Questions For Old Timers

[MHD]

Hi everyone. My name is Mark and I'm new to this forum.

I'm 23 years old, I've been celiac since I was 13 or so. I was screened because I also have diabetes and was found to have celiac diseases. I'm basically completely asymptomatic. I'm 6'8, athletic, lots of energy, and when I cheat, I feel fine. I still put effort into being gluten-free, but find myself unmotivated to be 100% for these reasons.

My question is for the people who've lived with the disease for longer periods of time and are dealing with some of the harsher consequences that my doctors are always trying to scare me with.

I'm hoping that with the anonymity to protect people, that I could get some honest firsthand accounts of the longterm effects of this disease (cancer, impotence, osteoporosis, etc). If I hear some first hand accounts of these things, I know it could help me take a gluten-free diet more seriously.

Thanks in advance,

Mark

[mushroom]

How about rheumatoid arthritis/psoriatic arthritis for starters. One year gluten free and neither have gone away. Plus I can't tolerate the disease-modifying anti-rheumatoid drugs. Try living with arthritic hands and feet, constant itching, thick scales all over your scalp, scales over 10% of the rest of your body.

Don't eat gluten!! I didn't know I had this disease until I was 67. By that time I had the other auto-immune problems for four years.

[Jestgar]

Yep, pain is your most likely long term consequence. Eventually bad enough that you'll need a wheelchair. Is that gluten food worth spending the rest of your life depending on someone to take care of you?

[1morething]

Hi Mark,

I too am a diabetic since the age of 11. I'm 37 now and was just diagnosed with Celiac. Believe me, I've been gluten free since the day I found out. I figure I don't need or want anymore auto-immune diseases. Diabetes and Celiac is enough. You're still young so probably don't see the long term effects you could get, but I'm getting up there and I'm really starting to think about it alot. Just yesterday, Oprah had on her show Mary Tylor Moore and she too is a type 1 diabetic. She's had diabetes for 40 years now and she's starting to lose her sight. That's so scary to me. When I heard that, I went to take a blood test and took insulin to bring the sugar down. Anyways, all this to say, take care of yourself. Eat well. God knows what can happen in the future.

Rachel

[codetalker]

I

[Gemini]

Hi everyone. My name is Mark and I'm new to this forum.

I'm 23 years old, I've been celiac since I was 13 or so. I was screened because I also have diabetes and was found to have celiac diseases. I'm basically completely asymptomatic. I'm 6'8, athletic, lots of energy, and when I cheat, I feel fine. I still put effort into being gluten-free, but find myself unmotivated to be 100% for these reasons.

My question is for the people who've lived with the disease for longer periods of time and are dealing with some of the harsher consequences that my doctors are always trying to scare me with.

I'm hoping that with the anonymity to protect people, that I could get some honest firsthand accounts of the longterm effects of this disease (cancer, impotence, osteoporosis, etc). If I hear some first hand accounts of these things, I know it could help me take a gluten-free diet more seriously.

Thanks in advance,

Mark

Mark.....first off, for a 23 year old, you are well spoken and your spelling is spot on! I only say this because it's rare these days!

Maybe I can answer your questions for you, from my "old timer" perspective! I hate that term but, truthfully, I am 49 years old and probably fit

that category in some ways....at least from your perspective. I was diagnosed 3 1/2 years ago, after having multiple, severe symptoms for 20 years.

Along the way, because I was still eating gluten until 3 1/2 years ago, I developed Hashimoto's thyroiditis, Sjogren's Syndrome, Reynaud's Syndrome and I have osteopenia. What has stuck out most in my mind is how many problems you can develop with Celiac when you aren't strict with the diet. It's mind boggling. I will say that since I have gone gluten-free, my thyroid is stabilized and the autoimmune reaction is now almost in the normal range, according to my blood work. It took 3 1/2 years of work to get it that way, though, but I feel confidant that I can keep it under control and not have to worry about ending up with thyroid cancer, which was a distinct possibility. When I was eating gluten and didn't realize I had celiac disease, my thyroid was so out of control, it was scary. I was constantly having to adjust my meds (probably because I wasn't absorbing much anyway) and I still felt horrible.

You are blessed that your celiac disease was discovered at such a young age and from your physical description, you sound pretty healthy. One of the hardest things to visualize and accept as fact is how bad things can get as you age when you do not follow the diet well, when you are as young as you are now. I do remember being in my early twenties and feeling invincible....youth and hormones are a wonderful thing. You are at the prime of your physical health and it is probably very hard for you to imagine yourself older and having health problems. However, the chance is very real bad things could happen if you do not lay the ground work now for a healthier you as you start to age. I found that around the age of 45 is when your body starts to change a bit and not be as responsive to healing.

Age really does make a difference but you are lucky in that you are athletic so have a head start on good health.

One important reason also to be strict with the diet is that at your height of 6'8" tall, you absolutely do not want to end up with osteopenia or osteoporosis. The larger you are, the more stress on your skeletal system. That could mean added problems that you do not want to have. It's the same as being overweight with soft bones......very bad.

I am lucky in that I recovered very well....to a point. I feel better than I have my entire life but because of my age and the length of time I went without a diagnosis, the Sjogren's can be a pain in the butt, at times. My eyes are a real problem during allergy season and a person never appreciates what they have until they lose it. Some things will improve and some things may not...it's a gamble. However, I feel my thyroid improvement and overall return to health was solely attributable to my strict adherence to the diet. It really does matter but to someone with no symptoms and youth on their side, that's going to be a hard sell.

One more thing....my older brother who is 53, is also a Type 1 diabetic. I swear he has celiac disease also, like me, because of his symptoms. Yet....his doctor's tell him he doesn't have it so my brother has put it to bed. No gluten-free diet for him. However....his health is horrible, his kidneys are almost non-functional and he will be needing a transplant within 5 years...if he lives that long. His whole life revolves around doctors and procedures....not my idea of a fun life. I would put my life on the line that he has celiac disease because he had many of the symptoms I did, except he is not skinny so I guess that's why the medical profession have failed him. That could be your future but it is entirely within your means to control that. You sound like a smart person and I hope this inspires you to be more careful with the diet. I know how hard it is to follow a diabetic/celiac disease combo diet but your health and future are worth it. I always say it could be worse....I could be in a wheelchair with a more restricted lifestyle but I'm not. I have some control over my health with my choices of food.

Good luck to you and I hope you remain in good health for many years to come!

[sbj]

One important reason also to be strict with the diet is that at your height of 6'8" tall, you absolutely do not want to end up with osteopenia or osteoporosis. The larger you are, the more stress on your skeletal system. That could mean added problems that you do not want to have. It's the same as being overweight with soft bones......very bad.

Hi Mark:

You sound smart so why are you acting dumb? That's not meant to be rude but seriously - you know you have celiac disease and yet you cheat because you're asymptomatic? C'mon now - we don't need that sort of talk around here. Do you think you're supposed to be able to 'feel' small intestine damage or the early stages of intestinal lymphoma? Do you think your doctors are lying or that the studies establishing increased morbidity in untreated celiac sufferers are false?

I was asymptomatic (or so I thought) and the docs discovered celiac while looking for something else entirely. Not util the age of 45 was I diagnosed - so I suppose that means I could have been doing damage for all those years. A standard test that is run on newly-diagnosed celiacs is a bone density test. So I had one done and they've now told me I have osteopenia and need to take vitamin D and calcium everyday. I'll have to check my density again in 3 years. I do suffer from lower back pain and sciatic nerve pain. Is it due to low bone density? Unknown - could be due to degenerative disk disease, which I also have. Believe me, I am 6' 3" and you do not want to suffer with lower back pain. I have seen it in others where it is absolutely debilitating. It could totally ruin the quality of your life at some point.

Please, do what your doctors tell you. If you have celiac disease don't cheat even if you are asymptomatic. You shouldn't base your treatment plan on anecdotal evidence.

[JNBunnie1]

There are two ways in which Celiac affects you. There is the improper autoimmune response that causes inflammation and villi damage, and a certain subset of symptoms in people. Some of these are, for example, neuropathy, ataxia, brain fog, dermatitis herpetiformis, diarrhea/constipation, and fevers. (Someone please correct me if I have any of these mixed up.) Basically this is due to your body attacking itself wherever it finds the gluten protein.

The other kinds of symptoms you get are from nutritional deficiencies from malabsorption subsequent to villi damage. These are the poeple who can't gain weight, get bone diseases, cancers, muscle atrophy, dental enamel defects, brittle nails & hair, and have problems with absorbing medications. (Again, please correct me if I've put any in the wrong spot.)

Now, this is just a generalization, not necessarily the rule in every case. The point I'm trying to make is that you may not 'get' any symptoms from your bodies improper autoimmune response to gluten. You may be simply wearing down your bones, or predisposing yourself to certain cancers. I personally watched my father die of leukemia when I was 23. It's not pleasant. If guilt works for you, imagine dying at 54 with your daughters watching while blood wells out of your lungs.

If guilt doesnt work, try illness. When I was sick, I was quite literally dying slowly. I was steadily losing weight I didn't have to lose in the first place, I had constant low grade fevers that sapped all my energy, I became so mentally fuddled I had a minor car accident. I also passed flat out a number of times, once in the shower. The worst symptom was the unremitting nausea, day and night, like I was about to throw up constantly. I HATE being nauseous. So for me, there are obvious, unacceptable, keep-me-from-working-therefore-living consequences. Trust me, you don't want to go there. And you know what? With all the help on this board, it's just not that hard.

And you're not asymptomatic, you have diabetes. Why do you think they screened you for Celiac?

Trust me, at 6'8", you don't want no osteoporosis.

[ravenwoodglass]

Hi everyone. My name is Mark and I'm new to this forum.

I'm 23 years old, I've been celiac since I was 13 or so. I was screened because I also have diabetes and was found to have celiac diseases. I'm basically completely asymptomatic. I'm 6'8, athletic, lots of energy, and when I cheat, I feel fine. I still put effort into being gluten-free, but find myself unmotivated to be 100% for these reasons.

My question is for the people who've lived with the disease for longer periods of time and are dealing with some of the harsher consequences that my doctors are always trying to scare me with.

I'm hoping that with the anonymity to protect people, that I could get some honest firsthand accounts of the longterm effects of this disease (cancer, impotence, osteoporosis, etc). If I hear some first hand accounts of these things, I know it could help me take a gluten-free diet more seriously.

Thanks in advance,

Mark

You have gotten some great responses about all I have to add is read my signature. Then go through the board and read as many posts and signatures as you have time to. That will give you a great idea of what ignoring your diagnosis will do to you.

[GFinDC]

Hi Mark,

If you do a search on

"celiac associated condition"

you will find lots of info on things that can happen.

Here is one list, there are others too.

* Anemia

* Autoimmune disorders such as rheumatoid arthritis and systemic lupus erythematosus

* Certain types of intestinal cancer

* Dermatitis herpetiformis

* Down syndrome

* Lactose intolerance

* Miscarriage or unexplained infertility

* Neurological conditions

* Osteoporosis or osteopenia

* Thyroid disease

* Type 1 diabetes

Lots of no-goodies out there that can make themselves at home if you give them a chance.

[rsm]

The best reasons may come later. I am self diagnosed, 51 years old, 1.5 years gluten free and dairy free. 25 years of horrible IBS made it worth the switch. I am now looking at a possible case of Multiple Myeloma, a cancer that works on the IgG and IgA antibodies just like celiac.

Stay away from gluten, it can affect your long term health in ways you never imagined!

[Lisa16]

I remember 23.

When you are 23 you are invincible and you feel like nothing can ever hurt you. It is a magical time.

But it does not last very long. It is only a false illusion. And you have two major ticks against you.

But you have a tremendous advantage!

You already know what you need to do to stay healthy and invincible. Hundreds of us wish we were in your shoes and had had the chance you have. I would like a do over myself! But if you can keep your blood sugar even and a gluten-free diet you might just outlive all of us! How lucky you are!

All of the things these people are telling you about are true. Read the forum. Read Dr. Green's book. You cannot escape your genes.

I was 23 years undiagnosed (I have been sick as long as you have been alive, you see) and I know with a sickening certainty that this disease is what will do me in because I was untreated for so long and so much damage was done. Do not walk that path (and certainly not in my shoes as I favor high heels.)

So Mark, play the hand you were dealt wisely so that you can play for a long, long time.

I wish you health, happiness and the strength to take care of yourself and do the right thing.

Lisa

[Welda Johnson]

Hi,

I'm always happy when someone asks a question of us oldtimers, because, somehow, it makes all that suffering seem worthwhile, being able to help someone else. I've had Celiac symptoms since age 8 and am now 64 and have been living with a very strict dietary regimen for several years. Asthma used to be how my disease would manifest, and it still would, except that I make every effort to remain gluten-free. Also, I have intolerances to all milk & dairy, egg whites and yeast.

I am diligent in eating only allowed foods, but I think I can answer your question about future ramifications by mentioning that I am now dealing with extreme bouts of rheumatoid arthritis when I eat too much chicken or turkey. The pain is excruciating, so I return to fruits only for a week and a half or so, and that helps. I want to mention the demise of depression as well, on this Celiac diet. Depression and anxiety used to really get me, but now I'm on a mellow, even keel. What a difference this diet makes.

Now let me tell you about my children and grandchildren, because they are so many of the reasons that I am happy that I have chosen to live on this diet. Thanks be to God for Enterolab.com because through them family members have been able to be tested and learn whether they have Celiac or not. My sister does have it, but doesn't follow the diet, and has dealt with thyroid cancer and colon polyps which were suspected of being cancerous, but, thankfully, proved to be benign. Since my dad died of colon cancer, that was a blessed relief. I have been able to help take care of my grandchildren, because I am basically healthy, alert and energetic. That is true, I believe, because I stick so diligently to my stringent diet. Also, I am able to help others who are now suffering with this disease the way I used to. It is a sweet blessing to be able to do that.

ADHD, migraine headaches, diabetes, thyroid cancer and asthma--they are only a few of the many symptoms said to be signs of Celiac Disease. I hope that you are vigilant about sticking with your diet as well, and I wish you well as you travel this journey of life. Welda

[ShayFL]

If I had stopped eating gluten at 23, I would not have developed Ataxia and vertigo at 26 or neuropathy and migraines at 35. I am 40 now and not yet a year gluten-free and my Ataxia is gone, migraines gone, neuropathy nearly gone and very mild vertigo. Imagine if I "cheated" now....what would happen to me over the long haul? Wheelchair? Dead......

[Fiddle-Faddle]

ONe of my very first posts when I joined was to mention that my blood test results were inconsistent (I had been gluten-free already for a month, but still my IgG was through the roof), and my reactions to occasional gluten were very mild, so I wondered if I could cheat.

Several old-timers immediately gave me their life-stories--similar to Ravenwoodglass, above.

That was enough to convince me to not cheat.

I've also read a fair amount of research indicating a link with lots of neurological conditions, including ADD, ADHD, bipolar syndrome, Alzheimer's, and depression.

In some ways, that scares me even more than the physical possibilities. Imagine losing control of your MIND. Then imagine the kind of health care you would receive.

No, thanks.

[spinsterwitch]

Mark:

I'm new here, too. I'm very symptomatic and still trying to figure out how not to get glutened on a regular basis. Even though it sucks that's something of a blessing for me because I know that most people (not everyone, of course) are motivated to make change only when present circumstances become intolerable.

I work with dialysis patients. These folks have to restrict a lot of foods, and even when they do, they can't avoid some things. Phosphorous, which is in everything, is the hardest thing for people to control. The reason for this is that there are not always immediate direct consequences that they experience. And it just doesn't help everyone to know that in a few years of high phosphorous they will start having major problems with their heart or with sores that don't heal.

Asking for stories is a really good thing to do. It sounds like you want to be motivated to change. Work on that. Read the stories of people here. Read the books or the studies that tell you about increased mortality for people with untreated Celiac. Find out some of the stories about what osteoperosis or non-Hodgkin's lymphoma is like.

But then, go further than that. Start getting your friends to help. Learn how to cook for yourself. The cookbooks that are out there are pretty good.

The bottom line is that it really is up to you to take your life and your health seriously.