Degrees Of Gluten Intolerance?

[scoutfinch]

I have relatively "silent" celiac symptoms - low iron, maybe depression and irritability (who can really tell? ) I don't get any immediate "feedback" when I ingest gluten, like so many people who have the terrible GI effects. I asked my gastroenterologist about it - at first he told me to follow a "strict" gluten-free diet, and also told me that he thought oats would be okay. This seemed contradictory to me, and I asked him about it at the next visit. The crux of his response was that I probably didn't need to worry so much about the minute contaminant levels of gluten, since I didn't get the diarrhea and other effects. I said "but isn't it still doing the same damage to my small intestine?", and he said that he didn't believe so. He also said that if I thought I was going to die without a slice of pizza, then to go ahead and have one - it just would probably set my healing back three weeks or so.

Have any of your doctors ever indicated something like this to you? That possibly people with fewer symptoms are somehow damaged less by the same amount of gluten as people who are highly reactive?

[lovegrov]

"That possibly people with fewer symptoms are somehow damaged less by the same amount of gluten as people who are highly reactive?"

From what I've read, the problem is that nobody REALLY knows. There's a chance that this is true, just as there's a chance that people who don't react are taking the exact same risk of cancer, other autoimmune conditions, etc. I don't react much but I choose to stay as gluten-free as possible without driving myself absolutely crazy.

richard

[Rikki Tikki]

I would have a hard time believing that a small amount of gluten won't be harmful. All that I have learned is there is a lot of silent damage. Have a piece of pizza if I can't live without it? If the thought of cancer and all of the other problems don't scare you, I think that doctor's attitude should.

But then again, it's just my thoughts....

[KaitiUSA]

There are not degrees of celiac...celiacs have to stay away from gluten. I did not get immediate reactions at first but being off of gluten made me more sensitive now I react badly.

Some doctors just really don't get celiac. It will set your healing back and if you keep setting your healing back then what's the use of the diet?

I know people who were silent celiacs with worse damage to their intestines then I had. I think it definitely a big risk to keep cheating because you put yourself 40-100 times more likely to get cancer ,and other serious things.

Ask your doctor if he was a celiac what he would do...I highly doubt he would take his own advice at the risks involved.

[ianm]

Since there are so many unknowns the only safe thing to do is avoid gluten. You will get nailed with gluten from time to time no matter how diligent you are. If you keep yourself healthy you will minimize any damage and recover faster from any accidental poisoning. It's really the only thing we can do.

[rmmadden]

I think I was a silent celiac person. For 36-years I ate whatever and whenever I wanted. I had a few small bouts of stomach issues or the big D but nothing too frequent. Then a case of food poisoning hit me last August and everything came to a boil as they say.

I feel that Gluten is harmful to a celiac disease patient no matter what the reactions/symptoms are. Your body doesn't digest it and the immune system suffers from it. Personally I don't see any rationale to cheating on the gluten-free diet when the associated risks are so high. Cancer, etc. is nothing to gamble with. Keep your chin up and stay the straight and narrow is the best thing you can do for yourself (and your family).

Best Of Luck!

Cleveland Bob

[scoutfinch]

I guess I'm not really so interested in cheating on my diet as I am in being able to worry less about every little molecule of gluten, whether from a grill that's been used to cook pancakes or from caramel coloring or crumbs in the peanut butter. Sure, I'd love to have a bagel or a warm sourdough baguette, but mainly I just want to be able to not be so hyper-vigilant about everything.

[KaitiUSA]

Yes you need to be concerned about getting a separate toaster, peanut butter jar, etc. That can cause damage. If you make pancakes on something just clean it before making something gluten free. It really gets so much easier...it's just a normal thing in life when you get used to it. It's worth it...hang in there

[Wandering Hermit]

I guess I'm not really so interested in cheating on my diet as I am in being able to worry less about every little molecule of gluten, whether from a grill that's been used to cook pancakes or from caramel coloring or crumbs in the peanut butter. Sure, I'd love to have a bagel or a warm sourdough baguette, but mainly I just want to be able to not be so hyper-vigilant about everything.

That is EXACTLY what I am dealing with. The idea that I'm making all this change and sacrifice and spending extra $$, and that I can still get hit and not even know it, and totally waste all this effort. I got my dog's dry dog food all over my hands this AM and just about freaked out. I don't even know if it has gluten, but my mindset now is - if I don't know, then it DOES. I'm sure this will get easier, but right now I am totally paranoid. I just want to wash my hands every 2 minutes, sit in a sterile room and eat fruit.

[KaitiUSA]

You do not have to worry about touching gluten unless you have DH or something. You can touch it just make sure you wash your hands good after handling that.

[tarnalberry]

There are things we can avoid and things we can't.

Crumbs in the peanut butter jar is more than just a molecule of gluten and IS too much to be ingesting. Same thing with most of those other sources of contamination - the grill and the caramel coloring (if not gluten-free) - you get more than just a molecule. But we can avoid those things. The trace particle left on someone's shirt after lunch even if they clean their hands that falls onto our hands, we can't avoid.

I agree, it is enough to induce paranoia at first. But with experience, you learn how to walk the line, without actually finding a sterile room to sit in and eat fruit! ;-) (Though I like the image!)

[skbird]

I definitely had a freak out about a month or two ago where anything I touched I was afraid of. The powder on balloons, the starch in a store-bought shirt, the soap in the restroom at work... etc. etc. etc. I was worried I'd be paranoid forever. I think it was all just sinking in. I am fine now.

I keep seeing stuff now that I would eat or use a couple of months ago but now wouldn't and think, wow, how was I so not particular at that time or whatever? Well, my awareness is just that much better now and now that I feel more in control of my environment I feel better.

You'll get there. It was a good 3-4 weeks where I was freaking all the time, it seemed. But now I'd totally forgotten I felt that way until I read your post.

Stephanie

[ianm]

If you keep at it you will end up feeling so much better that you will wonder what all the fuss was about. It eventually becomes a habit and you really won't give it much thought. Stick with it because it is worth the effort. I found it wasn't as big of a change as it may appear right now. You really don't sacrifice as much as you think you will need to. Plus I found that my grocery bill went down because I stopped eating processed crap and don't eat nearly as much as I used to.

[celiac3270]

I know what you mean....I'm also a little paranoid about this. Dog food almost always contains gluten, but you'll be okay as long as you wash your hands. If you find you get rashes or itchiness from it, then you should avoid touching it with bare hands--it won't damage your intestines, but you don't want your skin reacting all the time.

It will get easier.

[gf4life]

ianm,

I agree with everyone here about getting used to this new way of living. The longer you do it, the easier it will seem. I think at first (and occasionally latter on!) we have reason to be paranoid and freak out about gluten! I have been gluten free (for the last time) for about a year and a half, and last month my husband switched from oatmeal everyday to ZOOM! It is 100% wheat! I was freaking out about how careful he needed to be in the kitchen and such. Well at about the same time he also got very lazy with keeping the kitchen uncontaminated and surprise, surprise, all 4 of us on the gluten-free diet got sick. He then switched to grits! Yeah, 100% gluten-free!

I could handle the small amount of contamination in the kitchen from the oats. The kids and I don't eat it, but I don't stress out about the dishes being on the same counter waiting to be cleaned, etc. because the oats themselves are only contaminated with wheat. Enough in there to damage my intestines, but very little left after he eats it to make me sick from just being in the kitchen. He still would use his own pan and cooking spoons, etc. But with the ZOOM, every speck that flew out when he was pouring it, every speck on the spoon that he would set on the counter, every speck that was left in the bowl, that he would then stack with the rest of the dishes, and the list of contamination goes on! It was not only making me mentally stressed out, but I actually got enough gluten to get the DH rash! It takes more than a few particles for that to happen for me! All of the kids and I got our normal gluten reactions and now, more than 2 weeks later I am still suffering the after effects of it. I'm glad he switched to grits. I would like to say that the reason he switched was that he saw how sick it made us, but that is only a tiny part of it. See my husband is a bodybuilder and he loves to eat what the pro's eat, take the supplements they take, workoout the way they do, etc. He has a new DVD that he got at a bodybuilding show last month and he watched it. It follows Ronnie Coleman around for a few days. He saw that Ronnie eats grits with cheese and scrambled eggs every day. So my husband asks me "what are grits?" So I pulled my box of them out of the pantry and he said that if Ronnie eats them and they are gluten-free, then he'll switch to those! It works for me!

Anyhow, as far as what the doctor said about cheating, I don't know for sure if it would cause enough damage to intestines to cause the other health problems, but why risk it. I did have a doctor tell me that it is nearly impossible to keep my kids gluten-free. Now I know that we will occasionaly get contaminated, but I certainly am not going to KNOWINGLY feed gluten to myself or my kids!

And our food bill over the entire year has stayed about the same. We spend more on gluten-free products, but we eat out much less. We used to eat out at least 2 times a week, now it is more like once a month. So the money being saved by eating at home is being spent on gluten-free foods. Some months cost me more because I make large internet orders to stock up (and save on shipping costs), but then I spend less over the next few months. So throughout the year it comes to about the same.

God bless,

Mariann

[Holgate]

I had my first appointment with a dietician this week and even they don't know how coeliacs can be dealt with, many of them are still on a learning curve themselves as it is a relitivly modern thing.

However she did say there are diffrent types of coeliacs, the ones who really can't take anything with glutens in it and those who could tolerate some but as the problem progresses would fall into the first catagory.

The problem we have here in the UK is that you simply cannot go fully gluten-free, if you did you would starve as the vast majority of our foods have gluten in them, so for myself and many coeliacs we have to knock out as much as we can to slow down the deteriation rather than stop it in out tracks.

In the past few weeks I have found out just how difficult it is to eat out in the UK, and in a couple months I have to attend a confrence away from home and will have to take my own food supply because the hotels just don't cater for it. Even my works summer ball dosen't cater for coeliacs and there are two of us attending. we have decided to get together and make up our own menus to take with us! we shouldn't have to do this, but the UK is only just catching up with the thought of Diabeties let alone coeliacs.

[tarnalberry]

With the preponderance of "gluten free" wheat starch in Europe (thanks to the CODEX standards) I would encourage you to avoid foods that have those ingredients and go with whole foods that are naturally gluten-free - fruits/veggies/meats/naturally gluten-free grains. You really can get your intake of gluten very low, though it requires more cooking or food preparation on your own.

[ianm]

I don't eat any processed foods, just meat, veggies, fruit and stuff like buckwheat and the gluten free type of grains. Even when I have to travel I stick with those kinds of foods. I don't know how possible that is in the UK but I have had few problems in the US.

[Rikki Tikki]

The problem Holgate is that studies have shown that you can have a lot of damage done inside without knowing there is anything wrong even ingesting a small amount of gluten.

I would be very careful with this. I just don't trust that train of thought, but wish you the best!

[KaitiUSA]

I agree with Sally I don't trust that either...all celiacs need to avoid all gluten.

[Holgate]

yes but the problem is when your in a country like the UK which is only just getting to grips with diabeties let alone Coeliacs it is nigh on impossible to avoid all glutens because it is hidden in so many of our everyday foods. At the moment we have to slow the progress down rather than halt it. At the moment it just cannot be done unless we all decided to trot off to the otherside of the atlantic where the problem is better understood.

[Rikki Tikki]

Holgate:

What about natural foods? Fruit, vegetables etc.? It's just awful that it is so hard to find gluten-free food over there. It's difficult enough here, I can't even imagine. It seems like it would make a person not want to eat at all.

[KaitiUSA]

Wow I feel bad for people over there that have a severe allergy to wheat...how would the survive over there? I guess there is always fruits and veggies. Even here gluten is hidden under so much but their are choices of things to eat. Maybe they will get more updated with things the more and more celiac is diagnosed there.

[celiac3270]

The UK also accepts much higher levels of gluten as being gluten-free. Another reason to avoid processed foods.

[tarnalberry]

actually, the diagnosis rate, and time-to-diagnosis is much better in the UK than in the US. and there seems to be a higher awareness of what it is in Europe in general, according to studies, anyway. :-/ (we all know that studies can tell us anything!)

either way, the US is RIFE with hidden gluten - it's not just the UK, so we do feel your frustration - but naturally gluten-free, whole foods are naturally gluten-free, whole foods around the world. :-) additionally, some online searching will lead you to a number of UK gluten-free food sites that you can order from. you'll get there with some time! :-)