Update from doctor's appointment today

[amberlink09]

Hi All,

I posted recently about my pillcam results and went to the gastroenterologist today for a second opinion on them and guess what? This gastroenterologist also said it was IBS, and that my original diagnosis of Celiac was wrong. He gave me a probiotic, VSL 3, and a prescription for Levsin and Lotronex. I have previous history of constipation an still have bouts of it from time to time, so I am too terrified to try out the lotronex even though the doctor said it would be fine.

I have an appointment with a rheumatologist next week for some other symptoms I've been having, but after that I guess my next step is just to find a good dietitian to get things on track.

[tex]

Wow! You apparently know more about the lotronex than your doctor. I would be more than a little apprehensive about it, too. For anyone reading this who is not familiar with lotronex, here's a quote from my book (pages 42–43). I added the red emphasis.

Medications that reduce motility
Medications in this category treat diarrhea by reducing the peristaltic pumping action of the intestines, thereby slowing down motility. Lotronex, (alosetron), is one of the drugs in this category, and it’s mostly used to treat IBS. Occasionally, though, it is prescribed to treat MC. For most patients, it tends to be a very powerful anti-motility agent — so effective that it has a rather rocky past, due to inappropriate use when it was first approved for sale. In the year 2000, it was pulled from the market only nine months after its fast-track approval by the FDA because of a number of fatalities associated with its use.8

Lotronex was labeled for the treatment of IBS, but doctors prescribed it not only for use by patients with diarrhea-predominant IBS but also for use by patients with constipation-predominant IBS. A number of those patients in the latter category developed ischemic colitis, obstruction, perforation, toxic megacolon, and other severe, and in some cases, life-threatening issues that sometimes required surgical intervention.

The drug was reintroduced in 2002 with new label requirements that stipulated that before a doctor could prescribe the drug, he or she was required to register with the manufacturer and receive special training designed to reduce the chances of the drug being prescribed to a patient who might be at risk of a life-threatening reaction. The new regulations also stipulate that Lotronex can only be prescribed for use by women with diarrhea-predominant IBS. These days, this drug is not commonly used to treat MC.

Here's reference 8 from that quote:

8. Willman, D. (2000, November 29). Drug Lotronex pulled over safety fears. Los Angeles Times. Retrieved from http://articles.latimes.com/2000/nov/29/news/mn-58793

FWIW, if your original diagnosis of celiac disease was based on positive serology to gluten and/or confirmed villus damage based on biopsy samples taken from the small intestine, that diagnosis cannot be revoked simply because you no longer show the markers of active celiac disease. If that's the case, your current GI doc doesn't understand celiac disease at all.

I hope that someone eventually figures out what's wrong, and can recommend a good treatment, but I would be very surprised if that someone is one of your current doctors.

Best of luck to you in your continued search for solutions.

Tex

[Gabes-Apg]

Sorry to hear that Amber.

Good luck finding the right practitioner that can help. It's worth the time and energy to find the right one.
After 7 years of various specialists, about 12 or more different general practitioners GP's (=PCP). the nutritionist helped me get the Dx of the root cause, and I have now found the right GP for ALL my health issues.

Hang in there....

[amberlink09]

Thanks for the replies! I am definitely not taking the Lotronex now! As for the celiac, the problem was that my serologies were positive but I didn't have villous damage- just inflammation in the duodenum and increased intraepithelial lymphocytes. The doctor at the time ruled this to be early stage Celiac, and I personally still think he is right because there are stages of damage in Celiac. Either way, I know how sick I get when I eat gluten. I did do a test a few years back when the doctor suggested it and ate gluten for a few weeks and it only led to even more stomach upset and chronic acid reflux which still hasn't gone away.

I am very much looking forward to my appointment with the dietitian, I really hope she can help! I've been looking around the forums and am hoping to do some more research into the low histamine diet this weekend, it sounds like something that could be causing a lot of issues for me. I'll also be happy to have some guidance in how to eliminate all of these foods!

[tex]

Amber,

Some doctors are beginning to diagnose celiac disease based on positive serology alone, but your GI doc is correct, based on the official medical description of the disease, celiac disease involves/requires at least a Marsh 3 level of small intestinal villus damage. IMO, that obsolete diagnostic requirement is the main reason why roughly 95 % of celiacs are never diagnosed, and why the average time from the onset of symptoms to an official diagnosis is still 9.7 years in this country. That's ridiculous. Why try to make celiac disease some kind of exclusive club that only the "elite", who can meet extremely rigid (yet completely arbitrary) criteria, can join? How is that helpful by denying treatment to 95 % of patients?

The key to a successful low-histamine diet is to minimize the amount of histamine ingested on a regular basis so that the total accumulated amount in the body at any given time does not exceed the threshold at which a reaction will be triggered. Everyone has their own threshold. It's impossible to avoid histamine completely because everything either contains it or promotes its production after ingestion. And the body has to have a certain level of histamine in order to properly manage certain routine functions, such as gastric acid production in the stomach. It's even possible for many people who have mast cell issues to eat a few high-histamine foods now and then, as long as they don't overdo it, but of course that's kind of risky business unless one is pretty sure of one's limits.

Many here have a lot more experience than I do regarding limiting histamine in their diet, so I'm hoping that they will share their expertise. Personally, I avoid over-ripe fruit (for example, bananas that are just ripe are not particularly high in histamine, but as they continue to ripen, that level climbs dramatically with each passing day), and I avoid all dried or fermented foods. I freeze leftovers and thaw them in a microwave when I'm ready to eat them. I can tolerate fresh-made chicken soup left in the refrigerator for at least 24 hours, for example, but if refrigerated much longer, I begin to notice symptoms, and they increase significantly as the days pass.

Best of luck with this, and please keep us posted.

Tex

[amberlink09]

Thanks Tex, now I see why all of my GI docs are so resistant to the diagnosis!y enterolab testing also told me I have the Celiac gene and some genes for gluten intolerance. Also, since a repeated endoscopy 1.5 years after my diagnosis showed my duodenum was healed, I would think this means I was doing something right? I also saw a doctor who was extremelu knowledgable and recommended for Celiac disease, so i dont think he would have misdiagnosed me. Maybe if I start eating gluten again like they suggest I'll finally do the damage to get the Marsh III damage.

Thank you for the info on low histamine! I had no idea about the leftovers, that is very interesting since I mainly survive in leftovers. I guess I will be getting some good experience on figuring out what type of food freezes and reheats well!

[tex]

Also, since a repeated endoscopy 1.5 years after my diagnosis showed my duodenum was healed, I would think this means I was doing something right?

Right! It means that you are actually doing the GF diet right. It's a fact that most celiac patients never totally avoid gluten in their diet (either because of lack of knowledge about labeling, carelessness, bad luck with cross-contamination, or even cheating), and as a result they never completely heal. GI docs are probably so used to seeing the damage on repeat colonoscopies that they begin to think that small intestinal damage should always be there in a celiac patient. That's obviously wrong. The purpose of the GF diet is to prevent small intestinal damage (completely), and that appears to be exactly what you have done.

Celiac disease is a lot like MC. It can only be diagnosed if the doctor especially looks for it, and does everything right. On the other hand, it's very easy for a doctor to miss it (fail to diagnose it), if they don't truly understand the disease. And once it is diagnosed, it's a lifetime diagnosis. The symptoms can certainly be controlled (including the laboratory markers), but the disease is always there, and it will become active anytime the treatment is discontinued.

Some doctors (not many) even consider someone who has a celiac gene to be a latent celiac, based on the premise that such patients are basically in the early stages of the disease, and eventual development is simply a matter of time and environmental influences.

Regarding refrigerating leftovers: the problem is that molds are the primary source of histamine in our food, and mold continues to grow at normal refrigeration temperatures. Yes, refrigeration slows it down, but invisible mold growth slowly continues at refrigeration temperatures. I would assume that the transition occurs gradually as temperatures are lowered further, but it's known that deep freeze temperatures of 0 degrees F (-18 degrees celsius) effectively halt mold growth, so that histamine content will not increase at deep freeze temperatures.

Tex