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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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.

Mast Cell Activation Syndrome (Mcas)
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131 posts in this topic

Glad you had a good appointment...those really can help to lift spirits.

My safest foods are chicken and all green veggies except peppers. I currently eat all meats, only fresh caught fish (hubs likes to fish - worked out well when we learned the hista nonsense), most veggies except those with high histamine or nightshades, a small amount of rice or one slice of gluten-free bread...can't do the ones with soy...per day, lots of almonds in all forms, coconut oil, salt and black pepper (recently found out black pepper was HH, but have not removed it or my red wine. the strange thing is i can drink red wine without issue which is crazy but i try not to question it. coffee, nettle tea, red wine and lots of water are my beverages. oh and recently got small quantity of egg...not sure if its because i switched to a fresh source and can eat two a day and also no problem in baked goods...i make a breadlike substance with apples, coconut and almond flours, eggs, vanilla and cinnamon...kinda tastes like an apple cinnamon muffin -- emphasis on the "kind of" ;)

That's funny...my husband was just saying that he needs to become a better fisherman to feed me. He doesn't get much time to between work, the kids and coaching soccer...but I would welcome some fresh fish!

Your bread like substance sounds good to me...but then again I'm hungry. Lol! Would you be willing to share the recipe when you have time?

Thanks

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I feel like I have found family in this forum!!! I can't even begin to describe how amazing it felt to read the previous 9 pages of posts and realize that I am not alone! I am in the beginning of my journey and have found the internet to be a helpful, but scary and overwhelming place, when it comes to research. I was recently diagnosed with Mastocytosis. My only symptom at this point is urticaria pigmentosa (skin rash - looks like red freckles). I am of German and Irish decent, so I am no stranger to freckles! Sadly it makes people stare and kids ask questions and provides a general uncomfortable and self conscience feeling :( I don't like to wear a bathing suit or shorts and even tank tops make me a little uncomfortable. 

 

Reading through forums and low histamine vs. paleo vs. gluten-free ..... Agh! I am overwhelmed. I am getting the 24 hour urine test and the blood test done early next week, so I am sure that will tell me more. The thing is, I am not having outbreaks or harsh reactions like anaphalaxsis  (sp?). How can I tell if I am reacting to something?

 

I started gluten free earlier this week and don't really feel a difference yet. What I am getting pretty frustrated by is conflicting info. Alcohol is a no-no accept that it also acts as a histamine liberator. But I love wine and martinis. :wub: Meat in the fridge is constantly building histamine, but here is a slow cooker recipe. Where to start? :huh:  I am thinking of going strict gluten free and continue taking my prescribed Singular, Zyrtec, and Benedryl and add in 1,000 mg of Quercetin, 500 mg of Bromelain, 500 mg of Nettle Extract and 1,000 mg of vitamin C a day. If I do not notice any changes with the urticaria, I am thinking of trying histame  or a natural hives cure or get rid of hives. I am trying to be patient, but that is not one of my virtues. I am curious though as to how I will 'see' or notice results if the rash doesn't go away. Will the rash go away if I stay gluten free? Is 30 days long enough to give any of the mentioned methods a shot? How do I know if my histamine levels are safe? Will a tanning bed help the urticaria symptoms? Doc mentioned PUVA therapy, will the tanning bed do the same thing? 

 

There are so many fantastic gluten-free websites with recipes that satisfies my foodie soul. ibreathimhungry.com is awesome. So is iowagirleats.com. Skinnytaste.com has some good gluten free recipes too. I have made dozens from each of these and have yet to be disappointed. Iowa Girl kills the Chipolte Burrito Bowl copycat! 

 

Anyone else have Mastocytosis? Does it get worse or can I coast along if I manage properly? 

 

I'm sorry for the wordy post. Just. So. Many. Questions.  :)

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I feel like I have found family in this forum!!! I can't even begin to describe how amazing it felt to read the previous 9 pages of posts and realize that I am not alone! I am in the beginning of my journey and have found the internet to be a helpful, but scary and overwhelming place, when it comes to research. I was recently diagnosed with Mastocytosis. My only symptom at this point is urticaria pigmentosa (skin rash - looks like red freckles). I am of German and Irish decent, so I am no stranger to freckles! Sadly it makes people stare and kids ask questions and provides a general uncomfortable and self conscience feeling :( I don't like to wear a bathing suit or shorts and even tank tops make me a little uncomfortable. 

 

Reading through forums and low histamine vs. paleo vs. gluten-free ..... Agh! I am overwhelmed. I am getting the 24 hour urine test and the blood test done early next week, so I am sure that will tell me more. The thing is, I am not having outbreaks or harsh reactions like anaphalaxsis  (sp?). How can I tell if I am reacting to something?

 

I started gluten free earlier this week and don't really feel a difference yet. What I am getting pretty frustrated by is conflicting info. Alcohol is a no-no accept that it also acts as a histamine liberator. But I love wine and martinis. :wub: Meat in the fridge is constantly building histamine, but here is a slow cooker recipe. Where to start? :huh:  I am thinking of going strict gluten free and continue taking my prescribed Singular, Zyrtec, and Benedryl and add in 1,000 mg of Quercetin, 500 mg of Bromelain, 500 mg of Nettle Extract and 1,000 mg of vitamin C a day. If I do not notice any changes with the urticaria, I am thinking of trying histame  or a natural hives cure or get rid of hives. I am trying to be patient, but that is not one of my virtues. I am curious though as to how I will 'see' or notice results if the rash doesn't go away. Will the rash go away if I stay gluten free? Is 30 days long enough to give any of the mentioned methods a shot? How do I know if my histamine levels are safe? Will a tanning bed help the urticaria symptoms? Doc mentioned PUVA therapy, will the tanning bed do the same thing? 

 

There are so many fantastic gluten-free websites with recipes that satisfies my foodie soul. ibreathimhungry.com is awesome. So is iowagirleats.com. Skinnytaste.com has some good gluten free recipes too. I have made dozens from each of these and have yet to be disappointed. Iowa Girl kills the Chipolte Burrito Bowl copycat! 

 

Anyone else have Mastocytosis? Does it get worse or can I coast along if I manage properly? 

 

I'm sorry for the wordy post. Just. So. Many. Questions.  :)

 

Welcome!  I can't answer most of your questions, but wanted to check...were you ever tested for Celiac Disease?  You need to be tested before removing gluten as the antibodies that are tested for are produced only in response to gluten consumption!!!

 

I know on the FaceBook Mast Cell and other internet Mast Cell forums there is a much larger mix of folks with Mastocytosis and other Mast Cell disorders...have you found some of those helpful?

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Welcome!  I can't answer most of your questions, but wanted to check...were you ever tested for Celiac Disease?  You need to be tested before removing gluten as the antibodies that are tested for are produced only in response to gluten consumption!!!

 

I know on the FaceBook Mast Cell and other internet Mast Cell forums there is a much larger mix of folks with Mastocytosis and other Mast Cell disorders...have you found some of those helpful?

Thanks, Lisa! I tested negative for Celiac, but my doctor (who thankfully doesn't insist on cramming me full of meds) said that autoimmune disorders such as mine may benefit from a gluten free diet. This along with vitamins and only 3 prescriptions a day should help control the Mastocytosis. 

 

I will check out the Mast Cell forums. The only reasons I haven't found these helpful was the reactions and disease progression seems to be much further along than mine. 

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Thanks, Lisa! I tested negative for Celiac, but my doctor (who thankfully doesn't insist on cramming me full of meds) said that autoimmune disorders such as mine may benefit from a gluten free diet. This along with vitamins and only 3 prescriptions a day should help control the Mastocytosis. 

 

I will check out the Mast Cell forums. The only reasons I haven't found these helpful was the reactions and disease progression seems to be much further along than mine.

Mine is pretty far along as well.

Good luck to you :)

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Is there a way to tell MCAS apart from sulfite intolerance? I have been suffering from skin burning and redness these past few months (and chronic hives since my celiac diagnosis a year and a half ago) which were made worse by a bad reaction to antibiotics. Now my face and neck feel sunburnt when I have high histamine and high sulfite foods. Seems the lists of foods to avoid overlaps quite a bit. Any idea on how I can figure out which one is affecting me?

Also I am seeing a new allergist on Tuesday. Not sure if he will take the MCAS questions seriously but other than printing out the research do you guys have any tips on how to properly approach the subject? My previous allergist just told me to wait until the end of summer because heat was making my skin sensitive and did not consider MCAS as a real issue.

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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