Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

"Super Sensitive" Celiacs.....
0

478 posts in this topic

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. :D

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.

3

Share this post


Link to post
Share on other sites


Ads by Google:
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.

Me too. I actually came to the same conclusion you did, that it was the extreme length of time that I was ill that contributed to my high sensitivity. My other family members have done a lot better at being able to do shared equipment foods and restaurants and it is hard sometimes not to feel jealous and well...isolated. But then I also realize that they were no where near as ill as I was before being diagnosed.

1

Share this post


Link to post
Share on other sites

Thanks for recreating the thread Patti :D

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.

2

Share this post


Link to post
Share on other sites

I can do small amounts of soy oil (like soy lecithin in salad dressing) but any protein at all and I'm toast. Corn I can eat ~1 tortilla every couple weeks. I use this up also in salad dressing that has corn syrup.

Dairy I do fine with :)

Most of what I eat I make.

0

Share this post


Link to post
Share on other sites
How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things?

Count me in for the dairy and soy. I seemed okay with soy for a while but think I really overdid it after I went gluten free. Not being able to have soy does make it tougher. It seems to be in so many gluten-free foods.

0

Share this post


Link to post
Share on other sites




Wow. I can't believe how alike we all are. I haven't done dairy or soy in 3 years. I am learning, slowly, that corn is a problem too. It's so nice to know that I'm not alone.

0

Share this post


Link to post
Share on other sites
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 used to eat everything, too. Of course, I was often sick, but back then I never considered it might be something I was eating. It seems almost unbelieveable now, but the thought never occured to me.

I felt fine on the gluten-free diet for the first few months, but then my GI symptoms came back--worse than before. I had urgent D that kept me in the house most of the time. It would hit, and I'd have literally about 10 seconds to get to the bathroom......

Through process of elimination, I found that soy did this to me. I was already dairy free at this point, since my gastro had told me to go lactose free when I was diagnosed. In the months to come, I found that I was intolerant to corn, eggs, tapioca, and coconut. The final piece of the puzzle was legumes. Now, if I eat them I get horribly nauseous.

Luckily, after completely avoiding them for well over a year, I now can eat corn-- and eggs if they're in a recipe (not alone, like scrambled eggs).

Tapioca dries my mouth out the second I start chewing it and upsets my stomach. That's a real pain since it's in so many gluten-free mixes and things. Coconut isn't hard to avoid, which is good. :)

1

Share this post


Link to post
Share on other sites

I wonder if being a super sensitive celiac makes you more susceptible to other food sensitivities?

On a side note, my GI told me that with something like celiac that causes such damage to your gut, the chance of being completely normal afterwards is slim to none. He told me is was "damaged". LOL :lol: Sometimes I wonder too about genetics, and if certain genetic coding predisposes one to be more sensitive to gluten and other substances.

0

Share this post


Link to post
Share on other sites
On a side note, my GI told me that with something like celiac that causes such damage to your gut, the chances of being completely normal afterwards is slim to none. He told me is was "damaged".

I believe it.

0

Share this post


Link to post
Share on other sites
Thanks for recreating the thread Patti :D

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 am too intolerant to gluten, dairy, soy and corn. My other sensitivities are not as bad, meaning that I can handle limited amount of nuts / legumes, e.g. on holidays.

But it would make my life so much easier if I would be just intolerant to gluten, dairy, soy and corn and wouldn't have my additional amine / histamine intolerance! I have some kind of threshold that if I eat too much food that is high in amine / histamine I would start to have unpleasant allergic reactions that may last for 2-3 days (depending on the amount of histamine / amines I ate). It looks like it did get better when I went gluten-free, but I still have these reactions... In addition to that for some unknown reason I do not tolerate almost all vitamins / supplements, even hypoallergenic ones and even the ones that other failsafers tolerate.

And yes, I too was able to eat anything, didn't have any allergies / intolerances whatsoever. In fact, nobody in my family has any known allergies. It all started 2 years ago, first dairy, then gluten, then soy and corn. I also had cats and a dog thoughout all my childhood / youth without any issues, but now I have "allergic" type reactions if I am in the same room with a cat or a dog. It is not a true IgE allergy, it doesn't show up on any tests. My body is reacting in a weird way to a lot of different things...

1

Share this post


Link to post
Share on other sites

Sure sounds familiar!! I thought maybe I have refractory sprue, but the only specialist who even believes that I have Celiac says he doesn't think so.

January 1st was my 6th year anniversary of my start with Celiac, so next month will be my 6th year gluten-free. On the 28th, however, is going to mark my 3rd year of constant pain...which is a mystery, STILL. Still believe that it's an IBD since I do have all the symptoms, but they've never diagnosed me with me.

Who knows though, maybe it is just the Celiac being extra, extra sensitive.

I also have the problem that the pains last a MUCH longer period of time! The last time I was glutened, I don't even know how I was...I believe from a few crumbs that was accidently in something I ate at my parent's place. No joke: the pains lasted for 8 days!! And the extra symptoms (like the brainfog, nausea, etc) lasted yet longer than that.

0

Share this post


Link to post
Share on other sites

Hi Lisa! I haven't seen you posting over here in a while :D

Funny you should mention Refractory Sprue. The first time I saw my gastroenterologist here in PA, she thought that from what I was telling her about my history and symptoms that this could be a case of refractory sprue. Something told me that it wasn't, and the endoscopy proved me right. (thank goodness)

0

Share this post


Link to post
Share on other sites

Yeah, I was always still popping on but wasn't posting much until recently again. Have found a real need for everyone lately, and nobody understands each other better than Celiacs!

I haven't had an endoscopy done since January 2007, but I don't really want another....all that they found at that time was the Hiatus Hernia and Candidial Esophagitis (or however you spell it).

Oh, I've also found that DH is worsening. Even though I obviously avoid what triggers it, its been breaking out on my hands to the point where it i'm starting to look like someone I knew from my hometown who had Celiac...I remember him saying "see this? this is the dermatitis" and his hands were all purple and bumpy. It's doing this for me mainly in the finger joints!starting with the pimple-like spots and turning into hard skin that doesnt go away.

Arthritis has been more sensitive too :(.

0

Share this post


Link to post
Share on other sites

I guess I'm lucky for a super sensitive. It's been a little over a year and I can still eat everything but gluten and not too much dairy. I can't eat anything made on shared equipment. I can't even eat some things made on dedicated equipment. It depends on where they get their supplies.

I'll weigh in on the cause of super sensitivity. At first I too thought it was from going so long without being diagnosed. 30 years of stomach pain and 10 years of not being able to get to the bathroom fast enough on occasion. For the last year or so it was happening about twice a week. Pooping in your pants that much is not pretty. My son was diagnosed at 10, and at first he seemed a lot less sensitive than me, so that fit. As time goes on, he seems almost as sensitive as I. He reacts to things made on shared facilities. Even by a place that tests to 5 ppm, and he only had a small piece. So, diagnosed at 10, he couldn't have been sick for as long as I. He only had noticeable symptoms for a few months. I think the the origin of super sensitivity must be genetic, and the poor guy was unfortunate enough to inherit all my celiac genes.

2

Share this post


Link to post
Share on other sites
I haven't had an endoscopy done since January 2007, but I don't really want another....all that they found at that time was the Hiatus Hernia and Candidial Esophagitis (or however you spell it).

The endo I had last fall was my second. She also found a "small" hiatial hernia, but I don't think I get any symptoms from it unless I eat a lot at one time.

It's so discouraging when we hurt, and nothing shows up in the tests--I know it's been such a rough time for you. :(:)

I'll weigh in on the cause of super sensitivity. At first I too thought it was from going so long without being diagnosed. 30 years of stomach pain and 10 years of not being able to get to the bathroom fast enough on occasion. For the last year or so it was happening about twice a week. Pooping in your pants that much is not pretty. My son was diagnosed at 10, and at first he seemed a lot less sensitive than me, so that fit. As time goes on, he seems almost as sensitive as I. He reacts to things made on shared facilities. Even by a place that tests to 5 ppm, and he only had a small piece. So, diagnosed at 10, he couldn't have been sick for as long as I. He only had noticeable symptoms for a few months. I think the the origin of super sensitivity must be genetic, and the poor guy was unfortunate enough to inherit all my celiac genes.

Yes, the poor little guy. Bad enough we have to go through this, but I can't imagine how difficult this has to be on a child who has to go to school. :(

For the first 20 years that I was chronically ill, looking back the symptoms were nausea, persistant anemia and brain fog (didn't even know what that was till I found this board :P ).

The urgent D didn't come into play until after I was on the gluten-free diet. I had D more often in the year before I was diagnosed along with weight loss, and the tingling and numbness--and it got worse before it got better with the elimination of the other foods.

0

Share this post


Link to post
Share on other sites
It's so discouraging when we hurt, and nothing shows up in the tests

That is probably the most frustrating this for me. I know that I just don't feel right. They have tested me for all sorts of things, and everything comes back within range. Although when they tested me for vitamin D it came back "low normal" so she suggested I take a supplement. At least she doesn't think I'm crazy. :huh:

The irony is that for me, when I get glutened, I don't get D. If anything, I'm more likely to suffer from C. That really blew my doc away. My symptoms linger for somewhere around 8-10 days. I get a ferocious headache that thankfully lasts only a day, then I get what we have coined "the burn". Everything I eat hurts, doesn't matter what it is. So, I eat enough to make the hunger pain go away. That lasts for a few days, then I get reflux for a few days. Finally that wears off, but I'm tired for a few days.

All that from like an invisible crumb...

0

Share this post


Link to post
Share on other sites
All that from like an invisible crumb...

It really is mind-boggling, isn't it? What a miniscule amount of this substance can do to a human being.......

1

Share this post


Link to post
Share on other sites
It really is mind-boggling, isn't it? What a miniscule amount of this substance can do to a human being.......

Truly mind-boggling. Blows my mind.

And what's even more mind-boggling is the people who think it's really not that serious.

1

Share this post


Link to post
Share on other sites
Truly mind-boggling. Blows my mind.

And what's even more mind-boggling is the people who think it's really not that serious.

"Oh, just a little bit can't hurt."

That's my favorite, because it so clearly shows the ignorance and typically unfeeling nature of people. That's why I love my boyfriend. He's so careful with me. We have to be super-uptight, and only eat at restaurants that offer actualy gluten free products, like roll sor something. The ones that just have a lame menu with meat on it aren't ok usually, but PF Chang's and Outback have been pretty reliable.

I figured out I can't have peanuts, and my bathroom-rightnow-moveit-ohcrapdidn't....makeit.... 'events' went away, THANK GOD. That was the only effect they had on me though, no mental or breathing issues, so it took me forever to figure out it was peanuts. Not even legumes. You know, that was harder than giving up gluten? How silly is that? But you know why? Peanut butter cup ice cream. Only reason. I can make anything gluten free, try finding peanut free peanut butter cup ice cream. What a silly thing to miss so much.

1

Share this post


Link to post
Share on other sites
I figured out I can't have peanuts, and my bathroom-rightnow-moveit-ohcrapdidn't....makeit.... 'events' went away, THANK GOD. That was the only effect they had on me though, no mental or breathing issues, so it took me forever to figure out it was peanuts. Not even legumes. You know, that was harder than giving up gluten? How silly is that? But you know why? Peanut butter cup ice cream. Only reason. I can make anything gluten free, try finding peanut free peanut butter cup ice cream. What a silly thing to miss so much.

Have you tried Sunbutter ? It's made from sunflower seeds and it's better than peanut butter ..

I'm a super sensitive celiac too. It really sucks ... I'm fairly certain I'm reacting to Bob's Red Mill oatmeal now. Of course I ate it for 4 days straight so that didn't help. <_<

I don't get "D" either. At least not anymore. I had it all the time before going gluten-free but not since. I mostly get rock hard "C". TMI ... lol ...

I almost forgot ... Have you all looked at treating leaky gut ?

0

Share this post


Link to post
Share on other sites

The plain unsweetened organic version of sunbutter is delicious. Is it securely gluten free? I do know it's made in a factory with soy. But has anyone investigated it?

0

Share this post


Link to post
Share on other sites

So far I've only tried the name brand Natural Sunbutter by Sun Gold foods .. it says gluten-free on the label. I've been ok with it .. This is my 4th jar in the last 2 months ...

I forgot .. here's the leaky gut article I've been looking at ...

http://mdheal.org/leakygut.htm

0

Share this post


Link to post
Share on other sites
I'm fairly certain I'm reacting to Bob's Red Mill oatmeal now.

I had a reaction to it too. It's not hard to avoid since I'm not a big oatmeal fan, but I liked to put it in stuff.

0

Share this post


Link to post
Share on other sites
That is probably the most frustrating this for me. I know that I just don't feel right. They have tested me for all sorts of things, and everything comes back within range. Although when they tested me for vitamin D it came back "low normal" so she suggested I take a supplement. At least she doesn't think I'm crazy. :huh:

The irony is that for me, when I get glutened, I don't get D. If anything, I'm more likely to suffer from C. That really blew my doc away. My symptoms linger for somewhere around 8-10 days. I get a ferocious headache that thankfully lasts only a day, then I get what we have coined "the burn". Everything I eat hurts, doesn't matter what it is. So, I eat enough to make the hunger pain go away. That lasts for a few days, then I get reflux for a few days. Finally that wears off, but I'm tired for a few days.

All that from like an invisible crumb...

This is a lot of what happens to me. I am generally unable to function for 7-10 days and tend not to remember much about the week. It's a lost week. Then I'm yucky for 2-3 more weeks. During these times everything that goes in my mouth bothers me. I also have terrible joint pains, insomnia, migranes, skin problems, etc. I have PCOS too and I swear every time I get glutened I develop a cyst. I too have been tested for everything under the sun and not much is out of whack. I'm just "too healthy to be this sick."

0

Share this post


Link to post
Share on other sites

That was the certified gluten free one too ... I woke up with myoclonus in my hand this morning and I know it's been at least 2 years since I've done that ... It could always be a problem with oats too. I love 'em and couldn't wait to try these. Maybe my body started creating antibodies to oats proir to going gluten free since I was eating so much of them ...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined