Since I already had a reaction to milk, I was fully expecting the same thing to happen this time. However, I was hoping that I wouldn't; after all, I love cheese. And the thought of doing without cheese is not particularly appealing.
So, I was ready. Still skeptical, I was determined to do all that I could to keep that leg from giving out when Dr. X pushed against it. The first thing tested: cheese (in the form of a mozzarella stick). After he first putting my body into alignment and testing the strength in my leg, I placed some cheese in my mouth, chewed it a little. Dr. X pushed.
Slam! My leg gave out again. Same with the yogurt. However, I was able to resist with the orange juice, no problem.
"Wasn't even close," Dr. X said.
So there it is: my body reacts negatively to milk. I am not lactose intolerant. My reaction, it is believed, comes from something else in the milk. Most likely a protein called "casein." Casein is actually used in many products. It is a common protein found in power bars, for example. It is also a binding agent used in glue and paint.
Of course, being a skeptic and also someone who relishes the process of research, I have done a lot of reading over the last few days on this issue. And it is fascinating.
First of all, let me just say, that my mom reminded me of something from when I was an infant: I had tremendously bad reactions to milk when I first entered this world. So, as per doctor's recommendations at the time, I was fed milk on a daily basis a drop at a time, gradually increasing the amount, until I could fully tolerate the milk. This is something that is often done for infants and children who have severe reactions to milk.
To me, things are coming together. One of the theories involving diseases with chronic inflammation is that the inflammation is the result of continual exposure to an environmental element and, as that element latches itself onto tissues, the body's immune system steps up and attacks the tissue that has absorbed the element---in this case, perhaps something from the milk, such as casein. One of the common symptoms of having an adverse reaction to casein is increased mucous production. This can occur anywhere around the digestive tract and in any mucous membrane. It could even manifest itself in chronic lung problems and sinus issues as well (all of which I have had issues with over the years).
It's just a theory. But its the closest thing I have had in the last 12 years to point to a cause.
But this brings up many more questions than answers: Why did this just start happening 12 years ago? Wouldn't I have had Crohn's symptoms earlier? What about other joint or inflammation pain--is that related to milk when that milk protein doesn't actually touch those tissues? If I had a milk protein reaction, why did I not experience it at a time in my life when I drank more milk?
When you have a disease like Crohn's, you are constantly looking for answers and solutions. Over the last 12 years, I have tried just about everything and supported almost every theory regarding the origins of Crohn's and its treatment. Last year, for example, I decided to try the Specific Carb Diet (SBC). In this diet, I removed all complex carbohydrates. This was based on a belief that harmful bacteria was the cause of Crohn's, so removing those carbs that fuel harmful bacteria in the gut could relieve symptoms. So I removed most wheat from my diet and white sugar. I starting eating a lot of nuts and....milk products. I almost doubled my intake of dairy, mostly in the form of yogurt.
After three weeks on the SBC diet, I was feeling worse and soon I was on prednisone again. And I have been on prednisone just about ever since (except for three months in summer of last year. Why was summer okay? I don't know. Less stress perhaps?). Currently, I am taking 20 mg a day, hoping to start tapering next week.
So this milk thing makes some sense to me.
And here's the weird thing: Crohn's bears a striking resemblance to Johne's disease. Johne's disease is a gastrointestinal disease mainly found in cows and other ruminant animals. The disease in cows is caused by a bacterium called Mycobacterium avium paratuberculosis. This bacterium can survive the pasteurization process and can be transfered to humans through the drinking of milk. Recent studies have suggested that most patients with Crohn's have the presence of this bacteria. However, there is no solid test available for this, other than removal of parts of the colon for analysis. And people try to avoid that invasive surgery at all costs.
Plus, there is not a concrete link between the bacterium and the symptoms of Crohn's. Just because its there, doesn't mean it is the cause of problems. We have lots of bacteria in our bodies, after all.
There is an organization called PARA (Paratuberculosis Awareness) that fully believes that this bacterium is the cause of Crohn's. They have a website at http://www.crohns.org. There they break down the evidence and support this idea that Crohn's is caused by Mycobacterium avium paratuberculosis.
There is an increasing amount of studies that suggest this link is a very real possibility. In Australia, they are developing an antibiotic treatment specifically for ParaTB to be used in Crohn's patients.
In the meantime, it looks like no more milk for me.
OK...you were on formula (the 3rd one the charmer)for about 9 months before we started to acclimate you to milk...not as a newborn.
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