Re: Celiac testing question

[Guest guest]

Hi ,

My situation was similar in that I had already started the diet and my

Crohn's/Colitis pain symptoms diminished significantly after 2 months

(pain reduced drastically like %80 for the first time in 10 years and

I didn't have to take pain killers when it got really intense.)

I ended up going to the Hoffman Institute here in New York City as I

needed and still need a Doctor that supports me on this SCD journey

since I have so many other health problems! It is good for me to have

an understanding with my Dr. Anyway, in my first appointment Dr.

Kroner was THRILLED I had already started SCD but she also wanted me

to do a gluten sensitivity test (as biopsy from colonoscopy was

negative for gluten allergy- Celiac's) she explained to me that there

is what is commonly known as a " gluten allergy " but, also what isn't

as common and usually not tested is a " gluten sensitivity " which is a

blood test. She explained something like (and I might have the

numbers wrong or mixed up) 1 in every 10 people is gluten sensitive

and out of those 10 people 1 in every 11 people is Celiac.

She continued to explain since I was off Gluten a few months (I was

SCD longer but I had done the intro all wrong so I had to redo it so I

don't consider that even as SCD time) Anyway, she told to me that in

order for my blood test to be accurate (as far as testing goes- and I

have read different literature on that, which makes me even happier

with my decision) I need to be eating gluten at the time of the test.

Dr. Hoffman and staff believe there is no reason to put a patient

through that kind of suffering if I responded so well! She also told

me if I eat gluten again I might get really sick and undo all the hard

work and it might take even longer to get back to the point that I was

feeling right then and there!! She said " it's not worth it, it's just

a test, what's important is you're feeling better. " She told me that

my mom could be tested for the sensitivity too and MAYBE that way we

can know about me but by that time my mom was on SCD 3 weeks to treat

her chronic constipation. Also, mom started to feel better until 2

months into it she felt fantastic and started to eat gluten free bread

with-in 3 weeks she felt bad again. She went back on SCD and it took

her a month to feel better.

Anyway, as I said I am happy with my decision. This specific test can

sometimes have false negatives anyway. So what is the point?

Obviously, it's different in the sense you would be looking for an

allergy, I am unsure about the results and literature fr that. But,

still if the baby is starting to thrive why undo all of that hard work?

Hope that helps!

Jodi

scd 5 months

Crohn's/Colitis diagnosed 10 sick for 17 yrs.

[Guest guest]

,

Yes, you would need to feed your son wheat and other illegals before you

could test for celiac.

My niece follows SCD. (I introduced her to it, with a copy of BTVC and

Lucy's cook book at her wedding in 2002. <g> Along with some other

gifts.) She was having severe problems with in-laws who thought she was

just doing her special diet to get attention. She decided, that as she

has other auto-immune issues -- thyroid, and vitilago -- and since

auto-immune issues often travel in packs, that she would be

tested.

So, she broke her SCD. Doctor said she had to be eating wheat, etc., not

just once, but for 2-3 weeks before the test. The first day, she said,

was great. She chowed down on all her favorite foods that she had to give

up when she went SCD. The following morning, she woke up feeling as if

someone had beaten her with an ugly stick. Massive flu symptoms that just

wouldn't quit -- and she had them the entire time she was eating

illegals. She was so glad when the doc took the blood and she could

return to SCD. Says she'll never leave it again. It also took quite

awhile for her to fully recover from her illegal-induced " flu "

because she again went through massive die-off.

I admit that I didn't pay attention to the specific results -- positive

on 3 of 4 markers? -- only that yes, she is, in fact, celiac. (And her

maternal great-grandmother died of complications from

diverticulitis.)

About the only thing it has done is given her medical tests to wave at

her in-laws. It hasn't changed a thing about how she is getting on with

her life -- or the fact that she intends to stay SCD for life.

Well, aside from the fact that she spent 4-6 weeks feeling utterly,

totally miserable.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Hi ,

I agree with the others in not giving him wheat just for the sake of

testing. If he does have Celiac then he is being treated for it while

on the SCDiet. So, there's no reason to be scared of him having it. If

at some point you decide to try re-introducing wheat, then that would

be a better time to do the testing.

Also, there are different testing options. Both a blood test and

biopsy during endoscopy require eating wheat beforehand. However there

is genetic testing which can be done that does not require him having

any wheat. If your doctor is pushing for him to be tested, that would

be the one to do first in my opinion. You could ask him about that.

I went through this with myself. I went off all gluten and felt much

better. Then I started worrying that I had Celiac. Well, I didn't get

any tests done because my doctor basically said, listen to your body,

if the diet helps, stick with it. No need to get tests done to tell

you what to eat. Also in terms of getting medical insurance in the

future, it helps not to have actual diagnoses on your record.

Glad SCD is working so well for your son!

Kat

IBS

SCD since 01/23/2008

http://scdkatfood.blogspot.com/