Hello and Update

[faithberry]

Hello!

I hope you are all well! Just wanted to check-in, say hello, and give you an update...just in case anyone else is dealing with such an oddball situation as mine. I appreciate all the help I've received here and want to be sure to share in case anyone else is in the same fix.

As you might recall, my mild MC went into remission (no symptoms) eons ago (abt. 5 yrs.) but a few months later I began having gastric/digestive symptoms. We thought it was h. pylori. Treated that but the symptoms returned though no h.pylori antibodies in stool. Those symptoms did come and go for awhile until they became more or less (hopefully less) permanent. I've had a ton of other problems including chemical sensitivity and wacky mast cells (elevated serum tryptase).

Here it is almost a year later. My overall symptoms aren't as severe, but my digestive system is still in super disarray.

I took an IgG Antibodies test for delayed food and 16-inhalant sensitivities abt. 6 months ago. Lo and behold, it showed high reactions to inhalant molds and dust mites. Yikes. I could have guessed abt. the mold, but never considered dust mites in a million years. Well, gee that doesn't help on the immune system. I got dust mite covers and try to be careful abt. mold exposures. My naturopath says it's now obvious, it's my primary immune system reacting like crazy. My food panel was also very revealing although it wasn't able to show the full breath of my sensitivities since my diet is so limited. What it did show was helpful though. Of course, the naturopath can't actually treat me because I am so reactive to everything, including nutrients given by I. V.

I started weekly NAET treatments in September. I think it's helping but it's VERY slow going because I am testing sensitive not just to a zillion foods but to components of foods and other things. For example, to amino acids, oxalic acid, hydrochloric acid, h pylori, etc. It also takes me longer to clear a food than the average person. So it took me a month (4 treatments) to clear amino acids and I was still reacting to one amino acid (l-glutamine), which took another 3 treatments to clear. It's very slow going.

I know full well that people have mixed results with NAET. I have confidence in this practitioner and am willing to give it a whirl. She is very experienced practitioner and has a good track record. She is like a detective, exploring all the clues, and willing to look at all the components. Overall, I feel better and my symptoms aren't as severe, but it is very slow going. And I am still reactive to zillions of foods including all types of meat, fish, poultry.

Recently, it popped in my mind that these gastritis type symptoms could possibly be lymphocytic gastritis. Rare, of course. But not impossible since I've had the MC. My NAET therapist is also trained in JMT, which focuses more on autoimmune conditions. So she has a vial of lymphocytes at her disposal. As you might guess, I muscle tested weak for them. That doesn't mean I have lymphocytic gastritis necessarily, but my body is reacting to the lymphocytes in the vial. We will try to clear the reaction related to lymphocytes at some point in my long list of things to clear. It won't necessarily magically solve everything, but it's bound to help.

I'm feeling like it's time to get a colonoscopy and an upper endoscopy, but it's a little complicated trying to find a physician that will take my insurance. So it is taking some time to sort that out and see if it's even possible. I also need to get some blood tests done, it's been more than a year now. It will be interesting to see what my serum tryptase looks lie.

I know there's a thread here on lymphocytic gastritis and I will read it when I have a moment. It's strange how five years later I still have these gastritis symptoms, they have gotten progressively worse, and I am still hypersensitive to most food. I'm able to eat about 10 foods. The funny thing is that I do better eating Liloki Cheesecake (dairy and some gluten) than eating an avocado or brown rice. I know that's a dangerous came to play with dairy and gluten. Eating more could get me in trouble. But it was interesting to try it out and yummy too. As you can imagine after 5 years of serious food sensitivity, it's very frustrating.

That's the continuing saga. I wish you all well and continually improving health.

[mbeezie]

Hi Faith,

Good to hear from you! Sorry to hear you are still struggling with digestive issues.
It will be interesting to see if your tryptase still elevated. Have yout thought about consulting with a mast celle specialist? Your ongoing symptoms could very well still be mast cell related. Here is a recent article on MCAD diagnosis http://xa.yimg.com/kq/groups/13206694/1 ... ec2010.pdf If you get a colonoscopy/endoscopy it would be a good idea to make sure they stain some biopsies for mast cells.

I finally did see Dr. Castells in December and she confirmed a type of mast cell activation, although not clonal (more srious) type. I manage quite well with an H1 blocker prn and diet. I avoid gluten, dairy, soy/legumes, tapioca, and also follow low histamine/oxalate guidelines. This seems to work for me and symptoms have really calmed down.

I look forward to hearing about your progress. Keep us posted.

Hugs,

Mary Beth

[Mags]

Hi Faith--

I'm Mags. I'm fairly new around here, but I share your problem with dust mites. I am severely allergic. Here is what I have done to reduce my reactions:

I got a dust mite proof mattress and sofa from Ikea. I also traded in my beloved down comforter for a synthetic one that is also dust mite proof. I change out my pillows about three times per year, even with mite proof covers. I wash all of my bedding at least once a week (including duvet) on hot water. I have no curtains, and hardwood and tile floors, with washable rugs only; they get the same treatment as my bedding. This may seem a little extreme, but it has helped immensely.

If you already do all this, I am sorry to bother you with info you already know...

Best wishes,

Mags

[tex]

Hi Faith,

It's good to see an update, though I wish the news were better.

The funny thing is that I do better eating Liloki Cheesecake (dairy and some gluten) than eating an avocado or brown rice.

With avacado and brown rice, maybe you're getting a double whammy for someone with MC/mast cell issues - avacado and brown rice are sources of high fiber, and they are also sources of histadine. Have you ever tried black rice?

Those experiments, which were done in cell cultures, hinted that black rice bran suppressed the release of histamine, which causes inflammation.

http://www.newsucanuse.org/content/blac ... flammation

Thanks for the update.

Tex

[faithberry]

Hi Mary Beth,

Thanks for your support. I really appreciate it.

It's really good to hear that you have identified your triggers and are doing so well. I'm so glad you were able to see Dr. Castells. She would be my mast cell specialist of choice.


I am also cautious about high histamine foods and eat a low oxalate diet. At the moment I am eating zucchini, cauliflower, broccoli, collard greens, Russian kale (but not other types), bok choy, jasmine rice (white), and clarified butter with only mild symptoms. Occasionally, I will eat chicken or turkey but they bring on more symptoms. I can sometimes handle one egg and even an orange now and then. The cumulative factor does seem to be at play. I can handle those high histamine foods sometimes, but not others. I continue to take an H1 antihistamine daily, but I can't tolerate the H2 antihistamine or the Gastrocrom.


I've put mast cell activation on the back burner, although I haven't forgotten it entirely. It will be interesting to see what my serum tryptase levels are, which would of course influence my thinking about MCAD. However, I'm not sure my symptoms are a perfect fit and I suspect that serum tryptase can be elevated for other reasons that researchers have yet to unveil or confirm. I appreciate your reminder though because it does indeed remain a possibility.

Lympocytic gastritis seems a more likely possibility. You would think that it would calm down with the removal of gluten (eons ago), but it can also be connected with chronic h. pylori infection and who knows what else. So little is known about it. Interestingly, I read in a text book that mast cells sometimes show up in lymphocytic gastritis as well. Those pesky mast cells!.

Thanks for the link to the MCAD diagnosis info. I've downloaded it and will give it a look.

Stay well and I will keep you updated. With best wishes, Faith

[faithberry]

Hi Mags,

Thanks so much for this advice on dealing with dust might allergies and sensitivities. I appreciate it so much. Fortunately, we live in Hawai'i so we have no curtains or rugs and have tile floors. I did get dust mite covers for the bed, but haven't dealt with other pieces of furniture. So it helps to hear your advice. I didn't realize that changing pillows so often might be required. Yikes! Thanks for the advice. Fortunately, I don't have the immediate onset allergies, but the delayed sensitivity can be like have chronic illness all the time.

You came to the right place to get the help you need to sort out MC issues. The people here are an incredible support.

Wishing you well, Faith

[faithberry]

Hi Tex,

It looks like the forum is hopping with many new people. I guess MC is being diagnosed more and more. I'm glad people have this forum as a refuge and information source.

Thanks for the idea of black rice. I will check it out. I am in dire need of variety in my diet! All meat and poultry activate the burning sensation and I avoid fish due to the histamine levels.

Thanks for all you are doing here. All the best to you, Faith

[TooManyHats]

The information on lymphocytic gastritis is very interesting considering I had "mild reactive gastropathy-no evidence of intestinal metaplasia--negative for H-pylori". Many with this are negative for h-pylori.

This is a type of chronic gastritis with dense infiltration of the surface and foveolar epithelium by T lymphocytes and associated chronic infiltrates in the lamina propria. Because of similar histopathology relative to celiac disease, lymphocytic gastritis has been proposed to result from intraluminal antigens. High anti-H pylori antibody titers have been found in patients with lymphocytic gastritis, and, in limited studies, the inflammation disappeared after H pylori eradication. However, many patients with lymphocytic gastritis are serologically negative for H pylori. A number of cases may develop secondary to intolerance to gluten and drugs such as ticlopidine.

My doctor prescribed Nexium for this. Thankfully, I found the PP who told me that PPI's are contraindicated for MC.

I really need to find some reliable things that I can eat that don't cause reactions. We eat fish at least once per week and I'm now starting to wonder if this isn't a good idea. Wouldn't you know? It's the one meal I look forward to each week. A break from the boring chicken.

[faithberry]

Hi Arlene,

This info on lymphocytic gastritis is interesting. Thank you. If I understand correctly, it seems elevated lymphocytes can occur any where there is mucosa.

Why is it that PPI's are contraindicated in MC?

I really hope you can find some foods that don't cause reactions. I know how difficult it is to have a limited diet!

Best wishes, Faith

[tex]

Why is it that PPI's are contraindicated in MC?

They have been documented to actually cause the disease.

http://gut.bmj.com/content/59/12/1727.extract

Tex

[faithberry]

Thanks, Tex. It's really good to know that.