Are There Levels Of Sensitivity In Celiacs?

[sandsurfgirl]

I was reading the thread about getting glutened and wondering are all of us sensitive enough that we will get sick if somebody has crumbs on their hand and then touches something we eat and things like that?

I just got diagnosed and have only been on the diet for a few days. I have been homebound because of dizzy spells and constant need to go to the bathroom after my pizza and cake fiasco that landed me in the E.R. but led to my diagnosis finally. So I have been able to control everything in my house and I haven't recovered yet enough to know if I've been glutened.

I've been eating gluten for my whole life and there have been times I was sick, times I was not sick, times I ate bread and felt awful and times I ate bread and felt fine. So I don't know what it's going to be like once I've done some healing if an accident happens.

Also are there people who actually are able to cheat once in awhile and eat a few bites of cake, or are all celiacs super sensitive and get sick if any tiny amount of gluten is ingested. (Not that I'm thinking of cheating. I never want to feel like this again. Not worth it.)

I'm reading about dedicated pots and pans and utensils and things like that and I don't know if I need to do that, or check all my cosmetics and all of that.

[lovegrov]

There's no question at all that there are varying levels of sensitivity. There are people who can cheat (and the majority of people cheat at some point, although not regularly) and feel nothing or almost nothing, and others who have terrible reactions to crumbs. Those are the obvious reactions. But no matter how you react outwardly, it's impossible to know exactly what's happening inside.

[lovegrov]

Sorry, didn't finish. It is best that you eliminate any gluten you know of because there will always be cross contamination. For instance, your makeup won't be absorbed through the skin, but it can still get into your mouth. Same with shampoo etc.

richard

[GFinDC]

Some people don't have GI symptoms at all. I think they call that latent or silent celiac. Then there's the people that get GI symptoms and often other symptoms too. I am one of them. Anyhow, you sound like a person who is going to have GI symptoms. When I first went gluten-free I thot it strange that people talked about crumbs and so on. But after I had been gluten-free for a while I found out what they were going on about. So, yeah, be careful about it as it doesn't take much of the stuff to cause a reaction. And every reaction is slowing down your healing process so not a good thing.

[happygirl]

Open Original Shared Link

Good article by a great Celiac doctor. Italics added.

"Why no diarrhea or abdominal pain?

[butterfl8]

Brief answer: yes. There are different levels of sensitivity to gluten. I was diagnosed in late July, and am pretty (annoyingly) sensitive. My sister was tested about 2 months later after a gluten challenge, and she can "cheat" without any noticeable GI effects. I have to watch when I put on lotion, because if I put it on, and then eat with my hands, and the lotion is not gluten free. . . bad things happen!

Go as clean as you can, and if you notice any effects from times when you think you've been cross contaminated, then you'll have an answer as to your level of sensitivity.

-Daisy

[ciavyn]

I kept saying I wasn't that sensitive, as I felt pretty good when I went gluten free. I figured, hey, there must be cross contamination in my household (I'm the only one gluten free) and I feel fine! Then I spent the week away at my grad school residency. The cafeteria was kind enough to provide many gluten free choices for me, but the reality is, they don't know like I do about gluten. While I couldn't pinpoint a specific dish, I got VERY sick. So yeah, I agree that you should stick with as clean and gluten free of a household as you can. Only you know what does and doesn't have gluten in it, and you know (or you will learn as you search it out on here!) where it can hide in certain unlikely sources.

I'd much rather eat my food and feel good, than be sick trying to cheat the game. SO not worth it.

[mysecretcurse]

Yes, there are many different levels. I can't even touch gluten without a violent reaction.

[lizard00]

To further complicate matters, I am very sensitive, but my reaction level is connected to the amount of gluten I ingest.

I'll explain: this month has shown me two glutenings. One much worse than the other. While at my gramma's over the holiday, my cousin and I cooked almost everything. We were making a sauce to slow cook some ribs in. She put some vinegar in it that had been in my gramma's cabinet for who only knows how long. I stupidly dipped my pinky finger in it to taste it before realizing that the vinegar had malt vinegar in it... I had a headache the remainder of the day (which is my first, tell-tale sign), but I felt a little funky for about a week after. Not horrible, just funky... reflux, mild headache. I figured the amount of gluten I actually ingested was miniscule, but I react to very low amounts.

The second one happened last Tuesday night. We got pizza from Z Pizza.(I usually make my own, but was out of my stuff.) I have felt horrible since then. Feels like someone punched me in the guts, my body aches, I feel dehydrated. Awful! I am slowly feeling better day by day. So, we're not sure if they just totally got my order wrong, or if they just got super sloppy and contaminated the crap out of it. Either way, I'm sure the amount of gluten from the pizza far surpassed the tiny amount from the vinegar sauce, just based on the severity of my reaction.

I'm a little over 2 years gluten-free, and I'm still learning. It's such a complex disease.

[Takala]

I am not as sensitive as some, which is actually a bigger problem because then it's not real obvious when and how I have been glutened, and I went my entire adult life misdiagnosed until I figured it out from internet research when I was in my forties, combined with looking at test results that the idiot physician told me proved that I didn't have a problem.

Since I have made such a stunning recovery from being so screwed up otherwise, aka the neuro symptoms, brain fuzz, and the arthritis flares (still really screwed up from some damage, but able to pass for normal most days) I don't really have this desire to regress back into what I was before by eating gluten.

After about 7 years off of gluten, now I am reacting a bit more strongly to the accidental glutening, which is inevitable if one ventures out of one's home. My favorite "they almost got me" was ordering a plain cup of green tea at Starbucks, explaining I need it to be PLAIN green tea because I cannot have wheat, and the same ditz clerk puts a flavored tea bag into the cup. Back in the car, out of habit, I sniffed the cup before taking a sip out of the sippy lid ....

I have a sharp nose. It's got spice in it.

I look at the tag. It's the brand of tea with gluten in certain flavors at that time, Tazo,and I can't remember if this is one of the flavors that is suspect or not, I'm pretty sure it is.

My spouse is like, we'll just go back in and exchange it.

I'm like, no, if this woman, the only employee we see in this small store, is THIS dumb she can't remember to pick up a plain teabag for me after I ask for a plain teabag, I don't want to see what happens on the next round. This isn't really rocket science here, it's not like I demanded to read the ingredients on a coffee syrup flavor and then that they scrub down the machines they make it in and grind the beans in a clean grinder. This was can you give me hot water and an unflavored tea bag. Nope.

Now imagine if I had just drank the stuff, not looking at the tag nor remembering that information, and then eaten several other safe but potentially "iffier" items that day, prepared by other people or made commercially, I would never have known which one had glutened me, nor which were blameless, if a day later I was starting to feel really stiff and achey. Multiply this by thousands of interactions a day, plus manufacturers constantly changing formulas or not admitting they did, and you now know why we can't avoid it totally, only we have to try real hard.

Now here is the weird part, I AM sensitive to cosmetics and finding out the culprit was gluten was wonderful because this means I can now select cosmetics that DON'T bother me. Which means that if I use the straight mineral types of powder that I can now wear some eye make up again when I want to. Shampoos had always given me problems with rashes, but no more as I am now avoiding wheat family products in them. Hair conditioners? Bleah. Make my own now, by using real cider vinegar, water, and maybe pure shea or coconut oil. And lipstick and lip balms for us REALLY do need to be gluten free as we ingest some accidently all the time.

I went ahead and replaced a lot of old metal pans because there was no way I could every truly decontaminate them. My spouse decided to eat gluten free at home (unless it is a stray, odd pre packaged item) so we don't have "segregated" utensils. I was sad retiring the ancient toaster, especially when I found out that new toasters don't last as long. Oh well.

Turns out that now with a dog in the house that is also big time allergic to wheat, that HIS reactions are severe enough that we have gone to almost all pet foods also being gluten free, so if we have him accidently ingesting something, like licking the other dog's water dish, or eating a crumb of cat food, he doesn't puke all over and then scratch himself raw (which equals = vet bill. this is why he was not being adopted at the pound, he was very itchy. Serendipity.) And this helps keep me from reacting to pet saliva. Pets lick themselves and drool, and my cat tries to groom me, and I didn't need the extra exposure.

At first this sounds complicated, but once you resign yourself to being a compulsive reader of ingredient labels, it is much easier than being sick. And it is the culmination of many low grade cross contaminations that can make one still feel sick, if they don't think about where it is coming from.

[GFmomof2]

I am finding that the longer I am gluten free the more sensitive I have become. I recently removed dairy from my diet after I didn't recover from a particuarlly nasty gluten incident. I started feeling better than I had in all my life after removing all traces of dairy from my diet. Then WHAM. Hubby wanted to go to a restruant yesterday morning and sure enough by the time I had finished eating and we were ready to leave I knew I had just eaten contaminated food. Whether it be dairy or wheat I can't even tell. All I know is that I was stricken with horrible flu like symptoms, stomach bloating and shortness of breath that are taking forever to go away. I have completely sworn off restraunts. I will take my own prepared or packaged food from now on.

Why on earth would anyone want to go out to eat if they are going to get "food poisoning" every time. The only kitchen I tust is my own kitchen.

[woodnewt]

Yes, there are varying levels of sensitivity. I used to be one of those who could actually eat wheat without feeling that ill, but I apparently pushed my body too far. I was diagnosed in 2004, went gluten-free in 2006, and didn't care about cross contamination (product with no gluten ingredients = safe to me), eating out at restaurants (trusting that if I spoke staff/kitchen/chef they'd keep the food gluten free), food from the bulk bin (thought I'd be smart and save money by doing that), skin/hair care products with gluten (oatmeal), and so forth.

Apparently it was more than my body could handle and last year was nearly the end of it all. I weigh around 95 lbs right now and given my height, that's a BMI of around 15. Can't gain weight no matter how hard I try, but at least I found all the hidden gluten in my life and it stopped the weight loss. I was going fast, 1-3 lbs a week for months, and no matter how much I ate it would not stop. Very strange things were happening to me, felt like I was going crazy because I knew I was being poisoned by something, it felt like I was being slowly poisoned to death... neuropathy, unexplained infections, bone marrow edema, extremely low BP (80/50), blacking out, bleeding pin-prick like rashes, bruises all over my body, swollen and inflamed veins and lymph nodes. My hair was falling out. I was having severe digestive problems. It all hit me like a truck and seemingly came out of no where.

My gastro said I had to do the endoscopy; I was so sure it wasn't celiac - I was gluten free and my blood tests were negative since 2006. Was in absolute horror and shock when I found out it was from uncontrolled celiac. The only way I can explain it is like the moment you wake-up terrified from a nightmare only to realize it was all real.

It was a living nightmare. Still is.

So sensitive, I can tell if I eat something with gluten in it right now. Really hurts my gut and body. Everything I eat is unprocessed now. No frozen, canned, boxed or packaged foods, with a couple of exceptions from small companies that deal with specialty product and are 100% no gluten. I've since cut out all grains and have felt much better. Weight is not coming back on but my health has improved tremendously, and I can eat a lot more foods now than I could a few months ago. Gut feels almost normal. Still wondering if I will ever go back to the way I was before where I couldn't really tell if I consumed trace amounts of gluten. It's a living nightmare to live this way, but also a nightmare to not know, until it nearly kills you.

[sandsurfgirl]

Yes, there are varying levels of sensitivity. I used to be one of those who could actually eat wheat without feeling that ill, but I apparently pushed my body too far. I was diagnosed in 2004, went gluten-free in 2006, and didn't care about cross contamination (product with no gluten ingredients = safe to me), eating out at restaurants (trusting that if I spoke staff/kitchen/chef they'd keep the food gluten free), food from the bulk bin (thought I'd be smart and save money by doing that), skin/hair care products with gluten (oatmeal), and so forth.

Apparently it was more than my body could handle and last year was nearly the end of it all. I weigh around 95 lbs right now and given my height, that's a BMI of around 15. Can't gain weight no matter how hard I try, but at least I found all the hidden gluten in my life and it stopped the weight loss. I was going fast, 1-3 lbs a week for months, and no matter how much I ate it would not stop. Very strange things were happening to me, felt like I was going crazy because I knew I was being poisoned by something, it felt like I was being slowly poisoned to death... neuropathy, unexplained infections, bone marrow edema, extremely low BP (80/50), blacking out, bleeding pin-prick like rashes, bruises all over my body, swollen and inflamed veins and lymph nodes. My hair was falling out. I was having severe digestive problems. It all hit me like a truck and seemingly came out of no where.

My gastro said I had to do the endoscopy; I was so sure it wasn't celiac - I was gluten free and my blood tests were negative since 2006. Was in absolute horror and shock when I found out it was from uncontrolled celiac. The only way I can explain it is like the moment you wake-up terrified from a nightmare only to realize it was all real.

It was a living nightmare. Still is.

So sensitive, I can tell if I eat something with gluten in it right now. Really hurts my gut and body. Everything I eat is unprocessed now. No frozen, canned, boxed or packaged foods, with a couple of exceptions from small companies that deal with specialty product and are 100% no gluten. I've since cut out all grains and have felt much better. Weight is not coming back on but my health has improved tremendously, and I can eat a lot more foods now than I could a few months ago. Gut feels almost normal. Still wondering if I will ever go back to the way I was before where I couldn't really tell if I consumed trace amounts of gluten. It's a living nightmare to live this way, but also a nightmare to not know, until it nearly kills you.

I am so sorry to hear of how much trouble you are having with this. So the moral of the story is, even if I don't feel symptoms, be diligent and don't cheat on the diet. I have been having those same thoughts like "Do I really need to worry about trace amounts of gluten?" I guess I do need to worry about it. Thank you for sharing that and again I am so sorry that you are having such a hard time.