Re: Stomach ache question

[Guest guest]

Thank you Laurel for sharing that. I plan on going GF as soon as the dr's make their decision with Cassidy. I will support her by eating what she eats and in return, I'll see if I feel better too.

I really have to look into that genetic testing or find a dr. who cares how crappy I feel.

Oh, YES---my daughter was ALL negative for blood work, inconclusive forbiopsies and FINALLY one gene marker!!! We have had the bloodwork done acouple times--it STILL shows that Gabby is "normal"...non-celiac. We arefairly certain she is gluten intolerant because of some of her "directassult" REACTIONS---and then minor CC issues are NOTHING. We are keepingher gf and hoping that as she grows & matures we will be able tocommunicate better with her--to know if CC really IS a problem--just notshowing up as diarrhea/constipation/tummy ache. Being 3y 10m and fairlynon-verbal, it's really tough to know!But, yes, we've had neg. on 98% of our labs & the ped g.i. stillclassifies Gabby as celiac.(I'm enjoying summer but PRAYING for rain.....MAN do we need it!!!!)Laurel

KATIE B.Happy Summer

[Guest guest]

Yes. The proof is in the GF diet if you ask me.

I had symptoms for SO LONG. Took all the blood tests available

in 2000 and was negative on them all. By 2005 I was even MORE

sick. Took all the blood tests AGAIN (not the DNA tests), and

this time added the TTG. Finally, the TTG was positive. All

others still negative. And my TTG was only mildly elevated.

First doc said " ambiguous " . Second doc took biopsies and said

" Not celiac " . My primary doc's nurse practitioner said " Phooey.

Go GF any way and see if it helps. "

So I went GF. I felt WORLDS better very quickly.

In 3 months the TTG dropped to undetectable.

Undetectable is what TTG SHOULD be!!

Now primary care doc says, " OK, GF diet works and TTG went

to zero. You are celiac. "

Doesn't matter that the blood tests were ambiguous at best. Doesn't

matter that my biopsy is negative. The proof, for me, is in

the GF diet.

Mind you, I've been miserable for years and nothing else has ever

helped or shown a definite problem: donnatol, immodium, pepto

bismol, zantac, upper gi, lower gi, tests for bacteria, viruses,

parasites, gall bladder tests, ultrasounds, sigmoidoscopy, hormone

tests, high fiber, low fiber, no fiber, higher fat, lower fat,

no fat, more veggies, fewer veggies, more water.... And on and

on.

I've been trying to solve this diarrhea and pain

problem since at least 1983 to no avail. In 2005

someone finally said " go gluten free and see if it helps " .

That's 22 years of tests, meds, more tests, diet manipulation,

more meds, more diarrhea, more pain, more frustration,

more tests, more diet manipulation, more meds, more pain,

more diarrhea. (Not to mention the particularly aromatic wind.)

FINALLY, someone said " tests be damned. Try GF. " And so I did.

And wow! I haven't looked back. I don't wish a revisit of the

pain and diarrhea for anything. Not even Tim Horton's donuts or

Olive Garden.

As it is, I periodically get acute reminders from gluten so small

I don't even know where it is, let alone actually enjoy it while

I'm having it.

If you're sick and tired of being sick and tired, try GF.

If it works wonders, you don't need any additional tests.

If someone insists that you need " proof " , first question their

sanity and yours. If they and you are sane, and you are convinced

that you need " proof " , then go back to eating gluten.

In Alcoholics Anonymous they say " So, you think you're not

alcoholic? Fine. Go back to drinking. If you can handle it,

then you're not alcoholic. Enjoy. If you can't handle alcohol,

you know where to find us if you're still alive and at liberty.

If you can't handle it and end up in jail, they have AA in

jail. If you can't handle it and you end up with wet brain... well,

sorry. If you can't handle it and you end up dead... well, sorry. "

The celiac version is:

" So, you think you're not celiac? Fine. Go back to gluten. If

you can handle it, then you're not celiac. Fine. Enjoy. If you

can't handle it, you know where to find us. May you come back

while you still have healthy bones instead of osteoporosis. May

you come back before you have MALT lymphoma. May you come back

before your have total intestinal meltdown and die. But if you

go back to gluten and have NO problems? Good for you. Have a

Tim Horton's donut and some Olive Garden bread sticks for me. "

It's your life. Do you want to feel better? Or is pizza too

important to try to give it up for a few months to see if it

helps?

Only YOU can decide this for yourself.

Yes, I miss things. But I enjoy my pain-free belly FAR MORE!

Esther in Rhode Island

>

> Can that go just the opposite too? Have a neg. blood work but still

actually

> have it? I have SO many of the symptoms, more than my positive

daughter but

> my blood test came back neg.

>

>

> ... lots of people who have had positive blood work with

> > neg. biopsies. ...

>

> ME!! Waving hand wildly.

>

[Guest guest]

>

>

>

> Can that go just the opposite too? Have a neg. blood work but still

actually

> have it? I have SO many of the symptoms, more than my positive

daughter but

> my blood test came back neg.

> KATIE B.

> Happy Summer

>

Oh, YES---my daughter was ALL negative for blood work, inconclusive for

biopsies and FINALLY one gene marker!!! We have had the bloodwork done a

couple times--it STILL shows that Gabby is " normal " ...non-celiac. We are

fairly certain she is gluten intolerant because of some of her " direct

assult " REACTIONS---and then minor CC issues are NOTHING. We are keeping

her gf and hoping that as she grows & matures we will be able to

communicate better with her--to know if CC really IS a problem--just not

showing up as diarrhea/constipation/tummy ache. Being 3y 10m and fairly

non-verbal, it's really tough to know!

But, yes, we've had neg. on 98% of our labs & the ped g.i. still

classifies Gabby as celiac.

(I'm enjoying summer but PRAYING for rain.....MAN do we need it!!!!)

Laurel

[Guest guest]

I think it is possible to have negative blood-work and still be celiac. Especially if they ONLY run the ttg, EMA, and IgA. There are plenty of people who are only IgG positive, yet can still have + biopsies or are clearly gluten intolerant. I read somewhere that the ttg, EMA, and IgA results tend to correlate directly with the amount of intestinal damage. So slight or patchy damage might not give positive blood results; it does not mean that there isn't damage. Also be aware that some labs across the country have STOPPED running the IgG as part of their celiac panel - they are doing this because of the lower specificity of the IgG as opposed to the IgA or ttg. While this is a bit insane and will not help find all of the missing celiacs, it is what is being done currently and needs to be watched for. We found this out the hard way, while our kids were getting diagnosed, the lab stopped performing the IgG. So our follow-up celiac panel did not include the lab that they had elevated. Another 6 months, and we would have been missed again. Cheryl in MNrxp_us@...

[Guest guest]

I had negative blood test results TWICE, however, when they did the

intestonal biopsy my villi were completely flat and I have improved

significantly on the GF diet! You can be Celiac and have negative

blood tests. And the couple times I have got accidental gluten were

horrible!!! I am so sensitive now that it is all out of my system!

>

> I think it is possible to have negative blood-work and still be

> celiac. Especially if they ONLY run the ttg, EMA, and IgA. There

are

> plenty of people who are only IgG positive, yet can still have +

> biopsies or are clearly gluten intolerant. I read somewhere that

the

> ttg, EMA, and IgA results tend to correlate directly with the

amount

> of intestinal damage. So slight or patchy damage might not give

> positive blood results; it does not mean that there isn't damage.

> Also be aware that some labs across the country have STOPPED

running

> the IgG as part of their celiac panel - they are doing this

because

> of the lower specificity of the IgG as opposed to the IgA or ttg.

> While this is a bit insane and will not help find all of the

missing

> celiacs, it is what is being done currently and needs to be

watched

> for. We found this out the hard way, while our kids were getting

> diagnosed, the lab stopped performing the IgG. So our follow-up

> celiac panel did not include the lab that they had elevated.

Another

> 6 months, and we would have been missed again.

> Cheryl in MN

> rxp_us@...

>

[Guest guest]

I was telling my husband how many of you say you get much sicker after going gluten free then accidentally getting glutened and he said well if that's the case, we'll just never take Cassidy fully off of gluten so she doesn't have to worry. Men. No wonder I feel so alone right now, I can't even get my husband to read up and research this how can I expect anyone else too??

And the couple times I have got accidental gluten were horrible!!! I am so sensitive now that it is all out of my system!

KATIE B.Happy Summer

[Guest guest]

Well, he's a Financial Analyst, analyzing things is what he does for a living. She's not a number or a profit margin, she's his daughter and he darn well better get involved when we get a definite answer or God help him, he'll be living in the car. ( I still need his paycheck, lol)

Thank you Zanna for the info, I will be SURE he knows every stinking thing besides a stomachache that she will suffer if left untreated. She's only 5 and already broke her foot twice. Poor kid, I can not wait to get her on this diet.

My husband was not for this diet either until he found out that he is celiac too! He is all for it now.I was mis diagnosed and untreated my whole life. I developed polymyositis-an autoimmune, degenerative progressive muscle disease, primary biliary cirhosis-an autoimmune disease and not caused by drinking, osteoarthritis, osteoporosis, restrictive lung disease, hypertension, fibromyalgia, abnormal heart valve and more. These are all things that can happen when untreated. Please let him know all this.Our daughter broke 15 bones from the age of 6 to 13. If only we had known that this was what was causing her osteoporosis, we could have saved her so much pain. Not to mention the expense of hospital bills, lab, crutches, wheel chairs and walkers and scooter for myself, and more. We could probably own another house in the money lost over all my medical conditions.There is so much more to celiac than just the diet. Show him my email!Hugs,Zanna

KATIE B.Happy Summer

[Guest guest]

My husband was not for this diet either until he found out that he is celiac

too! He is all for it now.

I was mis diagnosed and untreated my whole life. I developed polymyositis-an

autoimmune, degenerative progressive muscle disease, primary biliary cirhosis-an

autoimmune disease and not caused by drinking, osteoarthritis, osteoporosis,

restrictive lung disease, hypertension, fibromyalgia, abnormal heart valve and

more. These are all things that can happen when untreated. Please let him know

all this.

Our daughter broke 15 bones from the age of 6 to 13. If only we had known that

this was what was causing her osteoporosis, we could have saved her so much

pain. Not to mention the expense of hospital bills, lab, crutches, wheel chairs

and walkers and scooter for myself, and more. We could probably own another

house in the money lost over all my medical conditions.

There is so much more to celiac than just the diet. Show him my email!

Hugs,

Zanna

http://groups.yahoo.com/group/Art_on_A_Budget/

My daily rantings!

www.zannasstory.blogspot.com

My picture trail:

www.picturetrail.com/xanadoodles

[Guest guest]

Whether he was or wasn't the fact remains that he needs to do a heck of a lot of research and fast. It's not fair to dump the whole thing on me to learn and the sooner he starts the better. Preferably before he's sleeping in the car. lol

I hope your husband was just joking when he said youshould continue to give your daughter gluten. That isNOT the treatment for deliac disease.

KATIE B.Happy Summer

[Guest guest]

-

I have the same experience. My reactions are more

severe now than before I went off gluten. If that is

possible. Someone explained it to me this way: Your

T cells attack the gluten as if it is a foreign

protein in your body, because they are not used to

dealing with it any more.

I hope your husband was just joking when he said you

should continue to give your daughter gluten. That is

NOT the treatment for deliac disease.

Best to you all, Barbara in SoCal

__________________________________________________

[Guest guest]

Wow. I guess he doesn't " get it " that if she's celiac and continues

eating gluten in even the tiniest amounts then:

- she will never feel " well "

- she will do more and more damage to her intestines

- her risk of stomach cancer (particularly lymphoma) goes sky high

- she will have all kinds of other malabsorption issues such as

vitamin deficiency, osteoporosis, etc.

Personally? I think that if you KNOW that a child has celiac and

you continue feeding that child gluten deliberately then it could

be cause for being arrested for child abuse. Harsh words. Harsh

reality.

The sickness that comes with an accidental glutening is an

inescapable fact of life. There are so many variables far out of

our control. I think it would be truly miraculous for someone to

be 100% gluten-free 100% of the time forever. Miraculous. We can

aim for 100% gluten-free 100% of the time forever. And aim we

should.

The other extreme is to continue to eat gluten all the time. The

logic behind " I'm going to be sick anyway from accidental

glutenings, might as well eat gluten all the time " escapes me.

Talk about illogical defeatism.

Talk about deliberately feeding someone poison.

I avoid arsenic and botulism. If I ingest arsenic or botulism, I

get very sick. Could even die. Would certainly prefer to avoid them.

Does the fact that I would get sick from accidental ingestion of

arsenic or botulism mean that I should ingest them deliberately

" just in case " ? Of course not! To feed a child arsenic or

botulism " just in case " would be criminal. The logic doesn't stand

up.

I see he doesn't equate gluten with arsenic and botulism. But

he should.

Once he realizes that gluten is as much of a poison to celiacs

as arsenic and botulism are to every one, he'll wake up.

It's a matter of getting him to UNDERSTAND, deep in his core, that

there are REAL DANGERS associated with continued gluten ingestion.

Real bonafide honest-to-Heaven dangers.

Osteoporosis. Thyroid trouble. Lymphoma. Intestinal meltdown.

Insanity.

Get the 2nd season of House on DVD and make him watch the celiac

episode. The dangers portrayed in that episode are not too far

fetched.

Once you start being unable to properly digest your food, all sorts

of havoc happens in your body. Bone destruction is just one. Total

insanity is another possibility.

Esther

>

> ...you get much sicker after going

> gluten free then accidentally getting glutened and he said

> well if that's

> the case, we'll just never take Cassidy fully off of gluten

> so she doesn't

> have to worry. ...