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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

That Moment When You Find The Answers To It All
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12 posts in this topic

I've been MIA for quite a while now, and I just thought I'd update as to what I've been doing, because I just got a diagnosis that is SO weird, but it explains everything AND it could be relevant for a few folks here, so I thought I'd share.

 

I react to crazy small levels of gluten, and have written in the past that I turned out to ALSO react to crazy small levels of sulfites, it turns out. I thought that might explain some of my unknown reactions, but it was still so crazy, how much I reacted to. Some things still didn't quite fit, not like they did for some others I know with these two issues.

 

I react to walking through a bakery, I react to what I assumed were very small particles in the air as the smell of certain bakes goods has set me off. I had a very hard time staying well, and had to avoid anything that has any gluten contamination possible, or sulfite contamination, even the teeniest, tiniest amount. I buy produce from famers I interview to avoid any contamination on the produce, and same for ranchers and fisherman and so on. And still sometimes I would get sick and react and couldn't even find a reason for it.

 

Sometimes it felt like I was reacting to the whole world. And I know some folks here struggle with that too, where they are reacting over and over, and it feels like there is gluten AND something else and they just can't get a handle on it, you know?

 

Turns out, there is a condition that can make a person this sensitive; a few related conditions, actually. Mastocytosis is one of these, and Mast Cell Activation Disorder is another. These are WEIRD disorders. Mast cells are usually triggered by an allergen and release a cocktail of goodies into your body (like histamines), and can eventually cause anaphylaxis, but they can skip that side of things and instead cause inflammation, neurological problems, gut pain, and all sorts of fun stuff. 

 

Those with a mast cell disorder have mast cells that can trigger without the presence of an allergen. They have, instead, 'triggers.' These can be foods, like gluten, or chemicals, or even smells - not particles in the air, but an actually  scent hitting the nose can trigger these suckers. And even more fun, things like, say, taking a hot shower, or getting a cold or flu, can trigger these cells to start an allergic reaction.

 

It can take very, very little to trigger mast cells for this condition, so miniscule traces of a trigger can set it off.

 

I have just been diagnosed with mast cell activation disorder (it was only officially given a name in an international conference 3 years ago, so I'm lucky to have gotten the diagnosis!). While I am a celiac, gluten is ALSO one of my triggers. I do not have a normal allergic reaction, like hives, that would have clued me that mast cells are involved, which can happen with this disorder. I instead get neurological reactions.

 

Whether the celiac disease AND the mast cells are doing this to my brain, I don't have any real way to tell. But if they both do, it would explain the huge whammy I get hit with when I've gotten gluten contamination in the past. 

 

 

Mastocytosis is considered an orphan disease, less than 200,000 in the USA. I believe MCAD has fewer people diagnosed than that. HOWEVER, some experts who are diagnosing this have said that they believe MCAD may be more a case of 'rarely diagnosed' than actually rare, because they are finding more and more folks with this. There is a slightly higher risk for those who have auto-immune disorders.

 

A number of the MCAD folks I've met cannot tolerate gluten at all, either, and seem to have very severe symptoms to gluten contamination. And they react to very, very low amounts of most of their triggers, so they'd likely have been considered super-sensitive celiacs/gluten intolerants, too.

 

So if you are still struggling and searching for answers even while very gluten free, and can't seem to eliminate all contamination that is causing you problems, it might be worth your while to explore this. 

 

And as for me, I finally have an answer....it's kind of a crummy answer, because there isn't a cure, and a lot of folks with this end up very isolated, because you have to avoid what 'triggers' you, and that's in a lot of places, usually. But there is hope in the form of certain dietary changes, too, which at least now I know enough to pursue.

 

And the best news is that it may offer hope for my daughter's continuing ill health as well - she's getting tested in 2 weeks. And for the first time, when I speak to people in who have this, they hear her symptoms and quite a few have said: yeah, I get all those symptoms. That has been the first time EVER that someone has had some of her stranger symptoms. 

 

Wishing you all good luck in all your own health battles, and good luck, as well, in figuring out how to live with what you have, and be strong, and staying positive. :-)

 

 

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Wow, thanks for posting this, it was very informative and I am so glad you were able to get some answers.  Having that "click" moment is one of the best things ever.  

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I've been MIA for quite a while now, and I just thought I'd update as to what I've been doing, because I just got a diagnosis that is SO weird, but it explains everything AND it could be relevant for a few folks here, so I thought I'd share.

 

I react to crazy small levels of gluten, and have written in the past that I turned out to ALSO react to crazy small levels of sulfites, it turns out. I thought that might explain some of my unknown reactions, but it was still so crazy, how much I reacted to. Some things still didn't quite fit, not like they did for some others I know with these two issues.

 

I react to walking through a bakery, I react to what I assumed were very small particles in the air as the smell of certain bakes goods has set me off. I had a very hard time staying well, and had to avoid anything that has any gluten contamination possible, or sulfite contamination, even the teeniest, tiniest amount. I buy produce from famers I interview to avoid any contamination on the produce, and same for ranchers and fisherman and so on. And still sometimes I would get sick and react and couldn't even find a reason for it.

 

Sometimes it felt like I was reacting to the whole world. And I know some folks here struggle with that too, where they are reacting over and over, and it feels like there is gluten AND something else and they just can't get a handle on it, you know?

 

Turns out, there is a condition that can make a person this sensitive; a few related conditions, actually. Mastocytosis is one of these, and Mast Cell Activation Disorder is another. These are WEIRD disorders. Mast cells are usually triggered by an allergen and release a cocktail of goodies into your body (like histamines), and can eventually cause anaphylaxis, but they can skip that side of things and instead cause inflammation, neurological problems, gut pain, and all sorts of fun stuff. 

 

Those with a mast cell disorder have mast cells that can trigger without the presence of an allergen. They have, instead, 'triggers.' These can be foods, like gluten, or chemicals, or even smells - not particles in the air, but an actually  scent hitting the nose can trigger these suckers. And even more fun, things like, say, taking a hot shower, or getting a cold or flu, can trigger these cells to start an allergic reaction.

 

It can take very, very little to trigger mast cells for this condition, so miniscule traces of a trigger can set it off.

 

I have just been diagnosed with mast cell activation disorder (it was only officially given a name in an international conference 3 years ago, so I'm lucky to have gotten the diagnosis!). While I am a celiac, gluten is ALSO one of my triggers. I do not have a normal allergic reaction, like hives, that would have clued me that mast cells are involved, which can happen with this disorder. I instead get neurological reactions.

 

Whether the celiac disease AND the mast cells are doing this to my brain, I don't have any real way to tell. But if they both do, it would explain the huge whammy I get hit with when I've gotten gluten contamination in the past. 

 

 

Mastocytosis is considered an orphan disease, less than 200,000 in the USA. I believe MCAD has fewer people diagnosed than that. HOWEVER, some experts who are diagnosing this have said that they believe MCAD may be more a case of 'rarely diagnosed' than actually rare, because they are finding more and more folks with this. There is a slightly higher risk for those who have auto-immune disorders.

 

A number of the MCAD folks I've met cannot tolerate gluten at all, either, and seem to have very severe symptoms to gluten contamination. And they react to very, very low amounts of most of their triggers, so they'd likely have been considered super-sensitive celiacs/gluten intolerants, too.

 

So if you are still struggling and searching for answers even while very gluten free, and can't seem to eliminate all contamination that is causing you problems, it might be worth your while to explore this. 

 

And as for me, I finally have an answer....it's kind of a crummy answer, because there isn't a cure, and a lot of folks with this end up very isolated, because you have to avoid what 'triggers' you, and that's in a lot of places, usually. But there is hope in the form of certain dietary changes, too, which at least now I know enough to pursue.

 

And the best news is that it may offer hope for my daughter's continuing ill health as well - she's getting tested in 2 weeks. And for the first time, when I speak to people in who have this, they hear her symptoms and quite a few have said: yeah, I get all those symptoms. That has been the first time EVER that someone has had some of her stranger symptoms. 

 

Wishing you all good luck in all your own health battles, and good luck, as well, in figuring out how to live with what you have, and be strong, and staying positive. :-)

Right, I will be sharing this with my health providers.  It fits!  How were you tested for it please?  I also am wondering if your IgA and IgG and IgE levels are at normal levels.

 

I keep saying nobody else is trying to claim they are reacting to things they smell! (Well, a bit exaggerated). After all, isn't hayfever a reaction to airborne particles My IgA level is LOW.  Mysterious abound. 

 

I hope you have no problems with computers and we will hear from you a lot more.

 

Irish Heart mentioned about having to live in a bubble the other day.  I am wondering if I need to start shopping for one.

 

D

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Irish Heart mentioned about having to live in a bubble the other day.  I am wondering if I need to start shopping for one.

 

D

 

 

NO. Let me be very clear about this: I can assure you that it was was not me who said that to you. . 

I do not think anyone needs to live in a bubble.

 

I am very familiar with mastocytosis because I have read a lot about it while researching because I have a histamine intolerance.

But I control it with appropriate dietary choices.

 

Several people on here have issues with histamines, but they do not necessarily have mastocytosis. I never suffer anaphylaxis.

 

I would caution people from assuming they have this rare disorder just because it's been given a name.

 

To TH

 

I am glad you found an answer to your continuing health issues. Good for you!

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Great to hear you were diagnosed and now have some answers. I do hope you'll find the correct combination of medication and diet for improved health.

I am curious how you were diagnosed? Which blood and urine tests? Bone marrow biopsy? Which discipline of doctor? ....as mast cell degranulation is an issue for me, but I have yet to obtain a diagnosis from my team of docs.

Thanks!

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1desperatelysaved and GottaSki - My IgA levels are normal, my IgG levels are normal, and my IgE levels are normal, too.

 

I contracted a little virus a few months back, nothing big, but it sent everything into a tailspin so I was back at the doctor's looking for answers. A new doctor had just come into town a few weeks back, who specialized in both Immunology and Allergy (I actually don't know what that makes her. Both an allergist and an immunologist, perhaps?). She'd just solved a couple of my doctor's 'mystery' patients who had lots of problems and no answers, so he sent me over to her.

 

I was given a whole host of blood and urine tests, but the one that was the biggest 'ding' was the 24 hour urine test for prostaglandins and methyl histamines (I believe that's the second term?) Both of these were through the roof for me. 

 

I was not given a bone marrow biopsy because some of my test results made it clear that mastocytosis was unlikely, so the doctor didn't feel a biopsy was warranted.  I know that the mastocytosis society has a links to various doctors who specialize in this, as well as tests that are typically ordered (I found the most use out of visiting both the mastocytosis society in the USA and in Canada). 

 

Irishheart - Thanks. :-)  Out of curiosity, what diet has worked well for you for the histamine intolerance? That's something I'm supposed to be looking at now, and there are so many variations of this that it's always nice to find out what's working for others, you know?

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Thanks TH!

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That's very interesting information.  What kind of doctor would I see to talk about mast cell diseases?  I haven't been to a doctor in 1.5 years. 

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Irishheart - Thanks. :-)  Out of curiosity, what diet has worked well for you for the histamine intolerance? That's something I'm supposed to be looking at now, and there are so many variations of this that it's always nice to find out what's working for others, you know?

 

I  tried a paleo diet and found myself having symptoms. Now, how could that be--I have eliminated everything people suggest?

Well, many foods I was eating are high in histamines. It was my aha! moment. I had suspected hh before, but of course, my doc back then was very skeptical "I doubt it. you don't have allergies blah blah "...yeah, okay. Not a real "thinker outside the box".that guy

 

I asked my new GI doctor about the lack of the DAO enzyme in the gut (if you have any form of gut impairment) and he said "holy cow--how'd you figure that out? yes! you could very well have a deficiency of the two enzymes that regulate histamine in the body". He feels it is temporary (as I do not have anaphylaxis and I do not have classic allergies found during testing) and suggested avoiding all high hista foods for 6 months (easier said than done) but I did a decent job of it and now, I try to follow a low histamine diet and it has resolved the red, burning skin I had, mouth, face and scalp sores, the heavy chest sensation, gut and bowel issues, and extremely sore joints and muscles (they still hurt but not as much). Most of all, it stopped the pounding heart at nighttime and the ensuing insomnia I would experience at times if I had eaten too many HH foods.

 

I found this article interesting:

 

http://thatpaleoguy.com/2011/04/11/histamine-intolerance/

 

symptoms:

 

http://www.histamineintolerance.org.uk/about/symptoms

 

and here are the dietary guidelines on this woman's blog--she did a great job spelling it out.

 

http://mastcellblog.wordpress.com/histamine-diet/

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Thanks!

 

I've been reading about the DAO enzyme just the other day!

 

My own lack of typical anaphylaxis was why it took me so long to get diagnosed, too. I guess with the MCAD thing, you can be a 'leaker' or a 'shocker.' The shockers go into anaphylactic shock easily. The 'leakers,' which is the category I fall into, have cells that leak their contents more slowly when triggered and result in much more chronic problems. It can still lead to anaphylaxis, but I was told that 'leakers' may never have anaphylaxis for years or even decades, and then something triggers it into getting worse and suddenly they get diagnosed finally.

 

Trippy stuff.

 

So glad you found out what it was, though. Nice to have a doctor who listened to you!

 

Shaunamom

I  tried a paleo diet and found myself having symptoms. Now, how could that be--I have eliminated everything people suggest?

Well, many foods I was eating are high in histamines. It was my aha! moment. I had suspected hh before, but of course, my doc back then was very skeptical "I doubt it. you don't have allergies blah blah "...yeah, okay. Not a real "thinker outside the box".that guy

 

I asked my new GI doctor about the lack of the DAO enzyme in the gut (if you have any form of gut impairment) and he said "holy cow--how'd you figure that out? yes! you could very well have a deficiency of the two enzymes that regulate histamine in the body". He feels it is temporary (as I do not have anaphylaxis and I do not have classic allergies found during testing) and suggested avoiding all high hista foods for 6 months (easier said than done) but I did a decent job of it and now, I try to follow a low histamine diet and it has resolved the red, burning skin I had, mouth, face and scalp sores, the heavy chest sensation, gut and bowel issues, and extremely sore joints and muscles (they still hurt but not as much). Most of all, it stopped the pounding heart at nighttime and the ensuing insomnia I would experience at times if I had eaten too many HH foods.

 

I found this article interesting:

 

http://thatpaleoguy.com/2011/04/11/histamine-intolerance/

 

symptoms:

 

http://www.histamineintolerance.org.uk/about/symptoms

 

and here are the dietary guidelines on this woman's blog--she did a great job spelling it out.

 

http://mastcellblog.wordpress.com/histamine-diet/

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So glad you found out what it was, though. Nice to have a doctor who listened to you!

 

 

 

He is truly one of a kind and hopefully, he'll be my doctor for the rest of my life--even though I have moved 1300 miles away.

We have a standing date for yearly followups and he returns my calls within hours.  He's in his 30's, so I am glad I do not have to break

a "new one" in. Took me years to find a doctor who understands celiac and all of the ramifications and who thinks "outside the box". I bring him articles-- and he actually reads them. I know, he's amazing. :) 

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that sounds right, I don't think I have this mast syndrome nor do I will never be getting diagnosed, I am tired with doctors already and swore not to go to see one again. but it sounds really like what could be an explanation of my sensitivity with food and chemicals.

 

I was beaten up pretty bad by gluten for about 23 years to the point of nearly got killed, and then I got rid of it and whole bunch other food that graduately added to the list of triggers. eventually it goes down to a strict rice and chicken diet.  it was frustrating as in the whole process when I am testing of adding food back or even eating a tiny bite of gluten which could set me back a million year in recovering to normal health. even more than that I don't know if I should share It with anyone is the experience I had just to picking out the right brand of rice or pot.

 

my body response differently to different brand of rice , not just different kind but different brand. it all bring some degree of discomfort well nothing majorly wrong and way manageable compared to gluten or other grain.  some rice will give me some trouble with breathing, some rice constipation, some rice joint pain some of rice a slight neronological problem etc,  i havn't figure it out whether if its the rice variety or maybe the processing method they used where some milling powder is still attached to the grain or what. but anyway it's bemusing. so i bought from grocery all the brand of rice and had a painful time stick with one.

 

also i have trouble picking out the pot cooking rice. i have reacted very badly from stainless steel pot which will give bad bloating and indigestion,  i have been sent to ER couple time just because eating the rice cooked in stainless steel. also i have trouble to non-stick, some worse than the other. so i have tried out several more pots and it becomes a relentless yet useless effort to find cookware that suits me

 

i can even react differently to different brand of chicken, some brand will bring me a low fever, some will cause insomnia, some will do other things like slowness in reaction and brain functioning. i mean chicken is chicken, how can that be different. i guess it has things to do with the water they used to soak them in to chill the chicken. so very weird

 

i will say if i took anti-depressant, it will help me get rid of unnecessary concern over things and focus more energy on positive things. however i have fear of reacting badly to drugs which i have tried millions before plus i sort of have everything under control and figured out that i can just have to live with it with or without a normal condition of health, just need to handle the mood vacillation and ready if one day i could just pass out for eating the wrong thing.  i thought if you still with a right diet for long enough time, i can graduately improve the health, but it has to be very very long time and we are not live in a chemical free world, so you will just to deal with it.

 

it's sad to live a life like this and even sadder to see i have lived a worse life past 23 years without even knows why. when you are at this point and face the quarter life crisis and all the dismayed past experience and struggle, and a unknown future, it's frustrating but well got to live day by day and make it count. i am at the end of searching for some magical pill that cure it out, still i am dreaming about it everyday that i woke up eating pizza, but to say the least, it is unrealistic right now. maybe in the future it will be actually happening. but so just be happy with the fact that the worst nightmare which is gluten is past me and i am sort of going on the right track and kept reminding me i have still need to live a life just like every other person.

 

so just sum it all the right thing to do is get a correct and simple diet and focus your attention to something else in your life.

 

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