Mastocytic Enterocolitis

[jme22]

Greetings,

Thank you for the excellent points you brought up Mary Beth. The allergist/immunologist up at Hopkins screened me for SM. My tryptase level was normal, in fact, not even the least bit elevated. He also tested some of the tissue from my biopsy and determined that the shape of the mast cells were not what he would expect for someone with SM. So, it seems that SM is not what I’m dealing with based on his findings. He also did not think it was MCAS. (I can’t remember the reasons he ruled that out.) Having said this however, I’m still not completely convinced that the mast cells aren’t creating problems in addition to my gut issues. (Just a “gut” feeling I guess you would say…LOL!) I’m going to check with my GI doc about the other tests you mentioned and see what he thinks about running those on me as well. I’m particularly interested in the Mediator Release Testing for food sensitivities. I’m suspicious that certain foods are among my mast cell triggers, so identifying the actual culprits would be a huge step. I’m guessing these are tests the allergist would run on me, so I’ll talk with him about it.

I’ve been having an increase in symptoms this past week so I’ve been a bit discouraged. I felt like I was moving in the right direction when I was suddenly hit with C, cramping, upper GI pain and nausea again. This constant waxing and waning of symptoms is so frustrating. I’m hoping that the Gastrocrom will help me really turn the corner on these symptoms. (I’m late getting the Gastrocrom because the pharmacy had to special order it. OMG, one of the most expensive meds I’ve ever taken. Thank goodness for my Rx card, or I simply couldn’t afford it. Nearly $500.00 for 48 doses and you take 2-3 doses each day.)

Mary Beth, in answer to your dosage questions; Zyrtec is 10mg twice per day and Xantac is 150 mg twice per day as needed. I only take the Xantac when my symptoms really start acting up, which has been the case of late, so I’m taking it.

I’m still having sporadic episodes of what the doctor terms “upper right quadrant pain” which everyone was chalking up to a kidney stone seen on one of my many CT scans. However, the urologist looked at the films and said if it was a stone, it was too small to cause pain. So now, I’m left to wonder why I’m having this pain. If I had a gallbladder I would swear it was a gallstone attack, but my gallbladder is long gone. The pain started the same time as all the other GI symptoms last year, so I feel like it somehow is related to the mast cell issues. But my GI doc isn’t so convinced. Again, just like my sudden sensitivity to certain foods, can this pain really be a coincidence given where it is and when it started?

I continue to search for answers and understand the full impact of these little varmints called mast cells. They are a tricky bunch indeed!

Wishing each of you good health,

Julie

[mbeezie]

Julie,

The allergist probably won't have a clue about MRT since it has nothing to do with IgE allergies. To find a doc or dietitian in your area contact signet at www.nowleap.com. My allergist was no help whatsoever.

Mary Beth

[faithberry]

Hi Mary Beth,

I am interested in the MRT testing. Glad to hear it was so helpful to you. Thanks for letting us know about it. I looked at the website but the information isn't complete. Can you tell me if you were able to get the testing independent of the other programs they offer? What was the cost?

I am familiar with the Alcat testing (similar) but it is very expensive. In Europe, Genova Diagnostics has the FACT test Food Allergy Cellular Test, I think it's called, but I haven't seen it in the US.

My tryptase is hanging out around 22.5. I think it's a combination of GI issues (LC) and Spondylitis (joints, muscles, nerves). I stopped taking my H1 and H2 blockers and my gastrocrom and thought it didn't make a difference, but now I'm having a food crisis so I see that indeed it does. I don't usually need the H2, but do need the others.

Wow, you are so lucky to see Dr. Greenberger! Can't wait to hear your test results from colonoscopy and blood tests.

Be well.

[faithberry]

Julie,

I don't doubt the mast cells can cause some of those systemic problems. I had itching, migraines and the like!

Good luck!

[mbeezie]

Hi Faith,

I think you can order the MRT without the LEAP/dietitian program, but I think it's actually more expensive to do it that way (they want you to use the dietitian). I am a dietitian so i was able to get the reduced cost and just intepret the results myself. There are different levels of tests (50 items, 80 items 150 items), so the cost will vary depending on the test you choose (I recommend the 150). Additionally, each dietitian's cost will vary. Depending on your insurance and where you live, you might get reimbursement for the blood test and the dietitian cost - they can check this prior to the test. Contact Signet to find a dietitian (or doctor) in your area that offers the program. And actually, they don't even need to be in your area - many will do consultations over the phone.

Just noticed the flags - are you in France or the US? Signet does have affiliates in Europe.

Mary Beth

[faithberry]

Hi Mary Beth,

Thanks for the information. I'm moving about at the moment in Europe, but I will be back in the States in a few months. I will probably wait until then to consider taking the test. There's a similar test available via Genova Europe in the UK called the Food Allergen Cellular Test, but I'll also check the Signet resources in Europe.

I want to take back my comment about not seeing a difference from the Gastrocrom and the H1 blocker. I look like a completely different person than I was 9 months ago! I'm much stronger, have gained weight, am less reactive (but still very reactive). The benefit of stopping it for awhile was the chance to see clearly which foods of my tiny menu are a problem and to adjust.

I seem to have Spondylitis and any starch sets off a cascade of joint and muscle pain, although it doesn't bother my gut. So it was really good to see what happened eating rice after not eating it for two weeks. I had been thinking rice and other grains were safe because they didn't bother my gut, but that was all wrong! They are a big part of my inflammatory process, contributing to the pain piece.

I see I also cannot eat any of the traditionally inflammatory foods like eggs and fatty chicken. I might be able to do some egg whites, but need a break as I was getting some intense reactions from eggs.

I need to get back on my gastrcrom today and just popped my Xyzall.

It's so helpful to be able to be in touch with you and Julie, other people with mast cell issues and gut issues.

Thanks so much.

[faithberry]

Just want to mention that there are people that have normal range tryptase but test positive on bone biopsy for mastocytosis. So a normal tryptase does not rule this out. But your doctor sounds on top of his game, so this is probably not the case with you. Since the immune system in the gut communicates with the rest of our body, it makes sense that we also have systemic symptoms.

[faithberry]

Tex,

I'm so grateful to be able to connect here with other people who have gut and mast cells problems!!!!! Thank you for the forum and making the space for that. Since ME is a form of microscopic colitis, although it may not yet be formally included under that umbrella, maybe one day it will be listed in the forum header :) I don't know anywhere else on the net that one could find support with this aside from The Mastocytosis Society, but its focus is more on Masto and MCAD.

Hugs and gratitude.

[faithberry]

Mary Beth,

BTW, I am also a double DQ1, with the 501 and 502 allele.

[tex]

Faith,

You're most welcome, of course. I agree that while ME is clearly a type of MC, it's often viewed as a separate issue. Since we seem to have at least several members who are dealing with it, I think I'll take your "hint", and add it to the title, (and also add it to the meta tags in the site description, that are normally visible only to computers, so that the search engines will be able to do a better job of indexing it). Hopefully, that will make it easier for others with ME to locate us, and we'll all be able to learn more about it, by sharing new insight.

Thanks for the suggestion.

Hugs,
Tex

[mbeezie]

Faith (fellow double DQ 1-er),

Still waiting (impatiently) for my test results - they must send them off because they are unusual tests.

I had been taking Zantac and Zytrec, small doses but stopped to see what would happen. I don't like taking medicine. The zyrtec makes me VERY sleepy, so I may need to try something else. Last night without the zyrtec I got very itchy after dinner. I took a full zyrtec, which stopped the itch but made me a zombie until about 2 pm today. Sometimes I really need the zantac.

The annual Mastocytosis Society meeting is going on today and tomorrow. You can buy copies of the lecture on their website (previous years sell for $50). Dr. Cem Akin and Dr. Norton Greenberger were both speaking on MCAD, so I think they are recognizing more than in the past. When I spoke with Dr. Greenberger he indicated that they are starting to diagnose it more frequently. Be on the lookout for an article by him and Mariana Castells in the NEJM.

I have started having some mild dizziness/lightheadedness. When it happens it is brief, but a very starnge feeling. This can be an MCAD symptom - very annoying. The itching was also annoying and most likely related. I have good days and not-so-good days. There are days when I feel great and have one normal BM and there are days when I feel symptomatic and have a 2-3 stools (more formed than in the past but still not normans IMO). Overall, I feel much better and am eating more and more food, but I can't say I have reached remission from GI symptoms. Keep in mind that I think I have non-food triggers as well as food triggers.

FYI - I have visited your blog many times!

Mary Beth

[faithberry]

Hi Mary Beth,

It's so good to connect!

Quite a few people have this problem with Zyrtec. I take Xyzall (the next generation Zyrtec) and it doesn't have this side effect for most people. Others who have switched from Zyrtec to Xyzall have been able to eliminate their drowsiness too. So you might give it a try! Prescription only though. The Xyzall stopped the itching for me.

I was wondering what prep you used for your colonoscopy with Dr. Greenberger. I've read most of your posts now and see that you reacted to one of them. I'm seriously thinking about having a colonoscopy.

I've been able to control all my bigger mast cell type issues through diet (migraine, pressure headaches, nausea, vomitting, etc.) and with the help of the meds. I don't like taking meds either, but they have helped me so much. I try to keep to a minimum and don't need the Zantac at present. Now I'm onto trying to heal the gut and almost all food is still a big problem for me. At the moment, I'm eating chicken, bok choy, cucumber, and ghee. I think starch and the bacteria klebsiella are core issues for me. We will see over time. I feel less reactive to my external triggers though.

Glad you are improving! May it continue and continue until you reach full health

[faithberry]

Thank you, Tex! Maybe a few more with ME will find us and we can help and support one another.

Hugs and gratitude.

[mbeezie]

When I tried to do the colonoscopy in July I reacted to MoviPrep. I am not sure what was in the MoviPrep that caused that (I am guessing polyethylene glycol or nutrasweet, but not sure). We then opted for a sigmoidoscopy and I just used saline fleets enemas, which were no problem. Incidentally, I was worried about reacting to the meds they were going to give me, versed and demerol. Dr. Castells advises against any opiates as they can precipitate degranulation, so we used nothing. Quite honestly, I thought this was fine and since it didn't hurt, wondered why they use so many meds. I suppose I know the answer - money. Because I didn't have meds, I didn't need to go to recovery and be monitored - just got dressed and left. They took 10 biopsies and were checking for MC and then staining for mast cells.

Faith, it is great to have someone to talk to about this. And Tex, I appreciate you allowing us to do so here.

Mary Beth

[Hopeliveshere]

I too have all these symptoms that you both have. I am on zactac 150mg twice daily and need to start a H1 blocker for itching. Do any of you get the dry skin or the feeling that you are burning up...like you need to be sitting in a freezer to cool down?

Mary beth do you any other health problems? I also have CFS and Fibromyalgia.

Tex I am so glad you are adding the tags so other might find us here. This place has been a GOD send!

Thanks, Jeannine