Have Celiac - Eat Gluten And Feel Fine! Anyone Else?

[Nancy H]

I was diagnosed with celiac in Sept 08. Complained to my doctor during my annual physical about occasional bloating and she ordered a blood test. (I am 46 year old woman and who doesn't feel bloated sometimes??) My IGA was 15. Had a small bowel biopsy which showed moderate (partial) villous atrophy and intraepithelial lymphoctosis. I was told to follow a gluten-free diet and I really tried. I have had NO other celiac disease symptoms at all. I was gluten-free for about a month plus (minus Communion at church) and felt fine. I went back to Gluten filled (yummy) and felt fine too. I feel the exact same (meaning very good) regardless of how much gluten I eat. This makes sticking to the diet impossible for me. I am slender and very physically active. No family members have diagnosed celiac disease.

I am aware of the celiac disease cancer link but it does not seem to be a very strong one. Again, my only symptom was occasional bloating (hello menopause) so I have never gone through what so many other people have endured for years while waiting for a diagnosis. Is anyone else like this? I have seen 2 GI docs and both said "you must stay on the gluten-free diet " (although one said I could cheat once every 2 months and be fine). I just seem to cheat all the time and feel fine. Any advice?

[ravenwoodglass]

You are playing with fire. Eventually it will burn you. Cancer isn't the only risk of noncompliance. You also run the risk of developing many autoimmune diseases, neurological problems such as depression, anxiety, you are risking your thyroid, gallbladder, brain even your joints and muscles.

The choice is yours but if I was you I would listen to your doctors.

[nutralady2001]

As a result of undiagnosed Coeliac Disease I have

Hashimoto's Disease ( thyroid disease)

arthritis

scoliosis

osteoporosis

chronic pain

tooth decay

as well as a myriad of other problems including Vitamin B12 and Vitamin D deficiency

I honestly can't believe you aren't taking this seriously

[Takala]

Not being able to stick to the diet is a symptom of gluten intolerance.

[Liveenjoylife]

Even if you say you feel fine, every ones symptoms are different. Yes you are hurting your intestines even if you don't feel it. Why would you do that to your self? For what a few seconds of taste from food that you shouldn't be eating; for a lifetime of damage that will take months maybe even longer to heal because of carelessness? Not trying to be rude, but that is just not smart.

[GFinDC]

Sounds like you are one of the silent celiac cases.

Latent Celiac Link on Celiac.com

If you elevated antibodies that doesn't sound good does it? It really seems like a big risk to take, considering you have a choice now but later on it may be too late to prevent another autoimmune disease from affecting you. There is a long list of associated autoimmune diseases that can affect people with celiacs. You can find them by googling "celiac associated condition" or "celiac related condition".

I am not a doctor, so take some time and research on your own is my advice. The way I understand it though, one thing to consider is how the moderate villi damage may be affecting you, even without obvious symptoms. You may not be able to absorb all the vitamins and minerals you need for your body to maintain itself well. Did your doctors test your vitamin D, ferritin, calcium and thyroid levels? The damage to your villi might be moderate now, but it didn't get damaged for no reason, and there is no reason to think the damage won't continue or accelerate if you don't take action. The antibodies in your blood show your body is reacting to the gluten. Antibodies attack invaders, and they can sometimes damage the villi trying to get at the nasty tricksy gliaden proteins.

From what I've read, the vitamins that don't get absorbed well with damaged villi are ones carried in oils (fat soluble), but water soluble vitamins are absorbed ok. So A, D, E, K are possible problems. You probably won't get scurvy like the sailors did from lack of vitamin C since it is water soluble. Yo ho ho! Some sailors got scurvy on trips that lasted 56 days according to this Wiki article.

Open Original Shared Link

Wiki says:

The first major long distance expedition that experienced virtually no scurvy was that of Alessandro Malaspina, 1789-1794. Malaspina's medical officer, Pedro Gonz

[elye]

Hi, Nancy, and welcome!

I was asymptomatic when I was diagnosed four years ago. When I was given the diagnosis, I was certain that they had confused my blood and biopsy results with someone else's!

After being on the gluten-free diet for about six months, I began to experience all of the classic symptoms when I accidentally ingested gluten: cramps, bloating, diarrhea. This is quite a common occurrence when someone's small intestine has time to heal - -the damaging effects of the offending protein are finally felt!

I suspect that this would happen to you, if you remained strictly gluten-free for six months. It really is something you should do, as many have already said. The diet is daunting at first, but gets MUCH easier after a couple of weeks, and before you know it, it is second nature......really!

This is a terrific place for dietary information. Ask a lot of questions! We're here to help!

[Hallie Davis]

Hi, Nancy, and welcome!

I was asymptomatic when I was diagnosed four years ago. When I was given the diagnosis, I was certain that they had confused my blood and biopsy results with someone else's!

After being on the gluten-free diet for about six months, I began to experience all of the classic symptoms when I accidentally ingested gluten: cramps, bloating, diarrhea. This is quite a common occurrence when someone's small intestine has time to heal - -the damaging effects of the offending protein are finally felt!

I suspect that this would happen to you, if you remained strictly gluten-free for six months. It really is something you should do, as many have already said. The diet is daunting at first, but gets MUCH easier after a couple of weeks, and before you know it, it is second nature......really!

This is a terrific place for dietary information. Ask a lot of questions! We're here to help!

As an untreated celiac your risk of death is twice that of the normal population. See

https://www.celiac.com/articles/148/1/Celia...ated/Page1.html

[ang1e0251]

Maybe you could visit a nursing home and see all the illnesses that can befall us late in life. You are going to be in that age group before you know it. Many of those maladies you see in the nursing home can be attributed to untreated celiac disease in those of us with the disease. You can pity those you see and fear you might be there soon but if you were given a choice today whether to contract those conditions or not, would you choose a future like their's? Guess what? You have been given the choice today! You can choose to significantly lower your chances of neurological diseases, bone problems, dibilitating arthritis and other serious illnesses mearly by tweaking your diet! Choose healthy life, choose gluten-free!

[weluvgators]

I was asymptomatic when I embarked on the gluten free diet. I started my diet changes in an effort to help my obviously gluten intolerant child who was nursing. The first year that I was trying to be gluten free, I was able to cheat regularly without obvious personal issues in my health. Then I quit cheating once/week and had minor cheats on very rare occasion with no ill effects for myself. When we got stool testing done on my DD, and she was showing high antibody loads even on our gluten free diet . . . well, I buckled down in an effort to reduce her gluten cross contamination exposure. Well, sometimes I wonder why I ever ventured there!!

It was ONLY THEN, on an insanely gluten free diet that eliminated ALL sources of gluten cross contamination (this means that we quit eating out and introduced stringent protocols for handwashing whenever we were in a shared public space - my kids are really young), well suddenly I realized that I could recognize when we got into trace gluten. It has been eye opening. It was only then that I realized my daughter's gluten intolerance was simply a beacon of light for me to get the help that *I* needed.

So, while I say that I was asymptomatic, I must clarify that a wonderfully insightful OB/GYN that was my care provider for my first pregnancy was sharp enough to recognize my enlarged thyroid and sent me to an endocrinologist who did review it. They did ultrasounds, and said it was fine. Enlarged thyroid of idiopathic origin. Keep an eye on it . . . yet, it was invaluable information to me when years later I realized that we were dealing with a serious gluten intolerance issue in our family. There are so many implications to this condition, malnutrition being a primary cause of many devastating consequences. But, more than that, take a look at IgA Nephropathy. Those IgA loads on your body are not good! Go to a celiac / gluten intolerance support group meeting and meet the people that were diagnosed decades ago when living a truly gluten free life was nearly impossible! Go see the health consequences of continued gluten exposure in those who deal with gluten intolerance.

Being able to live gluten free today is a blessing! I hope that you can come to recognize that before it does further damage to your precious body!! Cravings and withdrawal are a part of the gluten addiction that can be so hard to overcome for many. You need support, and I hope that you can find what you need soon.

[Nancy H]

I was diagnosed with celiac in Sept 08. Complained to my doctor during my annual physical about occasional bloating and she ordered a blood test. (I am 46 year old woman and who doesn't feel bloated sometimes??) My IGA was 15. Had a small bowel biopsy which showed moderate (partial) villous atrophy and intraepithelial lymphoctosis. I was told to follow a gluten-free diet and I really tried. I have had NO other celiac disease symptoms at all. I was gluten-free for about a month plus (minus Communion at church) and felt fine. I went back to Gluten filled (yummy) and felt fine too. I feel the exact same (meaning very good) regardless of how much gluten I eat. This makes sticking to the diet impossible for me. I am slender and very physically active. No family members have diagnosed celiac disease.

I am aware of the celiac disease cancer link but it does not seem to be a very strong one. Again, my only symptom was occasional bloating (hello menopause) so I have never gone through what so many other people have endured for years while waiting for a diagnosis. Is anyone else like this? I have seen 2 GI docs and both said "you must stay on the gluten-free diet " (although one said I could cheat once every 2 months and be fine). I just seem to cheat all the time and feel fine. Any advice?

[Nancy H]

I was diagnosed with celiac in Sept 08. Complained to my doctor during my annual physical about occasional bloating and she ordered a blood test. (I am 46 year old woman and who doesn't feel bloated sometimes??) My IGA was 15. Had a small bowel biopsy which showed moderate (partial) villous atrophy and intraepithelial lymphoctosis. I was told to follow a gluten-free diet and I really tried. I have had NO other celiac disease symptoms at all. I was gluten-free for about a month plus (minus Communion at church) and felt fine. I went back to Gluten filled (yummy) and felt fine too. I feel the exact same (meaning very good) regardless of how much gluten I eat. This makes sticking to the diet impossible for me. I am slender and very physically active. No family members have diagnosed celiac disease.

I am aware of the celiac disease cancer link but it does not seem to be a very strong one. Again, my only symptom was occasional bloating (hello menopause) so I have never gone through what so many other people have endured for years while waiting for a diagnosis. Is anyone else like this? I have seen 2 GI docs and both said "you must stay on the gluten-free diet " (although one said I could cheat once every 2 months and be fine). I just seem to cheat all the time and feel fine. Any advice?

[Nancy H]

Thank you to everyone who responded to my question. There is so much helpful info on this site and interested people who are willing to share their knowledge and experience. I wonder if my celiac was caught very early and I never had a chance to get sick. I am not anemic at all, had a bone scan a year ago and my bones are all fine. I just have no symptoms that everyone else seems to have. My sympathy for the struggles and years so many of you have gone through.

That being said, I really think if you put 100 healthy people in a room and took a blood test to find their IgA and then they had a biopsy ..... well....I really think 70 out of those 100 folks would then be diagnosed as Celiac and be instructed to go on a gluten-free diet. I put myself in with this crew.

I had a blood test yesterday to check my transglutamine and immunogloblin A. In the 5 or so days leading up to the test I was gluten reduced by did not go completely gluten-free. I am interested in the results.

[mushroom]

hat being said, I really think if you put 100 healthy people in a room and took a blood test to find their IgA and then they had a biopsy ..... well....I really think 70 out of those 100 folks would then be diagnosed as Celiac and be instructed to go on a gluten-free diet. I put myself in with this crew.

I think you would find a few, maybe two or three (more than the one in 133 now estimated), but nowhere near 70. Although I personally don't believe that gluten is good news for anybody, there are not that many people in whom it causes significant problems. I personally consider moderate villous atrophy to be a significant problem and evidence that gluten is really bad for you. It is a pity that you do not experience symptoms you can feel so you would take this disease more seriously because celiac can have very severe consequences. I know other posters have told you this, but really you do not seem to be listening. Of course, it is your life and you are entitled to take whatever risks you wish with it, but the fact that you are posting here would indicate you have some doubts and want verification that what you are doing is okay. Well, I for one do not think it is okay. But that is just me, suffering from what I have from the effects of gluten.

For your body's sake, I wish you would reconsider.

[emcmaster]

(This is slightly off-topic, but...)

Often when I read threads similar to these (newly diagnosed person has trouble sticking to gluten-free diet), I'm amazed at all the responses that berate the OP for essentially "being stupid" about their health. 9 times out of 10, the OP knows what they are doing is compromising their long-term health. They're not debating that. They are looking for support and guidance.

Completely revamping one's diet is hard enough when you have physical symptoms so horrific that brown-bagging meals of plain chicken and steamed veggies to social events is worth it. I can't IMAGINE how hard it would be to stick to such a restrictive diet if I didn't have a near-immediate reaction that lasted a few weeks.

Perhaps a more gentle approach would be more welcoming? Such as: Yes, the diet is hard and it must be very hard for you since your body isn't physically reacting and telling you to put down that cookie. But, your long-term health is much more important than any food and continuing to eat gluten when you have Celiac will mean major long-term health problems. Is there a specific food that you really enjoy? Let me point you to the recipes section so we can show you how to make it gluten-free...

Just a thought.

[Nancy H]

I have silent celiac disease. Can eat gluten without any symptoms. I am still being encouraged to eat a gluten free diet due to, among other things, the increased risk for cancer. Then this article appears.

No Higher Cancer Risk for Silent Celiac Disease

https://www.celiac.com/articles/21818/1/No-...ease/Page1.html

My thyroid is fine, had a bone scan recently - no issues. It makes no sense to feel so good and be told to be on such a difficult diet. Not to mention the fact that I am not supposed to take Holy Communion at church. Any ideas anyone? Thank you.

[Chrissyb]

With all the damage it can cause silent or not I would never take the change. As far as communion goes, that is the only gluten I have and our church only takes it once a week. I see it this way I have faith that the Lord with bless and keep me save that for that reason and to this day it has nver botherd me and I believe the Lord will keep me save.

[Gemini]

I have silent celiac disease. Can eat gluten without any symptoms. I am still being encouraged to eat a gluten free diet due to, among other things, the increased risk for cancer. Then this article appears.

No Higher Cancer Risk for Silent Celiac Disease

https://www.celiac.com/articles/21818/1/No-...ease/Page1.html

My thyroid is fine, had a bone scan recently - no issues. It makes no sense to feel so good and be told to be on such a difficult diet. Not to mention the fact that I am not supposed to take Holy Communion at church. Any ideas anyone? Thank you.

Nancy......I will be the first to admit it must be horribly difficult to be told you have a disease that you suffer little to no symptoms of. This is why it is hard for smokers to quit......you can smoke most of your life with little to no problems until you get into the "Golden years" period of your life and then it can become

problematic. I am one who suffered most of my life from advanced, life threatening symptoms so I totally believe I have this and it is real.

A couple of comments....it is my personal belief that the description of the Celiac diet as restrictive is untrue. It's only restrictive if a person does not cook and eats most of their meals out. Even then, I have had little to no trouble eating in restaurants successfully. You cannot eat out all the time but you can do this occasionally without a problem. I also have been able to convert almost every single one of my recipes into a gluten-free version and from what many have told me, I have done so successfully. Honestly, I in NO WAY feel I am living a restricted lifestyle. Attitude is a huge part of the solution but then again, I have many health problems as a result of undiagnosed celiac disease for most of my life.

I am one of those who believe that about 60% of the American population have celiac disease/GS and don't know it. This is why we have some of the highest cancer rates in the world. If you continue to eat food which is damaging your insides, even silently, you could end up having a really bad time in your later years or dying much younger than need be. The 1 in 133 number is a big joke. Most of the people I know have many symptoms or diseases that would point to it but refuse to be tested. I have no doubt that cemetaries and nursing homes will be even busier in future.

Lastly, taking communion can be done with gluten-free wafers or a rice cracker, if you talk to your pastor about it. I cannot imagine they would have a problem with that.

However, I do not take communion at all because I refuse to drink out of any cup which is communal with people eating wheaty wafers. I also will not eat gluten knowingly and I highly doubt God will hold that against me. I firmly believe Jesus died for our sins so skipping communion is not something I worry about or have a problem with. If you wish to do so, talk to your pastor about it. Things can be worked around.

Good luck to you and I hope you can come to terms with this. It's really not as bad as it seems in the beginning!

[Takala]

That study is flawed. It does not say what sort of diet any of them were on in that link.

Were the people with the positive blood antibodies eating a gluten free diet, or not ?

You said yourself in your earlier posts that you had trouble sticking to the diet, and I'll repeat my earlier reply that having trouble sticking to the diet is one of the symptoms of gluten intolerance.

You have also not proven to anyone that you have "silent" celiac disease, because your biopsy is showing physical damage to your small intestine, whether or not you can feel it. This damage will cause problems with absorbing certain nutrients, whether or not you are familiar with the symptoms of subtle malnutrition. That malnutrition can cause behavioral oddities. Low calcium levels can cause carbohydrate cravings. Lack of vitamin B12 can make people weep with despondency or feel doomed for no good reason. Cancer is not the primary bad side effect of gluten intolerance/celiac, anyway. More likely metabolic malfunctions caused by malnutrition, triggering other autoimmune diseases.

Cancer doesn't show up in most people until they are nearing retirement age or older, anyway. Another flaw in the study, as it used all age groups instead of one. Who knows what the comparative cancer rates are in the positive antibody vs. negative antibody groups in a set of 60 year olds ?

I can eat some forms of trace gluten without getting as violently sick as most people, (but this finally seems to be going away as I get older) so it's actually a nuisance because it can take me longer to figure out where I am getting cross contaminated from if I am eating a problem food. I frequently don't realize it until I find myself getting really irritable or groggy, and then I realize that I was ignoring the other symptoms.

[Michi8]

I have silent celiac disease. Can eat gluten without any symptoms. I am still being encouraged to eat a gluten free diet due to, among other things, the increased risk for cancer. Then this article appears.

No Higher Cancer Risk for Silent Celiac Disease

https://www.celiac.com/articles/21818/1/No-...ease/Page1.html

My thyroid is fine, had a bone scan recently - no issues. It makes no sense to feel so good and be told to be on such a difficult diet. Not to mention the fact that I am not supposed to take Holy Communion at church. Any ideas anyone? Thank you.

You've had a biopsy showing villous atrophy. If you continue to eat gluten (including communion wafers) that atrophy will get worse, and at some point you'll probably start seeing symptoms due to malabsorption. It is fantastic that it's been caught before you're symptomatic, because that means you've got a great chance at staying in top physical shape. It's much harder to reverse damage, and the resulting health problems, when the disease has been going on for longer. There are some who never do completely heal.

And there are some who continue with health problems with no clear test results, such as myself. To know that eating gluten makes you feel poorly, but the tests show you're "normal and healthy" makes it tougher to take on the diet. At least you have the proof of the necessity for being gluten free.

Michelle

[Fiddle-Faddle]

Over the past 3 1/2 years, I've heard from plenty of celiacs who'd thought they were fine eating gluten--until autoimmune issues took over and their health spiraled out of control. Many of those people are still members here--look up ravenwoodglass and stilltiredofdoctors for starters. I believe both of them were looking forward to life in wheelchairs before they finally went off gluten. There are also quite a few whose villi never healed, even after years of being gluten-free.

I also have a colleague who died from intestinal lymphoma, and he likely had undiagnosed celiac.

I don't have immediate reactions to gluten--and I won't touch it. My MANY autoimmune disorders either disappeared or greatly improved in the absence of gluten. I have absolutely no desire to see them return.

You have already been shown that it has caused damage to your body, whether you feel it or not. What kind of future do you want?

Do you want children? Celiac causes infertility. Do you have children? If so, do you want anything to interfere with your ability to take care of them (or yourself?)? Celiac can eventually cause DEVASTATING symptoms, and has been linked with intestinal lymphoma--and you've already got the damage that leads to that. You really want to continue that damage?

And for what?

It's your life, and your choice. Just don't kid yourself that you're not doing damage--you obviously are.

Would you tell a woman with stage 2 breast cancer that she shouldn't believe something is dreadfully wrong, just because she still feels fine?

[Jestgar]

Actually the study is age-adjusted, but it does not consider diet. It looks at all cancers, including breast and prostate. The p values are high, and therefor not significant for any of them, however the pvalue for breast cancer is something like 0.47, and the pval for lymphocytic infiltrates is something like 0.15 for TtG pos, and 0.05 for EMA pos people. So no, not significant, but not a difference that I would choose to ignore when considering my own health.