Please Help Me Understand

[candg]

Hello all this is my first post. I have just taken the next step towards facing the possibility that I might have some form of gluten sensitivity. I have been reading and talking with people about this. I have to say I am feeling overwhelmed. I have many symptoms that fit with what I am reading. Already I am digging my heals in. I guess my first questions is why does it HAVE to be all or nothing? I keep hearing that if you go gluten free you have to go all the way or it does not make a difference. Is this true for everyone? Is this hypervigilance a requirement or simply a choice for some because of the symptomatic response?

[Shess0816]

Hello all this is my first post. I have just taken the next step towards facing the possibility that I might have some form of gluten sensitivity. I have been reading and talking with people about this. I have to say I am feeling overwhelmed. I have many symptoms that fit with what I am reading. Already I am digging my heals in. I guess my first questions is why does it HAVE to be all or nothing? I keep hearing that if you go gluten free you have to go all the way or it does not make a difference. Is this true for everyone? Is this hypervigilance a requirement or simply a choice for some because of the symptomatic response?

I think for most of us it is requirement. If what you have is Celiac Disease, every time you ingest gluten you are doing serious damage to your body. There are some people who do not show any symptoms and there are some people (like me) who have been absolutely miserable for years with symptoms prior to going gluten free. If you are a person who only shows mild symptoms or no symptoms at all, you are still damaging your body when you eat gluten. It is making it harder, or impossible, for your body to absorb proper nutrients, damaging your small intestine, increasing your risk of cancer and other diseases. Untreated Celiac can cause miscarriages, infertility, neurological problems, and a host of other horrible things. You can get all these things even if you aren't miserable on a daily basis with the stomach cramping, foggy head, headaches, joint aches, diahrrea... Going COMPLETELY gluten free allows your body to repair some or all of the damage caused by gluten. You should start absorbing nutrients properly again, you will feel better, and you will decrease your chances of getting some of those other issues. So, yes, it is a requirement for Celiac sufferers. I've kind of heard it described from my doctor as eating glass.... if there was a whole bowl full of shattered glass in front of you, knowing what it would do to your insides if you ate and swallowed it, would you still just eat a little bit? That's kind of what Celiac does... It's kind of like the little shards of glass. Whether you eat a little handful of shards or a big handful of shards, whether you just eat shards once a week, or all the time, they are still going to cause a significant amount of damage to your body. It's best just not to have any.

Now, if you haven't started the gluten free diet totally, you should go get tested by your doctor. Then, it wouldn't hurt to meet with a nutritionist to discuss the ins and outs of the gluten free diet.

I know it can be REALLY REALLY overwhelming! I totally understand where you are coming from there, but the thing is, if it's what you need to do to keep your body healthy and to make yourself feel better, then you have to do it. It's totally worth it!

There are a lot of great people on this forum who are more than willing to help out with some advice or to just listen when you need to vent. Just remember, you are not alone in this and we are all in this together! That's why we're all on here!

[psawyer]

Hello, and welcome to the board.

If you have an autoimmune reaction to gluten, that is, celiac disease (including the skin manifestation--Dermatitis Herpetiformis), then you must endeavor to avoid all gluten entirely. Once the immune reaction starts, it will continue for up to a few weeks. Cheating once a month completely defeats the diet, as the antibodies are constantly present.

Some individuals are intolerant to gluten, but do not have celiac disease. My niece (not biologically related) is such a person, and she can tolerate small amounts occasionally.

[GottaSki]

Great answers!

The only thing I'd add is that when I was diagnosed I mistakenly believed that once I was gluten free long enough to obtain healing, that it wouldn't be harmful to have a small amount of gluten here or there -- Boy was I wrong!

I am just over 8 months gluten-free and am happy to say finally obtaining significant healing - I've been accidentally glutened a few times and each time it wasn't with a large amount of gluten, but each time the reaction was quick and severe. I now understand just how fierce the autoimmune reaction for Celiac Disease is.

It was not difficult to accept 100% gluten-free once I'd been on the diet for awhile...can hardly remember the thoughts of eating gluten once healed.

Good Luck to you.

[brigala]

I started out by just reducing the gluten in my diet. Just major things... like using corn tortillas instead of bread, or rice instead of pasta.

After only a few days, I got so the idea of taking "just a bite" of something like a cupcake or a brownie made my stomach turn. This was because, once I was off most gluten, the difference in how I felt when I ate gluten was becoming obvious.

Then pretty soon I found myself checking labels to make sure that can of chili or that sausage didn't contain wheat as an ingredient. Because I felt crappy after eating, say, Nally's chili but Ok after eating one of the other brands that's gluten-free.

Then my husband brought home a loaf of spelt bread for me, because it didn't have wheat. I didn't know yet whether I had a wheat or a gluten problem. I ate a sandwich. I thought I was going to die. I ruled out spelt -- it contains gluten.

Then I started getting antsy when the kids got crumbs on the counter. I don't know whether I actually reacted to the crumbs, but I was starting to feel toward gluten like a "normal" person would feel toward rat poison. Think about how you would feel if you saw someone grating rat poison on your cutting board. Just for kicks, think about how it would further feel to see them push the board back in without cleaning it off, and then opening your silverware drawer underneath to find little green flecks of rat poison in your flatware. Or if they grabbed a block of cheese to grate for your salad right after they grated the rat poison. Yeah, that's how I feel when someone makes a sandwich on my cutting board.

Finally, I started looking at places like this and learning about all the sneaky ways gluten gets into the diet, and I cut out things like Rice Krispies and other foods that have small but still present amounts of gluten in them.

The entire process took me about 3 months I think. My GI tract started feeling better within the first week, and the other symptoms (fatigue, chronic pain, insomnia) didn't start clearing up until I'd made a serious effort to ditch ALL the gluten.

The moral of this story is this: Don't get too discouraged by the "all or nothing." After you've talked to your doctor about getting tested, If you can't stand the thought of being super vigilant, start cutting back and see how you feel. The desire to seek and destroy all traces of gluten from your diet may very well happen all on its own. It did for me.

-Elizabeth

[jackay]

For about a year I have suffered from diarrhea.

I have not had any bloodwork for gluten intolerance but did have an expanded GI panel that consisted of stool and saliva samples. The saliva test showed positive to grain glutens, milk (casein), soy ( protein) and egg (albumin). The stool samples suggested that I had a poor pancreatic output of enzymes, depressed intestinal antibody SIgA, and moderate overgrowth of bad bacteria. I had been taking a 16 strain probiotic for a few years so was surprised that I had any bad bacteria.

I tried different herbal supplements to get rid of the bacteria. I developed urinary pressure and pain from those supplements so had to discontinue taking them. Since I couldn't tolerate them, my doctor had me increase the probiotics from 1 capsule to 4 capsules a day. I figured with cutting out gluten, dairy, eggs and soy along with the large dose of probiotics, that my diarrhea would go away. I was off gluten, diary, eggs and soy for about two months, went back on it for a few days, and have been off it for another two months. Shouldn't my diarrhea be cleared up?

I am not consuming dairy, soy or eggs but do wonder if I am getting contaminated by gluten foods that my husband eats or by contaminated gluten products that I purchase. I was eating a lot of rice cakes and brown rice that did not indicate on the package that they were gluten free. I have switched to different brands. Another concern is that there are a lot of other foods that I cannot tolerate. I was only tested for four food foods and they were all positive. I mentioned to my doctor that I would probably test positive to every food and he agreed with that.

I have no appetite but do make myself eat three meals a day. I lost over 30 pounds and would like to gain a few back. I know I am not consuming enough calories but if I eat more, the diarrhea gets worse.

I have other health issues that I don't expect to go away until my gut is healed.

[jackay]

Are you able to get by with using the same cutting board, pots, pans etc. that others use? I am trying to eliminate all gluten from my diet but have the concern that I am getting contaminated. I just spent the weekend at my son's home and as expected there were gluten crumbs on everything. I washed all my utensils but am concerned that I got glutenized. Reading the paper at my own kitchn table this morning, I found crumbs from my husband. Yes, I am also feel like this is rat poison.

I am freaked out!

[jenngolightly]

Are you able to get by with using the same cutting board, pots, pans etc. that others use? I am trying to eliminate all gluten from my diet but have the concern that I am getting contaminated. I just spent the weekend at my son's home and as expected there were gluten crumbs on everything. I washed all my utensils but am concerned that I got glutenized. Reading the paper at my own kitchn table this morning, I found crumbs from my husband. Yes, I am also feel like this is rat poison.

I am freaked out!

Don't totally freak out. You do have control over your own house.

You can use some of the same items. For example, I use the same cutting knives, utensils, silverware, dishware, bakeware, and storage containers as the rest of the family. However, I prewash everything so in case there were crumbs on them, I've gotten rid of that before I use it. I did buy a second set of pots and pans because the ones we had were teflon, and gluten sticks on those scratches (same for cutting board). I also bought a different strainer because gluten sticks on those little holes. But I think you can use the same pots and pans if they are able to clean completely.

I do think you should suspect that there's gluten on everything if you live in a mixed-house OR if you go to someone else's house. I have my own cabinets in my kitchen so I feel a sense of security. But if I go somewhere else, I just bring my own food (and prewash their silverware and dishes if I eat off them).

Get that dh of yours on board! He needs to learn to clean up after himself. For now, you should always wipe down whatever surface you'll be cooking on or eating on. Obvioulsy, you should wipe down the area that you'll be reading from, too. Another hint I've learned. My dh and kids cannot eat gluten food anywhere except the kitchen/dining area - not in the living area or in front of the computer. Too risky for me!

It'll get easier. I know you've read that and it seams impossible, but it does. It really helps if dh is helping out.

[jackay]

My dh is definitely not on board nor do I think that will ever happen. I can honestly say that he would be able to give me up before he would give up gluten. He just told me he thinks I am blowing everything out of proportion. My daughter (no longer lives at home) feels the same way.

I hope using the dishwasher gets rid of gluten because I can't afford to buy all new cookware. I will also have to do all the cooking from now on and really do like the break when my dh cooks.

One major concern is how do I CLEAN! I feel I am just spreading the gluten around. Do I just need to start using a lot of paper towels for turning off faucets, etc.?

It sounds like some people can handle cross contamination of any brand of oatmeal, shelled nuts, etc. I just hope and pray that I am one of them.

I DO KNOW THAT I WILL NEVER KNOWINGLY EAT GLUTEN and I do hope this cross contamination issue gets easier.

[ciavyn]

I got news for ya, jackay - if you are cooking, he's not eating gluten! You know, my husband IS supportive, but only because he doesn't understand it. However I've made some awesome meals the last few weeks, and he doesn't know what is in them. Give him some time to adjust - let him have his snacks and his things in one area, and make your own space, cook good food, and he'll come around. Think of it this way: what if your coworker found out she was OCD, and suddenly insisted that all pens in the office must be BIC round pens! Every single one. No other one can be used! If she went around and interrupted everyone's day, threw out their perfectly good pens, forced them to buy and use new, and drove everyone crazy, everyone would think she was overreacting. But what if that same coworker, who had a need for all pens to be BIC in the office, changed only the ones at her desk, now and then bought BIC pens for the supply closet, gave BIC pens as gifts to her coworkers...now she just has a sweet, albeit odd, penchant, and people put up with it because it's harmless...and you know, those BIC round sticks write pretty well, come to think of it...

This journey will be trial and error, and you may not be able to do everything all at once. But work on you first, see what makes you healthy, and work within the needs of those around you AND YOUR OWN as much as you can. As you slowly make the transition, you'll probably find a lot less resistance.

Good luck - and hang in there.

[T.H.]

I wonder if going on an elimination diet might be useful for you? Just cut out almost everything down to the most basic foods, and keep track of how you feel when you start adding stuff back in after a few weeks.

I ended up doing that, essentially, and right now, while I'll admit I'm on very few foods (because I"m reacting to freaking EVERYTHING), all the bad stuff has stopped. It also might help you figure out if it's a food you're eating, or contamination, if you keep a food log with it (for my food log, I added in what pans I was using, what soaps, etc...).

One thing I'd suggest? Try foods that you NEVER eat as your trial foods. Buffalo meat, for ex, is very hypoallergenic, because they aren't fed hormones, antibiotics, etc.... and are still mostly grass-fed. It's the meat my dietician recommended I try first. I'd look for grains that are not in the grass family, if you have wheat issues, like quinoa or amaranth. That was one of my mistakes, at first, because I reacted to everything in the grass family, including sugar cane and rice! When I stopped trying the rice, things were muc better!

For veggies, while I don't know if these would be good for you, sweet potatoes, carrots, and avocados have a good pile of vitamins to get by on, and seeds are good for vit. e, if you can tolerate some.

Like I said, don't know if this would help, but it's non-invasive, and it just involves making some separate meals for yourself and keeping track of how you feel for a few weeks, so not that much work, when you consider the possible benefits, yeah?

As one word of caution on it? You have to watch for cross contamination in the weirdest ways with one of these - like morton's salt sometimes having cornstarch contamination - so it's often good to keep track of brand names on top of everything else, in a food log.

Good luck, and I hope you find out what's wrong!

Are you able to get by with using the same cutting board, pots, pans etc. that others use? I am trying to eliminate all gluten from my diet but have the concern that I am getting contaminated. I just spent the weekend at my son's home and as expected there were gluten crumbs on everything. I washed all my utensils but am concerned that I got glutenized. Reading the paper at my own kitchn table this morning, I found crumbs from my husband. Yes, I am also feel like this is rat poison.

I am freaked out!