"Super Sensitive" Celiacs.....

[jerseyangel]

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.

[ravenwoodglass]

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.

[lizard00]

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.

[Jestgar]

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.

[ravenwoodglass]

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.

[MaryJones2]

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.

[jerseyangel]

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.

[lizard00]

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 Sometimes I wonder too about genetics, and if certain genetic coding predisposes one to be more sensitive to gluten and other substances.

[jerseyangel]

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.

[ive]

Thanks for recreating the thread Patti

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...

[num1habsfan]

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.

[jerseyangel]

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

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)

[num1habsfan]

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 .

[dilettantesteph]

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.

[jerseyangel]

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 ).

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.

[lizard00]

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.

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...

[jerseyangel]

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.......

[lizard00]

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.

[JNBunnie1]

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.

[marciab]

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 ?

[Gentleheart]

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?

[marciab]

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 ...

Open Original Shared Link

[lizard00]

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.

[MaryJones2]

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.

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."

[marciab]

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 ...