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

That Moment When You Find The Answers To It All
0

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. :-)

 

 

1

Share this post


Link to post
Share on other sites


Ads by Google:

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.  

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

 

 

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites




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?

0

Share this post


Link to post
Share on other sites

Thanks TH!

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

 

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/

0

Share this post


Link to post
Share on other sites

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/

0

Share this post


Link to post
Share on other sites

 

 

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. :) 

0

Share this post


Link to post
Share on other sites

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.

 

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
      103,883
    • Total Posts
      919,472
  • Topics

  • Posts

    • I'm actually scared to go to the doctor and could use some advice
      Well, if I were you, I would go see your doctor and talk to him/her about all this.  Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.   About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway.  If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results.  Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
    • gluten free, oat free, egg free breakfast ideas needed for 6 year old
      If she misses the hot cereal then try quinoa or amaranth as an alternative to oatmeal
    • I'm actually scared to go to the doctor and could use some advice
      I suspect I am dealing with vitamin deficiency, but I'm afraid that if I go to a specialist they're going to think I have MS. As a person with pretty bad health anxiety, I can't bring myself to make the appointments I know I should make. I presented to my GP about 9 months ago with fatigue and a bizarre tingly feeling in my lower left leg. I was also suffering digestive distress, but I've lived with that off and on my whole life, so that was the least of my worries. My blood tests showed that my B12 level was 280. They didn't turn up any other issues, but then again she did not order any other vitamin level tests, only thyroid and routine bloodwork. She called my B12 level "on the low end of normal" and put me on oral supplements. When we retested 6 weeks later, it was 1100 and she told me to drop it back because that was too high and too much B12 can cause health issues, too. I'm confused by that because I've read that it isn't possible to take too much. I started a new career in a new town, and simultaneously began to feel better. The fatigue went away first, followed by the tingling and other stuff. Still plagued by both extremes of digestive distress. Maybe I should also mention that I was diagnosed with GERD at age 29 and have been on PPIs for 10 years. At that time, nobody ever mentioned investigating my GERD at such a young age, just put me on the pills and said stay on them. A gastroenterologist concurred after a very brief office visit. Well, I can be bad about taking my medicines, so I got off the B12. I figured maybe my earlier issues were stress-related. Now my symptoms are back, but worse. I have tingling and some aching in the leg. I have a sensation in one spot on my upper arms like the skin is burning, but no rash or redness. I have the C extreme of digestive problem, only alleviated by taking lots of magnesium citrate capsules. Sometimes I feel easily chilled, like waves of goosebumps. I am working to get off the PPIs in case they are inhibiting my absorption of vitamins. My mom has had really bad IBS all her life, plus eczema, headaches, etc. I'm back on the B12 for about 5 days but have experienced no relief yet, however I do remember that it took about 2 months to feel better the last time. Getting ready to move, on top of being really scared about these health issues, is making me crazy. I'm only 40 years old!!! Here are my questions: 1. Do I go back to the GP and ask her to order a celiac blood test? I know NOT to go off gluten until I am tested. 2. Do I ask for a referral to a neurologist or gastroenterologist instead? 3. Do  I wait until my mom's gastro appointment next month, when she plans to ask for a celiac blood test? See if hers is positive? 4. Do I keep driving myself insane with the worry that I have a degenerative illness? Can anybody identify with any of this at all? 
    • Eeek confused! Positive biopsy, negative blood test???
      I would hope they would check for the other reasons for the endoscopy results.  A GI might not check for all of those so you may need to check with your regular doctor to start that process.
    • Depression / anxiety issues
      The second link I gave you was to a series of online video courses, you can try those for free to see if its something you think might help. There are also a lot of worksheets you can download, the first link had some I think but there are plenty of others out there if you search online.  Finally I had another look and found this: http://www.getselfhelp.co.uk/step1.htm  Which looks like a decent 7 step program Obviously its not as good as a dedicated session with a CBT counsellor, but the above may give you some tools you can use, especially when your thoughts are spiralling into a destructive circle. You could also search to see if there's any group sessions in Melbourne, that's how the NHS delivers it, they would be cheaper and there's really no need for one on one CBT, because it's more about delivering knowledge of the toolset. I approached it very sceptically but found it of some use, although at the time I was still under the gluten influence so it never tackled the root problem. The game changing aspect of discovering this is that you now know why the psychologist sessions didn't hit the mark, how could they when the root of your depression was your illness? My sessions now are far better and more enjoyable than when I was under a gluten fog.  Aside from all this the other advice holds, eat well, exercise, get sunlight every day and the longer you're on the diet the better you should get.  Oh and at least NI put up a hell of a fight in the Euros, hope you got to see that down under!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,928
    • Most Online
      1,763

    Newest Member
    Timea
    Joined