PCP Visit Today

[Gloria]

I went for an annual checkup with my PCP and brought a typed list of topics to discuss (thank you for the suggestion, Sara.)

I'll get a bone density test, even though it will just be informational. I'm not taking Fosamax anymore.

He never got the results of my thyroid scan over a year ago. It showed that I had some small nodules. I need to contact the hospital to request them to send it to him.

Brain tumor - he didn't get those results, either. I have to contact the hospital to send him the write-up, too. I've decided that even if the tumor begins to grow, I'm not having surgery. It's too risky because of the position next to my brain stem.

Pneumonia - Since I'm over 65, I'm eligible for a booster shot, so he gave me one today. It is the last booster I'll need. I hope it prevents any problems during my trip to Utah.

Statin - I mentioned that I stopped taking it again because one of the side effects is diarrhea. I said I wanted to see if the blood work showed a difference since I'm no longer eating ghee.

Blood test will include Vitamin D, thyroid, cholesterol, potassium, calcium and AC1. I'm not even close to having diabetes, but he thinks it should be tested because of my age.

Finally, I talked about my MC. I showed him the following two articles and told him I think my problem isn't as much MC as it is mast cells. I told him that I'm eating just 10 foods (actually 9 now), taking 3 Entocort a day, but am still having problems. My stomach was making noises while I was talking to him. He said he has a couple of patients with mast cell/histamine issues. I listed the various mast cell symptoms I've had: mouth sores, hives on face, itchy bumps on head in summer, D after eating any fruit or high-histamine foods. I mentioned that I haven't had any UTIs or chest pains since going on a low-histamine diet.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

http://www.archivesofpathology.org/doi/ ... 5(2006)130[362:MEIMMC]2.0.CO;2

I mentioned that a friend of mine with the same problems (a man from my church) is going to see a doctor at Rush-Presbyterian in Chicago who is in the same practice as one of the authors of the second article above. The doctor isn't in my friend's insurance plan, but Rush-Presbyterian is. Neither are in my plan, which is why I haven't gone.

I asked him about the tryptase blood test, urine histamine test and prostaglandin D2. He said he wasn't familiar with any of them. He's always deferred to my GI for my MC.

I asked him if he thinks I should see an allergist or an endocrinologist for the tests, since he didn't offer to order them. He waved his hands and said no, you should see the doctors at Rush. He was pretty emphatic about it and seemed to think I shouldn't wait for my friend's report. He said that I should share my list of symptoms with them. He had told me before that the best place for issues like mine is a university hospital. My friend's appointment is a week from today. I gave the friend this website URL and also the information about the Rush doctors and the article.

In the meantime, he said I should take Pepcid and Benadryl at night to see if it helps. If not, try Pepcid and Allegra. I haven't checked if the ingredients in them are OK.

Gloria

[sarkin]

Gloria, this sounds like a positive visit, and I'm impressed your doctor is aware of mast cells, and recommending that you pursue this with a university hospital. It sounds as though he has real regard for your thinking, and views you as a full participant in the process.

How frustrating that he's not been getting your test results...

I have been able to tolerate the Benadryl that comes in a clear gel-capsule. (I know you'll still triple-check the ingredients with your own magnifying glass!) There are a lot of different formulations nowadays. I hope it helps.

Sara

[tex]

Gloria,

So do you plan to go to Rush?

Tex

[mbeezie]

Gloria,

I would definitely give benedryl a try. As I have said before, you are very much like my sister. She only eats 7 foods, but she does take benedryl and tolerates it and it seems to help. I am not sure what form she takes, but we have a cousin who also has these issues and she uses injectable benedryl because she couldn't tolerate the fillers. I don't tolerate benedryl so I take allegra or claritin. We are all different.

I am glad to hear the low histamine diet stopped the chest pain. My guess is the UTIs were really interstitial cystitis, which some consider a mast cell disease. A low histamine diet helps me control those symptoims as well. What are the foods you can tolerate?

If you see a mast cell doctor they will want to start you on an H2 blocker for GI symptoms, and possibly gastrocrom. I never tolerated H2 blockers and never tried gastrocrom. Are you willing to try new meds at thgis point?

There are several members on the mast cell forum like you (can eat a very limited number of foods). have you consideredjoining that group?

Mary Beth

[Sharaine]

Dear Gloria,

Thank you for posting your update. I'm glad your PCP listened to you. It is disappointing to learn he never got your test results. I'll be praying for you that your brain tumor does not grow. You've had enough challenges with MC/mast cell issues without adding in a brain tumor. I'm disappointed you have to go through this.

I would be interested in knowing what foods you can tolerate, as is Mary Beth.

Sharaine

[Lesley]

Brain Tumor! That's insult to injury! No fair! (note all the !)

I hope it doesn't grow, and I hope you get your other issues under control. I haven't been dealing with it NEARLY as long as you, and I am having a hard time. I don't know where you get the patience and good humor from.

[Gloria]

Thank you for your comments and encouragement. I have really needed them lately.

So do you plan to go to Rush?

You've probably figured out by now that I'm very analytical and weigh all of the pros and cons of everything.

I checked our insurance and I would have to pay an initial $600 deductible, then insurance would pay 60% of visits. I would spend the money if I thought that it would help. That's the question, of course.

I'm sure that the Rush doctors will want another colonoscopy and prescribe a host of medications, which I would have to take the rest of my life. It may sound odd from someone who is taking a steroid, but I don't like putting a lot of medications in my body. The medications typically prescribed are antihistamines and Gastrocom. Antihistamines can be purchased OTC and I can try various ones on my own. Gastrocom sounds promising, but it is very expensive and I'll be going on Medicare next year. There isn't a generic version. I don't think it can be purchased overseas.

I think I'll try benedryl. It's helpful to know that Sara can tolerate it, but Mary Beth can't. It contains 155 mg sucrose and 62 mg lactose. I'm not sure about Pepcid:

Pepcid is used to treat and prevent ulcers in the stomach and intestines. It also treats conditions in which the stomach produces too much acid, such as Zollinger-Ellison syndrome. Pepcid also treats gastroesophageal reflux disease (GERD) and other conditions in which acid backs up from the stomach into the esophagus

I've never had GERD, and I don't eat any acidic foods, not even vinegar. I don't know if it would be harmful to reduce my stomach acid even further.

Mary Beth,
I'm still eating a version of the 3-day LEAP diet that I began 84 weeks ago. I still print the weekly food calendar. I've also adapted it for my husband to write down his meals in order to manage his diabetes.

I eat:
turkey, lamb, pork
cauliflower, asparagus
corn flour, starch, noodles, Corn Chex
almond flour and milk
arrowroot
avocado

It's obviously not a great list of foods, but I'm surviving with the help of supplements. I've not been able to add any foods back since I began the LEAP diet. Any of the foods on my list are suspect of course.

I've visited this mast cell group: http://mastcelldisorders.wallack.us/yabb/YaBB.pl Their symptoms seem completely different from mine. They always ask new members if they've been tested for a mast cell problem, and I haven't. After I read their site, I think that perhaps I don't have a mast cell problem.

Lesley and Sharaine,
I should have mentioned that the tumor is calcified. Once I learned that, I stopped worrying about it.

I will let you know what my friend says about his visit to the Rush doctors. It should be interesting.

Gloria

[tex]

Gloria,

FWIW, I agree with your analysis of the situation.

Tex

[Lesley]

Wow! You weren't kidding when you said you are a bit OCD! You're amazing! I need a bit of that.

Glad the tumor has calcified, and hope it's not pressing on anything important.

[Ginny]

Gloria, as usual it sounds like you have done your "homework" and are making the best "guess" at what to do. I totally agree with your assessment of the Rush procedures; I'm having the same experience with Baylor College of Medicine. The costs are now being considered and I am not having another colonoscopy unless someone can give me an affirmative reason as to why.

Were you not able to handle Zyrtec gels? At least they do not have lactose and Benedryl knocks me out. Have you tried using it with the type II antihistamines; Zantac, Tagamet or Pepcid as Dr. Scot Lewey has suggested.

It seems we keep eliminating and eliminating AND trying everything within our knowledge to stop the D! I am really beginning to think that our immune system is killing off the good bacteria and will not allow us to heal. Tex has mentioned that some of us, who can not get to remission, have an overpowering immune system. I am beginning to believe he is right.

I personally am going to try and search out a good immunologist and I am also going to research a doc that would do the fecal gut transplant that might be more effective than my low volume enema. I will be trying another one the later part of this week and then again the following week.

I hope the shot works for your pneumonia and that you can have a very pleasant time with your family. Most of all I want your D to STOP!!

Love G

PS: have gone to 3 Entocort a day and some Imodium and am getting some relief

[sarkin]

Glad to hear you're getting some relief, Ginny, and here's hoping the next transplant procedures bring even better and lasting results.

[Gloria]

Hi Ginny,

It feels like we keep bringing up the rear, but we're never making it to the finish line.

I've been thinking a lot about my PCP's recommendation and the comments posted here. Let me first mention that I've eliminated a few more foods lately (in spite of my vow not to). I finally finished the lamb that I had seasoned with garlic and I stopped eating broccoli. I didn't notice any improvement. I was down to two vegetables: cauliflower and asparagus. I decided I'd stop eating asparagus for a few days to see what happened. Wouldn't you know that I'm improving. Ginny will understand that at this stage, we're not real excited to see results from eliminating yet another food, mainly because it's never the "final intolerance." It only means that our immune system will soon find another food to attack.

After seeing the improvement, I started to realize that Mary Beth wrote 1 1/2 years ago that her sister could eat almost nothing, similar to me. She just posted the following above:

As I have said before, you are very much like my sister. She only eats 7 foods, but she does take benedryl and tolerates it and it seems to help.

This means that she's not healing or getting better either, even though she's been eating an extremely limited diet for the past year and a half, as I have. I am down to 8 foods after my recent eliminations; 7 if arrowroot is not included (it has no nutrition). It's beginning to look like diet provides temporary, but not lasting improvement for a small minority of us.

Now I'm weighing whether I want to live the rest of my life eating 7 foods, worrying about how deficient my nutrition is. I took a potassium pill this morning because it's a low potassium day. I paid a price a few hours later.

Perhaps the only way I'll be able to expand my diet is if I take meds the rest of my life, including Gastrocom. I bought a refrigerated, more potent probiotic today to test. I'm wondering if lack of good bacteria is the reason why we hard-core MCers can't find permanent relief. I have a feeling that fecal transplants will be another temporary, but not permanent, solution.

I'm glad that the 3 Entocort dosage is helping you, along with Imodium. I get some relief using Imodium, too. I'm reluctant to overuse it, for fear that I'll need to take larger doses of it.

Were you not able to handle Zyrtec gels? At least they do not have lactose and Benedryl knocks me out. Have you tried using it with the type II antihistamines; Zantac, Tagamet or Pepcid as Dr. Scot Lewey has suggested.

I've never tried the Zyrtec gels. I didn't notice any improvement using the capsules, but I never used them for more than a few days. My PCP told me to take Benedryl at night to minimize the drowsiness. Are you concerned about the antacid properties of Pepcid that I noted in my post above? I hate to add a new complication to this condition. So far, I'm taking 9 mg of Entocort a day and 1/2 to 1 Imodium when I know I'll be away from home for a while.

I hope you can get some answers from an immunologist. I'm anxious to hear what happens with my friend's visit to the mast cell specialist practice. First visits almost always lead to more testing, so there may not be any analysis or solutions for a while.

Good luck, and keep us posted on your progress. I'll be updating on my friend and, of course, myself.

Gloria

[tex]

It's beginning to look like diet provides temporary, but not lasting improvement for a small minority of us.

Gosh, I hope not. Well, I hope it brings improvement - I just hope it's not temporary. You know what I mean, I'm sure.

We're overlooking something - I wish I knew what it is. Antihistamines can have some pretty profound effects, sometimes. For example, regarding the breathing problem that I was having after I tried to reduce my Armour dosage - I found that an antihistamine helps to relieve the breathing problem, even though I didn't seem to be showing any allergy symptoms.

IMO, gut bacteria population manipulations, (together with diet changes), will probably be the future of IBD treatments, but we seem to be a long, long way from that potential, at present. Researchers consider bacteria to be "dumb" single-celled organisms, but in truth, it's the researchers who are unsophisticated, because they tend to think of bacteria as individual, insignificant creatures, when they should be treating bacteria as vast, biofilm organisms, capable of extremely sophisticated actions, because of their ability to communicate so well, and act in harmony, as a unit, to accomplish complex tasks that are beyond our comprehension. I believe that bacteria could heal us, if we were just intelligent enough to be able to figure out how to persuade them to do it. As a first step, we need to stop doing things that prevent them from helping us.

Tex

[Gloria]

Gosh, I hope not. Well, I hope it brings improvement - I just hope it's not temporary. You know what I mean, I'm sure.

Yes, I know what you mean, and I always hope that I've finally found "the one." I'm hoping that this time, of course, but my hopes have been dashed so many times that I try to suppress it.

I have been eating asparagus regularly since I began changing my diet. It was my favorite vegetable, until I stopped eating it with ghee. Then I realized that I actually loved the ghee. The only other food that I've been eating from the onset is pork, but not as frequently.

Gloria

[sarkin]

Gloria, I'm sorry to hear this. I can see why you're reluctant to hope you've finally found "the one" (but I hope so, too).