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Mast Cell Activation Syndrome (Mcas)

g f but still sick?

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#61 mamaw

 
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Posted 20 January 2014 - 07:01 PM

As  I  was  scanning  the  web for more  info I found  "ibreatheimhungry.com "  She  talks  about  having  many issues along  the lines  of  this  section. She  goes  on to  mention  food  grade  Diatomaceous  earth  as  helping  her  issues. Has  anyone  tried  this  ????? very  curious......


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#62 IrishHeart

 
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Posted 21 January 2014 - 05:08 AM

As  I  was  scanning  the  web for more  info I found  "ibreatheimhungry.com "  She  talks  about  having  many issues along  the lines  of  this  section. She  goes  on to  mention  food  grade  Diatomaceous  earth  as  helping  her  issues. Has  anyone  tried  this  ????? very  curious......

 

I have heard of it. A massage therapist I saw once kept pressing me to use it. She was going to cure me of my osteoarthritis. (that's what she said)

 

I have an open mind (to a point) and so, I researched it and discussed it with my in-house chemist (who used it in the garden at one point)

and well, let's say we concluded it's not going to help me with anything. 

 

No published research or medical information on it, except people who claim it solves everything from intestinal parasites to cancer.

Others claim  it detoxes the body and removes mucus from the intestinal walls.

 

Seem to me we need some mucus in our already damaged GI tracts to have, um, shall we say, easy transport? 

 

If you do try it, make sure you get the stuff that's okay for human consumption. 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#63 anti-soprano

 
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Posted 21 January 2014 - 03:45 PM

Thanks Irish Heart and Lisa,

I am trying not to get all obsessive about this.  I have been eating only low histamine foods exclusively for 2 weeks and plan on at least 2 more before I go exploring.  I was so discouraged when I made a bang-up shepherd's pie (I am definitely a better cook after 2 weeks!) that actually tasted good and I broke out the next day.  The only new things in it for me were cinnamon and sage so I googled "cinnamon + histamine" and it came up on a Dr Janice Joneja's list: http://www.foodsmatt...ine_joneja.html

 

 So, trial and error.  I'm more OK with that than having no explanation!  The mystery to me is why this has escalated to such a point all of the sudden.  I had cinnamon in a gluten-free apple pie over the holidays with no issues at all. I guess I don't have to know why it's so bad now as long as it calms the heck down soon.  I need to empty my bucket!!

 

Mawmaw- I find it interesting that I too have graves disease and have had environmental allergies all my life.  13 years of allergy shots and allergy induced asthma.  I've only had one episode of a drug reaction (Bactrim- which I think I spoke about already in this thread).  I hope your surgery goes well and that your caretakers listen to you.  It's the worst when a person who is supposed to help you looks at you as though you're a crazy woman.  


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#64 mamaw

 
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Posted 21 January 2014 - 07:40 PM

Thanks  so much anti  Soprano.......

Needless  to  say I'm a  bit un-nerved  by  the  hospital's  response .....but  today  they  did  seek  another  hospital  where  I  had  surgery in 09  to  understand  what  they  gave  me in  drugs.....I'm not  a  doctor or  a  nurse so  today  when  they  questioned  me  again  I  said  " How  would  I know  about these  or  drugs if   a  medical person  hadn't  written  them  down  for me  & told me  NEVER to let  anyone give them to  me  ever  again"....so  hopefully  they  maybe  got it now.....

 

I  had  many  surgeries over  my lifespan   &  didn't  start to  react  to  drugs until around  my  40's... then  having  RAI  I  was  hyper  before  that  procedure  & like  many  went  the other  way to Hypo  &  also  received the gift  of  Grave's & A Fib.....


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#65 GottaSki

 
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Posted 04 February 2014 - 07:28 PM

Since many of the histamine food lists have conflicting info, I thought I'd post a link to this list:

 

http://www.histamini...ist_HIT(EN).pdf

 

While not perfect...I prefer this list because it reflects how much histamine is in foods along with those foods that liberate histamine within the body.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#66 IrishHeart

 
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Posted 05 February 2014 - 04:30 AM

That is the mother of all lists, Lisa. Thanks, hon!! 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#67 anti-soprano

 
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Posted 06 February 2014 - 07:04 PM

Likewise, Lisa!  Much love for the list!!

 

I continued to have symptoms about every third day on a low histamine diet for 4 weeks.  After reading up on the low histamine chef's site, I recently changed every rackin frackin beauty product I use and things seem to be getting better (knock on wood).  I don't smell either, which I see as a distinct plus.

 

I think I would have done near lost my mind without you people. Can't thank you enough.


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#68 GottaSki

 
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Posted 06 February 2014 - 07:13 PM

That is the mother of all lists, Lisa. Thanks, hon!! 

 

You are always welcome :)

 

Likewise, Lisa!  Much love for the list!!

 

I continued to have symptoms about every third day on a low histamine diet for 4 weeks.  After reading up on the low histamine chef's site, I recently changed every rackin frackin beauty product I use and things seem to be getting better (knock on wood).  I don't smell either, which I see as a distinct plus.

 

I think I would have done near lost my mind without you people. Can't thank you enough.

 

Happy to share :)

 

Knocking wood here that you continue improve!


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#69 Chavela73

 
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Posted 10 February 2014 - 10:52 PM

I was diagnosed 3 yrs ago with Celiac Disease, I did good to start with and then I started having all these allergy symptoms. I have never heard of this before but it sounds exactly like what I have been going through. I have started wheezing and sneezing bad. At time I break out in red welts on my face like I have been bitten by Mosquitos. I kept saying I think I am allergic to something or I have asthma but everyone would tell me it's just allergies. I am going to do more research on this, I was beginning to think I was going crazy and falling apart. Thank you so much for posting this and I hope I can get to a doctor that knows about it.
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#70 T.H.

 
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Posted 09 March 2014 - 08:17 AM

The newest information down the pike on this condition. :-)

 

"A concise, practical guide to diagnostic assessment for mast cell activation disease" by Afrin and Molderings

Published February 2014

http://www.wjgnet.co...pdf/v3/i1/1.pdf

 

 

And hi, Jebby! :-)

 

Just wanted to add something of my own personal experience as someone else with MCAD and Celiac Disease, in case it helped anybody exploring this.

 

1. My own reaction to gluten is the worst thing I have, still. It affects me for months. The doctor and I have discussed the symptoms and her thought is that it may be the celiac disease responding to the gluten which then triggers the mast cells because of MCAD, so a fun double-whammy that I feel very lucky I survived to talk about. This is speculation only at this point, however. 

 

I mention this because I've now spoken to a couple of other celiac and MCAS/MCAD sufferers who have something similar: a really, really bad reaction to gluten. Not all celiac/MCAD folks, but a few of us.

 

 

2. I'm extremely sensitive to very small amounts of gluten. The same celiac/MCAD folks i spoke to who had a huge reaction also had reactions to mere traces of gluten cc. I don't know if that means the intense reaction and reaction to traces might be more likely to coincide, however; not even close to a big enough sample size, obviously. But interesting data point.

 

3. I think one of the most important things you can do for yourself if you are searching for answers is to trust yourself and how you feel, and at the same time be fluid and be aware.

 

If you have symptoms that feel like you're being glutened, even when others disagree it's possible? Personally, I think you should explore it, but be fluid enough to adapt to what you find. Because if you pay attention, you'll find out soon enough if gluten isn't the issue, because you won't get better. Or if you do improve, it won't be complete, or there will be oddities and things that don't match up right.

 

All it takes is for us to be aware enough to notice when something is a perfect fit, and notice when something is not a perfect fit, then go and explore what else could be going on if it's the latter. Lather, rinse, repeat.

 

I had such a distinctive reaction to low levels of gluten that when I got glutened, there was no doubt what it was. Still isn't, even when it's to such low levels most celiacs don't have issue with it, even when I have to distinguish it from symptoms arising from other conditions. I wasn't aware that it was some weird MCAD/Celiac combo punch, but the gluten part? I had that covered. But then I had symptoms that were similar to glutening but not as severe, didn't match up quite right, and with those, it always felt more like a case of 'well, I'll treat it like gluten for now but keep exploring.' And exploration got me my answers. 

 

I guess really what I'm trying to say is that if you have this - or any condition where things are a bit wonky or strange - you are going to have plenty of people telling you that what you feel is impossible, that what you experience is crazy, that you're overreacting by avoiding X or Y. Family, friends, even medical professionals may say this to you. And that hurts, and it can be hard to have faith in yourself when this happens. 

 

Really, it's not a bad idea to take an honest look at what others have to say, to think about their arguments, but in the end, you've got to trust yourself. You're the only one who knows how you really feel, and what's been going on in your day to day life. If other people's arguments do not match what you experience, then move on and try to find the truth.  

 

Here's wishing everybody finds out exactly what makes you healthiest and happiest, sooner rather than later. 


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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#71 GottaSki

 
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Posted 09 March 2014 - 08:29 AM

Thank you TH :)

 

That link didn't work for me...probably a kindle issue...just in case anyone else can't access...here is another link:

 

http://www.wjgnet.co...ull/v3/i1/1.htm


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#72 T.H.

 
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Posted 09 March 2014 - 08:45 AM

But the food thing has me confused. I can't eat soy, spinach, or drink wine. Chocolate seems to bother me sometimes, but other times it's OK.

 

I have never had any problems with avocado, cheddar, dates, sausage, yogurt, vinegar, bananas, or eggs.

 

The rest of the foods on the list are things I haven't tried or don't eat anyway.

 

And corn is the very worst offender for me, even worse than gluten. I don't see that on the list. Maybe I DON'T have this?

 

I'm so confused!

 

Bartful, 

there was a thread on this in one of the MCAS groups recently and, well, this is a list of what points were made, best I can remember! i was trying to learn about this as much as I could, too! ^_^

 

1. Depending on why a food was on the 'bad' list for a low histamine diet, some people had trouble with it, and some people didn't. There were some who only had trouble with the foods that inhibited DAO, or who only had trouble with foods that encouraged histamine release, or foods that were high in histamines naturally.  Some reacted to all, some to only some or one of the categories.

 

2. The histamine load for the day made a big impact. So on days when one has had more mast cell release and potentially more histamine, some of the high histamine foods could be more of a problem.

 

3. Some people don't really seem much impacted by the low histamine diet. It might be due to the fact that the mast cells can release all sorts of things, and some MCAD folks are actually NOT systemically high in histamine levels most of the time. They might be high in other things, like prostaglandins, or I've met two now who have heparin release as the biggest issue; bleeding problems for them. So if histamines aren't as elevated for you, high histamine foods may not impact you as severely as others.

 

 

When I started the low histamine diet - because I was eating some of the 'bad' foods, too, like avocados nearly daily - one thing that I noticed was that it lowered the level of the reaction from some OTHER foods, and lowered my over all reactivity. So even if these foods weren't enough to usually set me off, they were contributing to my susceptibility to being triggered by something ELSE.  That was helpful to realize. 

 

Most people I talk to have the list individualized eventually, so there may be some 'bad' foods that you do just fine on, too. 

 

Since it's been nearly two months since you posted, I'm hoping you are doing well and have found more about this to help you out! :-)


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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#73 a1956chill

 
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Posted 10 March 2014 - 12:29 AM

I really need to do some more reading on this subject.

 

Thanks for posting everyone  :)


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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#74 mamaw

 
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Posted 10 March 2014 - 06:35 AM

I'm trying  the  low histamine  diet  & find  it is  helping  but with  a  recent  hospital  stay  I've  not  got  back  to  being  on  track again...

Does  anyone  have  a   list  for  US  doctors  who  understand   MCAS?  I'm sure  the list  is  short  but  it  would  help  to know  who  to  seek out  for help... I had  all the  bloodwork, urine  testing  done by  my PCP  but  he  has no idea  how to  read the  results....


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#75 GottaSki

 
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Posted 10 March 2014 - 08:02 AM

I have seen many folks on the mast cell forums have their local docs consult directly with Dr. Afrin.  This might be the best route as it would allow you to stay local for your care...it can be tough to find the right combo of meds if you need them.  I've had a rough time with it, but seem to be on the right track now...with hindsight I can see the process could have been helped with the advice of an expert.

 

Side rant.....doctors not being able to read and interpret medical results drives me batty..(there is a mom with young kids on another thread that refused to run DGP antibody tests because no one in their clinic would know how to read and interpret results)...these doctors should be ashamed...where is the curiosity  and drive to learn and continue to expand their knowledge so they can - I don't know - help their patients?????  Ok..rant done, for now ;)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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