I have an initial appt. next month with Dr. Afrin and I'm fairly convinced I have a mast cell issue, but I haven't seen anyone mention this pattern of symptoms, and it makes me question if this is something else.

I have the bloating/pain/gas that people describe, and loose bowel movements, but my GI symptoms seem to be minimal in the morning (other than the loose BM), and get progressively worse during the day so that by bedtime my belly is huge, painful, and full of gas.

When I'm having a big GI flare I pretty much don't want to eat all day long, and everything seems to set it off, but most of the time I'm not bad in the morning, become more uncomfortable after lunch, and pretty unhappy after dinner.

The only explanation I can come up with is that after 14 hours of no food to irritate the GI tract, everything settles down, and then as I eat throughout the day, I antagonize it more and more.

I'm wondering if anyone else experiences this?  Thanks for your thoughts!

  -Kat

P.S.  My dear husband keeps telling me to take gas-x for the gas/bloating (and I keep telling him I've tried and it just doesn't help).  Have you found anything that does help?  (I already take 1 or 2 Zantac before lunch and 2 before dinner.)

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Yep.  That's my pattern too.  I feel good in the morning, but it gets worse as the day goes on... especially after meals.

Unfortunately, I haven't found any medication that helps once the bloating has started.  Prevention is the key.  For me that includes taking Gastrocom plus strict avoidance of trigger foods (especially gluten and bananas).  If the pain is really bad... if Tylenol is not enough... you might want to get a prescription for tramadol.

Heather

Thanks y'all for reassuring me that this is relatively "normal".  And for giving me support to tell my husband to stop pushing the Gas-x and Beano!!!  

The possibility of fluid buildup is interesting, as that might help explain why the gas seems to have such trouble gurgling its way on through as if it's in a very restricted environment.  I've happily never looked 9 months pregnant (you poor thing Wendy!), but last night I was showing my husband my "baby bump" and told him that I could feel the "baby" kicking!!  (Boy, did he not appreciate the joke.)  

I agree one hundred percent that the best way to deal with it is to avoid triggers.  My biggest ones are vinegar and soy sauce (the deadly fermented duo).  I've worked on finding spices that I can safely use in place of vinegar to give my food some flavor (I never realized just how many yummy things have vinegar in them!!).

I do my best to follow the low histamine diet.  It's just really hard, as a vegetarian, to find protein sources that I can eat.  It seems that I can thankfully eat some soy, though the less processed, the better.  The only dairy I'm consuming is a little feta here and there, since it isn't aged.

I hadn't thought about fats that much, since I absolutely can't handle fried foods and eat pretty healthy fare.  I suppose I could use less olive oil when grilling fresh veggies, but that's really the most fat I add.

I haven't used a digestive enzyme in awhile...I suppose I could try one again.  I'm hoping that if Dr. Afrin says I likely do have a mast cell disorder that he'll give the green light to my GP prescribing Gastrocrom or Ketotifen, and that maybe I can expand my diet a bit more with that.

Unfortunately, it seems one of my biggest triggers is still stress, and that's a little harder to eliminate!

Thanks again for all of your thoughts, and keep them coming!!!!

Hi Kat,

OMG, yes, yes and yes!  GI symptoms were what I initially experienced when all the MC issues kicken in a few years back.  I had the WORST bloating, cramping, nausea, D alternating with C, etc.  In terms of the bloating, I can remember telling my husband I needed one size pants to wear in the AM and a completely different size to wear in the evening!  It was not only painful but ridiculous looking too.

In time, I figured out that food was a major trigger for the bloating, just as others have suggested.  I agree wholeheartedly with Heather...prevention is key.

Like you, I'm a vegatarian, which does make elimination diets a little more challenging.  But, I had foods that I was suspicious were making things worse, so I would go off of them for a few weeks and then add them (one at a time of course) back in to my diet.  

As a result of the my elimination trials, I eventually went off all gluten.  (I realize this is very "trendy" right now, but I was soooo much better off gluten and then so sick with GI issues again when I went back on gluten, there was no denying the connection.)  Also, I had to give up soy which turned out to be a HUGE trigger for the bloating.  You can imagine how hard this was as a vegetarian, given that soy is a key ingredient in many prepared veggie dishes.  But, going soy free greatly reduced the bloating.  In keeping with giving up soy, I gave up all legumes.  Another hard decision, but worth it in the end.  The connection between severe bloating and legumes was undeniable.  I don't get near legumes now, in any form or fashion!

Because my initial diagnosis was mastocytic enterocolitis I was also placed on Entocort by my gastroenterologist.  It helped greatly with the bloating and associated GI symptoms.  I was on the Entocort for quite awhile.  He also placed me on a probiotic (Align) and that also helped a great deal.  These meds in conjunction with the antihistamines and change in diet helped me get my GI symptoms under much better control.  I still have GI issues flare up, but they are greatly reduced in severity and frequency now.

In case you are interested here's an article my GI doc co-authored on the role of MCs in GI issues.  He is a big believer that GI docs need to be looking for the connection between GI distress and MCs more frequently.  He's just around the Beltway for you so if you need a GI doc that has a proven track record in understanding MCs triggering GI problems, he's the guy for you!  I cannot say enough good things about him.  Here's the link for the article:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

Beano, GasX, I've heard it all from my DH as well.  Might as well just take a sugar pill!

Julie

Heather -

Now I'm totally confused! Dates and berries (and I assume this includes blueberries) are on the DO NOT eat column on the low-histamine diet.  I've been trying hard to avoid them, and you had them as one of the few things you could eat?!  Sheesh.  But then I don't know which low-histamine diet to believe.  They all seem to agree on the big things like fermented/aged stuff, but not on some of the minor things.

(Now that you mention it, I have seen those same ingredients on special diets for pets as well!!)

I don't care for a lot of eggs, but I do eat some, as well as beans.  I've been avoiding nuts to some extent, because they seemed to be bothering me.  I guess I need to experiment and see which ones are problematic.  Right now I'm trying to determine if it's the PB, the Jam, or both that are giving me intermittent problems with our favorite go-to travel food!  (I'm trying PB & honey, as I suspect it might be the blackberry preserves.)

Julie -

I laughed out loud at your description of pant sizes!! I couldn't figure out how I could have dropped as much weight as I had and STILL not have any pants that fit, until I finally realized just how huge my belly gets sometimes.  I can go out to visit friends in pants that fit and be strangling in them by the time we come home.

I've gone off of gluten before to try to help with headaches/dizziness, but that was before my GI issues got so bad, so I'm not sure if it made a difference there.  However, soft white bread seems to be one of the few things, along with rice, that are okay when I'm really flaring, so I'm guessing I'm okay with gluten.

The soy thing is really hard to deal with.  It seems that the more processed a food is, the more trouble I have with it.  Tempeh (basically just soy beans pressed together) are okay, but texturized vegetable protein made into something like a veggie burger doesn't do as well.  Soy milk still seems to be okay.

I find it interesting that Align helped you.  I've been taking it for months now and finally decided to stop wasting money on it as it really hasn't helped at all.  I may be interested in seeing your GI doc after I see Dr. Afrin!  It would be nice to have docs who actually understand what's going on in my body.  The article was interesting...I'll be curious to see if my old biopsy samples show anything, as it says everything can look normal but they can still find lots of mast cells.

So, if you can't have gluten and you can't have soy or any legumes, what the heck do you eat?!!!!  I don't have the energy to make all sorts of special things, my husband and I can't seem to have the same things for dinner any more, and I have no idea what to eat when we travel!  

Thanks so much for sharing....after I read a few quotes from these posts to my husband we both laughed and remarked that at least I'm not alone in this weirdness!  

Wow Heather, thanks, that makes SO much sense.  I MUST avoid the things that themselves contain lots of histamine (which I think I already am doing), but I should test out the other things to see if I'm reactive to them (like soy, which ICUS says to avoid but I can eat in some forms).  Otherwise I may be unnecessarily restricting my diet.

I'm ready to embark on lots of experimentation!!