Link Between Mastocytosis & Autism

[juliegee]

http://www.wickedlocal.com/brookline/news/x160320501/Brookline-doctor-seeks-autism-breakthrough

A while back some of us were chatting about this. Seems like there is a correlation between mastocytosis & autism. Since many with reactive mast cells have autonomic abnormalities...wonder if the autism connection also affects us? Anyone have a family member with autism?

[Noreen]

I have a son on the autism spectrum.

[sj75]

me to.x

[juliegee]

Mack isn't DXed, but some of his stuff falls under the autism spectrum, like auditory processing disorder, etc. Makes me wonder...

[anna]

Shall I complicate matters even more?!! OK here goes!

I have one son diagnosed high functioning Autism, a daughter with ASD traits and OCD, my dad had major ASD traits, my brother is self diagnosed high functioning Autism. They all have EDS, my dads family had it's fare share of ASDers and guess what they all had CEDS!! My mums side of the family HEDS also had it's fare share of let us say excentrics and many of them have allagies, my mum is very very chemical sensitive I am to a lesser extent. My children are all milk intolerant and have environmental allagies!!

I know their seems to be a EDS Masto pattern emerging but not sure if any ideas why this might be happening, but I am sure one will be found some day.

[juliegee]

Shall I complicate matters even more?!! OK here goes!

I have one son diagnosed high functioning Autism, a daughter with ASD traits and OCD, my dad had major ASD traits, my brother is self diagnosed high functioning Autism. They all have EDS, my dads family had it's fare share of ASDers and guess what they all had CEDS!! My mums side of the family HEDS also had it's fare share of let us say excentrics and many of them have allagies, my mum is very very chemical sensitive I am to a lesser extent. My children are all milk intolerant and have environmental allagies!!

I know their seems to be a EDS Masto pattern emerging but not sure if any ideas why this might be happening, but I am sure one will be found some day.

Hi Anna-

I'm not familiar with the acronyms CEDS or HEDS. Teach me what those mean. Regardless, it's clear that your family has a connective tissue disorder, autism connection. Out of curiosity, do you have many family members who also have autonomic symptoms, like a fast HR, those who faint, etc. Also, I wonder if the allergies are TRUE allergies DXed via scratch or blood testing OR simply allergy symptoms- which would make a mast cell disorder a possibility. (To complicate that end of things, folks with mast cell disorders can also have true allergies.) The chemical sensitivity aspect is very indicative of a possible mast cell disorder.

I have met so any people with mast cell disorders, connective tissue disorders, and autonomic dysfunctions that there MUST be a connection there. One of Dr. Francomano's (Baltimore) patients is working to put together a support group for patients who present with this triad. The autism link is also intriguing. Seems like we've had a relatively high number of members here who've been had affected family members.

It is very exciting to watch researchers untangle the links that connect these disorders. I recently read an abstract of a study that suggested that mast cells can "redesign our connective tissue." Prior to the advent of the internet, so may of us would have suffered alone, not realizing that there is a whole community of folks out there with the same constellation of symptoms that we have. It is fascinating to see this unfold.

Julie

[summer]

My son has ASD too.

[anna]

Hello Julie,

Oh CEDS is classical EDS and HEDS is Hypermobile EDS (Ehlers Danlos Syndrom. We are not sure about the whole allergy type problems all three have a milk/dairy intolerance. It seems to be an intolerance not true anaphylactic type response. Daughter had constant colic distended tum, failure to thrive, bile ridden diarrhea, any time I feed her or when she had formula milk. Of cause Dr. thought I was mad and that she needed more feeds!!!!! She is 18 and still can not tolerate any milk products, but can eat some things that contain reconstituted milk proteins. From birth my twin boys were put on soya bottle feed as daughter had such problems, they too can not tolerate any milk products, like thier sister. All 3 have had odd reactions to certain foods all have Hay fever, used to get hives for no apparent reason sometimes after eating a meal other time who knows why!! My daughters GP has her on Telfast (Fexofendine hydrochloride)high dose when needed, due to her getting a swelling throat out of the blue, now one of my boys is having same throat problems. We do not have many allergy Dr.'s in the UK so we have never been sent down that route, no surprise their !!!

I am still in the mind that EDS or genetic mutations in the formation of collagen is the key here I still think that folk with dodgy collagen are more likely to leak more!!! Like gut wall is more easily penetrated by invaders, thus triggering some form of Autoimmune response, same goes for our nervous system, infact I feel that stuff that would normally be locked out of a system path way is breaching our natural barriers because it is getting through the areas of defective collagen. In my view that is the reason not all people with connective tissue disorders have other things going on as well, it comes down to where we are genetically predisposed to having weakened defences!

Again I see the same thing going on in ASD. As for the question why do not all folk with ASD or Mast cell disorders have connective tissue disorders, I would say they probably do have some form of connective tissue disorder but it just has not been mapped yet!! does that make sense??

[sue1234]

Anna, have all your children been tested for celiac? The tips of the villi in the small intestine that produce the lactase enzyme are destroyed in celiac and cause an intolerance for milk.

[juliegee]

I bet they'd respond well to gastrocrom, a mast cell stabilizer that targets GI stuff. I like your theories, Anna!

[houswoea]

Wow, that's very interesting! Thank you for sharing. This makes a lot of sense since many kids with ASD have food sensitivities and stuff like that. So if a child with autism is diagnosed with mastocytosis, will medication for the mast cells help the behaviors of autism? Or is the damage already done? Just curious...

[sj75]

the thing ive noticed with my son is that when he eats even quite normal things he gets a type of 'high' where he is virtually bouncing off the walls. Any idea what causes this and if its a type of food sensitivity reaction? he hasnt had any gi symptoms for ages but used to get a lot of nausea and diarrhoea that he had ranitadine and mebeverine for.x

[anna]

Hi Sue,

Two of my children have had some sort of blood test to see if they had IBD, but that was negative, I am not really sure if that is a conclusive test for celiac disease.

Hi Julie,

When my daughter was about two and a half she was prescribed Nalcrom, we where told to give it to her when she wanted to go to a party and might have some food that usually effected her badly. As it was given as a take on special occasions type thing I guess we did not see much benefit! But as my son's GI problems are back big time we might ask and see if the GP will try this med out on him.

[miranda]

My son is under the acute allergy clinic for anaphylaxis to mutiple foods , he also has autism. I have OI. My uncle has celiacs disease.

really interesting.

[sue1234]

sj75--when you mentioned your son getting a "high" off of foods, it made me think I had read something to this effect once. I had to think and look back, but I found this. I had read the book and it must have stuck with me:

"Gluten and dairy products contain peptide chemicals called opioids. These opioids have an opiate-like effect. Opioids enhance the effect of neurotransmitters in the brain known as endorphins. They create feelings of euphoria. When a person eats only gluten free foods, he no longer experiences this effect. In the book Dangerous Grains, Dr. James Braly, one of the authors, wrote that opioids make the gluten and casein protein in dairy products addicting."

I assume he is meaning people that have celiac or gluten intolerance have this reaction, as obviously not every person reacts to wheat and dairy like this!

[juliegee]

Hi Julie,

When my daughter was about two and a half she was prescribed Nalcrom, we where told to give it to her when she wanted to go to a party and might have some food that usually effected her badly. As it was given as a take on special occasions type thing I guess we did not see much benefit! But as my son's GI problems are back big time we might ask and see if the GP will try this med out on him.

Hmmm. Pretty telling- that's another mast cell stabilizer. I hope they're been tested for mastocytosis. That's just a simple blood test for serum tryptase. I'm guessing that'll be normal in- which case MCAD would still be on the table.

Have they had any traditional allergy testing? There is a blood test for Celiac disease- wouldn't hurt to make sure that's been done too.

I agree. Gastrocrom or Nalcrom given consistently might make a difference. Hope you figure it out

Hugs-

Julie

[jonathanireland]

I have no history of any of the above conditions at all, the only history my family has are thos of actual heart problems ie. heart structural conditions and disease. I dunno where the H*ll my autononic dysfunction came from lol

[sj75]

sj75--when you mentioned your son getting a "high" off of foods, it made me think I had read something to this effect once. I had to think and look back, but I found this. I had read the book and it must have stuck with me:

"Gluten and dairy products contain peptide chemicals called opioids. These opioids have an opiate-like effect. Opioids enhance the effect of neurotransmitters in the brain known as endorphins. They create feelings of euphoria. When a person eats only gluten free foods, he no longer experiences this effect. In the book Dangerous Grains, Dr. James Braly, one of the authors, wrote that opioids make the gluten and casein protein in dairy products addicting."

I assume he is meaning people that have celiac or gluten intolerance have this reaction, as obviously not every person reacts to wheat and dairy like this!

thanks so much for that info. I will have to try and get hold of that book, our son was only diagnosed early this year and im beginning to think asd is almost as much of a minefield as pots.

My son has a love of cheese that borders on obsessional. I really need to look at how to get him off it i think!

[juliegee]

Wow, that's very interesting! Thank you for sharing. This makes a lot of sense since many kids with ASD have food sensitivities and stuff like that. So if a child with autism is diagnosed with mastocytosis, will medication for the mast cells help the behaviors of autism? Or is the damage already done? Just curious...

No clue, but hasn't Jenny McCarthey reported that her son's autism REVERSED when she cut out certain foods??? If you cut out what triggers them, maybe??? One problem, if their mast cells are overly-reactive they could be triggered by everything!!! We need more research to answer your terrific questions.

[sj75]

i could be completely wrong but didnt it turn out that he didnt have autism but a neurological condition that had symptoms resembling autism?? sure i read that somewhere.x

[juliegee]

Here's the article from Time Magazine: http://www.time.com/time/nation/article/0,8599,1967796-2,00.html

Hard to know what the truth is....Hard to believe that only SHE can "cure" her child??? When other kids start having the same result that her son did (with the same protocol) I'll be a believer.