Re: Re: complicated questions -- opinions?/D-Lactic

[Guest guest]

Hi Sally,

To answer your questions, we are stuck at the moment and have not added

anything that might help for fear it might make it worse. So at the moment we

are not doing any supplementation/enzymes/probiotic. The pancreatic tests take

forever to get back, so we don't have answers there.

My SCD son (6) has CVID or common variable immune deficiency (low IgG, Low

IgM), my SCD daughter (3) had low IgG and was a very symptomatic 1-2 YO, but

then developed normal levels and her health did improve considerably. My older

daughter (8 & not completely SCD/no GI problems) is low IgM (asymptomatic) as is

my husband (low IgM/asymptomatic -- unless it is an underlying factor of his

asthma). I will continue to get all 3 kids tested. I am wondering if they all

start as low IgG and grow into low IgM like my oldest child and my husband (some

hereditary pattern?). We will never know for sure as husband and oldest

daughter never had levels checked when they were younger. Low IgM with normal

IgG and IgA is very rare -- less than .03 of the population has this.

At any rate, they all have some level of immune deficiency which further

complicates the gut issue, as I was cautioned about the use of probiotics by

their GI doctor as it could cause lactobacilli sepsis. This is where the good

bacteria leak out thru the leaky gut, overgrow and potentially cause sepsis. I

polled the immune deficient community and found that at least one child had had

this happen and the mom (a nurse) said it was an underdiagnosed condition in

immune deficient patients. This makes the issue of probiotics and yogurt even

more complicated! If my son is overgrowing lactobacilli in his small

intestines, he certainly could have that occur elsewhere if the lactobacilli

leaves his leaky gut.

What is happening with my son is he is at a stand-still on SCD, and he will

now eat almost no protein willingly. His body seems to be quite able to turn

good carbs into bad carbs as long as he has enough of them and has limited

protein. I will not let him gorge on vegetables so he is eating very little of

anything for the past few days. If he eats a big serving of vegetables with

yogurt or probiotic, we get the hyperventilation. Sometimes the yogurt alone

will do it. By limiting his intake, we are not seeing the obvious D-LA

episodes, but we are having smaller scale episodes and diarrhea again I just

realized.

My daughter only has 2 symptoms that I can measure: bad poops and also wanting

nothing but fruit all day long. She is like a broken record asking for fruit

every 15 minutes! She has no neurological condition, so negotiation works for

her (eat a serving of protein and you can have a serving of fruit). She

actually had a white stool following several blond stools. The GI doctor

on-call told me to give her something I knew would cause diarrhea and see if

they turned brown (I gave her a large amount of fruit and she had brown runny

poop). GI said, no need to go to the ER, just follow up with regular GI doc

(who can't get us in until September). This child was born with her GI organs

herniated into her chest cavity and after the initial repair she developed a

re-herniation of her stomach into the chest cavity, perforation of her

espohagus, and a volvolus of her small intestine. Her stomach was upside down

and twisted/obstructed and the surgeon expected to have to remove

a large section of her stomach and bowel and he called it nothing short of a

miracle that everything was pink and healthy, so we actually came very close to

having a child with a short gut, but luckily did not have that outcome. She has

been waking at night and has a hoarse raspy voice so I am just now realizing she

has GERD, and it is possible that the fundoplication done to repair the

perforation has come undone (still need to get that checked out).

So that's where we are at. We haven't yet found a doctor brilliant enough to

put it all together and I have realized this is beyond what is normally

discussed here, so please do post anything you have found helpful here just in

case anybody else comes along with symptoms of D-LA, and then we can discuss it

more off-list. I'm hoping to learn of some test we may have missed that might

guide treatment better (don't know if any more exist). The case studies on D-LA

seem to illustrate lots of " trial and error " -- more than I am comfortable with

after all we have been thru!

Thanks,

newautismdiet wrote:

Hi ,

> Has anyone on this list had lactobacillus overgrowth and confirmed

D-Lactic Acidosis?

Hi this is a long post. I'm wondering if we should talk

privately or via the discussion group, because our cases are so

unique. We have a lot to talk about!! Please note

that " Newautismdiet@... " is not my private e-mail handle. If

you want my private e-mail handle I can send it to you if you wish.

Just send the request through the pecanbread discussion group.

Sorry it took me so long to respond to this post. Yes, I believe

that I have the above, although the docs weren't looking for it when

I was suffering through the worst of the symptoms. They thought that

I had " Guillain Barre Syndrome " and so they didn't test for the D-

Lactate. When I was hyperventilating due to feeling that I wasn't

getting enough air, the problem was attributed to " panic attacks. "

When I was hyperventilating and suffering from ataxia, systemic

weakness, and the profound feeling that I was on the verge of passing

out, I am certain I was suffering from acidosis of some form, most

likely the D-Lactate form. Given the fact that I have trouble

digesting carbs and have noticed correlations through the years

between the ingestion of certain foods (i.e. any non low carb foods),

followed by the onset of symptoms that bear a striking resemblance to

D-Lactic acidosis, I am quite certain the acidosis I was suffering

from was of the D-Lactate form. Currently, I am suspecting I have an

overgrowth of D-Lactic producing bacteria, since I am able to keep

the worse and most frightening symptoms of D-Lactate overload at bay

through diligent food restricting efforts. Coincidentally, I, like

your son, can tolerate very few foods from the carbohydrate family.

According to the abstract for " D-lactic Acidemia and Aciduria in

Pediatric and Adult Patients with Short Bowel Syndrome " the authors

conclude " that D-lactate is frequently present in serum of SB

patients even in: the absence of acidosis " , which might explain why

my serum anion gap indicator wasn't elevated, even though I have had

many blood draws throughout my life.

You were correct in an earlier post that you need to halt the

ingestion of D-Lactate producing bacterial strains. In people

suffering from our problem, most likely the ingestion of L.

Acidophilus and others D-Lactate producing strains will not act in

the role of a probiotic. Instead, their ingestion will likely

exacerbate symptoms of bacterial overgrowth since we tend to have a

low pH that fosters growth of the D-Lactate producing forms. I

noticed that you are feeding your son a yogurt/probiotic. Probiotic

therapy can be used to try to crowd out the D-Lactate microbes for

people who suffer from D-Lactate acidosis. What bacterial strains

are you using in your yogurt and/or probiotic?

I do not have short bowel syndrome, but I do have a complicated

health history. I definitely have Celiac Disease, and may also have

soy enteropathy in addition to multiple foods allergies and/or

intolerances. I was also infected with Campylobacter at one point in

my life. I have been on the SCD since March 2003. Don't get

discouraged about the length of the time I've been on the SCD. When

I first went on the SCD I thought I had IBS. A year later when I

tried to get off the SCD, I suffered through some serious setbacks,

then realized I had Celiac Disease. Later on still, I discovered

that I had serious problems with soy. And now, there has been the

recent discovery of D-Lactate bacterial overgrowth. So I haven't yet

been on an optimized form of the SCD, because, through the years,

I've been stumbling upon these diagnoses on my own with very little

help from the medical establishment. I would like to add that most

of my doctors have been concerned with my case, and were frustrated

that they weren't able to help me figure out the root cause of my

problems.

I notice that your son and daughter have pale stools. That topic was

address in this link from the The Gastroenterology and Liver Diseases

Forum. http://www.medhelp.org/forums/gastro/messages/36055.html

Interestingly, my gastro doc was suspecting that I have problems with

my pancreas, but we haven't yet conducted the tests. The floating

stools that you described in one of your posts are supposed to be

indicative of problems related to fat malabsorption. My stool tests

also showed that fat was present in my stools. Are your children

taking enzymes to combat the fat malabsorption? If so, which ones?

I have trouble with certain enzymes and enzyme preparations, and I

have to administer them in a very careful methodical fashion which I

can share with you. I can also share test results from my gastro doc

which may or may not have a bearing on your son's case.

I will be sending you the SCD foods that agree with me in another

post.

- Sally G.

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