How Sensitive To Gluten Are You?

[weluvgators]

Other studies show a correlation between stuttering and gluten, point to damage in the part of the brain that normally controls speech and the problem area, and speculate that gluten damages that area of the brain.

I would appreciate any links that you have about this. For one of my children, she exhibits the stuttering as one of her symptoms with very slight exposure. In trying to understand it all, we suspect it is a function of gluten impaired motor skills - probably both fine and gross. Thanks for any info you can dig up for us!

[thanatopsis]

New to the forum so I'll add my experience.

Had no idea about the impaired motor skills part of the disease... very interesting. Also... just signed on the forum and I am very interested about the link to joint pain as I experience joint pain that started about the same time my allergy did.

As of now I don't consider my allergy "bad" per-se as it's not to sensitive... touching things with gluten is no problem, processed with wheat products no problem... only items that have wheat SEEM to effect me. Still have random reactions so it may be getting worse than I think.

Interestingly... I have been able to drink beer unless it is specifically a "wheat beer" up until recently without issue -- but that seems to be coming to an end as beer now makes me instantly tired which I didn't note as a symptom before reading up on here. My usual symptom is not actually gastric trouble... it is a delayed reaction which causes sores in my mouth and throat that can last for 3-6 weeks:

https://www.celiac.com/articles/21858/1/Could-that-Canker-Sore-Mean-Celiac-Disease/Page1.html

Unfortunately the delay also makes it very difficult to know what causes my reaction.

In any event... I have been quite amazed at the variety and sensitivity of reactions I've been reading about so far so I think that I should be more careful in the future in case mine becomes worse.

Thanks for sharing all.

[Skylark]

I get those too. It's one of the sure ways I can tell the GI symptoms of a glutening from food poisoning or a virus. The canker sores show up a few days to a week later if it was gluten.

[T.H.]

Thank you so much everyone for your replies!! That makes me feel so much better, to know how much variety celiacs seem to have in their experiences. Makes me feel a little less alone, and more like I'm just part of a set of people that can have the same problem and still have totally different problems at the same time, essentially. :-)

[T.H.]

Oh, my understanding is that wood and plastic can absorb gluten, and it will slowly release into any food they are used on. Teflon isn't porous to gluten, but any scratches in the teflon will be porous, too, and gluten can be absorbed from gluten and released back into the foo.

but I've never heard whether this is an issue for all celiac folk or just ones sensitive like me, I'm afraid! :-P

So back on page 1 at the beginning of the thread, there was talk about ditching non-stick pans and plastic utensils. Which made me panic lol, and I asked about that but no one really said anything. So, does anyone know for an undisputed fact that gluten cannot be gotten out of these things, or are those of you who've gotten rid of them just trying to be extra careful, because you're extra sensitive?

Or maybe I should ask---are there any of you who did not get rid of your non-stick and plastic, and you're doing just fine?

[Black Sheep]

Oh, my understanding is that wood and plastic can absorb gluten, and it will slowly release into any food they are used on. Teflon isn't porous to gluten, but any scratches in the teflon will be porous, too, and gluten can be absorbed from gluten and released back into the foo.

Ah, well then I'm probably o.k. with my 1 non-stick pan, as it's practically brand-new. Hubby got it for me for Christmas (I know it's an odd present, but I'd been whining about the old one being scratched and having to throw it away!). So it had had less than 2 months use when I went g.f., and I've been extremely careful with it, so to this day it has no nicks or scratches. As for the plastic utensils, yeah, I think I'll ditch those!

[Mari]

I'm very sensitive to gluten and that agrees with the genetic test which showed I have two markers which strongly predisposed me to developing celiac disease (DQ2/DQ2). One marker I inherited from my mother and the other from my father. This means that all of my cell in my body have gluten antigen receptors. A person who only inherited one marker would have many cells with no gluten antigen receptors, maybe half of their cells or half of the receptors on a cell. In addition this is a multigenetic disease so there are several other genes which contribute to the severity of the problem but they are not tested for as the DQ gene test is more than 99% accurate. There may be some information on this at the Enterolab.com website.

[minamoo]

Um...non-stick pans and plastic utensils? I knew that gluten couldn't be gotten out of the wooden stuff, but non-stick and plastic? Oh no...do all celiacs have to throw them away, or only the folks who are really sensitive? But then I guess this goes back to how much damage is really going on despite a person's sensitivity. Oh, great.

I had the funny looks and rolled eyes from my family on Mother's Day. I had explained to the restaurant's co-owner/waitress about gluten (I was having the prime rib dinner), and told her I absolutely couldn't have the bread that came with it, croutons on the salad, etc. We discussed together the different dressing options, and I explained to her that I already knew from a previous visit that their Ranch contained gluten, as one of their other waitresses (who doesn't eat gluten) had checked. I thought she understood. So, here comes my prime rib...beautiful....except for the 4 huge onion rings, artfully piled on the top. I just sort of did this for a moment and stared, before explaining that the menu said nothing about the food coming with onion rings, if it had, I would have certainly asked that none be put on mine! And that onion rings, being breaded, contain GLUTEN! She apologized profusely and took it back, saying she'd take care of it. My family was saying things like, "So what, you didn't have to eat them--just take them off," and "They can't possibly hurt you just because they touched the meat!" I tried to explain. Then the lady returned with what I thought was another plate of food, and enthusiastically informed me that the onion rings had been taken off! Yay! Again I sort of went, . Like, are you kidding me? Once again, I patiently explained the facts to her. She looked kind of bummed out (she really is a dear, sweet, lady who only wants to help people, and I think she really was sad that she "let me down" or something) and said that they'd cook me a whole new meal, which they did, and I was fine (as far as I know!). But again I got those comments from my family, a bit of eye-rolling, but not in a mean way, and we all just laughed it off and got on with our meals.

Well, they got on with theirs. By the time I got my new meal they were all done. And btw, we went at 3:30 when there was almost no one in the place.

I felt stresed only reading this story, I can only imagine what you must have felt like.

[Black Sheep]

Didn't mean to stress you! Yeah, it was almost one of those laugh-or-cry situations, so I laughed. I don't mean cry as in feelings hurt, but from frustration! As for the fam and their eye-rolling and thinking I was getting "carried away"....what the hell, I'm used to that. We're pretty close and love each other dearly, and always have a great time when we're together. But, they've always sort of rolled their eyes at me. I've always been the "different" one; or as my name suggests, the Black Sheep. Because I refuse to take everything they spew on the 5 o'clock news as gospel, not to mention that I think most of the so-called "conventional wisdom" on various things is a load of b.s., they think I'm a bit odd.

Guess I've always marched to the beat of my own drummer (so that's what I've been hearing in my head ), which is serving me quite well with celiac--'cause as I've said before and I'll say it again--I don't give a rat's rear-end what others think of my food choices. Or any other choices I believe in my heart to be right.

[GroovyCat]

Well, this is my first post as I felt I just couldn't pass this topic by.

I too am newly diagnosed (about a year and half ago now) and it's been a steep learning curve. Fortunately, I have one friend who is not really sensitive and another on the very sensitive end of the scale. I have found that I am on the extremely sensitive end of things, especially as now I've been gluten free for well over a year. I also have both of the genetic markers for celiac and was diagnosed primarily on those and my biopsies. (All my blood tests and antibody tests were negative.)

I am sensitive enough that I had to get rid of all my old food storage containers, wooden cutting boards, and plastic anything (utensils, bowls, etc.) In fact I discovered this after my second gluten-free meal. Our first venture of a gluten-free meal was gluten-free pasta - which was excellent. I thought it tasted as good as 'regular' pasta and was excited to take left overs to work the next day. Imagine my surprise when I got sick immediately after eating (GI symptoms). I couldn't figure it out and was very disappointed. I immediately went online and found that old plastic food containers that had previously held gluten foods could contaminate my new gluten-free foods.

So we got rid of all the old plastic stuff and started fresh. I didn't have any problems after that with leftovers.

A few of the alterations I've had to make are as follows:

-for communion at church I have to have my gluten-free alternative (usually a bit of a rice cracker) on it's own serving plate (or my husband sneaks it to me when he's helping serve communion)

-hair products (I had to get rid of all my beloved Aveda products! - I thought little tiny blisters on my scalp were something everyone got from time to time.. now I don't get them anymore, ever. (I take my own shampoo and conditioner to the hairdresser and this makes it easier for everyone)

-Band aids!! - don't even get me started on this one... I was making my first batch of gluten-free lasagna and burned myself when I was draining the noodles, 2nd and 3rd degree burns on my tummy . I patched it up with gauze and used bandaids to hold the gauze on as I didn't have any tape - was I shocked to find I got more blisters from the bandaids themselves... (Even now, the scars are worse from that one use of the bandaids, than from the burn itself. I found I could tolerate waterproof tape (I only developed callouses instead of blisters).

-handling gluten-free foods - (many of my celiac friends have no trouble with this... as I said I think I'm on the 'crazy, sensitive' end of things) I am a primary school teacher and quickly learned I couldn't serve pizza for the pizza lunch - I have a parent come in and help, I suspect I could probably use gloves but haven't tried this yet... then for my hubbie's birthday - he's gone gluten-free for me at home - I bought his favorite type of cake, an especially gooey, caramely, chocolate cake and we had a few family and friends over. I was serving them the cake - his piece first, of course, and used the tip of my finger to stop his piece from falling over (just simply tipped it back up). Then, without thinking, popped the finger into my mouth... and was sick (GI again) within 10 minutes. I got to spend the next couple of hours in the bathroom.

-the most recent development - my husbands father passed away just before Easter and we had relatives from all over the world come to stay with us. We explained the nature of our gluten free household, and laid up a lot of yummy gluten-free food, baking, etc. We really tried to have as many varieties of foods available so that our guests had a lot of choice. Of course, kind friends, family and neighbours dropped off food. We did a good job of keeping all this seperate. We had 8-10 people staying with us for a week and for the most part I was symptom free. As the week progressed we relaxed a little with the gluten-free thing. Boy did I learn the hard way! I was experiencing gluten-free symptoms for 2 weeks afterwards and we had to systematically go through all our plastic utensils etc. and determine which ones had been contaminated. Not pleasant.

Anyhow, I guess what I really wanted to say was I think as other posters have said - you have to do what's best for you and don't worry about others. When I start to think I'm losing my mind and being too over-the-top with things I'll talk to another celiac and find out that they have had the same trouble. So I endure my families eye-rolling (from time to time) and the school nurse saying 'surely a little bit of gluten wouldn't hurt'... and I try not to lose my sense of humour about things...

When I get discouraged by how restrictive being gluten-free can be (and thank goodness there are so many yummy options out there) I think about what it was like living with chronic diarrhea for 20 years (IBS, my foot!) and how much better I feel now - more energy, less fog, better skin, hair, nails, joints, and a much happier tummy - and I count my blessings...

Thank goodness for a diagnosis. All the trouble is totally worth feeling better.

[Black Sheep]

A few of the alterations I've had to make are as follows:

-for communion at church I have to have my gluten-free alternative (usually a bit of a rice cracker) on it's own serving plate (or my husband sneaks it to me when he's helping serve communion)

-Band aids!! - don't even get me started on this one... I was making my first batch of gluten-free lasagna and burned myself when I was draining the noodles, 2nd and 3rd degree burns on my tummy . I patched it up with gauze and used bandaids to hold the gauze on as I didn't have any tape - was I shocked to find I got more blisters from the bandaids themselves...

Sounds like me! The first time we had communion in church after I went g.f., I thought Surely just a tiny piece of this cracker won't hurt me.

(Kind of like you school nurse--which btw, I find really annoying. Not towards the nurse--but at the nursing and med schools that don't teach these poor students what they need to know about celiac! ) Well, I was fine all day--until the next morning. Then I was literally sprinting to the bathroom. So the next time I got "smart" and brought a little piece of a homemade tortilla chip. Worked great, except for the fact that I almost dropped it on the floor as I unwrapped it! lol Today we had communion and I was not too happy with myself when I realized I'd completely forgotten.

As for the Band-Aids (or would that be more like, Bad-Aids?) I used to have a problem with them sometimes, too, although not as bad as you did, before I knew what was wrong with me. Once I had to have an EKG (or do the call it an ECG now?), and the little sticky things left horrible lesions on my skin. I would get infections on my armpits after shaving, and my toes were continually in between them. I've been g.f. for 2 1/2 months now, and the skin between my toes has stopped cracking, my underarms aren't nearly as sensitive, and I've had 2 EKG's/ECG's in the last 3 weeks, and the sticky things didn't even bother me this time.

As for plastic--man, I hope I never get too sensitive, because I realized the other day that that would mean I'd have to get rid of my food processor!

[lovegrov]

Band-aids do not contain gluten. However, some people react to other ingredients.

richard