I will never attend another bake sale August 7, 2012
Posted by mareserinitatis in personal, Uncategorized.Tags: celiacs, health, IBS
9 comments
It’s been an exciting couple of weeks for me.
I have had a lot of medical problems…well, most of my life. It got really bad when I went to college, however, and a year and a half after starting, I found out I had fibromyalgia. I was 19 at that point…the youngest FMS patient most of my doctors had ever seen. In an effort to get a hold of my health, I started a restricted carb diet about 3 years after my diagnosis. Low and behold, I went into remission…something else most doctors had never seen.
About 3 years after that, however, I started having GI issues. First doctor I went to said I was just constipated and needed to drink more water. Second doctor thought I had GERD and abdominal tendonitis. Third doctor told me to take beano when I ate. As time went on, however, the symptoms got worse, leaving some doctors scratching their heads. I’ve had tests and ultrasounds on my gall bladder about 4 times, at least 3 cat scans, a multitude of blood panels drawn, 3 or 4 trips to the ER, etc. The one that really pissed me off was the diagnosis of “anxiety producing IBS”. The problem with both IBS and fibromyalgia is that there are a lot of doctors who think that this is all in your head. Problem is, the meds make you feel stupid and careless but don’t do a thing for your GI symptoms.
So I was relieved when I was finally sent to a GI specialist in 2009, about 8 years after my GI symptoms had started. He did another blood draw and did a breath test, and I was diagnosed with small intestinal bacterial overgrowth. Like all my other diagnoses, I was better for about a month after beginning the new medication, in this case a super-duper expensive antibiotic. He also sent me to a pain clinic to load me up with cortizone shots. They helped…for a while.
After moving back to Fargo, I spent a year and a half trying to get into a GI specialist here. My regular doc was convinced I just had GERD. After an abnormal catscan resulted from an ER trip, I finally got in to see him.
This doctor, for a change, has been approaching my issues like a scientist. Rather than saying, “You’re symptoms are consistent with xxx diagnosis,” he’s actually been going in and *looking* to see what’s inside me. He’s trying to rule out everything he possibly can. While I admit I really haven’t been enjoying all the fun dietary gymnastics for these procedures, I finally have an answer.
I probably have celiacs disease. There’s a good chance this has been my problem all along, maybe even being the cause of my FMS. (This is apparently a pretty common misdiagnosis.)
The most frustrating part, however, is not that it’s taken this long to figure out what’s going on. I can understand when so many diseases present so many similar problems that it would be hard to tease out the root of the problem, especially when I didn’t start with GI symptoms. However, the first GI specialist I saw gave me the blood test for Celiacs, and it showed up negative. The information on the test specifically states, however:
A negative result (absence of circulating IgA-endomysial antibodies) does not exclude the diagnosis of dermatitis herpetiformis or celiac disease. Patients with mild gluten-sensitive enteropathy may have a negative result.
I am very disappointed that the first GI didn’t follow up further. Although this has probably been going on for half my life (or more), three less years of problems would’ve been nice. Also, this led me on years of a wild-goose chase to figure out exactly what the issue was. I always excluded wheat as a possible factor because I was told the test was negative, leading me to omit from my diet a lot of foods that I probably could and should have been eating.
In the meantime, I have one final test to confirm the diagnosis and then can start on a gluten-free diet. I honestly don’t anticipate this will be as huge a problem for me as some other people given I’d already spent years watching my carb intake and really enjoy eating veggies. (I just never thought to cut out gluten entirely.) However, I do like a treat now and again, so I’ll be on the hunt for some good gluten-free donut recipes…
The Open Placebo Study…and why I’m not sure I buy it. December 24, 2010
Posted by mareserinitatis in research.Tags: IBS, placebo
6 comments
I’m really bothered by this, so I have to say something. This is totally outside my field, but it’s something that I’ve learned a lot about through reading and my doctors, so I feel like I should address the huge red flags waving around.
There was a study done recently, showing how IBS patients who took pills clearly labeled as placebos showed improvement. The paper is available here.
Having fought with the IBS monster myself for over six years, there were two things that popped into my head.
The first issue is a pet peeve (and minor in comparison to the other problem). Although the researchers who published the article discussed IBS as a serious illness, how many doctors are going to read this study and think, “Oh, gee! I knew it was all in their head.” Honestly, having had to go through 5 doctors before finding one who didn’t think it was in my head (probably because he was a GI specialist), I can tell you it’s already hard to find doctors who don’t see IBS as an manifestation of mental health issues.
Second, and far more important in my mind, was the fact that they were giving sugar pills to IBS patients. Research on IBS has shown that up to half of IBS patients who have the problem actually have an intolerance to various types of saccharides (things we commonly refer to as sugar). In fact, one thing that sets off IBS in some individuals is an intolerance to fructose (referred to as fructose malabsorption. This results when someone eats too much fructose relative to the amount of glucose in their diet. If they were giving IBS patients sugar pills, these will generally contain starch or dextrose (which is glucose). One of the ways for some people to prevent the onset of IBS, if it is caused by fructose malabsorption, is to make sure that to balance an intake of fructose with an equal or greater amount of glucose. The body absorbs fructose in equal amounts with glucose, but in patients with FODMAPs sensitivities, fructose intake, in excess of glucose, is what often lead to IBS symptoms. (Other sensitivities can result from consuming lactose or galactose, but if I understand correctly, those are saccharides one simply has to avoid rather than balance with glucose for relief of symptoms.)
Patsy Catsos has done a lot to educate people on this issue in the US, but most of the research has been done in Australia. (This is one of the first papers I came across when learning about FODMAPS.)
My concern therefore is that the placebo pill may have actually been doing something to reduce symptoms through a physical mechanism in the digestive system. If the pills are made from glucose, and there was enough there to balance out an excess of fructose, then it’s possible that taking the pill did something other than stimulate the mind to heal: it really could have done something to aid patients with IBS caused by fructose malabsorption. It’s hard to say if this is true or not because I couldn’t find dosages for the sugar pills, don’t know exactly what was in them, and don’t know if the patients were taking these with meals or other factors that can affect the onset of IBS.
I know it seems surprising given the overall quantity of starch is probably fairly small. However, it’s not hard to imagine that if someone is taking a pill made primarily of glucose with a soda (which generally contains high fructose corn syrup, probably in a ratio of 55% fructose to 45% glucose, and would set off symptoms for someone with fructose malabsorption), the glucose in a sugar pill could potentially ease the symptoms.
Anyway, my contention is that the assumption that ‘sugar pills don’t do anything’ is false in the case of IBS patients because of recent work showing that saccharide sensitivity may be a cause. The results they saw in the study could, in fact, have been as a result of the pills and not simply the psychological boost gained from having a doctor who seems concerned about your condition. The real question, if this is a factor, is whether they can replicate the findings on placebos in people who have other types of illnesses which are less likely to be directly affected by sugar pills or whether they can give IBS patients some other type of pill (gelatin, perhaps?) that would be neutral in regard to potential saccharide sensitivity.
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