Does Gluten Damage Before Onset Of Symptoms?

[afreeclimber74]

I ate regular food for the first 30 years of my life with no symptoms until my trigger event set things in motion.

What I would like to know is if gluten does damage to celiacs without causing symptoms?

I used to feel totally fine eating bread, pasta, etc., until just the last few years before I figured out my problem.

Was I causing unknown damage all that time without symptoms?

If I never had a trigger event, would I have been fine eating gluten the rest of my life?

[T.H.]

You can definitely do damage without any noticeable symptoms. It's called Silent Celiac Disease, and as I understand, that type of celiac disease is growing within the celiac disease population. My family is full of that type. I was diagnosed without any gut symptoms, simply because I asked to be tested. I insisted on testing my children, neither of whom had any symptoms we knew of, and one came back positive. My father's diagnosis came while the doc was looking for something else, as well.

But my father is a good example of what can happen if it goes on too long. With no gut symptoms, he started having other problems when he hit his forties. His hips both suddenly deteriorated. He got arthritis in his back. His lungs had issues.

After he was diagnosed with celiac disease, they looked back at his problems, and a lot of them seem to be from the auto-immune issues, internal inflammation, and vitamin deficiencies he was suffering from all those years. But he'd showed no signs until parts of his body were already irreparable.

Of course, it's possible you could have been fine, too, honestly.

Sigh...it would be so nice if our bodies could just be easy to figure out, eh? :-P

[mushroom]

Certainly you can look at the situation and say that symptoms are your body's way of saying, "Houston, we've got a problem". But how long does it take and how much damage is required before your body asks for help?? And as the previous poster stated, some bodies do not seem able to send the appropriate signals in a timely fashion.

I didn't realize I had a real problem until I developed rheumatoid arthritis, and I actually went gluten free to treat that, not celiac/gluten intolerance (I will never know now which), because someone I knew treated his ankylosing spondylitis (also an autoimmune arthritis) that way. Also, our bodies sometimes send mixed messages that neither we nor our doctors interpret correctly. I used to regularly lunch with a friend who said what a joy it was to eat with me, because I never said "Oh, I can't eat that!" when in reality there were several foods I should have not been eating which I did not recognize as intolerances. So a lot of it is how aware we are ourselves and how knowledgeable our doctors are. I was told for years that anything I complained of was all in my head and I needed to see a shrink. Well, I don't think shrinks treat RA, actually. To the best of my knowledge at that time, it was probably best to avoid Mexican food. I now suspect, two and a half years after gluten free, that I have a problem with lectins, which are in gluten grains, corn, soy, peanuts, legumes, nightshades. No wonder I had problems with Mexican food--gluten, corn, legumes, nightshades. No professional has ever told me this, it is what I have figured out for myself through a slow process of elimination. The more layers I peal back, the more is revealed. It is totally insidious. My favourite dish used to be ratatouille composed 75% of nightshade, my comfort food used to be pizza (gluten and nightshade)--I ALWAYS felt good after pizza. So my body was bit slow in sending me proper messages about those.

So there is no black and white, only shades of gray which we all find difficult to interpret. If you think back you might find some cues in your past. I had a trigger event that sent me over the wall, but most of us have had some signs before if we knew how to recognize them.

This is a long way of saying, Yes.

[detritus]

I, too, have/had RA, which seems to be particularly triggered by nightshades. I used to eat fresh homemade gazpacho every day in summer (tomatoes,bell peppers,cucumber & vinegar) with no issues. Then I had pneumonia, which I believe was my trigger. Summer rolled around, I whipped up a big bowl of gazpacho and "ouch" ! My hands were so inflamed I couldn't turn the key in the lock to my house.

Now that I've been off gluten for 3 weeks, I haven't even felt a twinge. Hopefully one day my body will repair to the point where I can make my gazpacho again:P

In one of the books I read about Celiac's Disease, it says that even those who haven't been triggered are more susceptible to developing certain cancers than the rest of the population, but that once one starts eating gluten-free that potential is reduced.

This is why I worry about my brother. My sister and I both have strong symptoms-bowel issues, me with the RA etc., her with the osteoporosis etc., but my brother has never had any symptoms. I found out that he had a positive blood test, and supposedly went off gluten for a year, but decided he didn't feel any different and went back. I'm a little frustrated that he never told me that he tested positive for a genetic disease, and that I had to find my own way to diagnosis years later (especially because he's a geneticist) but I am more worried that he is poisoning himself, only to run into worse issues down the line.

I think for my sister and I it is easier, because we are both so desperate for relief.

[Bobbijo6681]

Another question I have is what happens when we are healed but get glutened at some point, do we completely start over again? Or at that point is the damage only minor and after a few days/weeks of healing we are ok? I DO NOT plan on eating gluten, but worry that because I have no Major Symptoms what may happen if I do ingest even a small amount, as I am feeling so much better. Just a thought that popped in my head as I was reading this.

[mushroom]

Another question I have is what happens when we are healed but get glutened at some point, do we completely start over again? Or at that point is the damage only minor and after a few days/weeks of healing we are ok? I DO NOT plan on eating gluten, but worry that because I have no Major Symptoms what may happen if I do ingest even a small amount, as I am feeling so much better. Just a thought that popped in my head as I was reading this.

Often after we have been gluten free for a while our bodies help us out on this, by reacting so much more strongly to the stimulus than they used to. But no, a mistake does not put you back to ground zero. It is just a setback, does not help at all, and creates problems for a varying length of time according to the individual. Some people one or two days, some people experience symptoms for up to three weeks. Since we don't normally have any testing done it is hard to gauge how much harm it causes, but it is probably minor although best avoided

[Bobbijo6681]

Often after we have been gluten free for a while our bodies help us out on this, by reacting so much more strongly to the stimulus than they used to. But no, a mistake does not put you back to ground zero. It is just a setback, does not help at all, and creates problems for a varying length of time according to the individual. Some people one or two days, some people experience symptoms for up to three weeks. Since we don't normally have any testing done it is hard to gauge how much harm it causes, but it is probably minor although best avoided

That is what I was hoping....I am finally getting all of my vitamin levels up to a decent level and don't want to even think about causing that to start over again. I am very careful about staying Gluten-Free, but I am sure that at some point in time I will be glutened....Like this past weekend. It was 100% my fault, but I was in a hurry and didn't read the label on something that I thought would be safe. Lesson very hard learned!!

[sandsurfgirl]

My bowel issues have waxed and waned during my life, sometimes being horrifically bad and other times being absent. What has been my worst since my 20's has been respiratory and sinus infections. I have gone years where I couldn't be off antibiotics for more than a month or two at time because of the infections. I came up as "mild" on all my seasonal allergy tests, yet I presented as a severely allergic person. My allergists were totally baffled.

They thought I had an immune system disorder so they tested my titers (spelling?) and they were off the charts strong. I had one of the strongest immune systems she had seen yet I was sick sick sick. Since I went gluten free 7 weeks ago I haven't had any infections, the inflammation in my nose has gone away and my asthma is at bay.

Celiac can present in such weird ways, which contributes to it being difficult to diagnose. I think that everyone should be blood tested if they have unexplained illness, but the docs don't listen to me.

[Peace41]

I also like the Houston we have a problem, because that is what my life feels like at times, instead it is God, LJC we have a problem....

I had my trigger event recently and have just found out because of the trigger event I have gluten intolerance, not sure yet if it is Celiac disease or the Non Celiac gluten intolerance, when u have a trauma injury and have disabilities to do with traumatic stress, u get use to all the odd symptoms that come up, but u can become more and more sensitive, and have more and more intolerancs to things people wouldn't even think of. One of my strange and difficult ones to live with is a sensitivity to movement. Which can be ridiculous to try and live with, because life is movement, I am okay if I move, its movement around me, that I find difficult. The minor can also be amplified so it feels worse than what it really is, and can mimick other things. But having Gluten intolerance now, I look back over my life and go no wonder, so now I have answers that answer all those questions that had no answers and made me feel like an odd bod and now the doctors will now know I am not imagining things.

Also when I got my diagnosis recently, and yes there was some sadness that came, but I am in a situation that if I had to swing off a chandelier to get better, then that is what I am going to do. When the doctor told me, he also said I have lining damage, and also another two more diseases to add to my list of disabilities etc...and said I had to modify my diet and he insists then I know I need to listen and do. Also I went to an ENT guy that said there was nothing wrong with my throat that he could see, and the tests that he did came back normal, all but one, the swallow test I couldn't do at all. But if I would have stopped at the ENT person, and listened to him and not see a gastrologist, I still would have troubles but not know that I have Gluten Intolerance. And still the medical people would not know that I was living with internal damage. Its also interesting what I thought I had and told the doctor that I thought I had these things, was really what I had. When u r sensitive u can tell even down to the minute which area and what is the trouble. The only thing I didn't know that I had was a gluten intolerance. So now I am glad I know, I can do something about it still and it is going to take a while for my injury to heal, probably months or years. But I feel blessed because they picked this up before it became something far worse. And now my doctors and the hospital here can also take that into account and it becomes official I have a known allergy. When u r simply hypersensitive to things, at times u don't get treated appropriately and people can look at u like u r strange for being sensitive. But when u have an allergy, suddenly u get treated a whole lot differently. And now this specialist I am seeing is being mindful of my other disabilities, and taken that into consideration, when before others weren't doing that, and I had to be very vigilant, now it also becomes easier in receiving treatment and I have been given things to do that I can cope with, so it then becomes a blessing.

And that is what I treat this like, the troubles becoming blessings in my life, that make life a lot better and meaningful to live.

Peace41

[Reba32]

I think that even if you do not experience any gastric distress type symptoms that if you have outright Celiac disease the damage is still being done. That's the definition of Celiac Disease. An auto-immune response to eating gluten that causes the villi of the small intestine to atrophy. If you don't have Celiac disease, then you likely do not have intestinal atrophy. If you have Celiac disease, you *do*. Lots of people have no noticable symptoms.

They will however likely have other symptoms that are not easily linked to Celiac disease, unless they have a knowledgeable doctor who puts 2 + 5 together to get Celiac. Vitimin deficiency, mineral deficiency, malnutrition despite healthy diet, lethargy, mood swings, fibromyalgia, chronic fatigue, arthritis, headaches, hair loss, tinnitus, etc etc etc ad nauseum.

Just because you don't get a belly ache if you eat gluten, doesn't mean the damage isn't being done. And your lifespan is already lower than the average because of the disease. Continuing to eat gluten will just shorten it even more, and leave you suseptible to cancer and other diseases.

Accidental glutenings can't be entirely avoided, it's going to happen no matter what you do. But over the long term they won't do nearly as much damage as daily or regular deliberate eating of gluten. I know you said you're not planning on it, but in case anyone else is reading this who hasn't gone gluten free yet.

[Brien]

After feeling like crap for about 9 - 10 months, a holistic doctor told me I had a wheat allergy and that I should go on a gluten free diet for 6 months and then re-intorduce slowly to see how I would reacte. Being Hypotyhroid for the past 6 years, I recently switched to a new endocronologist who, after telling him about my wheat allergy, wants to know if it is that or Celiac's. SO now I'm half way through 3 weeks of reintroducing wheat before the bloodwork. He didn't say that I had to ingest it everyday but to get enough in for the bloodwork to be able to tell. I had Chinese food Monday night and a good tasty big takeout burger and fries Sunday. Tuesday I felt like hell. Today not as bad but I can feel the waves of it ebb and flow. For me it will probably take up to a week to get over this. I hope I'm not doing too much more damage and I guess now my end of June timeline can be moved to August to be safe...,Unless of course Celiac gets confirmed.

[mushroom]

How long had you been gluten free, Brien, before starting to eat it again? And just how much gluten are you eating?

The reason I ask is that the generally accepted guidelines for gluten-eating in order to get a valid test result are from two to three months of eating gluten, equivalent to two to three slices of bread, every day. Given the way you reacted to the burger, you will probably find this horrifying But it is pointless to put yourself through the suffering to try to get a diagnosis if you have little chance of succeeding because of insufficient gluten. Doctors offer a variety of time ranges to their patients ranging from a couple of weeks to the full three months from those who "know." The common experience on this board, unfortunately, is that doctors are not particularly well educated on the ins and outs of celiac disease.

[Bobbijo6681]

I have to agree with Mushroom that there are so many false negatives out there I wouldn't go back on gluten just to get tested. If you feel better, then you have all the answers you need. I think it is horrible that a dr would want you to be sick so they could run some tests.

I hope it all works out well for you!!!

[Brien]

Thanks - my endocronologist said I need to put wheat in my system for 3 weeks. he didn't say I have to eat it everyday but he needs enough so the blood work will give him something - he assured me its a good test to find out if I'm celiac or not.

I didn' eat any gluten yesterday. Today I stopped in Wendy's (its been since September/October since my last fast food) for a Fish sandwhich - thought I'd get mine in for today. Don't plan on eating any on Thursday and Friday but will have some on Saturday night dinner and something on Sunday, Monday off, Tuesday on Wednesday off.., something like that. I go for bloodwork the morning of the 22nd, so i don't have to eat any on that day.

[Bobbijo6681]

I find it odd that he assures you that this test is a good way to find out if you are Celiac, as even my dr told me that the test could show up negative, even if I have Celiac. I was lucky enough to test positive, and the biopsy confirmed it, but from all of the things I have read here and other places the blood test is VERY unreliable. I hope it gives you the answers you are looking for though!!! It is always good to know what is wrong, I can deal with just about anything as long as I know what it is!

Good Luck on the 22nd!

[kayo]

This is a great topic. I too wonder what damage, if any, has been going on all these years. Looking back I believe I have been symptomatic at different periods of my life, the worst of it kicking in about 5 years ago. Any complaint though was always blamed on my RA or the meds I took for my RA. It's a shame more doctors don't know more about celiac. Instead they have blinders on and tend to ignore anything outside those boundaries.

I like the 'Houston We Have a Problem' analogy.

I was lucky that my GI doc diagnosed me based on my symptoms and medical history and the fact that I have gotten better on the gluten-free diet. I've had two tests before seeing her while I was on the gluten-free diet. The blood work came back negative and the stool test came back positive. The gene test shows I don't have the classic celiac genes. So from those tests a doc who knows nothing about celiac would say I don't have it. Luckily I got to see a GI doc who is well versed in celiac. I was not willing to go back on gluten just so I could 'prove' I have issues with it. I also did not want the intrusive endoscopy. I'm happy my doctor validates these decisions. Why do more damage to our bodies. I wish more docs were willing to listen to us and not just rely on test results which have proven to be inconclusive.

[afreeclimber74]

I was gluten free for almost a year before my blood test and it confirmed my celiac anyway.

I asked my doctor about needing to have gluten in my system for the test to work, but he explained that antibodies are formed when the immune system senses a threat and those antibodies will always be there. I had read otherwise and didn't believe him, but my test came back positive.

[soblessed128]

I too have had symptoms of celiac now that I look back over my life. I am 31 now. I had acid reflux and lactose intolerance as a teenager but no one ever diagnosed it as being related to being a celiac. I notice my mother who is 65 starting to have issues. I think the problem stems from her father's side of the family. I also have symptoms of Arthristis when eating certain veggies and other foods which also triggers candida. I noticed my wheight drops when this happens too. I wish this had been figured out sooner so I could be not only feeling better but managing it better. However, maybe it happened like this so I could help someone else. We all know the consequences of eating gluten and what it does to our digestive and immune system. The other day I thought I would treat myself to a peice of my nephew's b-day cake. I was bloated and suffered for two days. Do these symptoms ever subside if you go completely gluten-free?

[mushroom]

.The other day I thought I would treat myself to a peice of my nephew's b-day cake. I was bloated and suffered for two days. Do these symptoms ever subside if you go completely gluten-free?

You must stop cheating on yourself like this or you will never heal and have the chance to know End of lecture!