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

Follow Up To T.h.: Mastocytosis
0

8 posts in this topic

T.H. wrote on October 2013 - 08:31 PM regarding a recent diagnosis of Mast Cell Activation Disorder.  Interestingly, my symptoms are very similar.  I was recently diagnosed with mastocytosis.  All grains are my triggers.  I haven't posted in a while because I found that though I have Celiac, I knew I was reacting to more than just wheat, barley, and rye.  (I was initially fine when I first went gluten free, but then gradually had to let go of each grain, one-by-one.)  Not to mention having odd symptoms like itching (with no visible reaction), anaphylaxis, asthma, and other problems that seemed to join the list at will.

 

I'd like to give some encouragement and advice to fellow Celiacs who have mysterious symptoms beyond that of Celiac.  First, of all, realize that you can't compare yourself to others too much if the problem is mastocytosis, everyone is different.  Second, the low-histamine diet makes gluten-free look like a buffet.  Third, keep insisting on being tested if anything sounds familiar:

 

So... What are Mast Cell Diseases??? Mast cell diseases include mastocytosis, where the body produces too many mast cells, and mast cell activation syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers, and leukotriene inhibitors, while anaphylaxis is a medical emergency requiring epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver, and spleen. Most patients with mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur, which may require chemotherapy. A diagnosis of mastocytosis is confirmed by a bone marrow or skin biopsy. MCAS patients do not fulfill all criteria for mastocytosis but exhibit symptoms, may or may not have increased measurable mast cell mediators (commonly tryptase, histamine or its metabolites) during or shortly after an attack and do respond to the same medications that patients with mastocytosis do. - See more at: http://www.tmsforacure.org/welcome.php#sthash.G2Ue2aBq.dpuf

0

Share this post


Link to post
Share on other sites


Ads by Google:

Congratulations on getting diagnosed. Such a relief to at least have some better handle on where to go from here to stay healthy, yeah? Have the doctors and you had any luck on feeling better since you were diagnosed?

 

For anyone else reading this, sometimes the MCAD symptom information can be a bit harder to find than the mastocytosis symptom information (MCAD may not go into anaphylaxis as often, or sometimes ever). So to help with that, this is the most recent diagnostic guidelines for MCAD, with a chart in the middle of the pdf that lists symptoms.

http://www.wjgnet.com/2218-6204/pdf/v3/i1/1.pdf

 

 

 

 

 


0

Share this post


Link to post
Share on other sites

I was diagnosed through the usual tryptase blood, urine, and mast cell count in a skin biopsy, but I'm still in the early stages of exploration and treatment--a boatload of other procedures still to come because my symptoms are frequent and relentless.  After getting through the initial shock and pity party, I simply feel better just telling others in the Celiac community about it.  The limited food options is depressing, not to mention many lifestyle changes.  Mastocytosis patients have to avoid feeling isolated, so here I am.

 

I've read SO many times about people feeling glutened when they shouldn't have, or being convinced that corn is a problem too, that I know it will help someone to hear about mastocytosis--particularly people who were diagnosed late.  Every now and then there is research or a debate on whether other foods need to be added to the Celiac avoidance list, such as quinoa, corn, oats, and so on.  I've been part of the debate because the GI symptoms from mastocytosis feel identical to the Celiac GI symptoms, so it's very easy to confuse them.  The joint pain is similar and so is the brain fog. The difference for me is that I began to have a LOT more than just GI symptoms.  Anyway, I can finally say the others were right, Celiac is limited to wheat, barley, and rye.  I'm convinced that Celiacs who repeatedly have similar reactions to other foods just have something else.  The question is: What's the something else?

 

If the something else is mastocytosis, be prepared for the medical community to know less than you would expect them to know because it is a rare condition.  Also, it won't just pop up on a routine test, even a colonoscopy.  The stain for a biopsy is specific to mastocytosis, so that means they had to have been looking for mastocytosis in the first place.  Also, other routine tests, including food allergy tests, may be absolutely normal.  People with mastocytosis often look just fine, maybe even healthy, fit, and youthful.  Meanwhile, they're privately battling one odd symptom after another.

 

I should mention here that one common symptom I don't have is flushing and redness, and I don't have the skin reactions, making it even less likely to have gotten diagnosed at a young age.  I don't have the Celiac skin-related symptoms either.  But name any other symptom and I bet I've had it.

 

One good thing I learned this week is that the Mastocytosis Society actually tells medical professionals to BELIEVE anything a mastocytosis patient says, no matter how farfetched it sounds.  That's a relief.

 

Hopefully someone is helped by this information. 

0

Share this post


Link to post
Share on other sites

I am suspecting I may have MCAD.  I had a bone marrow biopsy done in January and the doctors said my mast cells looked normal (although at the time I had quite low platelets, WBC and RBC) so I guess that would probably rule out mastocytosis.  But I haven't had tryptase tested or anything else like that.  I'm not sure the allergist I'm seeing knows much about it :/ the hematologist hasn't been much help either.  I have improved on the low histamine diet.  I encourage everyone who thinks they may suffer from some sort of mast cell disease to look into that.  I am also trying to find a medication, either an antihistamine or a mast cell stabilizer, to help deal with symptoms.

0

Share this post


Link to post
Share on other sites




TH may want to comment or start another topic, but be sure to do the 24hr urine tryptase test.  I believe MCAD patients commonly will not test positive for mastocytosis, but will have signs of it, such as having high tryptase levels.  The only difference between the 2 is that mastocytosis shows the patient has too many mast cells (somewhere, and not necessarily in one place), but the MCAD patients have a normal mast cell count (at least in the locations where checked), but the mast cells they do have are too easily activated.  The high tryptase indicates they were activated.

0

Share this post


Link to post
Share on other sites

I believe MCAD patients commonly will not test positive for mastocytosis, but will have signs of it, such as having high tryptase levels.  The only difference between the 2 is that mastocytosis shows the patient has too many mast cells (somewhere, and not necessarily in one place), but the MCAD patients have a normal mast cell count (at least in the locations where checked), but the mast cells they do have are too easily activated.  The high tryptase indicates they were activated.

 

I'd second taking a 24 hour tryptase test, yeah.  I'd add a 24 hour urine test for prostaglandins and histamine levels, too - anyone getting this would really want to look up how to keep it cold, though, and how the lab is supposed to as well, and make sure the lab understands this. There's information on the web.  It's a rare enough test that many times, the lab will think they should treat it like OTHER 24 hour urine tests, which don't need to be kept as cold quite as rigorously.  I've known a number of people who had the test ruined because of this. 

 

MCAD folks will test negative for mastocytosis, yup. So the stains won't show any extra mast cells, because as you said, Finally, there aren't any extra cells to notice. However, MCAD folks often have normal tryptase levels but other markers elevated, like histamine and prostaglandins (on the 24 hour urine test).  That was my situation, actually. I can't recall why the elevated tryptase is more common with mastocytosis, though. 

 

Getting diagnosed with MCAD, it reminds me a lot of getting diagnosed with celiac disease, in some ways. I had so many 'oh, that finally makes sense now' moments, you know?

 

Although for me, I found that I have to be just as careful about gluten as I was before I was diagnosed. :-(  While sensitive, I don't think that I react to quite as low a level as I once speculated but if I get glutened at all, even slightly, my reaction to gluten seems to set off my MCAD and I am really, really sick for months afterward. So I take no chances of accidental gluten contamination; it's worth it to not lose half a year every time it happens. :-/

 

That was a bit disappointing, honestly.  I was kind of hoping that maybe after diagnosis I'd be better able to tolerate more foods and do more, but it's been more a case of eating pretty much like I was, only I'm better able to understand why some of my previous choices were keeping me healthier. But having that understanding is at least worth quite a bit, really.

0

Share this post


Link to post
Share on other sites

I'm sorry that it didn't make you less sensitive, TH.  So many of us are trying to find a way to make that happen.

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
      104,358
    • Total Posts
      920,531
  • Topics

  • Posts

    • Here's another thing.  Feeling deprived?  Order two of the same item.  I was hungry by the time dinner arrived! 
    • The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
      loss of memory, dandruff, uncontrollable bladder, suicidal thoughts, unable to sleep, Canker sores/ Mouth ulcers, high blood pressure, and probably others that I did not realize. I was at the end of my rope, thanks to Google and the people that are able to talk about this I was able to get my life back. I am passionate about this because I know how bad its can get. 
    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)   Oh, I checked your ship.  You must eat in the diningroom if you have special dietary needs.
    • French Celiac / Coeliac Gluten Free Restaurant Card <strong>What is ... What to know about celiac disease, gluten sensitivity, and gluten-free diets. View the full article
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,432
    • Most Online
      1,763

    Newest Member
    rbeckler60
    Joined