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[bmzob]

I am asymptomatic when it comes to gluten. I just found out I had celiacs about three months ago. My doctor told me I have it to a very mild degree. It's only blunted the villi in the first couple of inches of my duodenum. I have other issues too that I found out about years ago (signature).

My doctor said that because I have it to such a mild degree I could afford to cheat once a week if I wanted to. However he also said that as human nature goes, one day would turn into two, and two to three, etc, etc.

Even though he did say this, I have not cheated since starting this diet two months ago. I check labels and make sure theres no gluten in anything I eat. When I go out, I make sure theres no sause on anything I order. However, I don't really worry about what its being cooked on or with.

I did get french fries one day and I had really bad bloating. I got naked wings with nothing on them one day (i think there may have been something on them though) and I got a really bad headache and I walked around almost like I was in a fog...I couldn't really concentrate. So I think I may be developing symtoms.

I did not get new silverware or cooking utensils/pots/pans etc. I did not get new condiments to avoid cc. I did not look at any of my bathroom products - shampoo, soap, makeup, etc. I have not gotten any of these symtoms that I think I may be developing from any of this stuff (at least I don't think I have).

My question...do I need to be extreme with removing gluten from my diet/life? I know not to eat it. But do I need to make sure it's not cooked on anything that had/may have gluten on it? Do I need to get new cookware? Do I need to check my bathroom products and get gluten-free ones?

Thanks somuch for your help!

[cathzozo]

I am asymptomatic when it comes to gluten. I just found out I had celiacs about three months ago. My doctor told me I have it to a very mild degree. It's only blunted the villi in the first couple of inches of my duodenum. I have other issues too that I found out about years ago (signature).

My doctor said that because I have it to such a mild degree I could afford to cheat once a week if I wanted to. However he also said that as human nature goes, one day would turn into two, and two to three, etc, etc.

Even though he did say this, I have not cheated since starting this diet two months ago. I check labels and make sure theres no gluten in anything I eat. When I go out, I make sure theres no sause on anything I order. However, I don't really worry about what its being cooked on or with.

I did get french fries one day and I had really bad bloating. I got naked wings with nothing on them one day (i think there may have been something on them though) and I got a really bad headache and I walked around almost like I was in a fog...I couldn't really concentrate. So I think I may be developing symtoms.

I did not get new silverware or cooking utensils/pots/pans etc. I did not get new condiments to avoid cc. I did not look at any of my bathroom products - shampoo, soap, makeup, etc. I have not gotten any of these symtoms that I think I may be developing from any of this stuff (at least I don't think I have).

My question...do I need to be extreme with removing gluten from my diet/life? I know not to eat it. But do I need to make sure it's not cooked on anything that had/may have gluten on it? Do I need to get new cookware? Do I need to check my bathroom products and get gluten-free ones?

Thanks somuch for your help!

Hi Britni-

I haven't been doing this for too long, but I'll let you know how it's going. I thought that I wasn't too sensitive to gluten until I had been off of it for several months. There are annoying symptoms I used to have that I just thought were part of being me - itchy skin (with or without obvious rash), headaches, sinus congestion, and gastro issues. Being gluten-free quickly fixed the gastro issues, but the other things have improved so slowly that I never even noticed they were better until I got glutened, and then I realized how many things are effected. And I am hypothyroid, and for the first time ever my TSH levels are dropping instead of continuing to go up and up and up. That is pretty amazing to me. The auto-immune response can damage so many different parts of your body. It's just not worth it to not be careful. There was a link to an article posted somewhere on this forum about cognitive decline being caused by celiac. That makes me want to be as gluten-free as possible.

I would say to be as careful as possible with food. Eat out as little as you can, although when you have special social requirements, go ahead and eat out. If possible go to a place with a gluten-free menu or go to a nicer restaurant where the wait and kitchen staff actually have a clue. I often called ahead to begin with, and I sometimes still do, depending on the restaurant.

At home, I bought a toaster oven, so I can clean it out well if I have any concern that something gluten-y somehow got in it (husband). We do not do any cooking with any gluten containing food at home, but my husband does have his own loaf of bread and his own waffles. I did not buy new pots and pans, but I don't have teflon pans. I would want to replace teflon pans. I also did not replace cutting boards, but that is because we have all plastic cutting boards, not wood, and they go through the dishwasher. I did replace wooden spoons.

I don't worry too much about skin and personal care products. But it turns out that the shampoo I usually use is gluten-free anyways, and I don't wear makeup so that's not a big deal. But if you take medicine or vitamins, check those.

I, too, thought a lot of the precautions people take were a little overboard when I first began, but I, like so many others, have realized how little it takes to make me sick now that I'm finally healthy. I also have really enjoyed learning how to cook on my own. Since eating out is so hard, I've developed a whole new set of skills. Furthermore, eating is now cheaper because I eat our so much less and cook from scratch.

Good luck!

Catherine

[Guest nini]

there is no such thing as just a mild case of celiac, either you have it or you don't, there is an analogy floating around the board that I like, it's like being pregnant, you either are or aren't, there isn't JUST A LITTLE BIT PREGNANT... nope.

so, YES you have to be extreme about it. You cannot cheat even a little, and for your Dr. to suggest that is just irresponsible and reprehensible. I get really angry at ignorant Dr.s that continue to spread this kind of misinformation. The longer you are gluten-free, the less gluten it will take to make you sick. Yes you have to check your personal care products, yes you need to replace non stick pans and yes you need to have a separate toaster, and yes you need to get rid of your wooden spoons and replace any wooden cutting boards. If you are sharing house with someone that eats gluten then keep all the old stuff for them and have a separate area for your gluten-free stuff. Yes it is that important. Yes in the beginning I thought it was extreme too, and thought I didn't need to do that, but I do. I've even gotten glutened from a contaminated collander that hubby used to drain his gluteny macaroni noodles in. Even after it went through the dishwasher, it still had gluten particles trapped in the holes.

oh and even if you aren't having any symptoms, you are still doing damage.

[tarnalberry]

many people are asymptomatic, on the outside. unfortunately, you're still getting damage on the inside, which means you're still in an autoimmune reaction state, you're still getting inflammation, and you're still increasing your risks for cancer, osteoporosis, and secondary autoimmune conditions, unless you completely eliminate gluten. it's harder if you don't have that catch, but you really need to be as vigilant as you can be about eliminating all sources of gluten in your diet.

I know it's frustrating, especially when you don't have symptoms, but think of it like this: people go for years and years without knowing they have parasites sometimes. would you want to ingest a little bit of parasites because you wouldn't notice? no - because they're still doing bad things internally you don't know about (including robbing your body of needed nutrients). same deal here.

[kbtoyssni]

Yes, you need to be dilegent about keeping gluten out of your diet! What your doctor should have said was that you only have mild damage so far. Which means you're lucky - you caught it before you got really sick. I'm sure if you keep eating gluten you would keep wearing away more intestine and in a few years you would be very sick and, as your doctor would put it, have a "bad" case of celiac.

Although you may not feel symptoms, eating gluten will lead to health complications down the road. Things like cancer, other autoimmune disorders, neurological problems, etc. You may even find that you do have some symptoms and don't realize it because it seems normal to you.

Gluten free isn't so bad. It's a lot of information at first, but after a few months you'll have the diet down and it won't be so hard.

[Ursa Major]

Britni, I can hardly believe that your doctor actually told you, that since your damage is not too bad yet, it is okay to cheat once a week! If you would actually do that, you would never heal, but keep getting worse and worse, until you'd be really sick. If you would cheat once a week, you might as well not bother with the gluten-free diet at all!

I am glad you didn't listen to that ignorant, dangerous advice, and stick to being 100% gluten-free. Now you need to go all the way, and make sure cc doesn't happen, and go through your personal care products as well, and replace any that contain gluten.

That 'fog' you're describing that you got after eating the wings is what we call 'brain fog', and it is definitely a sign of being glutened. That shows you that damage doesn't just occur in your intestines when you ingest gluten, but elsewhere as well, including the brain.

[bmzob]

thanks so much for all of your replies...i really appreciate it.

i'm not planning on ever cheating intentionally b/c i feel that i'll never give my intestine time to heal and it will just keep getting worse and worse.

but, do i really need to make sure bathroom products don't have gluten in them? It's not like i'm ingesting that stuff? I don't understand how that could effect me?

[Fiddle-Faddle]

I'd bet that your ulcerative colitis is actually your celiac symptoms--you're just masking it with the medication, but the damage to your villi will continue despite the medication unless you don't cheat

[bmzob]

I'd bet that your ulcerative colitis is actually your celiac symptoms--you're just masking it with the medication, but the damage to your villi will continue despite the medication unless you don't cheat

if i have actually had celiacs since before i got my ulcertive colitis and the colitis is part of the celiac symtoms...then i've had celiacs for 12+ years...why do not have any symptoms and why is the damage only to the first few inches of my duodenum in my small intestine. If according to you, I've really had celiacs for that long....why am I not malnourished and deathly ill...because trust me I've eaten gluten in abundance my whole life.

plus i've had biopsies done all along my GI tract since I was younger to make sure it couldn't be anything else...and they never found any damage other than the mild colitis until recently....and I have had quite a few of these biopsies done and nothing was ever abnormal

[Guest nini]

you were probably "pre celiac" gluten intolerant, meaning not full blown celiac yet but the UC was a symptom. A precursor if you will. I wasn't dx'ed until I was 34 and ate gluten all my life but looking back I've had symptoms of it since birth. The blunting of the villi is the END STAGES of Celiac. Not the beginning. So... that being said, yes you could have been gluten intolerant since age 12 and the UC was just a warning of something bigger to come.

[LKelly8]

I like this celiac FAQ. . . Open Original Shared Link

"A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications."

"Other complications" are a good reason to be careful, especially Open Original Shared Link

Also refractory celiac sprue.

And cognitive decline. (Imagine permanent brain fog).

And osteoporosis.

All without "major" symptoms or "major" intestinal damage. It's called silent celiac and it may be more deadly than it's louder twin.

I have "mild" celiac too. I wasn't all that careful about personal products at first. I didn't see how any of it could somehow magically migrate to my intestine! . . . until, I noticed a smuge on the lip of the glass I was drinking from - I looked at my finger and saw a smudge of color there too. It was my gluten containing eye color that had come off while I was rubbing my tired eyes at the end of the day. Would that tiny amount cause symptoms? Nope. Probably not. And I might still be contaminating myself, and without knowing it, increasing (however slighty) my already higher than average chance for cancer, infertility, osteoporosis and other autoimmune diseases.

It's easy to go crazy and start seeing hidden glutens everywhere . But it really is important to never knowingly ingest gluten. And that includes possible accidental ingestion. It's up to you to decide where to draw the line . . .

I'd bet that your ulcerative colitis is actually your celiac symptoms--you're just masking it with the medication, but the damage to your villi will continue despite the medication unless you don't cheat

I don't think you can mask celiac symptoms with UC medications. Although I have wondered if immunosuppressant medications, like 6MP for UC or MTX for RA, might mess with the blood test results.

(all those acronyms can't be good for you! LoL)

[kbtoyssni]

but, do i really need to make sure bathroom products don't have gluten in them? It's not like i'm ingesting that stuff? I don't understand how that could effect me?

Yes, you do need to use gluten-free personal care products. Have you ever accidently gotten shampoo in your mouth? When you put lotion on your hands, you will then touch everything in your house including things in your kitchen which makes it easy to accidently ingest some. Do you ever touch your hair or face during the day? This would have the same effect as using gluten-lotion. I also occasionally bite my nails or chew on a pen cap so if my personal care products had gluten I'd likely be ingesting them in these cases, too. It's more of a precaution to use gluten-free products. I don't think it's worth the risk to have any sources of gluten in my house.

[Fiddle-Faddle]

bmzob, I'm familiar with the term, "idiopathic," but not "audiopathic." What is "audiopathic?"

[bmzob]

bmzob, I'm familiar with the term, "idiopathic," but not "audiopathic." What is "audiopathic?"

i'm not exactly sure and i may have it spelled wrong but thats how it sounds. i was diagnosed w/the hepatitis when i was younger so it never really worried me and i've never done alot of research on it like i have this. the main jist of the disease is that my body thinks my liver should not be there. so my white blood cells attack it. they have no idea where i got it from and in most cases of it they never find out where it came from. it's not genetic or hereditary. its most common in women and those that find out they have it are normally much older...like in their 40s or so. By then they have to change their diet and medications may/may not help.

Mine was caught when i was seven...i had really bad stomach cramps from it. My primary care doc said it was a virus like 7-8times before my mom told him she wanted tests done. When the tests came back we had to go to childrens and get liver biopsies and all that. I had sirocsis(sp) of the liver at the age of seven. They put me on prednisone and i was on that until i was seventeen, but by then it was a very low dosage, five mg every other day. they talked about putting me on mp6 or something like that can't remember exactly, but they decided to just take me off of it and see what happened. my liver enzymes have been in remission now for almost five years w/o medication.

[Rusla]

Cheating...hmmm I guess it depends on whether you worry about things like pernicious anemia, stomach cancer, colon cancer, etc. If you don't care about getting any of these things or having cancer would not bother you then go ahead and cheat, not something I would personally do. It doesn't matter whether you asymptomatic or not, damage is being done. There is no such thing as a "mild" case. You may not have as much damage as some of us but it will become more with prolonged eating of gluten.

[ianm]

Do I need to check my bathroom products and get gluten-free ones?

Yes you do. I have been very careful about the foods I eat but two weeks ago I started using a shampoo I had not used before and didn't read the label. I used this for a week with no ill effect but it caught up with me. The brain fog returned, DH, bloating and all of the other fun symptoms of celiac but could not figure out why. Just by chance I looked at the shampoo bottle and there it was in big bold letters HYDROLYZED WHEAT PROTIEN. It took about three days to get back to normal and I won't be making that mistake again.

[Fiddle-Faddle]

i'm not exactly sure and i may have it spelled wrong but thats how it sounds.

Okay, then, I'm guessing that they were calling it, "idoepathic," which is the word doctors use when they don't have a clue what is causing the problem.

You might notice that most of us have more than one autoimmune disorder, and that most of the doctors could not figure out what was causing these problems, and either called them, "ideopathic," or worse, told us that our (very real) symptoms were either in our heads or somehow self-caused. There has even been someone posting on this board because her baby had celiac disease, but the doctors didn't figure it out and accused her "Munchausen by proxy."

The point I am making here is that it is quite likely that your "ideopathic" diseases have their roots in gluten intolerance.

Again, look at the number of people on this board who have had various autoimmune disorders (thyroid, rheumatoid arthritis, lupus, Graves disease, diabetes) that improved or even disappeared when they were totally gluten-free. They all report that their symptoms return when they are accidentally "glutened."

I have far fewer autoimmune problems than you, but I am not the least bit interested in anything with gluten if I'm going to end up with even one more physical problem than I've already got.

I AM interested in learning how to make the foods I love with non-gluten ingredients, and thanks to this board, I can make cakes, cookies, breads, pastas, and pizza crusts that are indistinguishable to their gluteny counterparts. My gluten-eating family scarfs them down happily with no complaints (except from me when I want seconds and there aren't any!).

With this knowledge, does cheating even seem vaguely attractive to you?