"Super Sensitive" Celiacs.....

[jerseyangel]

I thought this thread might be helpful again, as I've been reading many posts from folks dealing with super sensitivity.

[GFinDC]

Good thot Patti. This is a good one for surely.

[T.H.]

Ooh, yes, I missed it the first time around!

I kind of want to share how I arrived at figuring this out, my own sensitivity, I suppose in part because maybe it might help someone else. It's just a bit wacky, heh.

Before my diagnosis, I was one of the 'silent' celiacs. After I went gluten-free with my celiac diagnosis, and I was sick within days with dizziness, nausea, headaches and joint aches, other fun stuff, and then after two weeks, an inability to breathe after eating certain foods that seemed to involve my throat swelling up on me. It was really scary, and my diet dropped to less than 10 foods, because these were all that seemed to not make me sick, and still let me breathe. Corn was among the worst, so I figured I must have an issue with corn, too, and avoided anything even derived from it, religiously.

I lived like this for nearly a year. I was tested for food allergies, and my worst reactions seemed to correlate with those, but my allergies were supposed to be mild and wouldn't account for how badly I was reacting. My GI doc thought I might be hyper-reacting because I'd had celiac disease for quite a while (21 years, is the best guess, currently) and my body was essentially 'freaking out.' He'd seen that in patients before, and it usually went away within 6 months to 2 years. The dietician and I worked really hard to find foods I could eat, vitamins I could take, anything to add more nutrition to my diet, and it failed over and over and over.

And then a few months back, it all started to come together.

During hay fever season, my throat would close up so often I couldn't leave my house safely. I had to wear a dental hygienist mask just to cook. I couldn't go out of my room when my family was eating because if I stayed around places where gluten-free flour had floated in the air or there were strong smells, my throat would 'poof' on me. I started having trouble with some of the only foods I could eat, so ended up dropping my only oil, and the flours that were made from the only 2 grains I could eat, and finally one of the grains entirely.

It finally had me going to an allergist, something I'd avoided because my first experience was not good. Second experience wasn't good either. Third experience, because my husband urged me to try, was WONDERFUL. That doctor is awesome. And he realized that I have something called irritant induced vocal cord dysfunction - my vocal cords try to shut, and close off my airway, when inhaled or ingested irritants contact them. A little physical therapy, and this is no longer an issue.

But dropping all those foods in the months before this diagnosis had done something I hadn't been aware off, which was to make me, for the first time, completely and utterly gluten free, not just <20ppm gluten free. NO gluten in my diet whatsoever, not even the teeniest, tiniest trace.

And when that happened, my symptoms sort of...solidified, I guess I'd say. The dizziness, aches and pains, headache - turns out it's all typically part of the same reaction, I just get it at certain steps along the way. I don't know that I would have figured it out if it weren't for the fact that the first time I had a serious gluten reaction, it was to something that made my daughter have a gluten reaction as well, and suddenly I had that perfect lightbulb above the head moment. I've had this theory, that it's all gluten, tested out a few times (not on purpose, always, unfortunately) and it seems to track.

Since then, I've found some lovely people who also have this issue (thank you to this board for everyone who has EVER posted on being sensitive, by the way - that has always helped!), and now I'm doing so much better.

And it's been better for my kids, too, since I started looking into gluten and their 'bad' foods. We all seemed to be reacting to corn; now I believe it's the cross-contamination that is typically present in corn, because we all get the gluten reaction when we eat this stuff. The kids seemed to have trouble with soy; also a big gluten contaminated product. My daughter - more sensitive than my son - had this weird thing where she'd sometimes seem to react when she ate lots of fruit. It was really odd, not consistent between brands, and I looked at fructose malabsorption for a while, but that didn't fit. It was only after reading about other sensitive celiacs reacting to sprays on apples that used gluten as a binder that I started to wonder if that was it.

We've been peeling her apples since then, and so far, she hasn't had trouble with apples any longer, so I'm leaning towards thinking that this was her issue, too.

Of all the fruits and vegetables that made me so sick before, I have tried quite a number now that I can peel, and if I peel them, I can eat them now without trouble. I tried one with the peel and WHAM, had a gluten reaction (vertigo, nausea, all that fun stuff).

So, yeah, it's been a really strange journey to get here, I think. I hear a lot of celiacs start out thinking everything is gluten, and then finding other sensitivities, and here I am, thinking I have lots of sensitivities and finding out it's all gluten. I guess it's like my husband always says: I always seem to go at everything back-asswards, but I still eventually figure them out.

[jerseyangel]

Glad you found the thread, Shauna

I hear ya--I've told my long story before (and my apologies to anyone reading, being subjected to it again) but I had low-level symptoms for my whole life, really. As a child, I had what was referred to as a "sensitive stomach" and I would have upset stomachs a lot, headaches, and would get very dizzy after Communion at church. There were times I had to leave and go outside to get some fresh air.

I had some relief during my teens--I enjoyed myself and actually forgot about my stomach, eating and drinking pretty much anything I wanted.

It was after the birth of my second child that I began to have nausea, dizziness, and anemia and the occasional panic attack. I lived with those for 20 years or so until I got the flu in late 2003. I was never the same after that, chronic D, nausea, weight loss, tingling and numbness, fatigue, worsening anemia (could not stand for more than a few minutes), easy bruising, eczema, and anxiety.

When I went gluten-free initially, I felt better. The D stopped and within 6 months my anemia was resolved. About 6 weeks into it though, I began to have all of my digestive issues back and through a long process that included visits to an allergist/immunologist I found out through elimination that I was sensitive to several other foods.

Eliminating those other foods helped a lot but I noticed that anytime I tried a new food (processed--even if it was marked gluten-free and I heard about others with Celiac being able to enjoy it)--I reacted with the by now familiar D, nausea, anxiety, and sometimes migraines. Every single time, I believe it was the minute amount of cross contamination either from being produced on shared lines or even sometimes in a shared facility.

I went back to exclusively whole, non-processed foods except for a couple things from Enjoy Life Foods. Stayed that way for a while and did fine. Now, even at 5+ years gluten-free, I still try only one "new thing" at a time to be sure that if I react I know what I'm reacting to.

It was disconcerting to me that I didn't go gluten-free and begin to feel better and keep improving. I felt very alone at first, and it was so nice to hear that there were others like me.

Anyway, I'm glad you have figured out a lot of what was bothering you and I hope you continue to do well.

[jerseyangel]

Good thot Patti. This is a good one for surely.

Thanks, Gee!

[dilettantesteph]

What a blast from the past! It was interesting to re experience my evolution as a celiac. How useful this thread was to help me figure out my problems. It contained a lot of drama too. These days I am even more sensitive to cc than I was then. I still haven't found any other underlying issue, unfortunately. It would be great if I could get treatment for something else and then be able to eat all the typical gluten free items easily available everywhere. My life is one big elimination diet.

On the plus side, I have figured out for the most part what I can eat, and I can have long periods when I'm not sick now. When I do get glutened, it isn't nearly as serious as it used to be. I even participated in a minitriathlon this past summer and I trained hard for it all the previous year. Actually, the training helped point out further food items that I was having trouble with. Life is good.

[jerseyangel]

What a blast from the past! It was interesting to re experience my evolution as a celiac. How useful this thread was to help me figure out my problems. It contained a lot of drama too. These days I am even more sensitive to cc than I was then. I still haven't found any other underlying issue, unfortunately. It would be great if I could get treatment for something else and then be able to eat all the typical gluten free items easily available everywhere. My life is one big elimination diet.

On the plus side, I have figured out for the most part what I can eat, and I can have long periods when I'm not sick now. When I do get glutened, it isn't nearly as serious as it used to be. I even participated in a minitriathlon this past summer and I trained hard for it all the previous year. Actually, the training helped point out further food items that I was having trouble with. Life is good.

Thanks for weighing in with your update I'm so happy to hear that you're doing well!

I can relate to being more sensitive but the actual glutening reaction not being as serious. Mine used to take a long time to resolve and now it's more like a few days at the most. Mine are now more emotional and less digestive--the opposite of what they started out as.....go figure

[Loey]

Thanks for recreating the thread Patti

From what I remember of my post in the first thread: I know that as time as gone by, I've gotten more sensitive. When I first went gluten-free, I was so thankful that I wasn't like so many here who are sensitive and have other intolerances...

HAHAHA the jokes on me!

I think I finally had to accept it, too, that I was waaayy more sensitive than I thought I was. But for awhile I couldn't figure out why I would have "the burn" when I was soo sure that I hadn't had gluten. But I am realizing now that it was trace amounts. I think I wanted to believe that I could use the shortcuts like others, but I'm pretty much making everything from scratch these days.

On the lastest saga... I know I can't have dairy, but I have also eliminated soy and corn. How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things? I've known for a while that I can't handle soy because every time I cook with earth balance, it made me feel gross. I also have found that I can tolerate limited amounts of grains at one time.

This really is frustrating. I used to be able to eat anything, and now I am so reactive to foods. I feel like I live in my kitchen.

I can't handle soy at all and at this time I don't think I can handle corn (I'm still on the elimination diet and haven't reentered it). But for me Soy tends to be the worst offender.

Loey

[Loey]

I was thinking it would be nice to have a thread where we can kick ideas around that work for us, as well as share our frustrations with others who understand.

My original thread on the subject was inadvertantly lost, but there was so much interest that I'd like to try again.

After being gluten-free for a good three and a half years, I find myself just as sensitive--if not more--than I was when I started. My reactions have gotten less severe, but they tend to drag on a lot longer. One thing that has improved greatly is the anxiety. Before I was diagnosed, I had full on panic attacks. I've not had a panic attack since going on the diet, and the near-crippling anxiety is all but gone after taking about 18 months to begin to improve.

I still can't tolerate things made on shared equipment with gluten, and so many of the products that are tolerated well by other Celiacs cause me to react. I had a real problem dealing with this for a long time, obsessing on trying to figure out "why?".

I think I have finally arrived at a place where I accept things the way they are--that this is me. I do wonder sometimes if it is because of the years I was ill and continued to eat gluten because no one knew what was wrong. Could be, I'll never really know.

Thanks for restarting the thread. I know how much work goes into it!

Loey

[Loey]

So I am super sensitive and in fact have severe neurological symptoms if I inhale gluten. I know some of you have mentioned you have had similar reactions from inhaled gluten and I need to know does it get better after you heal? Will I always react so severely and to nothing at all? I find myself in a position that I need to go back to work but I really can't be in an office setting so I am wondering how I could get a potential employer to make accommodations for me to be a virtual employee and what I should say about whether this is permanent or something that might get better over time?

I was diagnosed 1 1/2 years ago and finally following an even stricter version of SCD I am beginning to feel good again and finally able to function. But my world is still pretty limited because anywhere I go in public I have to be careful of gluten and I first get a blinding headache that tells me I am being exposed and must leave immediately. If I leave the area my head begins to clear but if I linger too long I become very ill.

Before anyone replies that inhaling gluten can't possibly cause these symptoms please restrain yourself. Not believing my reaction does not add any value to my question or my situation. And I am glad for those of you who can't imagine this reaction because it means you don't have this kind of an issue. I want to hear from the folks who also have issues with inhaled gluten causing severe neurological issues like blinding headache, problems with cognition, memory, language then motor skills culminating in an overwhelming need to sleep as if drugged (and GI symptoms set in within 12-24 hrs).

And I guess I need some tips on how I can live with this type of reaction and still make a living for my son and I.

I don't think anyone here would ever doubt that you're being CC'd by inhaling gluten. I have had it happen in the market when I walk by a bread sample. We're all here to support each other and no one is going to do anything other than that. Some people might have stronger reactions than others and some people might not get CC'd. All you're going to get here is empathy.

Loey

[jerseyangel]

I can't handle soy at all and at this time I don't think I can handle corn (I'm still on the elimination diet and haven't reentered it). But for me Soy tends to be the worst offender.

Loey

Hi Loey

I still can't tolerate soy. Now corn, I stayed completely away from for a couple of years and I can now eat it again--same with dairy. I was dairy free for a very long time.

Seems a lot of us have problems with soy.

Another thing I discovered recently is that as well as getting digestive problems from coconut, I get migraines from using it topically--as in shampoos and soaps. I thought at first it was fragrances, but when I switched to all unscented products, the migraines actually got worse.

It seems coconut or coconut derived ingredients are in virtually all commercial shampoos and most natural soaps. After much searching, I found shampoo bars and soaps that are coconut free. I can't tell you what a difference this has made for me--my skin is no longer dry and tight and best of all the migraines have stopped.

Of course this has nothing whatsoever to do with gluten, but it was such a huge discovery for me that I wanted to share

[GFinDC]

Hi Loey

I still can't tolerate soy. Now corn, I stayed completely away from for a couple of years and I can now eat it again--same with dairy. I was dairy free for a very long time.

Seems a lot of us have problems with soy.

Another thing I discovered recently is that as well as getting digestive problems from coconut, I get migraines from using it topically--as in shampoos and soaps. I thought at first it was fragrances, but when I switched to all unscented products, the migraines actually got worse.

It seems coconut or coconut derived ingredients are in virtually all commercial shampoos and most natural soaps. After much searching, I found shampoo bars and soaps that are coconut free. I can't tell you what a difference this has made for me--my skin is no longer dry and tight and best of all the migraines have stopped.

Of course this has nothing whatsoever to do with gluten, but it was such a huge discovery for me that I wanted to share

Coconut seems to get me too now. I am going to try it again one of these days to be sure, but I have been avoiding it for while now.

[weluvgators]

It finally had me going to an allergist, something I'd avoided because my first experience was not good. Second experience wasn't good either. Third experience, because my husband urged me to try, was WONDERFUL. That doctor is awesome. And he realized that I have something called irritant induced vocal cord dysfunction - my vocal cords try to shut, and close off my airway, when inhaled or ingested irritants contact them. A little physical therapy, and this is no longer an issue.

Thank you so much for this! I am consulting with a new allergist . . . hoping it goes better this time, as the last one just shrugged his shoulders and didn't know how to help us. I was "asymptomatic" when I went gluten free as well, and now I find myself dealing with a similar symptom. So are you now able to be around airborne gluten in any form?

Thanks for sharing!

[T.H.]

It's kind of mind-blowing, isn't it, when we go from 'nope, not noticing this is gluten' to 'OMG, what the heck?!!!'

So far, I can go near gluten and breathe okay - or I can recover my breathing with some relaxation exercise before I go into a known gluten hazard or after my throat is weird, but I seem to get glutening symptoms, so I haven't tested it too much.

I have noticed, though, that many of the foods that made my throat have the most trouble seem to be either big on the gluten CC list, for me, or are one of my low level allergens. Maybe it might be the same for you?

Shauna

Thank you so much for this! I am consulting with a new allergist . . . hoping it goes better this time, as the last one just shrugged his shoulders and didn't know how to help us. I was "asymptomatic" when I went gluten free as well, and now I find myself dealing with a similar symptom. So are you now able to be around airborne gluten in any form?

Thanks for sharing!

[padma]

Hi, all. I am new to this forum, so thanks for posting so much great info. I have only belonged to one other forum, The Canary Report, so have some experience with threads.

I'd like to share some feedback with the greatest respect... If you broke this thread into topics, like oats, soy, multiple allergies with celiac, IBS, dairy, skin issues, emotional support for a specific person, etc, it would be much more useful. I am trying to find specific helps and reading 31 pages of posts to find the ones that I need is overwhelming. I think at first, when this was new, finding info was easy. If you go to TheCanaryReport and see how their discussion topics are broken up, you'll see how easy it is to find specific information.

Is there a "search" on this thread?

I do appreciate there is a special place for super sensitive people. Everywhere else I looked online was not helpful at all given my sensitivity.

[psawyer]

The search function is context sensitive. If you use it while viewing a topic, it will by default search only that topic. You can change this via the pull down menu to the right of the search box.

[lolipopins]

I just wanted to say thank you all for sharing and EXISTING! I'm sorry you all suffer as I do, but thank GOD I'm not crazy. I really believe I'm conjuring these symptoms as I've been told for 18+ years.....I know I'm sick but i question sometimes if all this stress over the food is really necessary. I know it is, I know this is what I have to do, but it gets to be to much some days and then I find this healing community Living my life and sharing my struggles. Thank you all for the details and strategies. I've been gluten-free for 2+ years, my daughter and son are gluten-free as well, Daughter is seeming to be super sensitive as well. I have a hard time convincing the husband to not sneak G to my son who is seemingly much less reactive and has delayed reactions. Its a journey...the Holidays make it bumpy, but you guys really help. Thanks!

[Chaff]

Thanks for reviving the thead -- I hadn't seen it before, and I scrolled through tons of pages and took some notes. Lots of useful information buried in here!

[TiffanyKatherine]

In reality I have given up soy, except for maybe oil and soy lecithin. Gluten free flours and pastas with soy would give me bad stomach issues and pains, usually on my left side.

Cathy

The left side is my worst enemy for pain.

[TiffanyKatherine]

A few months ago, I had stool testing for food intolerances by Dianos-Techs and was glad I did. It showed that I getting gluten antibodies still and that I was allergic to egg whites. I'd been making my own mayo with eggs so this was a shock. I thought I was fine with them. It came back positive for candida and some kind of digestive immune system problem too ...

Genova is another lab that looks at food intolerances .. does Enterolab look at all that too ?

Does anyone know if doctors in Canada would test for gluten antibodies showing up in stool or saliva? I seen the site and they did both stool and saliva testing kits

[TiffanyKatherine]

oh honey, let me help you out...

http://www.celiac.co...showtopic=41099

Ohh la la, I am heading there right now!

[kareng]

Ohh la la, I am heading there right now!

That is a post from 2009 linking to a 2007 post. 5 year old product info is out of date. You might want to verify if it is the same now.

[1desperateladysaved]

When I first began the forum we thought I might have got ideas from the Super=sensitives and "copied them". Now I believe that I found my reactions, because you helped to define them. I was super sensitive all along and knowing it could happen didn't change that.

My symptoms 6 months later are more undeniable than ever. I keep marveling that I really am acting like a celiac. I keep wondering how nobody around me thinks it seems like too big of deal physically. Just keep doing your job until you drop dead? Really.. "It is just my choice to follow the diet?! The stress is really hard to take lately. Even with physical improvement I long for markers of progress and someone who will ask how it is going and truly want to know. Someone who will counsel me maybe I shouldn't eat something. Someone who does not eat it infront of me.

Sorry, I didn't make it to the end of the thread, yet and must sign off.

[Celiac Mindwarp]

(((((((Hugs)))))))

[mushroom]

Just keep doing your job until you drop dead? Really.. "It is just my choice to follow the diet?! The stress is really hard to take lately. Even with physical improvement I long for markers of progress and someone who will ask how it is going and truly want to know. Someone who will counsel me maybe I shouldn't eat something. Someone who does not eat it infront of me.

Yep. No one told us when we were younger how tough we would have to be, or we would have trained harder (although I got some pretty good training along the way -- and one kind person who took me under her wing because she understood ) Funny how those people stand out in our lives -- that one person, and my 8th grade teacher probably saved my life.

The only people who understand celiacs are celiacs. I hope your path gets easier and your coworkers more understanding. May you find someone to take your side, to hold your hand and guide you through the celiac doldrums. I would if I were there, because I KNOW!