes, lupus, arthritis, etc. that I know of. I also don't have violent symptoms if I accidentally get some gluten. Maybe a headache or a skin rash at the most. 

 

Many people in this forum went undiagnosed for a number of years and developed debilitating permanent health problems. Those of us who were diagnosed at a younger age have the benefit of avoiding many of the pitfalls that years of undiagnosed celiac brings. 

 

It's not just a matter of dying earlier, it's also your quality of life in your later years. Staying gluten free could mean the difference between being disabled and in pain, versus being able to get out and be active and do the things that you want to do.

[treesahope]

You say a shorter life is worth 'living' now.  What if you fall in love and want more time with them?  Symptoms of celiac are helpful, if you feel bad you won't eat it, in your case, you don't have symptoms, it must be more difficult.  I would like to live to see my future grandchildren grow up so I don't want any complicating cancers or other things, due to eating gluten, to interrupt my time with loved ones.  Think of those who love you, and don't eat gluten.   Godspeed.  PS there are GFbeers

[Nikki2777]

One thing I've learned from my Celiac is how to make my bones stronger:  As in, I grew a backbone.  You can still go to beerfests, but say no to the beer and bring along some wine in a flask or one of those skin things.  While I admit I'm not in college anymore, and subject to all that that means, a large part of my social and work worlds revolve around dinner out with other people at restaurants and at homes.  At first it was hard to say 'no thanks', but anyone that matters shouldn't be tempting you to do something that could damage your health.  I do see why taking a chance is tempting, but the repercussions later on are really not worth it.

[w8in4dave]

There are other things you can drink besides beer, and other choices besides Pizza. Your saying ten years of your life is worth giving up for pizza and beer? Ohh my goodness I have already lost more than 10 years of my life not knowing that I had Celiac. I have had 22 surgeries and alot of them were from broken bones. Hello Celiac! You couldn't pay me to eat another slice of Gluten Pizza and have a beer. Heck even the gluten-free beer makes my face turn bright red so I won't try another. I think thats a very selfish thing to do! Not care about your health for pizza? Pizza isn't good for you even if your healthy. Do yourself a big favor. Give up the pizza and beer and live a healthy life style! 

[Nikki2777]

Also, remember that you may have children one day, and a list of things you want to do with them.  Time becomes a lot more important later on.

[1desperateladysaved]

I had 30 years of symptoms, (starting after mono, by the way).  Also, beginning with painless bloating.  I just have to say the quality of life had disappeared for me.  I couldn't stand up without feeling like I would crash.  Somehow I dragged through it, but I hated my life.  I would do practically anything to get better including not eating cake and ice cream.  I gave up my favorite popcorn too. 

 

I am happy, because I feel better.  The cost isn't so bad in order to get better.  My kids marvel what I can give up, but I tell them that this is nothing compared to what I went through.  You wouldn't mind giving up quite a lot of money for a highly desired boat, car, or whatever.  Because it is worth it to you.  How much is it worth to feel good, have energy, and think clearly?  After feeling the sickness in nearly full force, the cost of losing a few foods is not much!

 

I am truly sorry that you don't feel the Pain.  Pain is our friend.  It tells us what not to do.

 

Dee

[FruitEnthusiast]

I think one reason so many of us end up so sick in our forties, like myself, is probably because I didn't have any symptoms until a couple years before diagnosis. I'm sick enough now that I must have had damage long before I had any symptoms. Once the symptoms finally kick in, it will hit you like a train wreck. I have also lost my career and social life completely... for two years now since going completely gluten-free. Gluten is only the beginning. I've had to give up all grains, dairy, desserts, any processed foods at all. I still don't know if I will ever get back to living a normal life again. Don't let that happen to you.

[abqmalenurse]

Through my 20's and early 30's, I traveled and was proud of the fact that I have drank the beer in 5 countries, at least 13 states on two continents. Had a blast. I am ex military, used to lift 600 lb engines. Then I wound up at age 40 with fatigue, body and joint aches, gastric problems that never ended, random nervous issues and emotional disruptions (mostly depression and anxiety). Flash forward. Been gluten free for at least 8 years. Most of the problems have seriously improved. However, I have permanent intestinal damage and now diagnosed with ulcerative colitis, as well. Been through anemia, Candidiasis, protein malabsorption, weight loss. (When I stopped gluten, I lost over 20 lbs in one month. It was all inflammation I had been carrying around.) However, shoulder pain improved, allergies seriously decreased, knee pain is gone, so is GERD (which had been all day every day).

So, which do you want? You're referring to your quality of life. Do you find it high quality to have joint aches, fatigue, nerve damage, gastric distress, chronic inflammation, mood disorders..?

By all means, if you question the diagnosis, get a second opinion. But don't live in denial and do damage to yourself. This condition is definitely progressive and gets worse over time. I wish more had been known and I had been diagnosed 20 years earlier. Especially as prevalent as information is about Celiac today, believe me that your real friends will understand and accept your condition.

[NatureChick]

Speaking from the point of view of someone who was already in their forties when they figured out that it was gluten that was the problem, I can only advise you to stick with a gluten-free diet to avoid the hell that I went through.

Though I didn't have any noticeable symptoms in my 20s (aside from having a fantastic figure despite eating anything I wanted), in hindsight, that decade was pretty awful when it came to damage done to my body. Thyroid was my only noticeable problem back then too - if you didn't count the lack of ability to gain weight.

But my thirties were pretty awful. Lots of pain. And now that I'm gluten-free, every time I get some new health problem, I have to wonder if it is related to the damage done by gluten. My guess is yes because I have some really strange health problems and most fall into the category of autoimmune reactions.

No doubt, I would have felt deprived if I had to be gluten-free in my 20s when everyone you know seems to be drinking beer all of the time. But you can still hang with them most of the time - just have to be smart about what kind of drinks you order. And you could always develop some interests or hobbies on your own that you get to do when they are off at beer festivals or the like. If it is something you love, you won't feel left out. Or you could purposely move into a party house so that people come to you ... but you have your own gluten-free beer stash.

Have you considered trying to date someone who is also gluten-free? It would certainly make dating easier and you'd have someone to hang with who has similar social limitations. I've been seeing ads for gluten-free dating pretty regularly on this site.

[beth01]

I wish I could go back to your age and find out I was a celiac.  I am 37 years old, just diagnosed on April 6th after 20+ years of symptoms and as far as we can figure being born a celiac.  My daughter was also just diagnosed, she is 11.  She is having a hard time right now because gluten doesn't cause a lot of stomach issues for her, she has fainting issues and small bouts of constipation.  I stress to her daily about keeping to the strict diet so she doesn't end up like me when she is my age.  I have had migraines, joint and muscle pain, diverticulosis, mesenteric adentitis, multiple miscarriages, two very hard pregnancies, Grave's disease, osteoarthritis in my spine ( lost an inch already), multiple broken bones( one of them three times), both my appendix and my gallbladder out, a mediastinal mass surrounding my aorta, severe vitamin deficiencies, anemia, low potassium, severe weight gain and then an even more severe weight loss ( 160 lbs to date, I weigh less than the amount of weight I have lost). I also have other food problems, I am down to about 5 foods that don't bother me.

If you don't believe the diagnosis, do the gluten challenge and then be retested. Or, you can do what you want now and pay for it later in life. If I could take back all the beer and gluten from my twenty's, I would, it would give me my health back.  It's your choice.

[GottaSki]

I wish I could go back to your age and find out I was a celiac.  I am 37 years old, just diagnosed on April 6th after 20+ years of symptoms and as far as we can figure being born a celiac.  My daughter was also just diagnosed, she is 11.  She is having a hard time right now because gluten doesn't cause a lot of stomach issues for her, she has fainting issues and small bouts of constipation.  I stress to her daily about keeping to the strict diet so she doesn't end up like me when she is my age.  I have had migraines, joint and muscle pain, diverticulosis, mesenteric adentitis, multiple miscarriages, two very hard pregnancies, Grave's disease, osteoarthritis in my spine ( lost an inch already), multiple broken bones( one of them three times), both my appendix and my gallbladder out, a mediastinal mass surrounding my aorta, severe vitamin deficiencies, anemia, low potassium, severe weight gain and then an even more severe weight loss ( 160 lbs to date, I weigh less than the amount of weight I have lost). I also have other food problems, I am down to about 5 foods that don't bother me.

If you don't believe the diagnosis, do the gluten challenge and then be retested. Or, you can do what you want now and pay for it later in life. If I could take back all the beer and gluten from my twenty's, I would, it would give me my health back.  It's your choice.

 

Welcome Beth

 

You will improve with time!

 

Let us know if you have any questions.

[Nikki2777]

I know we're all piling on - but really, I'm sort of grateful that while my diagnosis came before things got really serious, they came late enough that I was just starting to see the problems emerge.   Enough so that I realize the potential impact if I cheat.  Even a little.  My body was JUST starting to fall apart, and it was enough for me to know I couldn't mess around with this.  I can totally understand how this must be frustrating if there are no symptoms and sure, you can get re-tested, but we're trying to help when we say it's not worth it to cheat.

[user001]

After being misdiagnosed since I was a teen and being told that being tired, headachy and having some stomach issues was 'normal' , I am just coming up on my 30th birthday and started to suffer the effects of this illness the past few years. I have chronic arthritis in my back, which is permanent. If you have been diagnosed celiac, silent or not, I would not suggest giving into your need for pizza and beer! I dont think celiac is a disease you grow out of, I would really suggest talking to your doctor before making the decision to start eating gluten again.