Confusion About Levels Of Sensitivity...

[healinginprogress]

I understand that some people have much stronger physical/neurological symptoms than others...I seem to have some pretty strong reactions, myself. However, I know also that some people have celiac but have NO physical symptoms at all, however, if gluten is ingested, it is still damaging their intestines. So, I guess I'm just confused, because if you are celiac, and gluten damages your intestines...then won't ANY AMOUNT of gluten cause damage, regardless of whether you notice a reaction or not?

I guess I'm just confused about these "how vigilant do I need to be" questions, and I'm not trying to start any fights, negativity, or arguments, I just figure if we can't tolerate gluten, that our bodies won't tolerate even a little bit of gluten. Just because we can't tell our body is reacting to it doesn't mean it's not, as is evidenced by celiacs who don't react at all.

Thus, in MY mind, it seems like we should stay away from ALL gluten if you've been diagnosed, even if you find you don't react to small amounts, because it can still be tearing up your insides.......

Is this correct? Not so? Thoughts?

[Jestgar]

So, I guess I'm just confused, because if you are celiac, and gluten damages your intestines...then won't ANY AMOUNT of gluten cause damage, regardless of whether you notice a reaction or not?

Yes, but not everyone understands this right away. Or they're hoping to hear that a little is ok..

[zus888]

It is correct, but I think most people that have questions like that are fairly new to the disease and trying to figure it all out.

Like me, I'm still in the "bartering" stage, I guess. I don't have much in the way of outward symptoms that I know of. I guess fatigue could be one of them, but after 2.5 weeks gluten-free, I've noticed no change in that. So, every now and then I think, "So, if I cheat every now and then, the damage to my intestines can't be THAT bad. I mean, it's not like taking a lawn mower to the villi since it takes a while for things to get to that point. So, I could cheat and have some of my favorite foods every few months or so, take the damage, and then go back on the diet to heal back up. And, really, it shouldn't take that long to heal if I only had one cheat." That's my logic. But, it's really my way of trying to "find the loophole" in a life filled with food limitations without the benefit of any tangible improvements (biopsy not really included in that). I know that cheating won't help me maintain a healthy lifestyle, but a girl can dream. And, like I said, I think those of us at the beginning of the journey are the ones asking questions like that.

[healinginprogress]

Fair enough, Zus, and I'm not criticizing anyone for asking these questions, I was just curious, I guess. It would be awesome if we could "cheat" now and then without consequences.

I also just wanted to know so that I could make a stronger stand against anyone who questions how careful I'm being or tries to push me to have "just a little bit".

[mushroom]

There will be plenty of the "a little bit won't hurt" types out there trying to make you eat gluten, laying a guilt trip on you because they want you to eat it, they made it just for you, it is too much of an inconvenience to make it gluten free, you have to eat what everyone else is eating, you are just trying to attract attention to yourself, it is a trendy fad - the list goes on and on, and you have to decide what your little spiel is going to be for these people. It can be as simple as, I am sorry, I cannot eat anything with gluten in it, it makes me sick, or a slight prevarication like I have a gluten allergy (people seem to respect allergies for some reason). The simpler the response is the better, and don't get involved in arguing with them. If they are interested and want to know more you can answer some questions and help educate and tell them you have celiac disease/gluten intolerance, but if they are giving you a bad time about it, it is best just to stand your ground and say, I am sorry I cannot eat that.

[ravenwoodglass]

I just figure if we can't tolerate gluten, that our bodies won't tolerate even a little bit of gluten. Just because we can't tell our body is reacting to it doesn't mean it's not, as is evidenced by celiacs who don't react at all.

Thus, in MY mind, it seems like we should stay away from ALL gluten if you've been diagnosed, even if you find you don't react to small amounts, because it can still be tearing up your insides.......

Is this correct? Not so? Thoughts?

Yes we do need to do just as you say. GI symptoms are not the only damage that is being done with celiac and some celiacs have problems that are more skin or neurologically oriented than GI related. The problem is that although folks may notice little in the way of GI symptoms the antibodies can be attacking other systems. Celiac is much more than just tummy troubles even though that is what most think of first when they think celiac.

[zus888]

I think it's difficult for the average person to get a grasp on the whole thing. My SIL, who has celiac, explained it to me at least twice, and I still didn't think about how serious cross-contamination was. Heck, I didn't really understand it until weeks into the research once I was diagnosed with it.

It's hard to imagine such a small amount having such a big effect on people. They can "get" peanut allergies because it can be an immediate life-threatening anaphylactic reaction. But, this disease is more subtle in the mechanics. If people really want to understand and try to tell me a little bit shouldn't be a big deal, I'll explain that it's an immune response to gluten that makes me sick, in the same way a virus will make me sick. Viruses are small, yet your body reacts to them in much the same way it'll react to gluten, except with me, it's not just attacking the gluten, but also my own body. They usually get it after that.

[Cloelke]

I understand that some people have much stronger physical/neurological symptoms than others...I seem to have some pretty strong reactions, myself. However, I know also that some people have celiac but have NO physical symptoms at all, however, if gluten is ingested, it is still damaging their intestines. So, I guess I'm just confused, because if you are celiac, and gluten damages your intestines...then won't ANY AMOUNT of gluten cause damage, regardless of whether you notice a reaction or not?

I guess I'm just confused about these "how vigilant do I need to be" questions, and I'm not trying to start any fights, negativity, or arguments, I just figure if we can't tolerate gluten, that our bodies won't tolerate even a little bit of gluten. Just because we can't tell our body is reacting to it doesn't mean it's not, as is evidenced by celiacs who don't react at all.

Thus, in MY mind, it seems like we should stay away from ALL gluten if you've been diagnosed, even if you find you don't react to small amounts, because it can still be tearing up your insides.......

Is this correct? Not so? Thoughts?

I am a newbie extreme newbie as of last Friday the 25th. Not conclusively diagnosis as it only showed mildly on on biopsy. I was put on Gluten free diet for 4 months to see how I feel with out it. I have been asking the same question. It's alot to figure out and take in. Finding out gluten is in mouthwash, medicines, personal care products I keep asking how far do I go with gluten free? Do I stay way when it says MAY contain traces of or was process in factory with?

My Sister-in-Law who understands I need to be gluten free still says if they have not conclusively said you have it don't obsess and spend a lot of money or throw out a bunch of stuff til you know for sure you have it. Too me if there's any chance there is gluten in it I properly should stay way. I am just trying to wrap my head around it all being it is too soon to notice any difference yet. Everyone around me is very understanding and working with me so for that I am greatful.

[IrishHeart]

I am a newbie extreme newbie as of last Friday the 25th. Not conclusively diagnosis as it only showed mildly on on biopsy. I was put on Gluten free diet for 4 months to see how I feel with out it. I have been asking the same question. It's alot to figure out and take in. Finding out gluten is in mouthwash, medicines, personal care products I keep asking how far do I go with gluten free? Do I stay way when it says MAY contain traces of or was process in factory with?

My Sister-in-Law who understands I need to be gluten free still says if they have not conclusively said you have it don't obsess and spend a lot of money or throw out a bunch of stuff til you know for sure you have it. Too me if there's any chance there is gluten in it I properly should stay way. I am just trying to wrap my head around it all being it is too soon to notice any difference yet. Everyone around me is very understanding and working with me so for that I am greatful.

As I understand it, there is no such thing as "mildly celiac"...that's like being "sorta pregnant"!!

If you shows signs of the disease, you have the disease. You probably have come to this conclusion by now. You need to be 100% gluten free.

I think people without the severe gastro symptoms have a harder time because they do not "feel" anything....therefore, they do not see results from the diet.

On the other hand, I have dozens of symptoms, and I watch for the little improvements to tell me the gluten-free diet is working.

SOME people are sensitive to shampoos, etc with hydrolyzed wheat protein (like me) some are not.

I would avoid gluten in anything that goes in your mouth--toothpaste, mouthwash.

Everyone is different in their level of reactions.

I react right away, so I know.

I would avoid any products that say "processed in a facility that produces WHEAT". Flours can remain in the air for some time and cross-contaminate.

Hope this helps.

[Cloelke]

As I understand it, there is no such thing as "mildly celiac"...that's like being "sorta pregnant"!!

If you shows signs of the disease, you have the disease. You probably have come to this conclusion by now. You need to be 100% gluten free.

I think people without the severe gastro symptoms have a harder time because they do not "feel" anything....therefore, they do not see results from the diet.

On the other hand, I have dozens of symptoms, and I watch for the little improvements to tell me the gluten-free diet is working.

SOME people are sensitive to shampoos, etc with hydrolyzed wheat protein (like me) some are not.

I would avoid gluten in anything that goes in your mouth--toothpaste, mouthwash.

Everyone is different in their level of reactions.

I react right away, so I know.

I would avoid any products that say "processed in a facility that produces WHEAT". Flours can remain in the air for some time and cross-contaminate.

Hope this helps.

Thanks it does. I have the gastro symptoms. As far I know I don't react to the shampoos and skin products. So, basically I know nothing by mouth that is slightest bit questionable, but shouldn't have to change hair, skin and makeup products unless I react? Unless I want to see if I would react and change those too. Limited budget so don't want to change those if I don't have to.

[Strawberry-Jam]

Thanks it does. I have the gastro symptoms. As far I know I don't react to the shampoos and skin products. So, basically I know nothing by mouth that is slightest bit questionable, but shouldn't have to change hair, skin and makeup products unless I react? Unless I want to see if I would react and change those too. Limited budget so don't want to change those if I don't have to.

personally I would keep using them til they're gone, making sure nothing gets in your mouth and wash your hands a lot... but when time comes to replace, try and find cheap gluten-free brands to use. Or at the very least "no gluten ingredients" kind of thing. I understand the budget thing too... college student here. I feel terrible having thrown out/given away so much food (flour, cake mixes, pastas, cereals) and lotions with oats in. And spent so much money on gluten-free vitamins and enzymes and stuff to try and help my stomach heal. But I want to feel better... D;

[IrishHeart]

There are lists of products on the site to help you, if you are wondering which ones are gluten-free. I think Suave is ok...and that is a nice, inexpensive brand.

I had to clean out my pantry and bathroom too.. all that good stuff (sigh).....but, the local food pantry got a lot of items for their shelves.

It's hard at first to figure it all out, but I promise you, it gets easier. Good luck!

[Dixiebell]

On the suave website I typed wheat in the search bar and only two hair gel products came up. I am currently using the captivating curls and I like it. I have been using suave shampoos and conditioners for many years. The reason I am using this one now is because they stopped making the brilliant brunette.

[Cloelke]

There are lists of products on the site to help you, if you are wondering which ones are gluten-free. I think Suave is ok...and that is a nice, inexpensive brand.

I had to clean out my pantry and bathroom too.. all that good stuff (sigh).....but, the local food pantry got a lot of items for their shelves.

It's hard at first to figure it all out, but I promise you, it gets easier. Good luck!

I actually just got suave professionals shampoo & conditioner needed to try something different for my hair as I am still dealing with postpartum fall out and it needs help so It's good it's ok. My brother's family will be getting what my husband and daughter won't probably eat. My husband is a baker and comes home wth flour in and on his clothes. Good thing I am not sensitive to it in the air and by touch. He can get some of the needed no wheat flours and gluten free stuff as he works at a college and they have to accommandate gluten free students. I know I'll get the hang of it and it will get better.

[BillJ]

My Dr told me I would be much better off if I was much more symptomatic as it would force me to take it more seriously. I only found out I had it as I was having gastric bypass surgery and my surgeon required me to have a upper endoscopy to see if there was any damage from my acid reflux and the test discovered the condition or my intestine. It was after my surgery while I was on basically a liquid diet for about 10 weeks and was gluten free that I realized that my celiacs was causing my sciatica and causing me arthritis type symptoms in my back and as soon as I was able to eat solid food again and was no longer gluten free my symptoms returned . I gave myself 18 months after my surgery before committing to a gluten free lifestyle as my surgery had me so limited already to the amount of food and what I could eat already that I didnt want to set myself up to fail. But now I have lost 120 pounds and I my back hurts more now than when I weighed almost 400 pounds ...So I am committing to this for myself and my family so we are able to live more active lifestyle ..That and the thought of lymphoma scares the bejesus out of me!

[Richard Rosen]

This is a late reply to this post. Just joined the forum and thought my experience may help.

I was diagnosed around a dozen years ago, but because I lack any symptoms at all and lacked medical professionals that understood the disease to properly counsel me, I was not strict. After an endoscopy two years ago, my gastroenterologist told informed me my villi were pretty much gone and asked if was strict on my diet. Of course not, but I determined to become so, and two years later dropped from and IgA of 44 to 7.

Just had an endoscopy which was even worse, and the bone density mineral supplement (Probono) that had increased bone density by 7% no longer was being absorbed, as evidenced by a significant bone loss. That's when I realized I had to be knowledgeably strict - thus my registering for this forum. I am seeking zero IgA next time I measure it. Can anyone comment if that's a realistic goal? Of if there's a different test other than the gliadin antibody you would suggest?

The point of all this is that the consequences of even a very small amount of arsenic - I mean gluten - has consequences. As noted in this post, it may extend beyond affecting the intestines and then be known by a different disease, but still caused by gluten.

[Strawberry-Jam]

Depending on how long you were poisoning yourself, it could take years for the villi to heal. There's also the possibility that something else flattens villi--isn't there? Doesn't casein do it for some people? (just looked it up--seems rare, but it's a thing that can happen)

Obviously being as strict as possible can only help you.

If you don't mind my asking, what were your symptoms like, if you were able to keep a not-so-strict diet without getting sick enough to make you stop that?

[Richard Rosen]

Depending on how long you were poisoning yourself, it could take years for the villi to heal. There's also the possibility that something else flattens villi--isn't there? Doesn't casein do it for some people? (just looked it up--seems rare, but it's a thing that can happen)

Obviously being as strict as possible can only help you.

If you don't mind my asking, what were your symptoms like, if you were able to keep a not-so-strict diet without getting sick enough to make you stop that?

Thanks for answer that it could take years to heal depending on how long this has been going on, which is 17 years undiagnosed and another 12 where I wasn't strict enough. Let me add that in the early years before diagnosis I did have definite symptoms of severe diarrhea after eating. But after finally being diagnosed lactose intolerant, that ended. I suspect gluten sensitivity prevented lactose digestion. By the way, after I was diagnosed with Celiac 12 years and eliminated gluten - but not strictly - I was no longer lactose intolerant.

As for what my symptoms were like, that's an easy one after I dealt with the lactose intolerance: nada, nothing! And it remains that way. It's the endoscopy that discovered the state of the villi, with the high IgA antibody count. Notes on the last endoscopy:

[Gemini]

Thanks it does. I have the gastro symptoms. As far I know I don't react to the shampoos and skin products. So, basically I know nothing by mouth that is slightest bit questionable, but shouldn't have to change hair, skin and makeup products unless I react? Unless I want to see if I would react and change those too. Limited budget so don't want to change those if I don't have to.

I am a very sensitive diagnosed Celiac who had horrific gastro symptoms and always know when I have been glutened. I also wear make-up, color my hair, and sometimes get manicures. I only screen lip products and body lotion, for obvious reasons. I use the body lotion on my hands so that is gluten-free. I have never found it necessary to screen mascara, eye shadow or eye liner because they just don't get in my system and aggravate the immune system. I have never had symptoms from these items and my blood work is stellar. I KNOW when I have been hit and that usually happens about once a year now, if that, and isn't from make-up.

No one should be eating their make-up and I feel there is too much fear regarding topical products. Hair color is just not an issue as peroxide oxidizes pretty quickly, although it is absorbed into the skin. However, since all peroxide is gluten free to begin with, you aren't in any danger of taking a hit. I have not found color with gluten in it but then again, I am pretty loyal to one brand and it is not a problem.

If you do have a reaction to a topical product, it would be an allergic reaction and many people can be sensitive to ingredients in shampoo, color, etc. You can have additional topical allergies, along with Celiac. I don't have skin issues with anything so have never had any kind of reaction to anything topical.

You have to do what makes you comfortable but do not harbor fears where there should be little worry. If you take a shower and let soap and water run down your face and over your mouth, then you may want to use gluten-free shampoo. Think about your habits and use common sense. I have to add that, of course, toothpastes, mouthwashes and the like have to be screened but it is not difficult to find these items in a gluten free form. Many already are. Once you get the hang of this, you'll be more and more comfortable with everything but try and avoid being overly worried about gluten exposure because the world is full of it and you can survive quite well regardless. Use your products carefully, develop a good routine, and you'll be fine!

[heather806]

Wow, IrishHeart explained it very well I think.

I was just diagnosed last week (blood tests, haven't seen the gastro yet) and I am one who has no gastro symptoms but has been suffering from malabsorption problems for years. (anemia, calcium, d, others)

It is tough in a way because I won't know if I accidentally have something with gluten or have cross contamination of some kind. We went out to dinner last night (first time since finding out dx) and my friend said, "how would you know if the waiter made a mistake and there was gluten in that dish?" I wouldn't! I hope I get eventually stop taking all these vitamins. If I feel badly it could be low vitamin this or that but no puking etc. it's a blessing but i have to remind myself that my case is just as "bad" as another persons, as someone kindly pointed out to me on here. There's a lot to learn when you are new at this.

I am committed to 100% gluten free!

[cavernio]

Same with me heather, at least for the time being. I feel more of a reaction to dairy than I do gluten!

Maybe over time though you and me will both get more sensitive to gluten. I kind of hope I do because, as you say, I just won't know! Like, even if a restaurant or my family cooks me gluten free food, the risk of cross contamination is still pretty high, and I will never really know if they're going a good enough job. It makes me want to only eat food I know myself where it's been.

And with food products, ones that might have contact with gluten during processing but might not say it on the box, well, I really shouldn't be buying anything that I don't have gluten free assurance of, especially if it's a product I'm going to be eating regularly.