• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Celiac And Time
0

Rate this topic

16 posts in this topic

Recommended Posts

How long can a person have celiac without knowing it ? I have the complete range of symptoms associated with celiac disease since 1988 and it was only a week ago that the hospital told me that I had it. Surely I should have died years ago from malnutricion !!!! I have lost a lot of weight...most of which is recent..but that could have been through worrying about what my doctor would come up with next to explain my symptoms. Even now he is still dubious about the hospitals findings. Thank God I dont live in America because all this could have cost me a fortune ! Ha. Mind you, with the price of gluten-free being what it is, it will still cost me a fortune just to stay alive. Yippee. Congratulation celiac you've just made a grown man want to throw himself off Beach Head ! Well, maybe that is a little on the high side....so it'll have to be off the door-step instead !

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


How long can a person have celiac without knowing it ? I have the complete range of symptoms associated with celiac disease since 1988 and it was only a week ago that the hospital told me that I had it. Surely I should have died years ago from malnutricion !!!! I have lost a lot of weight...most of which is recent..but that could have been through worrying about what my doctor would come up with next to explain my symptoms. Even now he is still dubious about the hospitals findings. Thank God I dont live in America because all this could have cost me a fortune ! Ha. Mind you, with the price of gluten-free being what it is, it will still cost me a fortune just to stay alive. Yippee. Congratulation celiac you've just made a grown man want to throw himself off Beach Head ! Well, maybe that is a little on the high side....so it'll have to be off the door-step instead !

Many persons, it seems, are never dx'd. and gluten free doesn't need to cost more, unless you insist on subbing all the calorie laden junk food with gluten free calorie laden junk food. whole grains other than wheat,rye and barley (oats, too) are out there.

Or just go grain free. Good luck. And I certainly don't mean to quash your vent! Need to get it out, so to begin the improvements.

Share this post


Link to post
Share on other sites

Ha-Ha Mike, yep the door step sounds a little more like it. Gluten free doesn't have to be more expensive than eating regular food. You don't need to eat all the expensive breads and cookies and baked goods at all. People can live just fine without that stuff. Getting used to eating a different diet can take some adjustment though, and may not be easy. We tend to get very used to eating certain things and then when we can't eat them we get upset and think there is nothing to eat. But there are lots of other foods around that work just fine. Whole foods like meats, veggies, nuts, fruits etc are good for you and taste great. After you eat them awhile you will probably decide you prefer them really. Probably, not guaranteeing here. :)

Corn tortillas are a good cheap option for many people as a replacement for bread. But you can also make your own gluten-free bread and baked goods. We have a whole section of the forum for recipes that is pretty busy.

But it is a big change for many people, and that is not something people tend to like (change). It does get easier after you have been doing gluten-free for awhile though. Once you are used to eating gluten-free it is is not a big chore at all. Kind of becomes a cake-walk. Get it, cake-walk? LOL :)

Here are some threads that may help you out with getting started. There are several long running threads on what people ate for breakfast, lunch dinner etc. Those might help you with ideas.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

How bad is cheating?

Share this post


Link to post
Share on other sites

How long can a person have celiac without knowing it ? I have the complete range of symptoms associated with celiac disease since 1988 and it was only a week ago that the hospital told me that I had it. Surely I should have died years ago from malnutricion !!!! I have lost a lot of weight...most of which is recent..but that could have been through worrying about what my doctor would come up with next to explain my symptoms. Even now he is still dubious about the hospitals findings. Thank God I dont live in America because all this could have cost me a fortune ! Ha. Mind you, with the price of gluten-free being what it is, it will still cost me a fortune just to stay alive. Yippee. Congratulation celiac you've just made a grown man want to throw himself off Beach Head ! Well, maybe that is a little on the high side....so it'll have to be off the door-step instead !

It's only expensive if you try to replace all your gluten-filled goodies with gluten-free ones.

You don't need a "gluten-free" label on everything you buy. Whole foods...fresh meats, veggies, fruits, all are naturally gluten free. If you are not allergic then nuts, cheeses, dairy, also gluten free.

Baking isn't that hard either, the Internet has tons of recipes you can get for free, along with ratings from real people saying if the recipes are actually good or not.

Sorry you felt the need to take a dig at America. "Free" healthcare in non-US countries is still costing people a fortune, they just don't know it because it comes out of their labors before they even see it. "Free" healthcare countries are paying a bucket-load of taxes. If citizens in those countries had to write the check to the government rather than have the government take it before workers see it, it wouldn't be so wonderful. Not meaning to be unwelcoming. I just hear this sentiment so much and keep my mouth shut, can't do it anymore.

Share this post


Link to post
Share on other sites

...

"Free" healthcare in non-US countries is still costing people a fortune, they just don't know it because it comes out of their labors before they even see it. ...

A "fortune"? OT but I can't let this sit unchallenged.

The US spends ~16% of its GDP on health care. Those other countries you refer to spend as little as half that, w/ better outcomes in every measure, from patient satisfaction to life expectancy. They spend from ~8% to ~11% of their GDPs.

What you said is demonstrably false.

Also the US is the ONLY country in the world where illness or injury can lead to bankruptcy. The figures during the HCR/"Obamacare" passage were that 64% of American personal bankruptcies were related to medical costs, despite over 70% of them still even having health insurance at the time of filing!

This is all old news so I don't have links handy. If anyone interested can't find such data themselves I could happily ..with some prodding, reluctantly find links. :)

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


You can live 47 years without knowing you are Celiac.

That's the only research I have.

And yes, I'm an American who will spend the rest of my life trying to pay for the "medical care" I had during the sickest years.

But eating doesn't cost as much as it used to.

We only "treat" once a week or so.

The rest of the time it's meat, fruit, vegetables and nuts.

Food budget went down actually.

Happy for you that you now know!

  • Upvote 1

Share this post


Link to post
Share on other sites

I am not sure that it is good that you have had symptoms since 1988 and it was just now found. But that happens here, too, I suppose. But back to your question....the celiac support group leader of my town told me that her father was diagnosed at 98. When she was diagnosed due to DH, she had him tested due to knowing he was always anemic. They didn't even change his diet because of his age. That really didn't make me feel better. I am doing gluten-free so my asymptomatic daughter won't have more diseases, cancer, and not have fertility problems. So to hear a celiac can make it to 98 eating gluten, really bothered me! Honestly, without symptoms, if I thought she could live to 98 I'd "LET THEM EAT CAKE!" But, I don't. But the thought crossed my mind! I am sure there are a zillion others who don't make it to 98. Well, good luck with your new diet. Did your country diagnose you by blood alone or biospy? Just wondering what other places do.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


A "fortune"? OT but I can't let this sit unchallenged.

The US spends ~16% of its GDP on health care. Those other countries you refer to spend as little as half that, w/ better outcomes in every measure, from patient satisfaction to life expectancy. They spend from ~8% to ~11% of their GDPs.

What you said is demonstrably false.

Also the US is the ONLY country in the world where illness or injury can lead to bankruptcy. The figures during the HCR/"Obamacare" passage were that 64% of American personal bankruptcies were related to medical costs, despite over 70% of them still even having health insurance at the time of filing!

This is all old news so I don't have links handy. If anyone interested can't find such data themselves I could happily ..with some prodding, reluctantly find links. :)

As I've said before, I'm not here to argue the merits of one system over another.

I'm just tired of the insults being thrown towards the south of the border. I'm not going to insult the beloved Canadian system, if Canadians are enamored with what they've got, they know best. I wish the Canadians would have the courtesy to do the same.

Share this post


Link to post
Share on other sites

I'll go with eatmeat & say I know from personal experience that you can go 55 , well, no, my hubs is 64, years without knowing you are celiac.

And we eat whole foods too. Our food bills went down also.

  • Upvote 1

Share this post


Link to post
Share on other sites

Unfortunately ppl can go a lifetime. That doesn't mean they, in hindsight, wouldn't have preferred being gluten-free for the last 50yrs, convinced that those yrs of being mostly functional & mostly fine may have been wonderful if gluten-free, instead of just fine, or "bearable".

A long life doesn't necessarily equal a healthy life.

My maternal grandma was dx'd at 91. Her great aunt died in the 1890's at age 50 after ~10 days in a Drs care for "abdominal distress" or somesuch. Can't say for sure if she had celiac her whole life, but it can make ya wonder about conditions that didn't even have names generations ago. It's not like celiac didn't exist back then.

Share this post


Link to post
Share on other sites


Ads by Google:


As I've said before, I'm not here to argue the merits of one system over another.

Yet you did anyway.

..

"Free" healthcare in non-US countries is still costing people a fortune, they just don't know it because it comes out of their labors before they even see it. "Free" healthcare countries are paying a bucket-load of taxes. If citizens in those countries had to write the check to the government rather than have the government take it before workers see it, it wouldn't be so wonderful. Not meaning to be unwelcoming. I just hear this sentiment so much and keep my mouth shut, can't do it anymore.

It does appear to be a comparative arguing of merits, of some sort.

...

I'm not going to insult the beloved Canadian system, if Canadians are enamored with what they've got, they know best. I wish the Canadians would have the courtesy to do the same.

"Beloved", "enamored" & a passive-aggressive, obviously insincere "they know best"? That's "courtesy" now?

Above you basically called them ignorant dolts blind to the tyranny of no co-pay checkups or of not having to worry that just a little bad luck at the wrong time could produce medical bills higher than their rest-of-lifetime income.

Sorry to everyone else for OT tangent. :)

Share this post


Link to post
Share on other sites

Since they say over 90% of celiacs go undiagnosed, it seems it is very likely that most will die without a diagnosis. That's a whole life time of miserable symptoms and possibly other autoimmune disease for a lot of people. Millions in fact. The people on this board who know about their celiac are the unusual ones. Most celiacs don't know they have it or why they are sick. Many probably don't even know what celiac is. Living your whole life with celiac and not knowing you have it is the norm. Unfortunately.

  • Upvote 2

Share this post


Link to post
Share on other sites

I went 38 years not knowing. I think my mother has gone 68 years but she hasn't tested yet... We both have symptoms but no extreme or critical ones.

Perhaps Americans spend more on health care because their population is slightly less healthy(not judging); obesity rates are at ~36% and that will cause a lot of problems.... Then again, our wait times for procedures is awfully long, and I know many people who can't find a family doctor because at at full capacity. I do have a family doctor and still end up going to walk in clinics half the time because I can't get in to see our doctor in a timely manner.

OPEC compares:

http://www.oecd.org/dataoecd/46/33/38979719.pdf

... I think both systems could use an overhaul. :unsure::blink:

Share this post


Link to post
Share on other sites

How long can a person have celiac without knowing it ? I have the complete range of symptoms associated with celiac disease since 1988 and it was only a week ago that the hospital told me that I had it.

I wonder now if my grandmother had it. She died at age 74 of multiple myeloma, and studies are starting to show that MM might be an end-stage of celiac.

I think my mom also might have it, she is 85. She failed (tested negative) on all celiac testing earlier this year but she was also deficient in both IgA and IgG globulins. Her testing was useless, but the doc pronounced her "not celiac". However, she has so many classic signs (though not intestinal). Chronic canker sores, seizure activity, panic, low levels of Vit. D and very low protein, elevated liver enzymes, edema, cataract (the ophthalmologist says not simple age-related cataracts), idiopathic hypoparathyroid, and more. She also has monoclonal gammopathy, a pre-cursor to multiple myeloma.

Many of her symptoms are beginning to resolve on a gluten free diet.

Sorry to everyone else for OT tangent. :)

I can agree to that.

Share this post


Link to post
Share on other sites
Sorry you felt the need to take a dig at America. "Free" healthcare in non-US countries is still costing people a fortune, they just don't know it because it comes out of their labors before they even see it. "Free" healthcare countries are paying a bucket-load of taxes. If citizens in those countries had to write the check to the government rather than have the government take it before workers see it, it wouldn't be so wonderful. Not meaning to be unwelcoming. I just hear this sentiment so much and keep my mouth shut, can't do it anymore.

Good on ya for pointing this out! ;) If the health care system is so expensive in America, why do we get citizens of every other country flooding here to take advantage of our medical system? Medicine is not cheap, by any means, and it's not supposed to be. You get what you pay for. And it certainly isn't free in other countries, either, as you pointed out. There is no such thing as "free" anything!

Share this post


Link to post
Share on other sites


Ads by Google:


Thank God I dont live in America because all this could have cost me a fortune ! Ha. Mind you, with the price of gluten-free being what it is, it will still cost me a fortune just to stay alive.

I live in the US and in 3 years, we spent over $30,000 out- of- pocket searching for an answer to my devastating health problems.

I tried everything, went everywhere and I even did the "alternative and functional med" route. To no avail. And I have health insurance.

I just did not have a savvy enough doctor --in the dozens of specialists I saw--who could see I was a walking celiac. <_<

You have the wrong idea about a "gluten free diet" if you think it will cost you a fortune.

Veggies, fruits, meats, fish, nuts, eggs, milk...these food prices are the same, whether you are a celiac or not.

Do not overdo the "packaged gluten-free crap" that's out there and your grocery bill will not go up. In fact, it may go down.

In answer to your question---a person can have celiac nearly her entire life and only realize it after DX and see where it all went wrong and caused dozens of symptoms and consequences. But it wasn't until I was slowly dying and unable to walk, sit or stand without agonizing pain, losing 90 lbs., muscle mass and brain function and my hair... that it really got my attention.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,112
    • Total Posts
      939,734
  • Member Statistics

    • Total Members
      66,098
    • Most Online
      3,093

    Newest Member
    abbellalove@gmail.com
    Joined
  • Popular Now

  • Topics

  • Posts

    • His high test results have me worried that it definitely is coeliac. Hoping against hope it is a false positive caused by his diabetes. Poor kid. He was handling his diabetes really well, hadn't missed a beat and just getting on with it. The coeliac screen has really thrown him though and he's upset and angry that he might be both. I guess we will deal with it and I know there's worse things, it just seems really unfair. Oh well......
    • With his bloods coming back that high there is no chance he is not celiac.  The gene test is not diagnostic. There are rare cases of celiacs that don't have one of the two most common genes.  You may want to go ahead and get the biopsy done if you are choosing to do one. Some doctors will diagnose based on relief of symptoms and decrease in antibodies after the diet has been strictly followed.  Do keep in mind that intestinal damage can be patchy and be missed. He will need the diet even if the biopsy is negative.  Do keep him on gluten until the biopsy is done then take him gluten free. You don't have to wait on the results. Good to hear that you are planning on testing your daughter and don't forget testing on yourself and their father if it hasn't already been done.
    • Hi,  My 24 year old was diagnosed with Celiac Disease just about 4 years ago. She began having a hard time swallowing food and experiencing lots of acid so she had an Endoscopy last year and was positive for EoE. She had another allergy test done just after and found out she is also allergic to yeast. So we add that to her list of things she can’t eat along with shrimp and sesame seeds. We found a great allergist since she has asthma and horrible sinus allergies who was able to work with her GI doctor. Together they have her on a few different medications that seem to be really helping. She still has some dairy, like cheese on her tacos, but not much and stays away from yeast almost entirely. So being a Celiac definitely intertwines with other health issues. Keeping a food diary will be a big help in pin pointing what triggers your EoE.  Once you get a final diagnosis there are wonderful people on this forum to help guide you through this wonderful journey of living with Celiac Disease.   Good luck ☺️
    • Hello and welcome You've found a good site for advice and support.  Google suggests there is a link between EoE and Celiac, but at the moment that seems to be as much as anyone knows: https://www.emaxhealth.com/12410/celiac-disease-increases-risk-eosinophilic-esophagitis https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-96 Although it's not true that having one means you have the other.  You may want to read this thread for the experiences and ideas of others here who have experienced Burning Mouth Syndrome: https://www.celiac.com/gluten-free/topic/106704-burning-sensation-in-mouth/ There were lots more gluten and BMS articles, so if a direct link hasn't been made, there's food for thought there along with some interesting thoughts on B and Iron deficiencies and possible additional food intolerances. No please don't. If the biopsy is inconclusive they may want a second one or further blood tests (you don't mention if they already did these?). Once you eliminate gluten from your diet these tests are inaccurate. That's not to say you shouldn't trial the diet, just make sure with your doctor you only do so once tests are complete. I'd add that even if you test negative you have nothing to lose from trialling a gluten free diet and as someone who did test negative I highly recommend you do, but only once testing is done! In the meantime, start a food diary. Log what you eat, when, and how you feel. Just short notes but make it a habit and try to capture everything you put in your mouth.  Build a record that you can use to find patterns. Maybe a trigger for the BMS will become apparent over time. Best of luck    
    • Funny you should ask about Lectins because I am currently recovering from a recent run in with some pinto beans.  After reading soaking longer than overnight helps break down those Lectins, I soaked them for twenty-four hours  Then I cooked the spots off them!  And still, they have wreaked havoc in my tummy.  Ugh!   So while recuperating, I did some research.  While cooking can break down some of the lectins, the only way to get rid of them completely is to cook them in a pressure cooker.  I was surprised to find that Lectins are histamine releasers!  Lectins make Mast cells release all their histamine.  Aha!   The red wine and balsamic vinegars and the bottled lemon juice are all high in Sulfites.  Sulfites are histamine releasers, too.  Apple cider vinegar is lower in Sulfites.   Lectins stimulate the autoimmune system: https://www.ncbi.nlm.nih.gov/pubmed/25599185 More on Lectins and autoimmune diseases: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1115436/ And for Enis' affinity for chocolate nibs...(as well as my own)... Chocolate is a source of copper.  Copper deficiency causes neuropathy.   My neuropathy has gotten worse recently and my chocolate cravings have increased.  Hmmmm...... https://www.ncbi.nlm.nih.gov/pubmed/19901719 More info on copper http://lpi.oregonstate.edu/mic/minerals/copper So...I'm wondering if I've neglected taking copper along with my calcium and magnesium.  I'm starting supplementing this week. Is copper in any of your protein powders, Enis?   I hope this helps.
  • Upcoming Events