GI follow-up

Patricia · Post by **Patricia** » Fri Sep 18, 2015 1:14 pm

I had my GI follow-up appointment today. I like my GI, he takes a lot of time to answer any questions. It has been a year since my LC diagnosis. I told him about the positive result of the SIBO test conducted by my ND. He suggested a month long antibiotic treatment but didn't push the issue when I said I was not so sure about it and that I preferred to continue eating foods I tolerate well. He also said that there were side effects with any treatment, although he said the treatment would not affect the MC.
He ordered a lactose breath test and a fructose tolerance test. I will go ahead with the fructose tolerance test but I canceled the lactose test. When I thought about it some more I thought it really made no difference knowing whether I am or am not lactose intolerant since I am not eating dairy anyway because of the casein. So what's the point finding out whether I tolerate lactose or not? The test will just make me feel miserable.
He said that SIBO still needed a lot more research. Diet was only treating the symptoms but not the cause. He said the same applied to MC. He said that Budesonide would treat the inflammation, while diet would only treat the symptoms of MC without treating the inflammation. Isn't diet preventing the inflammation from occurring/reoccuring?
He also ordered the usual 6-month-gallbladder follow-up ultrasound because of the gallbladder polyps. He pointed out, once again, that if the grow, they could become cancerous.
When I told him about the rash in my face, coming and going, depending on how I was reacting to foods, he ordered a blood test for chromogranin A and serotonin to rule out another type of cancer (carcinoid). I had a CT scan of abdomen and pelvis with oral/IV contrast in April of this year and it was normal regarding this. He told me to follow up with my PCP because of a "tiny nodular density of 4 mm adjacent to a pulmonary nodule" also seen in the CT. Well, the CT had been ordered by the urologist whose office told me everything was fine in the CT. And the PCP did not read the CT scan report because the urologist declared it was fine. It was only the GI that pointed it out to me. I will try out a new PCP next week and I will ask her about it (my current PCP has given me a hard time on several occasions, I think she is overwhelmed and at the end of her rope). I just hate having test after test and having all the cancer possibilities pointed out. Obviously, he has to do that, but I have a tendency to worry anyway and having lost three of my friends to cancer does not make me feel any better.
I asked him if he had other patients with joint pain and told him that this also comes and goes. He told me that he sees that with inflammatory bowel diseases but not with MC. Isn't MC an inflammatory bowel disease?! I just find all of this so frustrating. Sorry for the rant here, but I would not know what to do without all of you!!!!!

Love,
Patricia

mcardle3 · Post by **mcardle3** » Fri Sep 18, 2015 1:55 pm

No one knows your body like YOU do. I always say listen to your gut (and in our case this is especially apropos).

My dad died of autoimmune liver disease and every time I get right side pain just under my rib cage (which has to do with bowel issues in my case) I can't help but worry, so I understand about the fear you speak about.

I hope you find a good primary care physician (I figured that one out without going to the abbreviation page! Woot!) and get this all addressed.

Karen

crervin · Post by **crervin** » Fri Sep 18, 2015 6:37 pm

I get a breakout on my face that comes and goes. I always thought it was rosacea. Now I realize it's probably a histamine reaction with foods. Crazy that he is testing for cancer!

I did the breath test last October before I found this site and tested positive for the fructose. My GI said I have bacterial overgrowth in my small bowel in which they treated me with strong antibiotic. I actually felt better but later came down with horrible yeast infection. It took forever to get rid of it.

Hope all of your tests turn out well!

Post by **tex** » Fri Sep 18, 2015 9:15 pm

Patricia wrote:He said that SIBO still needed a lot more research. Diet was only treating the symptoms but not the cause. He said the same applied to MC. He said that Budesonide would treat the inflammation, while diet would only treat the symptoms of MC without treating the inflammation. Isn't diet preventing the inflammation from occurring/reoccuring?

Well, he's right about SIBO needing more research, but he's bass-ackward with his claims about the effects of treatment by diet and treatment by drugs. I wonder which drug company rep convinced him of that BS.

You are correct — he's dead wrong.

Patricia wrote:He told me that he sees that with inflammatory bowel diseases but not with MC. Isn't MC an inflammatory bowel disease?! I just find all of this so frustrating.

Yep. Again, you are correct and he's wrong. I agree that's mighty frustrating, because otherwise, he seems like a very good GI doc. But geez, he needs to brush up on some basic medical knowledge. He's supposed to be an expert.

Love,
Tex

JFR · Post by **JFR** » Sat Sep 19, 2015 4:30 am

Patricia,

One of the most important things that has happened for me is that I have been able to give up my assumption that conventional medical doctors would be able to help me in any way. That allowed me to pursue my own path without being either hampered by bad medical advice or annoyed when my doctor didn't get it. I seem to have a "good" doctor (not a GI doc) who listens to what I say about how excluding many foods is what has allowed me to regain my life, even writes it down, and doesn't question me. From conversations i have had with her in the past I get the sense that she finds it frustrating that so many of her patients are not helped by specialists who then send those patients back to her without having found any answers to their complaints. I gave up on GI docs a long time ago. Being responsible for one's own health, and being successful at it, is really rather liberating.

Jean

Patricia · Post by **Patricia** » Sat Sep 19, 2015 7:35 pm

Thank you so much! You guys are the best!!! :bigbighug:

Karen: I have that right side pain under my rib cage. It was terrible in the beginning, my ribs used to hurt so much. It has improved a ton. But whenever I react to something, it comes back. At least now, it is a temporary symptom.

Martha: thanks for letting me know about your test and treatment. I already have frequent yeast infections. They were bad in my teenage years, less in my twenties and thirties, and again a lot worse in my forties. I wonder whether that is due to hormonal changes.

Tex: thanks for confirming!!! My GI is a really nice doctor, taking a lot of time, and I will always be grateful to him that he diagnosed me at the very beginning of having symptoms. I just wish he'd be more up-to-date on MC....

Jean: You are right, I need to expect less from my doctors. It is just not a well-researched disease (yet?) and it makes it so much harder for the patients and the physicians.

I will keep you all posted!

Love,
Patricia

Gabes-Apg · Post by **Gabes-Apg** » Sat Sep 19, 2015 7:41 pm

Patricia
are you sure it wasnt a 'lactulose' breath test? (rather than a lactose breath test)
Lactulose is different to lactose and is one of the common SIBO testing protocols.

Every new doctor / practitioner that I see, it takes a bit of time and education for them to see that MC is not like other IBD's..
(and some dont want to see...)

Post by **tex** » Sat Sep 19, 2015 7:57 pm

Gabes wrote:(and some dont want to see...)

You said a mouthful there.

Tex

Patricia · Post by **Patricia** » Sat Sep 19, 2015 10:05 pm

Gabes,

My naturopathic physician had ordered the lactulose breath test in July when she tested for SIBO.

My GI this week ordered a lactose breath test (you have to drink 50 grams of lactose) and a fructose tolerance test (you have to do this on a separate day, at least 3 days after the lactose test, and drink 25 grams of fructose). For both the lactose and the fructose test they collect breath samples when fasting, 60 minutes, 90 minutes, 120 minutes, and 150 minutes after drinking the solution.

I cancelled the lactose test because I really don't see the point of it. I will never eat dairy again, so why should I find out if I am lactose intolerant or not. But I will go ahead with the fructose test.

The last time I saw my GI was in February. At that time, I gave him a copy of Tex's book (to educate him). He thanked me for it. But I kind of doubt he read it.....I also gave a copy to my naturopathic physician who immediately started reading it and spoke very highly of it.

Love,
Patricia

Patricia · Post by **Patricia** » Fri Oct 02, 2015 7:33 am

I wanted to give you a quick update....or maybe not so quick

I finally found out yesterday that the carcinoid blood tests came back fine. Phew!!! Big sigh of relief!!! If anybody's GI ever orders a chromogranin A and serotonin blood test because of a rash you have: they get sent out and take longer for the results than the usual blood tests (10 days for me). I don't know if my colonoscopy biopsies had been stained for mast cells. I kind of doubt it but I will ask my GI next time I see him. I believe the rash is connected to mast cells and histamine and I have not solved that piece yet.

I saw a new PCP last week at the University of Pittsburgh Medical Center. She's about an hour away from my house but she had been highly recommended to me by a Crohn's disease patient. She was very thorough and took an hour to get to know the entire medical history (all within the last 1.5 years, nothing noteworthy before that). As could be expected, she also ordered a battery of tests. She was adamant about testing vitamin D and I am grateful for that. With my previous PCP I had to insist to get it tested. It came back as slightly deficient (I have not seen the exact number yet but last year I was severely deficient). She ordered a prescription of 50'000 U once a week. I will have to check at the pharmacy but I suspect it's vitamin D2. If that's the case, I will continue with my own vitamin D3 and up it to 50'000 U a week (so far I have been taking 5000 U a day). She wants to retest it in three months and I am happy about that.

I did disagree with her on a few things. She wanted me to take a probiotic and one capsule of Metamucil a day and she recommended to get the flu shot. I said that I had an egg intolerance and her thought was that it would just be a short flare up after the shot but then I would be safe for the season and that I should give it some thought. Well, I gave it some thought, read on here, and came to the conclusion that if I truly have a mast cell issue there is NO WAY I am getting a flu shot risking a much bigger issue such as systemic mastocytosis.

She had also ordered some allergy blood tests. They showed mild allergy to peanuts (no surprise there if I am reacting so strongly to soy), moderate allergy to cats/dogs, and severe to trees. Well, there is no way I am giving up my sweet Golden Retriever. I never notice anything when I am around her. I do notice allergies, though, when I am in contact with cats (I don't have any cats myself). My hope is that the allergies will decrease as my body heals as Gabes described it!

Love,
Patricia

crervin · Post by **crervin** » Fri Oct 02, 2015 1:08 pm

So glad your tests came back good news!

Post by **tex** » Fri Oct 02, 2015 3:33 pm

Patricia,

Thanks for the reminder. I need to order a vitamin D test since we're going into fall, because I stopped taking it for a while during the summer.

Your UPMC doc sounds as though she's up to speed on vitamin D. Good for her.

I've noticed that now that the ragweed pollen is at exceptionally high levels around here, I sometimes have random itchy spots on my skin, though I don't see a rash. In years past, I had serious hay fever symptoms, but those have faded away in recent years, either by luck or due to the supplements I'm taking, so that this fall, I haven't had any of the classic hay fever symptoms, despite all the pollen around.

But apparently, I'm still having some sort of mast cell reaction to the pollen (in my skin), because the itching seems to wax and wane with pollen counts, and so does the liquid percentage of my ileostomy output (IOW this might be mast cell-associated D). If it becomes significant enough I may try taking an antihistamine.

Thanks for the update.

Love,
Tex

Patricia · Post by **Patricia** » Sat Oct 03, 2015 3:28 pm

Very interesting, Tex. So basically, when the pollen counts are the highest, the itching is the worst and the liquid percentage output of the ileostomy is the highest? So you are breathing in the pollen and reacting with skin and intestine but not with respiratory symptoms, right? Hmm...I still don't really understand the whole mast cell story. Is there anything else you can do aside from taking antihistamines?

Love,
Patricia

Post by **tex** » Sat Oct 03, 2015 3:56 pm

Patricia wrote:So basically, when the pollen counts are the highest, the itching is the worst and the liquid percentage output of the ileostomy is the highest? So you are breathing in the pollen and reacting with skin and intestine but not with respiratory symptoms, right?

That seems to be what's happening. When the pollen count is very high, I do have some respiratory symptoms, but they're not significant enough to be a problem. The bottom line seems to be that the most significant portion of my reactions have shifted from upper respiratory symptoms to skin and gut symptoms, allowing my respiratory symptoms to be mostly relieved.

I could try to avoid the pollen of course, but aside from that, the only practical remedy I'm aware of would be to take an antihistamine. But so far my symptoms haven't been bad enough to grab my attention.

Love,
Tex