Mastocytic Enterocolitis

mbeezie · Post by **mbeezie** » Sat Oct 03, 2009 2:08 pm

I believe I also have dysautonomia/POTS. No other major health problems at present. I have in the past had numerous gyn problems (2 ovarian dermoids resulting in 2 surgeries, uterine fibroid the size of an orange/myomectomy and cervical cryosurgery) and I have some thyroid nodules but no thyroid disease at present. Yes, I do get hot (or cold) when others are not and have dry skin and hair . . . just thought I was getting old.

Mary Beth

faithberry · Post by **faithberry** » Sun Oct 04, 2009 7:51 am

Hi Jeannie,

My skin is much better than a few years ago. But I do get dry nostrils and dry hands when I eat some triggers.

In terms of burning, I get symptoms of burning when I eat certain types of triggers. Any type of histamine-containing food will give me burning, which can range from burning in my thighs to feel like my whole body is burning for hours. Are you on the histamine restricted diet?

Maybe your burning is a different type. Do you possibly meaning flushing?

I also get very hot after I eat, like a hot flash.

In Chinese medicine, heat rises so if you have too much heat (e.g. inflammation) in the gut, it would follow that one would get these symptoms of dryness and heat.

I haven't heard other people talk of it before like this so it's interesting to hear.

The second year of my illness, my rheumatologist told me that I don't have Ankylosing Spondylitis since it didn't show up on the CT scan of SI joints (even though I am HLA B27 positive and had symptoms) and she diagnosed me with Fibromyalgia. I believe she got it all wrong, but that's the dx standard at present. The erosion doesn't show on radiologic tests for 7-10 years, so in the meantime you can have AS and all the symptoms and not get proper treatment. My current doctor definitely thinks I have something like Spondylitis going on. There's also Spondylitis associated with IBD (I have LC).

Anyway, I don't think I have fibro and absolutely do think I have AS, which can cause cellular derangement of the muscles according to Prof. Ebringer, an expert in the field.

Good to connect. Take care.

Faith

mbeezie · Post by **mbeezie** » Sun Oct 04, 2009 8:33 am

Someone sent me info on a Diamine Oxidase supplement called HistoXym, intended for people with histamine intolerance (to provide missing DAO in the gut). Have you heard of it or tried it? It contains some starch - don't know if that means gluten. It also contains corn starch.

Mary Beth

faithberry · Post by **faithberry** » Sun Oct 04, 2009 1:34 pm

Hi,

I tried the version made in Germany/Austria. Probably due to all the other ingredients, it made me ill. It had a lot of excipients. I could handle one, but the second one was a gut killer. I cannot tolerate starch, but also the capsule was gelatin which is a histamine liberator. Duh!

I would proceed with caution if you wish to give it a try. There's also histame, at www.histame.com Or maybe they are the same.

Let us know how it goes if you go for it! My guess is that anyone with a damaged gut cannot be tolerating histamine foods well. As you probably know the diamine oxidase lives on the tip of the villi.

adelie · Post by **adelie** » Sun Oct 04, 2009 4:05 pm

I've had a lot of problems with medication in gelatin capsules. It seems like just about all meds are either in a gelatin capsule or lactose-based tablet - whatd'ya do? I've gone round and round with doctors and pharmacists trying to identify meds that don't have one of those two ingredients (gelatin and lactose) and it's amazing how few are out there. With all of today's known allergies and sensitivities, I would have expected more variety, but was sadly disappointed. About the best I've been able to do so far is find meds in gelatin capsules with ingredients I can tolerate and it's acceptable to dump the contents into a little applesauce (or swallow straight with a quick chaser for the taste) and toss the capsule.

I'm starting to see studies using meds mixed in glucomannan/konjac gel for time released delivery in the intestines (mainly diabetic and cholesterol communities) since the gel breaks down slowly in the GI tract. I use a tiny bit of konjac powder as a thickener sometimes and if you use a little too much, you get quite a slippery critter (good for C, not for D). Way too much and it might as well be a superball bouncy ball - an obstruction for sure. So, I'm not sure how it would do for this community. Just thinking out loud, it seems like it would slide through too fast during a flare to be effective, but for maintenance meds in between if the consistency of the gel is right and you don't use a lot of the gel, it might do well in terms of maximizing the area of the intestinal tract that comes into contact with the meds. I've always had trouble with time release meds which is why this caught my attention. Either they would "release" into the toilet intact or dissolve and get absorbed all at once at some random time and then I'd have overdose type side effects. Anyone else seen anything on using gels with GI medications?

Karen

faithberry · Post by **faithberry** » Mon Oct 05, 2009 2:10 pm

Karen,

I just put the contents of a gelatin cap in a vegetarian cellulose capsule. It's easy to buy empty caps on line. But these days I don't tolerate even that.

jme22 · Post by **jme22** » Tue Oct 06, 2009 4:07 pm

Faith,

A question for you as I seem to remember reading that you have been on Gastrocrom -

I finally started on Gastrocrom yesterday. But, prior to starting it I had a pretty severe flare up of nausea, fatigue, headache, C, etc. so I am particularly anxious to see if the Gastrocrom helps relieve my symptoms. I read that Gastrocrom takes several weeks to become effective, but I was wondering what your experience has been with it. Did you find relief from your symptoms fairly quickly once you started the Gastrocrom or was it more gradual?

I spent all of yesterday in bed and part of today as well due to the headache and nausea. After feeling so good over the weekend (dare I say normal?) I am discouraged to feel so poorly again. I'm anxious for the Gastrocrom to "kick in" and would love to hear about your experience with it.

Thanks Faith!

Julie

P.S. Many thanks for asking Tex to include ME in the forum header and even more thanks to you Tex for taking the lead on that and putting ME in the header! I agree with Faith this is one of the most relevant forums for those with ME or suspected ME, so it only makes sense to include it in the header. Thank you!!!!

Post by **tex** » Tue Oct 06, 2009 5:24 pm

Faith, Mary Beth, Jeannine, & Julie,

You're all very welcome. I hope that those who are searching for information and support for ME will be able to find us more easily now. It usually takes the search engines a couple of weeks or so to index new information, so that it can be available for searches, but we should be able to see results before long.

Julie, I hope you get some relief soon. I had quite a few times, back when I was still regularly reacting, that I wasn't able to venture far from the bed, because of nausea with a migraine, on top of uncontrollable D, fatigue, etc. That's the pits, and I really feel for you. The D and fatigue never kept me from going to work, but nausea and a severe headache will put me out of commission just about every time.

Tex

faithberry · Post by **faithberry** » Wed Oct 07, 2009 2:42 pm

Hi Julie,

Sorry about your flare up of symptoms!

A few things I know about the gastrocrom. First, my doctor told me to start with one vial for two days and then add the second for two days and so on until you are up to your dose. He said it's a safe medicine, but it's strong and it can upset the mast cells if you go onto it too quickly. So amp up slowly if you can. That's what I did and I took even longer.

Secondly, he said to swirl it around in your mouth first. Guess this helps if you get mouth/tongue symptoms. Not sure.

Thirdly, it can take 6-8 weeks to work in full. But some people see results much sooner, like in a few weeks.

To be honest, I can't pinpoint exactly the differences I've noticed since being on it. However, I stopped it recently for a few weeks and I really felt like I had to get back on it. I felt less well without it. For many people it's like a miracle drug, allowing them to eat more foods. I can now eat chicken and I haven't been able to eat meat for a year. So maybe that's part of the difference. I rarely get nausea and vomiting anymore and I've been able to stop my H2 blocker. But I don't know how much is due to the Gastrocrom or my limited diet. It's also said to help with systemic inflammation in addition to in the gut.

My problem appears to be the starch in food, which I only found out recently, (in addition to the wacky mast cells), so Gastrocrom can't totally fix the problem if I keep eating starch foods and feeding a particular bacteria in the gut and getting the mast cells all up in arms. It hasn't been a miracle drug for me, but that's because my problem is a little different. Many people on the The Mastocytosis society website consider it one of their miracle drugs.

Good luck. I hope it helps you. Be patient but maybe you will see results in just a few weeks!

jme22 · Post by **jme22** » Thu Oct 08, 2009 4:43 pm

Thanks for the info Faith. It sounds like you got some benefit from Gastrocrom though not as dramatic as others with mast cell related issues. It's encouraging to know that some have found the drug to be nothing short of a miracle for their symptoms. I sure hope I fall into that category. I'm discouraged about feeling good for days at a time and then having such a sudden and drastic return of symptoms. My symptoms constantly wax and wane seemlingly without explanation. It's very frustrating and puzzling. I can only hope the Gastrocrom will be the answer. Sounds like it will take awhile before I know, but I'll be patient and hope for the best.

On a different note, I emailed The Mastocytosis Society and asked if they would consider including some mention of ME on their website, perhaps in the glossary of terms. Given that ME is a mast cell driven disorder, including it on the website made perfect sense to me. What an interesting response I received to my request. Take a look:

The physicians on our medical advisory board do not currently accept this as a valid diagnosis. I am not clear as to why they are opposed to it--it has something to do with the degree of inflammation present in the intestine, and the gastroenterologists on the Medical Advisory Board do not support the diagnosis yet. They still diagnose patients with these symptoms as having mast cell activation disorder. However, a few years ago many of them would not ever consider that diagnosis, either, so stay tuned! You may have been diagnosed by a trailblazer!

Well, this was kind of a punch in the gut. (Pun intended.) I know that ME is a new diagnosis and as such is not well recognized in the medical community. However, to hear the The Mastocytosis Society, in particular their GI docs, don't even recognize it yet was a bit of a surprise. Plus, to be told that my set of symptoms is considered MCAD by some in the medical community is even more surprising. My allergist told me that I definitely didn't meet the diagnostic criteria for MCAD. All this leaves me perplexed to say the least. Perhaps this is just the nature of dealing with a newly recognized diagnosis.

As always, I'm appreciative for the guidance and support offered here. Faith, a special "holla" out to you for sharing your experience and knowledge. I never sign on here without learning something new.

Thanks guys. Wishing each of you good health,

Julie

Hopeliveshere · Post by **Hopeliveshere** » Thu Oct 08, 2009 7:19 pm

Just wondering what part of the GI tract is inflammed with you all? For me it is my colon, small intestine and stomach...and if any of you have been on Entocort and did it help?

I assume this is the same for you all?

Thanks! Jeannine

Faith what did you eat to keep from losing weight and how did you get protein if you couldnt eat meat?

Jeannine

faithberry · Post by **faithberry** » Fri Oct 09, 2009 12:48 pm

Julie,

That's a very interesting response from Val. I've been wondering how the mast cell specialists might differentiate ME and MCAD and how they distinguish these and Masto from mast cell hyperplasia (too many mast cells in response to inflammation, fibrosis, or some cancers). It looks like they don't even know (or agree) themselves! I wonder what she means by "the degree of inflammation?"

I noticed that sometimes people's mast cell diagnosis can also change over time. Dr. Metcalfe is certainly an expert in mast cell disorders. I don't know what his take is on MCAD. I guess this is why people get second opinions; not all experts agree. I wonder if it would make a difference if you saw him directly the next time you need a check up. But I don't think that would be worthwhile if he doesn't accept the dx of MCAD. He's probably right about the SM for the reasons you gave in one of your initial posts. It seems like the mast cell experts will be meeting this year (or next year?) to establish the diagnostic criteria for MCAD. That will help to make it more clear for all of us!

I understand how you feel being thrown a curve ball like that. Whatever they call this disease, the wonderful thing is that you do have a diagnosis and you are getting the right help. Like you said before, the treatment is the same. So many people with mast cell problems go for years without a diagnosis. It seems like it takes awhile for people to find the right mix of medicine for their own personal mast cell configuration. It must be frustrating to still be dealing with these off and on again symptoms.

Do you think you have identified all your triggers? Given that you feel well for a few days and then have a bout of symptoms, I wonder if you might be being exposed to unknown triggers at those times. Sherry Rogers, MD says that for some of us the gut can be the target organ for what we eat and breathe. When I was at my worst, just smelling very ripe apples would make me sneeze, not to mention wood smoke, perfume, and toxic chemicals. I'm still sensitive but it's not as extreme as it was before. I do think the Gastrocrom has helped.

I wonder if there could be any connection with your mixed connective tissue disease. Mast cells live in connective tissue. I found out recently that I probably have spondylitis (a type of arthritis that is not RA that also causes muscle problems) and mast cells can be involved with arthritis too. I don't know if my extra mast cells are in my joints/muscle connective tissue or in my gut.

I don't think these conditions are necessarily forever, if we can get to the core of the problem. In my opinion, mast cells wouldn't get wacky if there wasn't a pathogen or toxin they are reacting to in the gut or someplace else in the body. In my case, I think it's the bacteria klebsiella p. that has been associated with some types of spondylitis in research. So my current focus is the no starch diet to deprive the klebsiella of their food supply. We'll see how it goes in time. But it certainly isn't easy getting to the core issues. It's taken me five years and it's not certain yet I have it sorted out. In the meantime, food is still a huge problem for me.

Thanks for sharing what Val said. I find it very interesting.

faithberry · Post by **faithberry** » Fri Oct 09, 2009 1:00 pm

Jeannine,

I really don't know which part of my gut is inflamed. There wasn't any visible inflammation when I had my colonoscopy five years ago. My c-reactive protein is elevated (at 8 earlier this year and then dropped to 7) so I know there is inflammation somewhere. It could also be in joints. Not sure and fortunately this number is not too high.

I did lose weight! Down to 85 lbs at my worst point. I began to have serious abdominal pain from eating meat, poultry, fish. I think these can be too heating (from the chinese medicine perspective) when you have inflammation, and I ate quite a lot. So I switched to brown rice and millet. I ate a LOT to try to get as much protein as possible. I also was able to tolerate clarified butter (helps with the calories) although I cannot tolerate any other oil. Then I had a few vegetables that I could eat. I couldn't gain weight for about 8-9 months. But once I started to take Zantac, I started to gain weight without any problems. I couldn't eat more types of food, but I could eat more volume of food. The problem with millet is that it's high in oxalates and I ended up having calcium oxalate crystals in my urine, so I had to give up the high oxalate food. Then in the end eating all those grains worsened my joint problems.

I am now trying the No Starch Diet. A woman named Carol Sinclair wrote a book called The IBS Low Starch Diet. Later she found out she also has ankylosing spondylitis. This is the general program I'm following. She says the diet can help anyone with IBS. Dr. Ebringer says it helps people with AS and gut problems but may not be so helpful to others. I don't know. It's similar to Breaking the Vicious Cycle. The idea is starving the bacteria of their food supply (starch or types of starch). We'll see how it works over time. I know it's definitely helping my joint pain.

MC is also thought to possibly be related to a bacteria. I noticed that when Tex did his original spare foods diet, he was eating much starch, although he did eat a little rice.

Just my random thoughts.

mbeezie · Post by **mbeezie** » Fri Oct 09, 2009 3:31 pm

Interesting discussion on the difference between MCAD and ME. It seems like most of us do have symptoms outside the GI tract. I wonder what was discussed at the conference last week - Dr. Greenberger was speaking on GI symptoms with MCAD.

I got some results back. No mast cells in my sigmoid colon and tryptase, prostaglandin and IgE are normal. I am waiting on the urine histamine. Dr. G told me all the tests could come back normal and I could still be symptomatic.

Does anyone react to weather changes? I swear I react more when a front is coming through. Lately I have been struggling with the itching. Time to try the Claritin, I suppose. I gave up on the Zantac and will only use prn - don't think I need it. I know many of my food triggers. Like you Faith, I react to smoke and chemical fumes - bleach is one of the worst for me.

I can only tolerate a few starches, rice, corn, quinoa and oats. I can't eat yeast, so that limits any bread. I am currently testing potatoes/nightshades again - I suspect a problem. I feel Ok after eating starches and it doesn't cause D. Potatoes/nightshades in large quantities definitely do cause some joint stiffness (solanine). I am expanding what I eat each week and so far, so good.

Take care everyone,

Mary Beth

faithberry · Post by **faithberry** » Sat Oct 10, 2009 7:58 am

Hi Mary Beth,

Thanks for letting us know about your test results. Sorry they don't point to a dx yet. Fortunately you have Dr. G who isn't going to tell you that nothing is wrong and will treat you. Even some people with Masto have normal tryptase. And there's no saying what's happening in the rest of your colon. It will be interesting to see what the 24-hour urine says.

Weather changes used to bother me a lot in the past. Especially damp, rainy weather, electrical storms, and cold weather. My itching started or reappeared a year ago when the weather turned cold.

I'm trialing tofu today. These days I'm eating chicken (no more than 6 ozs.) clarified butter (no more than 2T), napa cabbage, bok choy, cucumbers (raw only). I found my zucchinis contained starch even when they are raw, so I've had to drop them. I find it's good to do an elimination style diet like this and just add back one food at a time. I've never had the patience to do this in the past. Knowing that starch is the problem gives me some new option for foods I might be able to tolerate.

Not everyone with mast cell problems has gastritis or excess acid. I don't use the Zantac anymore, although they say there are some H2 receptors in skin as well. I seem to be doing fine on 5 mg. of Xyzall a day and the Gastrocrom. Before I took 10 mgs. of Xyzall and still do if I go out and about where there's more exposures. I still limit my activity quite a lot.

Hope you're able to keep expanding your foods!!!!

All the best...