Question For People Who Have Been Diagnosed For A Long Time

[Guest Kathy Ann]

I would like to hear from those of you who have been diagnosed as celiacs or gluten intolerants for a long time. Have you been able to keep up a good/excellent level of health overall and successfully avoid gluten over the long haul? Has avoiding gluten for many years been really difficult, or not too bad.

Also, are your symptoms any less severe now if you DO get some gluten than they were at the beginning? We will never be able to eat gluten safely again. But does your body get better at tolerating the mistakes when it has a good chance to heal over a long time?

I would also like to know if you veterans have specific wisdom you could share with us newbies that we need to know.

Thanks!

[tarnalberry]

I would like to hear from those of you who have been diagnosed as celiacs or gluten intolerants for a long time. Have you been able to keep up a good/excellent level of health overall and successfully avoid gluten over the long haul? Has avoiding gluten for many years been really difficult, or not too bad.

Also, are your symptoms any less severe now if you DO get some gluten than they were at the beginning? We will never be able to eat gluten safely again. But does your body get better at tolerating the mistakes when it has a good chance to heal over a long time?

I don't find the diet all that bad. It only gets bad when life gets really hectic and there are days upon days where I can't get home to cook or am expected to eat out places where I can't take the time to explain to everyone why I'm not eating. (Why must the always stack award ceremonies at the same time?!) Other than that, I think it's fairly easy, but I may find it easier than some because I'm a very adaptable person to many types of changes, and I like cooking.

Accidential glutenings, I'd say, are more noticeable, aside from the very minute cross-contaminations for me. Basically, I think, because you finally get used to being healthy, so you really notice when you're not! I will say that there was a difference, after a couple years being gluten-free, but not that it was 'less severe'.

(For reference, I've been gluten-free for 3 years now, and CF for about 2.5.)

[Kaycee]

Kathy Ann, I have not been diagnosed for long, only 9 months, but it feels so long. At first I was shell shocked, but I am at the stage where I am quite comfortable with coeliac. At times I can sort of forget, as it is not constantly on my mind, cooking tea is second nature again, nearly automatic.

My health picked up immediately, the silly thing is the last couple of years before diagnosis I thought I was feeling better than I had for years as I had lost a couple of stone, and had so much energy. Strange. I still find my tum is quite sensitive, not only to gluten, so I have had a few issues with D over the months. I know it is not gluten, as the reaction to gluten are so clear. Before diagnosis, I did not know what a gluten reaction was, as it was part of me, and the disease crept up on me so slowly, I did not notice how bad I really felt, even though I felt wonderful, apart from d. But I started to feel better almost immediately. I don't think my body can tolerate gluten any better now, it feels like it handles it worse when I make mistakes. But I don't, or try not to give it the chance to test that out

Now I am so in tune with my body and stomach and and nearly everything about me, that any little niggle I feel I have got a fair idea if it is gluten giving me grief or not. My health has improved and I am smiling again. And the fact I cannot eat gluten again is only a minor problem. At last I can say, as I used to be a foodaholic, food is not the most important thing in the world.

Catherine

[Ursa Major]

My health has been poor from the age of three. So, I have no idea what it feels like to be well. As a result of being ill so long (and abuse on top of that, plus a low stress threshhold due to Asperger syndrome), my adrenals are burned out, so I have zero energy right now. I hope that I can answer the question about whether I feel much worse when glutened in about a year.

I find that now my more obvious glutened symptoms like diarrhea are very delayed. For the D to show takes usually about six to seven days after glutening. Other symptoms are quicker to show up, like irritability and stomach aches, as well as being achy all over.

But overall, my symptoms aren't quite as bad as they were for about six months last year. More like they used to be before I went into full blown celiac disease. Which is why I never figured it out before. Especially with delayed symptoms. If your doctors are clueless, and you've never heard of celiac disease before, you have to pretty much stumble on celiac disease to find out, like I did.

Avoiding gluten is easier than it was at the beginning, since I can't eat anything that even resembles gluteny foods anyway. You can't go wrong with naturally gluten-free foods, anyway (unless somebody glutens you with cc, of course).

[gfp]

This is a bit complex....

The main point is that overall my health is much better .... 300 odd days a year I feel better than I ever did BUT when I do get glutened it hits me harder. That is I seem to have further to fall...... BUT overall the health improves faster....

My villi are I presume in good health and my nutrient adsorbtion good so when I get glutened its like being knocked of a pedestal BUT its much easier to climb back on it....

The feeling of being knocked off the pedestal is still bad.... but I KNOW I can climb back on AND I know my overall health is better so my body can concentrate on repairing the damage.

I think its easy to confuse this ... one just gets used to feeling lousy... or feeling good .. when your feeling lousy you don't really notice the ups and downs so much because you are overall lousy but when your good you notice straight away.

[kabowman]

I am more sensitive now than I was in the beginning. Avoiding gluten (and all my others) is not hard, especially now that I clean obsessively and keep separate counter areas. The kids know what they can and cannot do, they know which pans they can and cannot put their food into, etc. so the support of the whole family really is the best thing I could hope for; it has made the whole difference in my health.

I feel much healthier and no longer spend hours and hours in the bathroom every day plus all the other unhealthy feeling is gone. I still have other health issues, my allergies, tendonitis, etc. but overall, much better.

I enjoy cooking, my DH enjoys cooking, so we often spend one whole weekend day (or parts of both) cooking meats/meals we freeze for use during the week. Mostly because I only have time to cook a quick meal on Monday's and Friday's - the rest of the time we leave for activities too soon (the kids have activities on Monday, Tuesday, Wednesday, and Thursday evenings and Saturday mornings). For breakfast, I mix up sausage on Saturday and cook it all up and freeze it on Sunday for our weekday breakfast.

[tiffjake]

I have been gluten-free about a year, and my "glutened" responses are not easier, but I can notice them earlier, and know when they are coming. I have it down to a little bit of a personal science (what I notice first, and what will come next).

[happygirl]

My responses come on sooner, and harder, and are much worse, the longer I go (because, I believe, I go longer and longer in between glutenings, and really heal and feel great). Before dx, I was horribly sick all the time. I agree with GFPs post about it being complex because of this.

[kbtoyssni]

I've been gluten-free for 13 months. My health now is better than it has been in years. I haven't had any trouble avoiding gluten. I do have several things going for me: I live alone so no cross-contamination issues to worry about, I have amazingly supportive family and friends (even have a few friends who I will let cook for me unsupervised!), and I have always had a very positive attitude about my diagnosis. I know I owe my life to getting diagnosed which makes staying gluten-free really easy.

When I get glutened now, my symptoms are much less than when I first went gluten-free. I might have a week or two of feeling not-quite-right, but it's not usually enough to get in the way of my daily activities. I think I might be in minority on this, though.