Son just found out he has cd

Sorry to hear about your son. I'm one of the resident low-carb whackos, and would be happy to spout all sorts of ideas in your general direction given the slightest provocation.

"Probiotics" used to mean just live organisms- freeze-dried or similarly prepared critters that supposedly help the gut. It has come to mean many more things with the advent of "nutraceuticals" and so forth, but I prefer to use the term only with live organisms. Better still is yogurt- but the types of organisms used to make that yogurt are important, as is the manner in which it is prepared.

First step: read Elaine Gottschall's "Breaking the Vicious Cycle," or Google for the title (there's a website) or "Pecanbread," which is directed towards children.

Second step: get familiar with making yogurt. If you have "Trader Joe's" or "Whole Foods" nearby, you can get Fage yogurt, which is an excellent starter culture.

Be forewarned that Gottschall explicitly states to avoid L. bifidus for making yogurt. More recently, the entire genus Bifidobacterium has been used in increasing numbers of probiotics, including VSL#3. Recent research has shown that bifidobacteria may put off the same enzyme (pullulanase) that is produced by Klebsiella pneumoniae, which has been implicated by the Ebringer group in the UK as causing Crohn's. Whether "Klebsiella Crohn's" (there is no such thing) is the same as "Accutane Crohn's" (there is no such thing)- I don't know. I do know that VSL#3 caused me a lot of pain and blood when I was doing very, very well on Gottschall so I still have a nearly full box of the stuff if anyone wants it! Some others swear by it, and say it does them a lot of good.

Of the supplements known to work:

Fish oil (recommended by many- I take it when I remember)
Pantothenic acid (recommended by some- I take it, 900 mg/day in evenly divided doses)
Vitamin D (recommended by some- I take it, I forget how much)

With Crohn's comes damage to the gut, which leads to impaired nutrient uptake. This can lead to a variety of blood disorders, including those caused by insufficient B12, folate, etc. Check with your doctor.

Be wary of iron supplementation. Dietary iron is MUCH better than supplements.

labguy said...
Is there a specific type, brand or dose that anyone's had success with. ..or does probiotic refer to a general supplement...eg folic acid,etc...?

For some reason in my previous post the last paragraph was extra-tiny font. Probiotic is the general name of the supplement and there are hundreds of brands to choose from. My son uses Theralac which you can google and read all about. I've also purchased other brands like Udo's, Dr. Michael Murphy's, VSL#3, Solaray, they go on and on.

Although this site is pushing a specific brand of probiotics which I know nothing about, I like some of the information and explanations presented here about what probiotics are. You might enjoy reading it! Sorry, I don't know how to link it, so simply cut and paste into your browser:

http://www.gonando.com/probiotics.html

Most things you read say to find a probiotic with at least 15 billion cfu and multiple strains. You may find, as Osprey said, that a probiotic with bifidobacteria may not be a good choice, though the one we use has bifidobacterium lactis and bifidobacterium bifidum and it has been fine (I'm assuming they're the same family...). A probiotic with Lactobacillus acidophilus as the main strain is a good starting place. In any case, you may need to experiment with brands of probiotics a bit to see what works best for your son.

I'm truly grateful for your help. So is my son. He was away on business this week, but I told him of the forum. He'll be signing up soon I'm sure. To answer Shann....He is on lialda. (See original post) which is the anti-inflammatory. Please continue to pass along to me any questions or suggestions that you wish. I'll try to figure out this font size thing too.

sorry labguy. i must have missed that.
and ive never heard of that anti-inflamitory.
ill have to look it up.

Good to hear your endorsement..??of Lialda Osprey. No problem Shann..He's looking into the CSD...or is it SCD diet, and has ordered the book "Breaking the Vicious Cycle" I'm glad this forum is here. Drobert

Interesting. I don't presume to have any answers...and I'm not a conspiracy theorist....but I can remember ...oh I think maybe 8 years ago (?) when there was a remarkable discovery that most bleeding ulcers aka stomach ulcers were caused by a bacteria. ( I remember Zantac went over the counter overnight). This went undiscovered by those in the medical community for ..for...for ever. I'm hoping and praying this SCD works. Thank you guys for the info and for your support. I'm still surprised that the GI doctor never even whispered SCD. Thank you

That is correct; a good number of stomach ulcers are caused by Helicobacter pylori, which ended up winning the discoverers the Nobel prize. They were originally roundly ridiculed for their beliefs.

http://nobelprize.org/nobel_prizes/medicine/laureates/2005/press.html

Interestingly, Lutz has noted that heartburn is frequently quickly cured by taking the carbohydrates out of the diet- and if it comes back, it's usually because the dieter has allowed the carbs to slip back in. Exactly why this causes heartburn is a good question; some have suggested all that sugar has a strong osmotic effect on the stomach, causing an increase in acid production. This may have substantial relevance to the modern prevalence of stomach ulcers; too much sugar = too much acid = good environment for H. pylori to thrive.

Was it C. diff (Clostridium difficile)?

Clostridia are common to the human digestive tract, and C. diff may be commensual (living there "naturally") in some people (single-digit percentages). They tend to be highly antibiotic resistant, and infections common recur.

C. diff is one of those bacteria that can really cause a lot of problems; but, really- in an acute phase of disease, how does Crohn's differ from other GI illness? Pain, discomfort, D, pain, blood, more D, more pain and discomfort, ow, etc.

Another one that is strikingly similar is Whipple's disease. WD is so rare that maybe there are a thousand cases in medical history. Eventually most get figured out, the patient gets put on antibiotics, and they get better- eventually. The organism that causes it is Tropheryma whipplei, and it presents with:

Weight loss, diarrhea, joint pain, and arthritis, as well as malabsorption. (So sayeth Wikipedia, anyway.) Collectively:

* Arthritis up to 75% or arthralgia. Usually oligo- or polyarticular, symmetric, transient and can be chronic.
* Malabsorption
* Intestinal lipodystrophy (accumulation of fatty deposits in lymph nodes of the intestine)
* Lymphadenopathy
* Abdominal pain
* Diarrhea
* Fever
* Melanoderma
* Neurological symptoms
o Cognitive changes
o Nystagmus
o Oculomasticatory myorhythmia (OMM) (pendular vergence oscillations of the eyes and synchronous contractions of the masticatory but not palatal muscles) is pathognomonic of Whipple disease[6]

Now, it's not a complete overlap with Crohn's, but isn't that interesting? What if some of the symptoms we see from CD are caused by the organism that causes WD? Something like 15% of people have T. whipplei in their system, with no apparent disease. So it wouldn't be out of the question.