I Didn't Even Know I Was Sick

[bartfull]

I have been gluten free for a little over three weeks now. I guess I was what you might call asymptomatic. At least I didn't THINK what I had were symptoms. I thought the fatigue, foggy headedness, and aches and pains were just part of getting older. I am almost 57, and I was thinking that if I feel this bad now, what will it be like at 70?

I actually DID have some digestive issues, but I thought I had brought on those troubles myself. I am a musician (just an excuse, really) and I used to drink rather heavily. I never really had D, but I would go three times every morning, with things becomming "looser" each time. This had been going on for so long that even after I stopped drinking completely, I figured I had done permanent damage.

Now I find it was ALL because of gluten. I now go once each morning, and things are more "normal". I have energy like I haven't felt in twenty years. The insomnia is GONE - I am sleeping 7 or 8 hours a night, without even waking up to go use the bathroom. My head is clear. My vague aches and pains are gone.

I realize that I am lucky to have had such mild symptoms compared to some, and such fast results when going gluten free. But there is a drawback. How can an asymptomatic person even tell when they have been glutened?

I bring this up because the psoriasis on my right hand has started flaring up a little. And it turns out, it was the Lay's Potato Chips (I think). Back when my Mom was alive, she could eat Lay's. (She had Celiac too.) But yesterday I saw on the web that Lay's cannot guarantee there isn't cross contamination in their chips.

So, although I'm not crazy about the psoriasis flare up, it did signal me that there was some gluten getting into my system somehow.

Question: is there any OTHER way for an asymptomatic person to tell? I know even though I don't feel it, I am doing damage every time I get glutened. Do I just have to learn to be more careful, or is there some other way to tell?

[love2travel]

How awesome to hear your insomnia and other symptoms are clearning up after only a few weeks! Wonderful news.

I understand what you mean about being asymptomatic. I have no clue whether I have been glutened or not so I am excruciatingly careful. Nothing obvious at all happened when I was eating lots of gluten prior to my biopsies. I have been gluten-free nearly five months and insomnia and brain fog are still very bad (I had attributed these to my chronic pain and fibromyalgia which are still contributors) and cannot wait until that changes! At this point there is absolutely no way of my telling because I rarely sleep well and am always in pain anyway. I sleep well about every ten nights or so but much of that is simply because I am in constant pain and it hurts to lie down. While I definitely do NOT wish for glutening symptoms I wish there was some indication if I have accidentally ingested hidden gluten or been cross contaminated. Maybe if my wedding ring glowed or something...

[kwylee]

I think the an old misconception is hopefully being put to pasture, that being gluten intolerant or having celiac disease must necessarily mean projectile D in all cases.

Everyone is different in the way they react to gluten, and exhibiting a flare up of psoriasis may indeed be your body signaling that you have ingested something your system can't handle. If you are like me, you may see other clear indicators of having been cross contaminated, the more your system gets back to what I think of as "the baby state". That's the way my body may have been before I started ingesting the offender(s)as a baby; pre-inflammation. But if you continue with the skin disorder and have been as careful as possible, you may still need to address other food sensitivities, such as dairy and/or soy, nightshades, etc.

One day at a time, you're on the right path!!

[kwylee]

I understand what you mean about being asymptomatic. I have no clue whether I have been glutened or not so I am excruciatingly careful. Nothing obvious at all happened when I was eating lots of gluten prior to my biopsies. I have been gluten-free nearly five months and insomnia and brain fog are still very bad (I had attributed these to my chronic pain and fibromyalgia which are still contributors) and cannot wait until that changes! At this point there is absolutely no way of my telling because I rarely sleep well and am always in pain anyway. I sleep well about every ten nights or so but much of that is simply because I am in constant pain and it hurts to lie down. While I definitely do NOT wish for glutening symptoms I wish there was some indication if I have accidentally ingested hidden gluten or been cross contaminated. Maybe if my wedding ring glowed or something...

So sorry to hear you are still in so much pain after five months. I know it sometimes takes awhile to start to feel well and everyone is different, but I wonder if you are reacting to more than gluten. Plus, I see you have other health issues, such as the back trouble, which give you pain, but the brain fog and insomnia are clearly the glowing wedding ring you need as a signal. Have you considered looking at everything you eat, and possibly doing a simple elimination diet to test which foods may be causing you trouble in addition to gluten?

[zimmer]

I have been gluten free for a little over three weeks now. I guess I was what you might call asymptomatic. At least I didn't THINK what I had were symptoms. I thought the fatigue, foggy headedness, and aches and pains were just part of getting older. I am almost 57, and I was thinking that if I feel this bad now, what will it be like at 70?

I actually DID have some digestive issues, but I thought I had brought on those troubles myself. I am a musician (just an excuse, really) and I used to drink rather heavily. I never really had D, but I would go three times every morning, with things becomming "looser" each time. This had been going on for so long that even after I stopped drinking completely, I figured I had done permanent damage.

Now I find it was ALL because of gluten. I now go once each morning, and things are more "normal". I have energy like I haven't felt in twenty years. The insomnia is GONE - I am sleeping 7 or 8 hours a night, without even waking up to go use the bathroom. My head is clear. My vague aches and pains are gone.

I realize that I am lucky to have had such mild symptoms compared to some, and such fast results when going gluten free. But there is a drawback. How can an asymptomatic person even tell when they have been glutened?

I bring this up because the psoriasis on my right hand has started flaring up a little. And it turns out, it was the Lay's Potato Chips (I think). Back when my Mom was alive, she could eat Lay's. (She had Celiac too.) But yesterday I saw on the web that Lay's cannot guarantee there isn't cross contamination in their chips.

So, although I'm not crazy about the psoriasis flare up, it did signal me that there was some gluten getting into my system somehow.

Question: is there any OTHER way for an asymptomatic person to tell? I know even though I don't feel it, I am doing damage every time I get glutened. Do I just have to learn to be more careful, or is there some other way to tell?

I'm glad you are feeling better!

Your symptoms sound like mine - minor. However they are identifiable symptoms. As you heal, the symptoms should clear up. If you get "glutened" some of them will return. It will take time for you to recognize which ones return, how quickly they show up after a glutening, and how long it takes for your system to return to normal.

When I first joined this board I considered myself asymptomatic. But then, that would mean NO symptoms, and as I learned more and started healing, I realized that wasn't true. One by one all the little things that I had just gotten used to and learned to deal with, that I didn't really recognize as symptoms, disappeared. I feel so much better now.

I have had the same question as you - how do I know if I'm doing it right? I decided to handle it as if I were very sensitive until I figured out what worked for me: I have avoided gluten as if I were highly reactive / sensitive, cleaned out the house which is gluten-free except for a loaf of sandwich bread for the kids, and adopted a meat-veg-fruit diet with very limited processed (boxed) foods of any kind. After 4 months, my blood work came back into the normal range, so I guess this has been the right approach for me. The doc said to recheck in 6 months, then annually if all looks good.

Good luck with your new diet and lifestyle - it can be a big change with lots of challenges, but it's all worth it in order to feel great and be healthy!

[love2travel]

So sorry to hear you are still in so much pain after five months. I know it sometimes takes awhile to start to feel well and everyone is different, but I wonder if you are reacting to more than gluten. Plus, I see you have other health issues, such as the back trouble, which give you pain, but the brain fog and insomnia are clearly the glowing wedding ring you need as a signal. Have you considered looking at everything you eat, and possibly doing a simple elimination diet to test which foods may be causing you trouble in addition to gluten?

Thanks for your suggestions! My pain mostly stems from an accident I had nearly four years ago and has not changed much. Surgeons have all told me that the nature of the injury (discs and so on) is such that it will likely never heal - there are anular tears and such. Not only that but I have degenerative disc disease which will progressively get worse. This has nothing to do with my having celiac. However, where it is related is my fibromyalgia which compounds things. Those with FMS feel up to five times more pain than those without - even a scratch can cause pain whereas in someone else it's just a scratch. We have far less serotonin in our bodies and thus the pain receptors are dramatically increased. So, the pain from my discs feels that much more intense. Now, that is the part I cannot wait to heal as I know it is possible physiologically.

I have not noticed increasing or decreasing pain with anything I have eaten at all - at this point I see absolutely no association. The pain is constant with very few changes. I have cut out aspartame per my chiro's recommendation for the FMS and am now cutting out soy. Then I think I may need to start an elimination diet to see whether that makes a difference. Fog and insomnia are also really associated with FMS - they are amongst the top symptoms out of a list of about 60. So, with fibro AND celiac fog and insomnia - yikes! But when I sleep well I have all sorts of energy - I cannot be stopped! According to my bloodwork I am not anemic or anything but am getting my physical in a month for all kinds of bloodwork and a bone density test.

I do keep a diary of what I eat and so far absolutely no correlation but as I said above, it is impossible to tell because my pain fluctuates very little - only when I overdo things physically (i.e. bend) I feel it immediately.