Does Super Sensitivity Exist?

[IrishHeart]

... finally figured out I'm probably getting sick because of a dairy sensitivity.

Same here.

As much as I had hoped I could put dairy back into my diet, I am thinking NOPE! It is very frustrating to have a limited diet.

I don't care about the gluten, but cheese? damn it!

[dilettantesteph]

I don't care about the gluten, but cheese? damn it!

Me too, I was so glad to be able to add dairy back to my diet. I think I am very rare to be so sensitive and still be able to tolerate dairy. Of course, it is carefully sourced. Plus, when I get glutened, lactose intolerance is one of my most noticeable symptoms.

[IrishHeart]

Me too, I was so glad to be able to add dairy back to my diet. I think I am very rare to be so sensitive and still be able to tolerate dairy. Of course, it is carefully sourced. Plus, when I get glutened, lactose intolerance is one of my most noticeable symptoms.

Interesting ! My doctor speculated my recent reversal of being able to tolerate dairy came on the heels of the accidental glutening I told you about. (I had kept it out the first 9 months gluten-free and then, I had introduced it just fine)I was doing all right....and then, I wasn't.

Makes sense.

Maybe dairy and I can be friends once more someday. I never give up hope. I have been accused of being an eternal optimist.

[mysecretcurse]

Super sensitivity definitely exists.. I've been gluten free since 07... discovered my other sensitivities and finally got my situation under control in 09/10... (other sensitivities: soy, dairy, corn, and all other grains even rice).. found it was too much trouble reading labels and went entirely unprocessed/high raw in 2011.

My home is allergen free and I do not eat out so I basically have everything 100% under my control. I haven't had a reaction for a long, long time--and then I flew out to California to visit family for the first time in ages this past week. I made sure to prepare. Brought all my own spices. Brought all my own nuts/seeds that I know I don't react to that are processed in gluten free facilities (I've been using the same brands for ages with no issues)... but when it came to forks/plates/cookware I decided to just bring my own fresh sponges, soap that I know is safe, and deep clean my family's dishes and cookware. I thought I'd be fine.

I was so, so, so wrong. It only took two days before I had a severe, severe glutening. I know for a fact that the contamination came from either the plates, cutlary or possibly tupperware. No one was eating gluten at the table around me or anything and they had cleaned the house pretty well as my family understands my condition but they also didn't know it was THAT sensitive.I got so sick they almost had to take me to the hospital, it was terrifying. And devastating because I honestly had no clue I was THAT sensitive either. I never used to be.

How does this happen? I feel like the more I protect myself from it the worse the reactions if I am exposed. And I scrubbed and scrubbed everything I touched... all the pots and pans were stainless steel, not teflon or anything that might have held remnants... I just don't get it.

I keep hoping I will get less sensitive over time but no, the opposite seems to be happening.

After this incident I went out and bought an entire new kitchen set. Silverware, cutlary, plates, mugs, glasses, cookware, tupperware, everything. I am going to keep it in a box, across the house and have my family just store it for me for when I come to visit. It's the best I can do, but when I hear of people being contaminated just from BEING IN the house where there is gluten--that scares me so much.

I don't have any answers but thought I would share my experience.

[Skylark]

I don't care about the gluten, but cheese? damn it!

Yeah, losing cheese is hard. Damn it is right! (I use stronger language in my head. LOL!) At least I figured out that canned coconut milk is good coffee creamer. I can survive with something decent in my coffee.

[dilettantesteph]

Super sensitivity definitely exists..

I keep hoping I will get less sensitive over time but no, the opposite seems to be happening.

If it's any comfort to you, you aren't alone here. Just when I think that it isn't possible to get any more sensitive, it happens.

I don't blame those who don't believe it. I'm not sure if I would either, if I weren't wearing these shoes.

[IrishHeart]

I think one of the more frustrating challenges we celiacs have to deal with are those 'what the heck' reactions, the ones where we can't see why we're reacting, or what it's from. Is it an allergen, sulfites, chemicals, gluten? And WHAT got us? And how long was the delay before we reacted?

Agree completely.

Some of us had what I call "smoldering celiac" all of our lives and recovery is s-l-o-w.

And sometimes, we are just getting "older". Things we could eat with reckless abandon just do not agree with us anymore. I don't necessarily like that I have to add that variable, but there it is.

[IrishHeart]

I don't blame those who don't believe it. I'm not sure if I would either, if I weren't wearing these shoes.

This is nearly the same thing I have said about celiac.

I know some people are skeptical that gluten can cause the massive damage it did to my body and brain--the years I lost---yet, here I am. If I had not lived it, (and met others who also suffered the more peculiar and devastating symptoms of celiac that I had) I would find it difficult to believe myself.

[IrishHeart]

Yeah, losing cheese is hard. Damn it is right! (I use stronger language in my head. LOL!) At least I figured out that canned coconut milk is good coffee creamer. I can survive with something decent in my coffee.

Me, too. I was being "restrained" on here.

Yes, ditto for me--coconut milk to the rescue.

[kenlove]

You can add me to this club too. one thing after another with a year+ break in between.

If it's any comfort to you, you aren't alone here. Just when I think that it isn't possible to get any more sensitive, it happens.

I don't blame those who don't believe it. I'm not sure if I would either, if I weren't wearing these shoes.

[IrishHeart]

It is interesting (and perplexing) though, that so many others report to us that they have LESS of a reaction with an accidental glutening, the longer they are off gluten and healed. As opposed to becoming MORE sensitive.

A day or so of minor symptoms and they rebound.

(That would be nice )I take forever.

[mysecretcurse]

Yes I don't understand that either! What is the difference between those who becomes less sensitive and those who become more and more sensitive? I wish we could pinpoint what is different about us verses them... is it that we are lacking something? Some deficiency? Is it that our intolerance was worse somehow or that we had more damage by the time we found it so we were past some sort of tipping point? (I don't know about you guys but I was about 25 when I first got on the path to removing gluten--and I do believe I was intolerant my whole life as I had unexplained hives, stomach problems, mood and behavioral issues since a toddler).

I feel like there has to be an explanation.

[Cathey]

I never thought I was super sensitive, till I got bit and HARD and I only figured it out today. I had crappy stomach Fri, Sat, Sun, bathroom issues since Monday, to top it off my stomach feels like it did before being diagnosed. What is it they changed the lab on my blood pressure medication, which I started a new bottle last week. I called the MD and got a new scrip for the name brand and not genetic.

OMG drove me crazy trying to figure this one out. That's it no more genetic meds for me. Have a great day all.

[IrishHeart]

Yes I don't understand that either! What is the difference between those who becomes less sensitive and those who become more and more sensitive? I wish we could pinpoint what is different about us verses them... is it that we are lacking something? Some deficiency? Is it that our intolerance was worse somehow or that we had more damage by the time we found it so we were past some sort of tipping point? (I don't know about you guys but I was about 25 when I first got on the path to removing gluten--and I do believe I was intolerant my whole life as I had unexplained hives, stomach problems, mood and behavioral issues since a toddler).

I feel like there has to be an explanation.

Not sure either.

I was twice your age at SEVERE symptoms onset, but can attribute my lifelong health problems to this disease.

I pray I do not have refractory sprue. My doc says I need more time to heal but sometimes I wonder....

[dilettantesteph]

Even though I seem to have become sensitive to lower levels of gluten, I actually usually have a less severe reaction. I think that this is because I have healed and I have become better with figuring out a safe diet for me.

I've also gotten good at only trying a little bit of something new, and then a little bit more, while carefully monitoring for symptoms. I don't try anything new without checking into it very carefully. That way I can avoid a full on flare up in symptoms.

I'm good about doing elimination diets when I do get symptoms. It can take a long time when it is from a change in something that was in safe list, but I can be patient and figure it out eventually.

I can usually get back to normal within 3 days or so once the gluten is gone, and I can even make it to work when glutened as long as I spend a few hours next to the toilet in the morning. I used to be floored for a couple of months when glutened.

Overall, despite being more sensitive and having a harder time finding safe food, my quality of life is much better now.

[IrishHeart]

I can usually get back to normal within 3 days or so once the gluten is gone, and I can even make it to work when glutened as long as I spend a few hours next to the toilet in the morning. I used to be floored for a couple of months when glutened.

Overall, despite being more sensitive and having a harder time finding safe food, my quality of life is much better now.

This is very encouraging to hear. Thank you very much for sharing this.

I am being very patient with the healing process, but because of the lingering bone/muscle pain, it is not easy some days

I do appreciate hearing success stories.

[MrsVJW]

I have to wonder if some of ya'll are also dealing with allergy reactions to wheat/gluten. I never did a diagnosis for celiac, but I went off wheat after I was having a lot of skin issues, rashes, etc., and an elimination diet showed wheat as the clear problem. My doc pretty much said "welcome to the world of adult-onset allergies!" and that was that.

I did have some digestive issues in the wheat days, but it's been forever since I've had that type of reaction. But I do have an allergic reaction to the slightest CC. People who can eat Chebe breads - good for you! I can't!

The good thing is that Benedryl does work when I have an obvious problem, RX cream if it's particularly bad. And there are still places I can eat out, although options get even more limited (I can eat the Five Guys burger, but if I try to go for multiple toppings, I always have problems later).

The funniest thing is that I do NOT have a gluten-free household... still keep some wheat-flour bread products around for my husband. Sure, I have to use gloves when I handle them (bread cumbs caught under fingernails have been a problem for me) and he's got his own special "gluten" skillet if he wants a grilled sandwich, and it means basically wiping down the entire kitchen after he's made himself a sandwich, but I've learned how to handle it. And it's now rare for me to have a reaction actually caused by his bread or spaghetti-os... it's usually some ingredient/flour CC that does me in, not any of his stuff.

Edit to add: And I'm still mourning cheese/dairy. But I find that as long as I remember to pop a Lactaid caplet before I eat, I'm usually OK.

[IrishHeart]

I have been tested for allergies. Nothing there.

[dilettantesteph]

This is very encouraging to hear. Thank you very much for sharing this.

I am being very patient with the healing process, but because of the lingering bone/muscle pain, it is not easy some days

I do appreciate hearing success stories.

It did take awhile, but things keep getting better and better. After not being able to work for about 16 years, I am now employed again. I went for a 5k run the other day with my daughter. I haven't been exercising much, but I still ran at a better pace than I did in a 5k race which I trained for a couple of years ago. That was two years gluten free and now it is over 4. Healing and figuring out the diet can take a long time when you have lived with the illness for as long, and gotten as sick, as some of us. I too had bone and muscle pain, but it is mainly gone now, except for the inevitable cc days.

Patience and challenge/elimination diets were the answer for me.

[IrishHeart]

It did take awhile, but things keep getting better and better. After not being able to work for about 16 years, I am now employed again. I went for a 5k run the other day with my daughter. I haven't been exercising much, but I still ran at a better pace than I did in a 5k race which I trained for a couple of years ago. That was two years gluten free and now it is over 4. Healing and figuring out the diet can take a long time when you have lived with the illness for as long, and gotten as sick, as some of us. I too had bone and muscle pain, but it is mainly gone now, except for the inevitable cc days.

Patience and challenge/elimination diets were the answer for me.

That is where I am right now. Patience and elimination diet. I was very sick for a long time and I do expect a long recovery.

Thanks again for telling me about your own recovery from the bone/muscle pain. It is great you can exercise again. I have just started using light weights. Many members, Gemini, lovegrov, et. al. all told me it took them some time for these specific issues to resolve, but it happened. So, I remain hopeful.

[Skylark]

I have to wonder if some of ya'll are also dealing with allergy reactions to wheat/gluten. I never did a diagnosis for celiac, but I went off wheat after I was having a lot of skin issues, rashes, etc., and an elimination diet showed wheat as the clear problem. My doc pretty much said "welcome to the world of adult-onset allergies!" and that was that.

I think I have that to some degree. My gluten reaction is a mix of classic celiac stuff like canker sores and GI trouble and mild asthma.

Once I went off grains, I realized that eating that gluten-free baked goods triggers my mild asthma. I have ruled out rice, corn, potato starch, and xanthan gum. I still need to track down tapioca in a pure form to challenge but I'm betting it's wheat.

[mysecretcurse]

Yes, skin issues are probably my number one symptom other than mood/behavioral issues. The tiniest cc exposure to gluten (even a washed pan) and I get large, extremely painful cystic acne like lesions all over my face and sometimes scalp and even my neck. Along with that I get very disorientated, dizzy, nauseated (sometimes vomiting) hot/freezing flashes, rashes on my skin, extreme behavioral and mood issues like self harm or suicide attempts, constipation, bone/joint pain.

It's good to know some of you guys experienced healing and that it took a long time. I'm not sure how long I am supposed to wait for this to start getting better. It's scary how much worse it's gotten. Even if I had refractory sprue, why would it get worse than it was originally....

[dilettantesteph]

Even if I had refractory sprue, why would it get worse than it was originally....

That does seem to be consistent with getting sensitive to lower levels over time as happens to many of us.

Elimination/challenge diets have been the answer for me. One new thing/week only works best since it can take awhile for a reaction to show up.

I hope you get things figured out.

[dilettantesteph]

I have to wonder if some of ya'll are also dealing with allergy reactions to wheat/gluten. I never did a diagnosis for celiac, but I went off wheat after I was having a lot of skin issues, rashes, etc., and an elimination diet showed wheat as the clear problem. My doc pretty much said "welcome to the world of adult-onset allergies!" and that was that.

I'm pretty sure the OP has wheat allergy as well as gluten intolerance. I think that she has posted about it. I could put you in touch with her, or you could search her posts.

[weluvgators]

Yep, we have wheat/gluten allergy and coeliac issues. I can't make sense of it all. We have figured out that there are people that research "allergy" . . .and the wheat allergy isn't messed with much because it often has respiratory and/or cardiovascular implications that can be severe and life threatening. And then there are people that research coeliac. And there does not currently seem to be anyone that researches both. So we are in no man's land when it comes to understanding our condition. I just want it all to make sense.

And for three of us with wheat/gluten allergy issues, they are children. . . so no "adult onset" anything for them. I just hope this all makes sense to me some day! Of course, I would settle for it to all just "go away" too, but that doesn't seem to be happening . . . so I am left with just trying to understand it . . . even a little bit!