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Celiac Disease + Mastocytosis + Leaky Gut + Normal Food Allergies?


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#1 misslasagna

 
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Posted 09 March 2014 - 02:47 PM

Hi guys, I'm new here. =) My name is Dania, I'm 26, I have Celiac Disease, I am Vegan, have Ehlers-Danlos Syndrome, and "food allergies."

 

 

I'm hoping that this hasn't been asked yet...

 

So I was diagnosed with Celiac disease in 2010 and going gluten-free changed my life, all is well on controlling it(except for the occasional contamination or oversight from restaurant staff).

 

Unfortunately, and some unknown reason, I've been developing allergies exponentially in the last few years since I "acquired" Celiac disease. And they are exponential. 

It started with gluten/wheat. Then from there a few years back (2012) I ate an avocado (which I don't particularly like) and it nearly killed me. I swelled up, throat closed, and went into anaphylactic shock. Since the avocado incident, I've begun to have this same reaction to a majority of vegetables and fruits. 

 

They all seem to have the same thing in common, they're all on the "latex food" list, I'm also allergic to latex, which happened in 2012, around the same time as the avocado incident. So my doc suggested that I just can everything on the latex list. Unfortunately, I'm Vegan AND gluten free. So my options are closing in on me. 

 

Recently my allergies have been sort of branching off from this latex list and I'm becoming more and more sensitive to foods NOT on the list. I'm very seriously considering the allergy test, but let's be real, who WANTS to see a list of things they *shouldn't* eat but can currently handle?

 

Step forward to the other night when I hosted an  "Allergen Free" girl's night with my other allergic friends, we, of course, started discussing allergies.

One of my friends said the words "LEAKY GUT SYNDROME," a syndrome I've never heard of. Her description of this illness sounded like what could be happening to me. Perhaps I'm not allergic to these things in reality, but the underlying allergy hasn't been addressed, thus letting things that are OK get into blood stream and body says No Thanks.

 

I've always assumed I had Mastocytosis, and my PCP is pretty happy with that idea as well, considering it goes hand-in-hand with Ehlers-Danlos Syndrome.

 

Is there any insight on this? What kind of doc I should see? My friends suggested a naturopthic doctor. Or am I just one of those lucky few who doesn't have a big single problem that can explain all the rest and just have a million little ones?

 

I'll tell you one thing, if leaky gut whatever it is is for real....it would make my life much easier and much yummier with the thought  that someday I'd be able to add the following foods back into my diet (maybe even gluten!?)

 

Avocado

Banana

Water Chestnut

Sweet Peppers

Bell Peppers

JalepeƱos

Kiwis

Pineapples

Melon (ALL OF THEM)

Pears

Passion Fruit

Raw Tomato

Mangos

Plums

Wheat

Citrus

 

And the things my world would just end with that are on the list but don't currently affect me (knocking on wood) are

 

Potatoes (major staple of my diet)

Apple (Beer & Pear Ciders are already off my list, do NOT take away  my hard Apple Ciders)

Carrots

Broccoli 

Celery

SOY BEANS (there goes any protein left for me)

Chick peas

Peanut

    etc...

 

 

Is there hope that this could all be part of a "leaky gut" issue because I have Celiac disease? 

 

 

(That was a lot, sorry for the novel)

 

-Dania


Edited by misslasagna, 09 March 2014 - 04:14 PM.

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#2 greenbeanie

 
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Posted 09 March 2014 - 04:10 PM

Hi, Dania, and welcome! I'm not sure I have any useful advice, since I'm still trying to get my own situation sorted out. But the one thing I do know for sure is that I have a latex allergy and also react to pretty much all the cross-reactive fruits. I have never had an anaphylactic episode, fortunately, though I have had scares that led me to keep my Epi-pen in hand after eating. I also have allergic-type reactions to many, many different foods that are biologically unrelated, and Allegra (but not other antihistamines) helps quite a bit. So as I said, I'm in a bit of diagnostic limbo - see my signature for more info - but here are two things that have helped me:

1. Avoiding all fruits, and tomatoes - I eat tons of veggies but especially stay away from any sweet fruits.

2. Avoiding anything with sulfites - anything fermented (including hard cheeses), including anything with even a tiny bit of vinegar (salad dressings, condiments), gluten-free flours that include bleached ingredients (potato starch, tapioca flour), potatoes at restaurants, dried fruit, dried herbs and seasonings (but not their fresh counterparts), anything with pectin or lemon juice from concentrate (which is in a surprising number of things), etc. This restricts my diet tremendously, much more than being gluten-free does, but it has helped tremendously too. Over the last few months I seem to have reduced the sulfite build-up in my body to a level where I can now tolerate an occasional salad with dressing.

I'm a very science-driven person in general, and I'm still not entirely sure how much of the leaky gut thing is real and how much is internet hype. However, I've been taking probiotics daily for over a year (starting six months before stopping gluten), and I can still feel them working every time I take them. Everything I've read suggests that one's body more or less adjusts to new probiotics within a few weeks, and that people generally only feel it when they change brands or doses. But that hasn't been the case for me. I feel like they are still working hard in there and having a definite effect each and every time I take them. I'm really not sure what that means, but after being gluten free for 7 months I suddenly stopped being lactose intolerant (after 20 years of clear lactose intolerance!), which is wonderful.

I'm not sure if any of this helps, but I hope you're able to figure things out. I don't know if my own sulfite issue is connected to the latex allergy or not (there's no obvious reason why it would be), but aside from going gluten free, avoiding sulfites is the thing that helped me most. And not just added sulfites, which I rarely ate anyway, but naturally-occurring sulfites too. They seemed to ramp up my whole system so that I was having allergic-type reactions (including moderate tongue and throat swelling) pretty much anytime I ate anything, and nearly eliminate sulfites from my diet made my reactions to everything else less too. Good luck!
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#3 StephanieL

 
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Posted 09 March 2014 - 04:55 PM

Unless you know exactly what you are reacting to, allergy testing isn't recommended.  A really good and detailed food log can help determine a lot of stuff.  Testing for IgE or 'true' allergies isn't 100% accurate.  It's more about 50/50 for a positive result meaning that a positive test in the absence of an actual reaction is only 1/2 the time going to be an actual allergy.  So blanket testing isn't the way to go.  Alternative practitioners for true allergies is pretty much a bad bad bad idea.  Having heard some of the things they do/say/suggest are down right scary and more importantly dangerous!

 

Have you looked into MCAS at all? Also, do you have 2 epi pens with you at all times?


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#4 GottaSki

 
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Posted 09 March 2014 - 05:15 PM

Welcome Diana!

 

Ok...where to start.  Celiac Disease destroys the villi of the small intestine -- effectively creating a "leaky gut".  For some with Celiac Disease - removing gluten is not enough to heal.  Sometimes it is just dairy or corn, etc.  Then there are some of us that have many intolerances and/or allergic type reactions that seam to increase at an alarming rate during our first years gluten-free.  Foods with high lectin content are thought to exacerbate the symptoms associated with "Leaky Gut Syndrome" (Dairy, Grains, Legumes, Nightshades, Nuts and Seeds).  Was true for me.

 

That said, the symptoms you discuss -- especially the avocado -- are much more those of Mastocytosis, Mast Cell Activation Syndrome or Histamine Intolerance.  As you already mentioned there is a strong correlation between ED and Masto.  The foods you are reacting to are high in histamine or induce the release of histamine in the body -- hence the anaphylaxis caused by the avocado.  In my opinion you need to be formally tested for Mastocytosis.  If those tests are inconclusive, you may have MCAD/MCAS which is managed in much the same way as Masto.  Here is the important part...If you have either of these the frequency and severity of allergic reactions will likely increase left untreated.  Minimally you need to carry Epi Pens with you at all times.  This is also true for me.

 

Here is a link to a thread for those of us with histamine related issues such as Mastocytosis, MCAS and HIT (Histamine Intolerance):

 

http://www.celiac.co...-syndrome-mcas/

 

One note...you mentioned if you could heal your leaky gut you could eat many foods that are problematic.  While this is true -- if you were diagnosed with Celiac Disease, gluten will never be safely consumed again.

 

Hang in there....believe me I completely understand your frustration at continually losing more and more foods.


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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 :)


#5 Finally@45

 
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Posted 02 September 2014 - 06:14 AM

Good advice.
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Celiac & Mastocytosis

Follows a diet similar to the Paleo diet, minus high-histamine items such as

avocadoes, mangoes, papaya, berries, pork, farm-raised fish, spinach, and seeds.

No eggs or red meat either.

 





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