Faith in SCD Our duaghter and expensive tests and interventions

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The Healing Crow community discusses non-drug related approaches to healing

chronic illnesses. Specific topics include: The Spe

Hi guys,

We have been eating SCDiet with out any success for over seven months now. Some

GI specialist say we have celiac disease others say we don't. They look at our

biopsy reports (mom and dad's) and argue over it! Our celiac blood work was

negative. I think that they are all confused. So at this time we don't know

what is truly wrong with our family. Yet clearly have had success with SCD.

Our kids do not have confirmed diagnosis and because of this we can not get SSI

or Medicaid for our daughter to help pay for her therapies. (OT, Speech and

physical) WE thought we would try again to get confirmation. What a joke this

has turned out to be.

We have had much improvement in seven months. But still have concerns about our

two year old daughter who clearly still shows signs of malabsorption and low

weight. WE thought by now this would be gone. Are we not giving SCD enough

time????????

She is suffering from neurological consequences that appear to be autism

related. SCD alone has taken away her deliriums, night terrors and seizures so

far. She now is smiling, playing with imagination, laughing and trying to talk.

So I know that we must be on the right road.

She has yet to be confirmed or diagnosed with anything. The doctors refuse to

look at her intestines. We have been to everyone in our state so far. All say

no. We have two doctors who are willing to help us. But I fear their

credibility. I don't know who to trust any more.

I also do not know if it is just time that we need. How much do I trust Elaine

and Dr. Haas? I expected a full turn around by now. Am I the fool????The

doctors sure are not trusting this book! It is hard to be in an office with

them and hear their DOUBT and not have some of it wear off on to me.

We are going to be trying the enzymes again. We did not have success in the

beginning using them because of her intestinal damage being to severe to

tolerate the protease. We have bought Kirman's. They will be arriving

Wednesday. WE are going to add them slowly and at low dosage to start with. I

have spoken to others but want more advice on how to use them. AS many know she

ended up with a crises last time we tried Enzymedica. WE need to do something

to get her absorbing her nutrients better. She clearly still looks like she is

suffering from malnutrition still. She is gaining better than she ever has

.....but still too thin and pale. So what do we do? Sorry if I sound like a Yo

Yo! I feel like a Yo Yo.

The doctors have countless tests that they want to run on her. I know that

Elaine did not approve of all of them. Our funds are limited. WE can hardly

afford to eat this way. For five eating this way we are paying close to 1200.00

a month!!!!. This does not include the cost of supplements and vitamins. We

are a one income family since our kids and my self are healing from catastrophe

and I can not work yet.

Here is the lists of test that they want to do (thousands of dollars!). Can I

have opinion to which ones are priority if any of them? They " can not help us "

if we do not do there tests.

a.. CDSA

b.. OAT

c.. HAIR METALS

d.. Pre and Post Urine metals with DMPS challenge (I which I do not feel her

gut is ready for and am fearful of!)

e.. Entero Labs DQ genetic testing

f.. Antibody results for gliadin, tTG, soy, egg, casein, and yeast (we have

been paleo since spring of 05)

g.. IgG food antibody tests from US BIO Tek or Optimum Health Labs

Blood work insurance pays for. They have ordered: CBC and CMP WE have

already ran this test....but it has never showed much in the past.

The one doctor is talking about cross reactions to environmental allergies with

food. I feel overwhelmed. If we take out any more foods what will we eat?

IgE, IgG and IgA testing in the past was not helpful. We have never ran the

expensive food intolerance tests though. By using diary alone we know that

beans and peanuts and cow yogurt is clearly out. We thought we could do the cow

but can't. Back to the goat. Yet have concerns over the cheese. Carol, how

did you know to use goat and cheese????? We also do not eat the peanuts or

beans. They cause set backs in all of us.

We truly do not know what to do. We are not wealthy. WE are lucky to keep the

house and pay for groceries alone....

FAITH in SCD is not easy, when you see her still have problems. Elaine said

years...some days I feel like we don't have years. Yet do these doctor even

hold the magic wand????? I hold on to the success that we are having and some

days and do fine....we have literally seen so many improvements we would be a

fool not to give Elaine credit.

But then when she has set backs or I look at her remaining problems I become

scared. The medical community has been so confusing to us...if leaving the

country would help we would. But I don't think it would....HELP I am panicking

again.

Thanks for suggestions, for KIKI- 29 months old, 23.5 pounds and 36 inches tall

(very thin) (possible Celiac, colitis,...ASD) WE want her perfectly normal...is

this asking for to much? Did any child heal completely eating this way?

Whew....now that was a lot to get of my chest. Anyone please give suggestions

and try not to confuse me more than I already am. Feel free to contact me off

serve if you need to go Off topic. ajbunce@...

Sincerely, Antoinette, and family of five (fanatical SCD since 2/06)

celiac, colitis, ibs, add, adhd, asd, and more)