Anyone Else Asymtopatic?

[Artorius75]

I have only recently been diagnosed with Celiac, but I continue to struggle with the diet and with the concept of the disease because I am asymtomatic to it. I have stomach acidicy issues and have been medicated for those for about 7 years now. 2 years ago my doctor decided to perform some additional test because even on the medicine I have bouts of D once or twice a month depending on how healthy my diet is, the more sugar and junk the more likely a bout.

after performing both blood test and biopsy, I was diagnosed with Celiac. I then went to a support group and learned more from the people there just how severe it is for most people. I met 1 woman there who was fairly aysmtomatic as well, she would have small or no problems after eating something she shouldnt, but it could take days making it hard to track down what caused it.

My dilema is 2 fold, 1 being that i have a much more clear understanding of the disease and the damage it is causing my system now than i did when diagnosed and I am trying to convert to a gluten free life. but even while trying to becareful i can be eating things i am not suppose to and not know it, so how can i tell?

the second dilema that I dont have a lot of support from friends and family, most dont understand what I am going thru, and since i dont get ill from eating gluten foods, they dont see the point in following the diet.

Guess what I am seeking is knowing how common it is to be asymptomatic? how do other who are cope? are their ways for me to tell if I have eaten foods I shouldnt because I want to be free now that I know my long term health risks.

[Mamato2boys]

At first I thought I was asymptomatic too. My son was diagnosed as being gluten sensitive, and through that DH and I learned we each carry at least 1 gene, so we decided to do the diet too. Plus it's easier if the whole family is eating one way.

Anyway, I didn't think I had symptoms of gluten sensitivity at all. I'm overweight, didn't have chronic diarrhea (in fact, I'm usually constipated), and thought that I just didn't react to gluten much. As I progress further along in the diet, I notice more and more things. Like, the fact that I'm chronically constipated isn't normal. The fact that I'm overweight and have a VERY hard time losing weight isn't normal. Then I started noticing I felt MUCH less bloated in my stomach/abdomen. Then I started noticing that I was retaining less fluid in my hands and legs - I didn't even realize I was retaining fluid there. Then my blood sugar started settling down. Brain fog started lifting. I noticed that I really felt like road kill after eating glutenous foods, but was so USED to feeling that way, I didn't notice it until I stopped.

ALL of these things were going on and I didn't notice until they started disappearing. It's very possible that you may start to notice the same types of things as you progress along. Then again, you may truly be asymptomatic, as some celiacs are. It doesn't mean that ingesting gluten isn't making you sick though, it may just manifest itself in different ways.

Think of it this way, with a diagnosis of celiac disease, if you ignore that and eat glutens anyway - YOU WILL eventually get sick. Whether it's osteoporosis, diabetes, intestinal cancer, or what have you, it WILL make an impact. Why do that to yourself ?

If your family isn't supportive, I would just ask "don't you want me to be as healthy as I can be ?" Surely they can understand that.

People who don't live with it CAN'T truly understand. It isn't their experience. It's a little like trying to explain colors to a blind person, I think. But they can support you in keeping yourself healthy. That's a concept just about everyone can grasp.

[Budew]

I am like you. Only you are lucky to have found out before the effects were too bad. Go 100% gluten-free now.

I think I had it 25 years, diagnosed 5 years ago when I was only sort of sick. Since the diagnosis 5 years ago I am very sick.

It was hard because I was better with it than without. Once I ate vegetarian chicken nuggets just to see if pure gluten would cause some reaction. It did. A total setback. I suggest you believe the test reaction or not.

I am contemplating sharing my experiences with my nephews, they have some vague signs, and a hereditary line like a rope. At first I thought I was lucky not having to worry about it until I had symptoms. For 20 years I was sick but even though mom had had it 50 years, my whole life we never suspected it, because NO symptoms like hers.

Now I am in the same condition as all these folks who were not diagnosised prior to the damage. Sick, disabled.

For warning. Don't let this happen to you. Go 100% gluten-free now!

[Kaycee]

[SarahTorg]

At first I thought I was asymptomatic too. My son was diagnosed as being gluten sensitive, and through that DH and I learned we each carry at least 1 gene, so we decided to do the diet too. Plus it's easier if the whole family is eating one way.

Anyway, I didn't think I had symptoms of gluten sensitivity at all. I'm overweight, didn't have chronic diarrhea (in fact, I'm usually constipated), and thought that I just didn't react to gluten much. As I progress further along in the diet, I notice more and more things. Like, the fact that I'm chronically constipated isn't normal. The fact that I'm overweight and have a VERY hard time losing weight isn't normal. Then I started noticing I felt MUCH less bloated in my stomach/abdomen. Then I started noticing that I was retaining less fluid in my hands and legs - I didn't even realize I was retaining fluid there. Then my blood sugar started settling down. Brain fog started lifting. I noticed that I really felt like road kill after eating glutenous foods, but was so USED to feeling that way, I didn't notice it until I stopped.

ALL of these things were going on and I didn't notice until they started disappearing. It's very possible that you may start to notice the same types of things as you progress along. Then again, you may truly be asymptomatic, as some celiacs are. It doesn't mean that ingesting gluten isn't making you sick though, it may just manifest itself in different ways.

Think of it this way, with a diagnosis of celiac disease, if you ignore that and eat glutens anyway - YOU WILL eventually get sick. Whether it's osteoporosis, diabetes, intestinal cancer, or what have you, it WILL make an impact. Why do that to yourself ?

If your family isn't supportive, I would just ask "don't you want me to be as healthy as I can be ?" Surely they can understand that.

People who don't live with it CAN'T truly understand. It isn't their experience. It's a little like trying to explain colors to a blind person, I think. But they can support you in keeping yourself healthy. That's a concept just about everyone can grasp.

This is very true!!!

I didn't realize all the symptoms I actually had until going gluten free!

[Mandy F.]

I was totally asymptomatic, too. I don't even know that I had occasional bouts of D or anything except unexplainable stomachaches from time to time and anemia. I had a lot of trouble sticking to the diet at first, because I couldn't see any difference. I decided to make a real effort to strictly follow the diet and I learned that I could have celiac disease symptoms after all. Try it and see if you notice a difference. I only ate fresh meats, vegetables, and fruits for 3 weeks then ate some yummy powdered donuts (i miss those)... It only took a couple of hours before I had the big flaming D and could hardly keep my eyes open for the fatigue. It convinced me to follow the diet.

I don't know what to say about the unsupportive family... I don't live anywhere near most of my family and the one family member who does live with me converted to the diet also. She's found that she feels much healthier since doing so. Sorry I don't have any advice for you on this topic. Good luck!

[elye]

Add me to the "silent celiac" list...at least I was when I was first diagnosed. My only symptom was low iron, so I thought for a while my blood work had been switched with someone else's. Just made no sense that I had never had any gastrointestinal issues at all. Then I had the biopsy, and there was villi damage. Since going gluten-free, I now get bad abdominal pain and bloating when I'm accidentally glutened. So I would suggest that you just try your best for now to stay completely gluten-free, and then when your lower intestine begins to really heal you will very likely get symptoms when you ingest gluten. Your small bowel is probably too numb with damage right now, and too accustomed to being attacked, for you to feel obvious symptoms. It'll get more obvious, I promise! (dunno if that's good or bad!)

[bmzob]

i thought i was asymtomatic too. since going on the gluten-free diet i have found that i did have symptoms. i used to get headaches and bloating at least once a week before going gluten-free...i didn't even notice that i hadn't been getting them until i accidentally ate something with gluten in it and they came back within an hour. i also could not concentrate, it was like i was in a fog after i ate the gluten. i have also learned that my other disorders (signature) were most likely caused by celiacs, but everything was masked by the immuno suppressants i took for about ten years. once i was off the meds, i got a really bad reflux attack, which i'd never had any type of reflux every in my life before, they did some tests and now i've got celiacs.

my family is pretty supportive. the only thing that gets me is my food (gluten-free) is not considered good enough to them some times and it sorta ticks me off. like i wanted to make stuffing for thanksgiving for everyone (w/cornbread i think), but instead i get to make my own one on the side. and like i was talking to my mom about wedding cakes and apparantly she feels i should have two cakes...one for me and one for everyone else! that really ticked me off, but sorry i'm rambling and this is a whole nother topic sorta.

the diet isn't that bad other than the cost of some things and trying to find substitues for some things. everyone here can help with that though so feel free to ask questions

good luck!

[All-about-March]

Artorius,

Welcome!

You are not alone in the 'absence of symptoms' issue. I came on board with exactly the same questions as you. My advice : read, research, read more and of course follow the gluten free diet!! I actually spend probably a bit too much time reading all the different experiences of others here, but I have learned much!

For me it is very much a hindsight being 20/20 thing. I thought I was asymptomatic as well. Looking back, and doing some stupid things along the way (accidental and purposeful glutenings), I have come to realise that I was likely having symptoms for several years, but because feeling unwell was such a normal thing, I was almost immune to all that was wrong, or just got used to feeling that way. I now realise that my neuro symptoms, depression, brain fog, essential tremors, etc were all related to major malnutrition issues b/c of celiacs. Now, when I get gluten into my diet (which now is NOT ever intentional) I even notice gastro symptoms that I believe I had before, but didn't notice (again b/c I thought it was normal) until they were absent and then came back.)

The damage is still being done on the inside even if you don't notice or think you don't notice it on the outside. I know that my purposeful gluten challenge was really dumb, but I personally needed to see what would happen. I agree that it is difficult to understand how you can be sick, without having tangible symptoms of being sick. Knowing what could happen down the road if I do not follow the diet is now enough proof for me!

I also understand the lack of support from family and friends. I figure if I have had many issues wrapping my fogged brain around this disease, why wouldn't they? I have printed out information from different sites to give to them to read so that they may try to understand it, but some still draw their own conclusions about the diet and what I need to do. Many of my family members think that "some" gluten is still ok and don't even go there with CC issues - I have been told that I'm now "being an extremist and taking this WAY too far". It hurts, sure, but with or without their support, I must do what I need to do for my health.

Get the support where you can - your support group, here on this forum, from those in your life that do at least TRY to understand and hopefully that helps.

Good luck to you and be well!

[Guest nini]

here's the thing, because as a society we are not used to discussing our bowel habits or other bodily functions, most of us go along under the impression that things like constipation or diarrhea or gas are NORMAL... they are most definitely not normal. They are symptoms and our bodies are trying to tell us something, we are just used to popping a few pils to quiet the noises our bodies make and not listening. In most cases eventually that will catch up with us in the form of something way more serious. If you are considered "asymptomatic" while still suffering from constipation or gas or even occassional bouts of diarrhea, you need to re think your definition of normal! (I have to laugh at this because honestly for years I thought diarrhea was NORMAL, I thought everyone always had very loose explosive bowel movements after eating)... it was only after going gluten-free and realizing what a normal bowel movement was like that I realized my body had been trying to tell me for years that something was very wrong.

It's the same thing with headaches and muscle pain and joint pain, too often we go through life thinking that this state of being is normal, that it's just part of life that we have to accept, well, that's just not so. Once we learn to recognize the signals our bodies are sending us, we can accept that there are things we can do to make a difference, whether it's sticking to a gluten-free diet, eliminating other allergens, eliminating stress from our lives, learning to cope better, addressing the physical, mental and spiritual aspects of our health, and on and on...

[BabySnooks]

I have only recently been diagnosed with Celiac, but I continue to struggle with the diet and with the concept of the disease because I am asymtomatic to it. I have stomach acidicy issues and have been medicated for those for about 7 years now. 2 years ago my doctor decided to perform some additional test because even on the medicine I have bouts of D once or twice a month depending on how healthy my diet is, the more sugar and junk the more likely a bout.

after performing both blood test and biopsy, I was diagnosed with Celiac. I then went to a support group and learned more from the people there just how severe it is for most people. I met 1 woman there who was fairly aysmtomatic as well, she would have small or no problems after eating something she shouldnt, but it could take days making it hard to track down what caused it.

My dilema is 2 fold, 1 being that i have a much more clear understanding of the disease and the damage it is causing my system now than i did when diagnosed and I am trying to convert to a gluten free life. but even while trying to becareful i can be eating things i am not suppose to and not know it, so how can i tell?

the second dilema that I dont have a lot of support from friends and family, most dont understand what I am going thru, and since i dont get ill from eating gluten foods, they dont see the point in following the diet.

Guess what I am seeking is knowing how common it is to be asymptomatic? how do other who are cope? are their ways for me to tell if I have eaten foods I shouldnt because I want to be free now that I know my long term health risks.

I too do not have symptoms. I have been gluten free for about seven weeks and do not feel any different than I did on gluten. Last year after being diagnosed through biopsies I was gluten free for four months and didn't feel any different. Then I went on a gluten challenge requested by my GI doctor for ten months. I was rediagnosed with celiac again through biopsies and went back on the gluten-free diet. I don't know how common this is, but unless things change, I won't know if going gluten free is healing my intestine until my next test in three years. It is also impossible to know when I have been accidentally glutened, because I always feel the same. Hopefully, I am not being glutened by cross contamination. I guess only time will tell.

Sharon