Mastocytic Enterocolitis

[mbeezie]

What about squeezing an orange (or lime etc) and putting it in water and diluting it and then sipping at various times during the day - will still get the vitamin C but in low doses to maybe prevent a reaction.

Mary Beth

[faithberry]

That's an interesting idea! It could be quite diluted, so an orange flavored bottle of water.

I'm going to try grapefruit next. One of my amine lists has grapefruit as low in amines, orange as moderate, and lemon as high. That's interesting because lemon seems to cause stronger problems for me. Of course, it's not just a question of amines, but the fact that citrus is a histamine-liberator. I don't know what the biochemical reaction is, but I assume it's more than just containing amines. I still need to check the Vit. C content of grapefruit to see how it compares to an orange.

My good news is that I had a small (organic) banana today without radical reactions and also 2 ozs. of free-range chicken. It's not perfect, but reactions are mild. Maybe that shot of Vitamin C revved up the DAO. Now that I'm out of my small town, I have more food options and have three other new foods to try. If I can just get enough foods to do a three-day rotation, at least I'll be on the road to improved nutrient status although it may not be at 100% quite yet.

Thanks for your suggestions and encouragement, otherwise I might still be stuck one the white rice only diet!!!!

[faithberry]

Happy Thanksgiving!

This is my update on recent food experiments.

I'm trying small amounts (1/4th to 1/3rd cup) of different foods that I know are low to medium oxalate and don't contain histamines and other related problem factors. I've had rutabaga, celeriac, carrots now and tried orange and banana recently. Have spaghetti squash and grapefruit to try.

It's not perfect. I'm reacting but the reactions are generally mild. The problem for me with the starchy foods (combined with white rice) is that I do get heat, increased urination and they dehydration, and transitory redness on my face and nose (maybe rosacea). It is a large carb load, but I don't know what else to do at this point. I don't know if I can avoid reacting completely. I'm also eating about 2 ozs. of the free range chicken a day.

It's not perfect, but I am getting a few more nutrients. I'm amazed that 1 cup of rutabaga will give you 53% of your Vit. C requirement in a day. Of course, I'm not eating that much.

That's where I'm at this moment in time. Eating and reacting, but not too badly. I'll have to see if it accumulates and becomes worse.

[faithberry]

Peeing like a race horse yesterday and this morning and a big pressure headache from dehydration. Guess these vegetables really won't work for me. Salicylates can cause that reaction. I was hoping to have one food chemical that's not a problem for me! Maybe it could be the extra fructose. Don't know. Oh well. I have a few more to try.

Hope everyone is having a relaxing Thanksgiving weekend.

[mbeezie]

Faith,

Dang, sorry to hear this. FWIW I get dehydrated when I am highly reactive. I didn't know that about salicylates.

I am actually doijng quite well. I ate many new foods over the holiday without incident. This still worries me as I remember feeling really good when I had my big vacine reaction. That must be the nature of this illness.

After many months of ferreting out sensitivites I have come to the conclusion that it is only certain lectins (gluten, soy, peanut, other legumes). All of the other sensitivities have calmed down so it is now easier to determine what lectins are problematic. Oats caused a mild problem. The last time I had a sorghum containing product I had a mild problem. The only 2 grains I tolerate for sure are rice and corn. I plan to test the rest at some point.

Take care,

Mary Beth

[faithberry]

Hi Beth,

I’m delighted all is doing so well and able to really enjoy new (old) foods over the holidays. Congratulations on a successful elimination process. Hope it keeps getting better and better.

I learned about salicylates and dehydration in The Salicylate Handbook, which I bought from this site -

www.foodcanmakeyouill.co.uk

in the early days when I thought salicylates might be a problem for me. I found this e-book to be very helpful although it’s written by a lay person. It briefly explains the physiological process behind salicylates and dehydrate in susceptible people.

Lately, I’m thinking there’s something more to my situation than mast cell activation alone. I was also diagnosed with Gilbert’s Syndrome in 2008. Doctors routinely tell patients that GS is a benign condition, but at least a segment of people with GS seem to have oddly similar multiple health challenges like fatigue, digestive problems, headaches chemical sensitivity, thyroid problems, etc. There’s a lot of information about this at www.gilbertssyndrome.com. People with GS have reduced glucuronidation, which is the detoxification pathway for bilirubin (that’s why we get a build up of bilirubin), a number of toxic chemicals and carcinogens, various drugs like acetomiophen and aspirin, and some food chemicals like genestein in soy. It just stands to reason that if billirubin builds up in the body in GS, it’s likely that other substances might do so as well. But doctors are not quite hip to this logic. Also, it probably depends on the overall toxicity of the body and how well co-pathways operate. 30% of patients have no symptoms at all. I have a friend that was born with GS and interestingly we have a very similar symptom set.

Two of the three foods I’m left eating are not ideal for people with GS. Because glucuronication depends on stable blood sugar to process its substrates, many people with GS are sensitive to high carbs, so white rice is not particularly recommended. People with GS can also be very sensitive to free glutamic acid and FGA occurs in chicken, although not at extremely high levels. Right now I’m just trying to hang in there food-wise and keep eating whatever I can manage without significant symptoms.

I sent my blood samples off for the Food Antigen Cellular Test today and will have the results in 7-10 days. I’m hoping that the results will give me some direction as to what I might tolerate. My situation seems to involve a metabolic problem, not only an immune system problem, and maybe a digestive problem too but hopefully the test results will give me some clues.

Thanks for all the support.

[mbeezie]

After reading the GS info it look like the symptoms vary widely. I could easily say I have many symptoms.

Keep us posted on your FACT test results.

Mary Beth

[faithberry]

Gilbert's Syndrome is very common, occurring in 5-7% of the population. They say it's more common in men and is usually diagnosed in the teens due to hormonal changes, but it seems problems with the enzyme also occur in post-menopausal woman, according to a nurse I know and some people get diagnosed at any age. 7-30% of people are asymptomatic and unconjugated bilirubin levels (the marker) can often be normal.

I found out in 2008 when my bilirubin levels increased to 46 and after extensive medical testing to be sure there were no other liver issues. Those are indeed very common symtpoms and I'm sure that some are not due to GS but to co-existing conditions. Since I have the GS dx as well as some of the co-existing conditions, there seems to be something to this. Plus wacky mast cells:-)

Will definitely keep you posted on the results of my FACT test. I was never more impressed with Fed-Ex!

[faithberry]

This is really interesting! I got my FACTest results back and I had almost no food reactions whatsoever. Just a mild reaction to crab and cheese mold.

What can this mean? Any ideas Mary Beth or anyone else? My husband will really think I'm crazy!

The FACTest tests the release of leukotrienes, so obviously I don't have a problem with leukotrienes. Or, the test was done incorrectly. Or is it possible my long term use of medications (sodium cromoglicate and anti-histamines) had an effect on the results? They say that's possible with some medications like predisone and advise you not to take them for several days before the test. I didn't take them for the recommended time.

Or, I have some other kind of problem. I don't have IgE problems. My IgE is extremely low.

I was really hoping the test would help me out, but I'm back on square one and feeling like a nutter.

[mbeezie]

Maybe the test didn't measure enough mediators - there are several types. Are you getting lectins in anything? White rice should be fine, but maybe there are still some trace lectins. Or your meat if it was grain fed, or drug excipients. For me, lectins were the main culprit and MRT doesn't measure lectins. Dr. Brostoff said mast cells degranulate from lectins.

Mary Beth

[faithberry]

Hi there,

Thanks for your input, Mary Beth.
You said-

Maybe the test didn't measure enough mediators - there are several types.

This is a good point. I will email them and ask which mediators are measured specifically.

On the other hand, the test results make sense to me in that my serum tryptase levels are lower now, much closer to normal, and I myself feel like I'm not have a lot of mast cell issues these days. So it may simply be that my mast cells are relatively stabilized. If long term use of prednisone can effect the results, then that's probably the case with mast cell stabilizers too.Plus the test might be better at detecting the kind of reactions shockers have vs. those of us who are leakers.

It's also possible my food reactions are not connected with mast cells issues or the ones that were have calmed down. I can feel the inflammation in my gut. It may be gut inflammation that's the issue now and not mast cell response. I feel it got set off again when I tried the no starch diet and ate a lot of chicken. That chicken probably was grain fed and had antibiotics, etc. I haven't been able to calm it down fully since then. I do get the joint and muscle pain so there may be some other type of antigen-antibody reaction going on.

It's like all my problems have shrunk down back into the gut (and joints/muscles) and I find that I am peeing so much and feel dehydrated a lot. I wake up in the morning with a headache from getting dehydrated in the night.

My husband was very happy with the results and doesn't think I'm nuts at all. My conclusion is that my medications are working, my mast cells have calmed down, and my eating problems now are coming from gut inflammation. I still need to stay low oxalate and fructose malabsorption could still possibly be a problem.

Thanks for the ideas.

[faithberry]

The more I thought about it, the happier I am with the tests results. It's confirmed that the mast cells are at bay and not the current problem, which is really inflammation in the gut. My food problems started several years before the mast cell type problems, so it's not surprising that the mast cells have calmed down and food problems continue.

I'm having a good week though and I feel that even this burning may be calming down and receding a bit. I am eating one serving of organic chicken every other day, 3 small servings of organic zucchini, carrots, or cucumber (3-day rotation), organic white rice and clarified organic butter. I think this will hold me over till I get to my next port of call on the 15th.

Because of the test results, I feel liberated to try a few more foods. I won't be going hog will by any means, but I would like to try fish and perhaps a few other vegetables.

I think both free glutamic acid/MSG and benzoates could be the problem for me because they may not be processed as efficiently by people with Gilbert's Syndrome. It may not be histamine foods afterall, not sure. Plus the oxalates, I'm sure of. Plus benzy and benzyl compounds are use in many aromatic foods and substances like perfumes and essential oils, my arch enemies! That would explain another element.

But who knows for sure! The main thing is that I needed to be eating more and I'm back on the right track in that regard.

Thanks for everyone's help.