Celiac Disease

[thedman]

I was wondering if anyone

[Glennie]

ok maybe i don't understand celiac's disorder.. i don't think it makes you pee

[thedman]

This was not a pee accident. First time tha I have ever had a bowel accident.

[dlforever68]

Since my early days I have been dragged

[Dirty Diaper/Maxipad Lover]

I am wondering if anyone else has had issues similar to this caused by celiac. I am hoping that this is an isolated incident and not a sign of things to come.

I'm sorry to hear that you have Celiac. Although I don't have it myself, my mother does, and I can tell you that she's been told to remove all gluten from her diet by doctors, and has been eating only gluten-free foods for well over a year now. Unfortunately, years of eating loads of gluten with previously undetected Celiac disease has taken a toll on her, and she now almost always has to stick around a toilet after she's eaten until she's relieved herself, especially in the morning. The Celiac lead to another complication, which I believe is called "gastric dumping syndrome" that causes this.

This may or may not be a sign of things to come for you, but I would definitely mention it to your doctor, and hold off on further gluten consumption until you have it looked into. My mother didn't know she had Celiac until it had already ruined her stomach. She does not travel in the morning, and is effectively tethered to a toilet after her first meal of the day, and sometimes her second as well.

And now I will share exactly why I've mentioned in other parts of the forum that I don't want her to discover my use of diapers. This is someone who flips out and goes crazy because she has to use a diaper if she wants to take a vacation that involves a plane trip. Everyone around her is subjected to her complaining about this, not about using the diaper, but about the carbon footprint it leaves behind. If she found out I was using them as a "diaper lover," I would never hear the end of it, ever. The sad thing is, it would make life a lot easier if I didn't have to hide this, in part because I could probably help her find better diapers than she'd ever otherwise use. However, I'm not willing to give her something else to constantly complain about at every waking hour, and a few sleeping hours as well. At least you had a diaper on, even if it's not what you wanted to use it for, and even if it's not comfortable in the slightest after it was used. (I don't blame you for feeling this way, I could never willingly defecate in my diapers either.) I can only imagine the mess being far worse if you weren't diapered, especially since I've lived through hearing the words "shit" and "bathroom floor" more times than I care to remember.

Again, I encourage you to talk to your doctor about what happened before consuming gluten again. It is possible to worsen Celiac by continued gluten consumption, and possible that it's worsened itself since you last were examined. You may reach a point where you need to go completely gluten-free, but that's a decision for you and your doctor. If you do go completely gluten-free, try to find alternatives that use so-called "ancient grains" instead of the more common ones that typically use corn/potato starches, both of which turn to sugar in your blood stream more quickly. (At least that's what I hear being bellowed through my household at all hours of the day to no one in particular.) I'm sorry to hear about what you're going through though.

[Bettypooh]

Not Celiac, but this may be helpful to you. I have an odd food sensitivity- potatoes- and I know my symptoms all too well so I can tell if I've eaten any by mistake. Once I discovered this, I cut potatoes out and was fine. A few years later and I'm getting the symptoms, usually after dinner- WTF? So I think back; no possibility of potatoes, I've been eating only stuff at home. I re-read the ingredients on some prepackaged foods I've been getting- no potatoes, but I see "modified food starch" and wonder. Fire up the PC, google it, and voila! Yep, it 's a food filler made from potatoes with no nutirtional value- it just adds volume to food My sensitivity has gotten so bad I can't eat fried chicken from a lot of places because the fryer oil was used for potatoes and not changed often enough. Gout took my beef away this year, so chicken matters big-time now.

So read ingredient labels and do the research- you might find some innocent-sounding ingredient has gluten involved in it. Check everything new that you try. Ask questions of the cook/Chef, not the serving staff, and tell then you may die on the spot if they lie about the food's content (that gets you true answers). Yes I've been lied to several times because they thought they knew but didn't. And take your reading glasses when you go shopping if you need to. After awhile it becomes habit and youy become an expert on your particular dietary problem which impresses the doctors

Bettypooh

[Dirty Diaper/Maxipad Lover]

Not Celiac, but this may be helpful to you. I have an odd food sensitivity- potatoes- and I know my symptoms all too well so I can tell if I've eaten any by mistake. Once I discovered this, I cut potatoes out and was fine. A few years later and I'm getting the symptoms, usually after dinner- WTF? So I think back; no possibility of potatoes, I've been eating only stuff at home. I re-read the ingredients on some prepackaged foods I've been getting- no potatoes, but I see "modified food starch" and wonder. Fire up the PC, google it, and voila! Yep, it 's a food filler made from potatoes with no nutirtional value- it just adds volume to food My sensitivity has gotten so bad I can't eat fried chicken from a lot of places because the fryer oil was used for potatoes and not changed often enough. Gout took my beef away this year, so chicken matters big-time now.

So read ingredient labels and do the research- you might find some innocent-sounding ingredient has gluten involved in it. Check everything new that you try. Ask questions of the cook/Chef, not the serving staff, and tell then you may die on the spot if they lie about the food's content (that gets you true answers). Yes I've been lied to several times because they thought they knew but didn't. And take your reading glasses when you go shopping if you need to. After awhile it becomes habit and youy become an expert on your particular dietary problem which impresses the doctors

Bettypooh

Bettypooh, this is excellent advice, and the only reason I didn't mention it is that I figured thedman was probably already aware of it. I'll add to your point about "modified food starch" and mention that it's actually not only potatoes, but frequently corn as well. Having an aunt who developed a severe corn allergy a few years back, I'm also aware that corn is probably the most difficult food in to avoid in the US, because it's commonly used as filler in everything imaginable. (Potatoes are of course the alternatives to it, so a potato allergy/sensitivity is equally problematic.) Oh, and because corn is frequently used as a substitute for gluten, it's almost impossible to cook a meal that both my mother and my aunt can eat without having a few extra dishes because of their respective dietary restrictions.

Gluten hides in a lot of foods as well, so reading labels is incredibly important, as is knowing what vague ingredients may be "code words" for gluten. For example, soy sauce is the worst thing anyone with Celiac can eat, because it's literally soluble gluten. Beer is barley and oats, which are also soluble gluten, and just as bad for someone with Celiac or a gluten allergy. Most pre-packaged foods--especially the well-known brand name ones--use gluten as a filler, so reading labels is absolutely critical for anyone with Celiac disease. Breads and cakes are obvious culprits, but candy and Ice Cream may contain gluten as well. (Sometimes just as filler, sometimes because it's made in a facility that makes a product with gluten in it.) Here's an example of something that would be just as harmful to Bettypooh as it would to my mother: French fries. No, not all french fries in my mother's case, but french fries that are either fried in the same oil as breaded products such as onion rings, or french fries that use gluten as a filler as part of there preparation. (I'll never understand that last one even though it's apparently a thing. When I order french fries I want to taste potato, and there's no reason for it to be there.)

Bettypooh hit the nail on the head about reading the ingredients in prepackaged food products. Gluten hides in a lot of them so if you haven't done so already, keep a careful eye on what ingredients are in your packaged foods, and if you're not sure what something is, definitely look it up. "Modified food starch/starches" sounds harmless enough, but as Bettypooh and my aunt found out, that usually means corn and potato starches that they're allergic too, and gluten can go by similar seemingly harmless names as well. Bettypooh's point about asking about ingredients at restaurants is important as well. Smaller mom & pop operations usually have servers who know the menu or who will automatically offer to ask the chef if you mention that you have a medical condition, if they don't offer, politely ask them to go ask the chef if something is gluten-free. I've seen servers who've thought something was, checked with the chef to be absolutely sure, and found out that it wasn't either because a supplier for a certain food changed, or because they forgot about a certain ingredient that had gluten in it. In some cases my mother will politely request that something be omitted from her meal, such as a topping or sauce that uses gluten, provided that this can be done. (As long as it's doable, most restaurants will do it.) Be extremely careful at chain-restaurants though, some are more knowledgeable than others about gluten sensitivities. TGIFridays stands out as one chain that has its menu clearly marked for items that can modified to remove gluten, but not every chain does that.

[thedman]

Well thanks for the replies so far. I have certainly become aware of the many hidden ingredients in food, gluten being a big one since being diagnosed. One major thing that I have learned is that gluten is an amazing binding agent and as such is used in the majority of commercially produced foods, IE they dont grow by themselves they come from a factory of some sort.

[Baby Brian]

My sister has this, and needs to be gluten free too. she once told me that while eating regular food, it was like her body had a certain level of resistance (albiet small) to the gluten.

[dlsmd]

i dont suffer from Celiac disease but my sister does and if you do i recommend that you do not eat any gluten (that includes making sure that the restaurants you go to are gluten and that includes all cooking surfaces [deep firers,toasters,grills] basically any thing your food touches must be cleaned or only used for GF food[the latter if you can not eat any gluten])!

Edited September 25, 2015 by dlsmd

[Three Rivers]

I just had a close relative die from this horrible disease.

[delta1]

Unfortunately today for the first time ever I experienced what I am pretty sure was a celiac related incident and had literally no warning. I will admit that it was my own fault as I decided to have pasta for lunch as my gluten intake had been literally zero for the last week. I was driving home , and roughly an hour and a half after lunch I had a very painful cramp that screamed pull over. By the time I was out of the truck and stepping into the bush it was already too late and control was not an option. For the first time in my life I was actually thankful for my urinary incontinence as that poor diaper did an admirable job of saving my clothes.

Ok, from what I recall from med school, it indeed is the case that with celiac disease you should COMPLETELY avoid any Gluten in your diet... It doesn't help that you're one week off all gluten and then add in a pasta meal... that will cause havoc in your small intestine.

[Baby Bonnie]

I am wondering if anyone else has had issues similar to this caused by celiac. I am hoping that this is an isolated incident and not a sign of things to come.

I too have been on the road when the urge to go came upon me, at that time I was miles from a rest station or even a place just to pull over. By the time I did find a place to get the car over to the side of the road I had made a mess and at time I wasn't in a diaper.

[delta1]