hey Jen, I mostly wanted to say hi and I am so sorry your daughter had to go through all of that as a baby and sorry that you have that worry. when I was at my sickest I was so glad it was me and not my kids or husband.
I wanted to mention a thought that always rattles around my head. I understand that CD is a chronic disease, yet I have met and talked to folks who have one flare, are treated, and it never comes back. I might be one of those, so far. the trouble is, we don't hear from those people here, they go on with their healthy lives. of course you don't want to gamble with your baby, but I am sure it feels like a gamble either way...fear of illness or life-long meds is scary either way.
I had absolute positive CD, did about a year of meds, and have never had inflammation since. I have chosen to go off gluten and that has improved my quality of life immensely, but I am still in the dark as to where the CD went and if I had it in the first place.
take care, yp
Hi Jen R,
The hardest part, often, is making the decision, especially when it comes to your own child. For me, the implementation of the decision is far easier. Have pediatric therapeutic levels of 6mp been established?
Btw, it's not that easy to conduct a clinical trial of SCD. The main problem is the difficulty of ensuring that a patient is in compliance. We can't lock patients up for months to ensure compliance. We can't follow them around all day to ensure they eat only what is allowed. Even if we assume patients tell the truth, they could mistakenly eat something they shouldn't. Meds are easier...we can ask the patient to come into the trial center to receive the med, thus ensuring compliance. So that leaves us with anecdotal evidence, of which there is plenty. The CCFA web site offers the following opinion on SCD:
"Often, patients have questions regarding The Specific Carbohydrate Diet ™ (SCD), popularized by Elaine Gottschall, M.S., author of Breaking the Vicious Cycle. At this time, the SCD is supported only by patient testimonials, not by systematic studies. With diseases like ulcerative colitis and Crohn's disease, the only way to see if any treatment has widespread value is by appropriate, rigorous testing.The diet itself is not particularly unbalanced, but many patients find it particularly onerous to maintain. Decreasing poorly digestible carbohydrates may decrease symptoms of gas, bloat, cramps, and diarrhea in patients with IBD, but that is not the same thing as decreasing the inflammation, or affecting the disease process. Unlike the gluten-free diet for celiac sprue, which has a well-researched basis, and well-demonstrated track record for affecting the underlying mechanisms at work in the disease process, the SCD does not. Bottom line: it may be worth a try (there are plenty of other diets being touted in the marketplace), but do not abandon your conventional treatment, and keep in touch with your doctor."