Celiac disease

[Guest guest]

In a message dated 8/8/2003 1:19:10 PM Mountain Daylight Time, tami@... writes:

Hi everyone,

I tested negative for celiac disease. After reading up on it I was sure I had it.

Tami,

What tests did you have done?

Bob McGinnis

[Guest guest]

In a message dated 8/8/2003 1:28:17 PM Mountain Daylight Time, tami@... writes:

Bob,

They did a blood test. I believe my doctor called it a celiac syrum. Does that make sense?

Tami

Tami,

"Syrum" is spelled "serum" and essentially means the watery part of blood without the blood cells. So serology effectively means "blood tests" in this case.

The celiac serology panel includes 4 tests they are following:

1. Antigliadin IgG and IgA antibodies

2. Anti-endomysium IgA antibody

3. Anti-tissue transglutaminase IgA antibody

4. Total IgA measurement (as you see except for one all the other tests

are IgA based. Pts with selective IgA deficiency have a 30X higher

prevalence of CD than the non-IgA deficient population)

Bob

THE INFORMATION PROVIDED HERE REPRESENTS THE PERSONAL OPINIONS OF THE AUTHOR (WHO ALSO SUFFERS FROM THE DISEASE "ASPIRIN TRIAD" OR "SAMTER'S SYNDROME") AND IS NOT PROFESSIONAL MEDICAL ADVICE.

THERE IS NO DOCTOR-PATIENT RELATIONSHIP FORMED BETWEEN THE AUTHOR AND ANYONE READING THIS INFORMATION. AND THE AUTHOR ENCOURAGES INDIVIDUALS TO BECOME ACTIVE AND INFORMED ABOUT RISKS AND BENEFITS, AND TO WORK WITH THEIR OWN DOCTOR(S) ON TREATMENT STRATEGIES FOR THEIR OWN PERSONAL DISEASE.

[Guest guest]

Bob,

They did a blood test. I believe my doctor called it a celiac syrum. Does that make sense?

Tami

Re: celiac disease

In a message dated 8/8/2003 1:19:10 PM Mountain Daylight Time, tami@... writes:

Hi everyone,I tested negative for celiac disease. After reading up on it I was sure I had it. Tami,What tests did you have done?Bob McGinnis

[Guest guest]

hi Maurita. THank you so much for the name of the cookbook. I have heard of

it but was hesitant to do any more baking for I've bought everything under

the sun online and it's plum awful. I can't seem to find a white bread that

doesn't weigh 20lbs. Do you have any suggestions. My son is deveopementally

delayed with a ton of sensory issues, so anything out of the ordinary does not

work.. Thanks again, mom of ie, IGG def. dev. del. IBD, arthritis,

seizures,

[Guest guest]

Hi ,

My daughter has IgA deficiency and has allergic symptoms to

wheat. We have found a product called Tinkyada Rice Pasta Spirals (we get the

organic kind) that loves. It is a bit pricey but much better than the

soggy stuff that we have tried before.She loves pasta salad made with this

product. I have tried many non wheat bread recipes too and they come out like

bricks for some reason.

Muffins (with baking soda/baking powder) seem to work a little bit

better. I don't know if your son would be willing to try pasta, but may be

worth a

try.

--Martha

[Guest guest]

,

we deal with these issues with who is four. She was diagnosed

with eosinophilic gastroenteritis last year and has 'existed' on

neocate (via G-tube) for the last 10 months. She only tolerates rice

and chicken (sometimes)..when she is ill she eats nothing. We are

doing food trials when she is well but getting nowhere fast. Dealing

with the immediate and long term problems of a PID are bad enough

without having to deal with chronic GI issues as well....especially

when society tends to revolve around food!!!

Keep well

Mum to Jay (8), (4 PID, IVIG via port and EGE, Neocate via G-

tube and food trials!!) and Max (6weeks)

> My daughter has such a limited diet we cant even test her for

> Celiac.She can only eat a few fresh fruits and veggies and lives

on

> Neocate formula. We cannot find a bread either. She can eat rice

and

> corn so we have looked for rice bread,but like you said it is all

a

> thousand pounds and not to mention yucky! She cant have milk

products

> or eggs (which are protein) so it really limits what she can have

but

> she would love a piece of toast with honey!

>

>

>

> mom to sara and Casey both CVID and 5 months bringing up the

> rear

[Guest guest]

Dear Tami,

That is great you don't have celiac disease! It may be true that you are

allergic to iodine. I believe in that stuff too!

celiac disease

<< File: ATT00001.txt; charset = iso-8859-1 >> << File: ATT00002.htm; charset

= ISO-8859-1 >>

[Guest guest]

Thanks Martha. ie doesn't eat pasta at this time. I wish he would. We

keep trying. But I will remember that product for the future.

Jen mom of ie

[Guest guest]

I'm sorry for all that you are going through with the tube and all.

ie was recommended for a tube in January but we held off and he was able to

gain a lb. on prednisone which also helped the rectal bleeding. Does

have alot of dietary restrictions? or oral motor problems? ie Does but I

give him as many French fries in canola oil, and bananas, and he cheats with

bread but he loves peanut butter and jelly sandwiches. alternated with grilled

soy cheese sandwiches. Potato flyers by roberts and utz potato chips also add

calories and are all natural with no preservatives. I remember trying to give

ie neocate orally, yuk, no way. But I had to try something, His loose

bowels were making him lose weight too quickly. Good luck

Jen

[Guest guest]

From W.:

Harper, I actually have been tested for CD. One of the blood tests was positive. It was the antigliadin IgA. My GI/hep did some small bowel biopsies when he did an endoscopy two weeks ago. The results were normal. W

From Debby:

, if the labs were positive, then you more than likely have CD. The bx are always spotty, and often, the bx are inconclusive. Debby

From Harper:

I've heard that the surface of the small intestine is the size of a tennis court. Therefore, it's easy to miss damaged areas in a biopsy. You say one of your blood tests was positive for CD. I wasn't aware that one could have a positive IgA test and NOT have celiac disease. You might want to do some research on that.

Harper

[Guest guest]

Harper,

Actually, one of the members of one of my pancreatitis groups was the one that suggested I get tested for CD. She did a lot of research for me and it was kind of a mixed bag. There was some stuff that said that you can have a positive IgA from other autoimmune diseases or even just from liver disease.

I was tested for antigliadin IgA, antigliadin IgG, total IgA, tTG (tissue transglutaminase) and EMA (anti-endomysial antibody). Only the antigliadin IgA was positive. My antigliadin IgA was 57 with the reference range of anything greater than 50 being considered positive. I do think it's entirely possible that I have CD and maybe I am just sticking my head in the sand for the time being. However, from everything I've read, it is inconclusive as to whether someone with only a positive antigliadin IgA definitely has CD. More than one of the articles I read did say that re-testing for all the antibodies associated with CD every few years was certainly warranted in someone with a positive antigliadin IgA.

W

[Guest guest]

, I have been going back and reading past posts of you an when you

would have to go to ER but that your labs were OK. What I am going to share

may NOT bless you. Some months ago, I was having the exact same thing,

vomiting, extreme pain, nausea, the pain was horrible, cold sweats, etc. For

whatever reason, things stopped, quite suddenly, actually! For that I was

grateful. But later, they started up again and I was very frustrated. My GI

suggested that it was something I was eating that was contaminated. I assured

that I was “anal” about the gf diet.

Well, as time went on, and just re3cently, I have experienced the same

problems…but have not gone to ER. What happened, was that some of my

meds were contaminated with gluten when they had been filled. Actually, one of

the meds had gluten, so I stopped taking it and the pains stopped. Now,

without fail, at least so far, when I have those symptoms with severe reaction,

I know it is related to gluten.

My gut says that if you went on a strict gf diet….meds, food, get

rid of wooden spoons, etc., you will stop having to go to ER….it is important

to be totally gluten free and NOT cheat in the least. For me, I now KNOW when

I have accidentally ingested gluten.

Debby

Re: [ ]

Celiac Disease

Debby,

the thing is that only one of the

four blood tests they did came back positive. I've done a lot of research

and the verdict is still out as to whether only having the antigliadin IgA

positive is enough to confirm a diagnosis of CD. Maybe I'm just telling

myself what I want to hear because the thought of having to eliminate gluten

from diet seems overwhelming at this point. My GI wasn't even going to do

the biopsies, but then my internal med doc wanted him to do an endoscopy because

I have had so many problems with vomiting lately and he thought I might have a

stricture. The GI just decided to do the biopsies since he was in there

anyway. I may actually have CD and I may be stupid for not wanting to try

a gluten free diet, but right now I just don't have the energy to think about

having one more thing wrong with me! I know that may sound stupid, but

right now I feel so overwhelmed with all I have on my plate that I think the

thought of having to deal with one more thing might just send me over the edge

at this point! If my GI were to tell me that I do have CD, then I would

deal with it as I must but for now, I just cannot do it without him telling me

for sure that I do have it. Maybe in a few weeks, I'll be stronger and

can give the gluten free diet a trial run.

W

[Guest guest]

Debby,

You are right that what you are telling me is not totally a blessing. Maybe it's a mixed blessing. The truth is that I suppose I really have nothing to lose by trying a gluten free diet for a month. In a way, celiac disease makes sense. I've never fit the text book picture for almost any of my illnesses, why should I for celiac disease?

You have convinced me to at least seriously consider that most of my problems lead back to gluten in my diet. I am so totally clueless that I don't even know what a gluten free diet entails. I guess I'm going to have to do some research and figure out what I can eat.

How do you find out whether your medications have gluten? Can you tell me some good websites to start with?

I didn't really want to hear what you said, but that's mostly because in the back of my mind I've wondered whether you are right! Dang it! I do so hate it sometimes when other people are right! However, if giving up gluten could put an end to the pain, nausea, vomiting, and constant ER trips, it would be very well worth it! Geez, I've eaten nothing but clear liquids for the last 24 hours. I ate about a third of a grilled chicken sandwich after having the celiac plexus block done yesterday and barely made it home before I had horrible lower belly cramps and diarrhea. I am hungry right now, but I am afraid to eat.

Guess I'll have a look at some gluten free choices and see if I have anything in the house that I could eat.

Thanks for your persistance and info.

W

[Guest guest]

Can,

thanks for the prayers. You must be a very devoted aunt to try to learn about AIH to help your little niece.

She is in my prayers, as are all the members of our group.

[Guest guest]

For those of us that are unfamiliar with Celiac disease...t is a separate

condition and isn't listed as a condition specifically for the

Spondyloarthropathies. It is important when one has digestive and intestinal

problems that they

see a gastro doctor for proper DX so that the treatment is properly

administered. There are so many diseases that have very similar symptoms...like

Crohn's

Disease and IBD or even IBS and each are treated differently from each other.

Some members of the Kickas support group are convinced that a starch free diet

helps AS. It has not been proven that this works and many in the group have

tried it without success. A few years ago, I was on the starch free/sugar free

diet for several months trying to lose weight.....and felt that in the

beginning it might have helped my AS. It really didn't....as I had one of my

worse

flare up of IBD. Sometimes when we try new treatments, we attribute symptom free

times with the treatment....only to find out later it was just a lull in

symptoms. This is why many unconventional treatments seem to work. Arthritis,

IBD,

or IBS, in general, are some of the diseases that symptoms come and

go....symptoms more pronounced than other times...or we wake up one morning and

all

symptoms seem to be almost gone. That is why we really should stick with

treatments that have been well documented by many years of study. There are many

people on the Internet offering lab tests and cures that take advantage of this.

They offer remedies, special diets, special testings that are ineffective or

worthless and sometimes very expensive both to our finances and bodies.

We have been talking about mouth ulcers lately. A doctor really has to be the

one to Dx even this...as there are so many different reasons for

this....viral, fungus, vitamin and mineral deficiencies, anemia, medicine side

effect,

diabetes, intestinal problems, etc. Only a doctor can tell for sure and Rx the

right drug for treatment. It is one of the symptoms of RS, but it also can be a

symptom of many other problems and each problem should be treated with

different types drugs.

Click here: Celiac Disease -- familydoctor.org

[Guest guest]

Here's the link for celiac disease. I don't think it went through on the last

post?

http://familydoctor.org/236.xml

[Guest guest]

Dear Connie and all,

Although celiac disease is not caused by the spondy diseases, alot of us have

stomach problems. Celiac, however, can work the opposite way, and cause

symptoms that resemble RS and other conditions, excluding AS, of course. If you

test positive for Celiac antibodies, it is also possible to also have IBD and/or

IBS too.

There is certainly no cure for RS, but if diet helps and you have proven that

to yourself based upon trial and error...then why not? Doctors sometimes tell

you that diets don't work with serious illnesses, but I am living proof that

they do make a significant change in your condition (especially the stomach

stuff). I had non-stop diarrhea for months until I related this to celiac and

found out I was positive.

In addition to medical testing, I feel that everyone knows their own body

best, and what they respond to. I've had the medical testing, but I also know

that eating certain foods makes me sicker. I didn't need a doctor to tell me to

stop eating them, or to have officially diagnosed Celiac disease before I would

have changed my diet! The test speaks for itself, even though the more

definitive one was negative, which apparently is common in adults that are

actually

positive.

Good advice for anyone: There's always a reason when a test comes up

positive, or out of range, it should never be simply forgotten until your next

annual

exam. Don't wait for a doctor to suggest further testing, tell him you want it

checked further right away!

My mother died because of a lack of concern over a finding on a blood test

quite some time before she became gravely ill. I won't say what it was on here,

but it first presented as a vitamin level that showed up high on the reading,

and did so on another test 6 months later. It was still blown-off by the

doctor as nothing to worry about until after 1-1/2 years of the same, and her

getting sicker and sicker. By then it was too late, and the illness was

incurable.

Further testing would have identified the true cause, which was far more

serious than you can ever imagine.

While it's good to get official diagnoses from doctors, you also have to

research on your own and change your diet/lifestyle to what suits you and makes

you feel better. There's nothing to lose by trying to make yourself as healthy

as you can in our situations.

I would tell anyone with mouth sores to get tested for herpes, as it is one

of the most common causes and is simple to diagnose. Also, any

immunosuppressant can bring herpes out (and other lurking viral/bacterial

conditions as well),

even if you've never had symptoms before going on it. From there, you can

seek further testing if negative, or if the medication given doesn't work.

I'd also suggest that everyone get copies of their bloodwork (and any tests)

after completion each and every time, and take note of the levels that are out

of range. Then compare prior tests to newer tests, and look for patterns. You

can find all the meanings of the blood tests online,and even info on what

diseases they could be associated with, or get a book at the store. It's pretty

easy to do, and it's vital to be involved in your own health in this manner.

I always suspected I had other conditions in addition to reiters, and I

indeed did (i.e., the herpes and some degree of celiac disease). In fact, my RS

got

severe during some periods over the last year, and I knew something was very

wrong. BINGO!...I had developed anemia during that time period! I saw it

developing myself, before the doctor even noticed it, as I had copies of all my

tests and did comparisons. My regular doctor said it was of no concern when I

brought it up at first and even when I noticed a pattern. When I saw it kept

getting progressively worse, I insisted on seeing a hematologist and wouldn't

take

no for an answer. Boy, did he have a different view on this! He actually told

me that I would have needed a transfusion had I waited another month or so

longer and it could have had serious consequences.

I'd NEVER even bother with internet sites offering testing. If I want

something checked, I research it first, find the medical test required, and then

take

it to the doctor and tell him exactly why I want it done. If I'd never asked

for the Celiac test myself, it would never have been done and I'd still be

clueless as to why I had stomach problems and constant diarrhea. At least now, I

know why I cannot tolerate certain foods too well. Same goes for the herpes

causing the canker sores, it would have NEVER been tested had I not brought it

up myself and asked the doctor for the test. It turned out to be positive, and

I got on Valtrex immediately and had some relief after years of severe

suffering with several in my mouth at a time. It's nice to know there's indeed a

reason for my suffering when I eat certain foods. It doesn't take much to notice

a

pattern over a period of time.

Some may not agree with my opinion, but I really take a proactive stance on

medicine when it comes to diagnosing other conditions affecting my RS. I think

alot of people have other conditions that affect their illnesses, and by

finding out what they are, some relief can be found. Even if it's just a little,

such as relieving stomach problems, it makes a big difference in the quality of

life.

Sorry this is so long! I started out as a simple letter.....

Debra!

[Guest guest]

Grannyof9,

I agree with your perspective. Also, if I don't eat starches, my diarrhea

actually gets worse. I haven't seen the gastroenterologist in over a year.

I'm going to make an appointment. My colonoscopy was normal, but I think I

should have an endoscopy. I've never had that.

Regards,

Janet in SF

[Guest guest]

Debra,

I agree with your perspective too! My mom went through a similar thing of

not having cancer diagnosed when it should have been, which is why I'm

anxious and hypervigilant and proactive about medical testing. I will see

the gastro. doc as soon as I can. Maybe he will do these additional tests

for celiac.

I could try substituting rice for wheat for a while and see if it makes a

difference. I don't think rice has gluten does it?

God Bless. I really appreciate hearing everyone's perspective.

Janet in SF

ReA since 1973; diagnosed 1997; HLA-B27+

[Guest guest]

Natasha: Does she have celiac (which means she cannot tolerate gluten) disease?

There is a wealth of information becoming available now and there are cookbooks

available that will help you. I bought some on Amazon.com because I am wheat

intolerant and wanted to know about cooking with quinoa and amaranth. I have

found some wonderful recipes for cooking without wheat~pancakes, biscuits,

cakes, etc. I prefer quinoa flour over amaranth but will mix them. There are

now many pastas available in quinoa/corn or rice mixes. Check out your health

food stores. It takes a lot more time to cook things from scratch but you can

make large portions and freeze smaller ones to dethaw and reheat when needed.

This is what works for me. in La Selva Beach

e-mail me if you want more info schmidtmba@...

Re: Cause - what the CDC says -A QUESTION(S)

Hi Adrienne:

Thank you for responding to my question concerning the daughter of my friend.

If she were to take the digestive enzymes and perhaps some Charcoal for her very

acidic stomach would this interfere with a possible siliac (sp???). I know that

you can't make medical decisions (sp??) and diagnosises but I really don't know

that much about nutrients, etc. boy does my brain feel fried tonight-

Thank you,

Natasha

[Guest guest]

>

> Hi All

>

> I have been out of the RN for a while now, but I have been asked by

a friend

> if an individual with celiac disease can join the forces, does

anyone have

> the answer can you point me in the right direction

>

> Regards

>

>

Hello..

I hope this may help i am current serving medic in the RN we do have

ranks who have gluten free diets within the service...However your

mate may find it hard to go through the AFCO to get a answer as they

have no knowledge of this sought of thing but they should refer him

upto a suitable doctor who can give a yes or no..but as you are well

aware the military are loathe to take people with any ongoing medical

conditions..our OZ friends advice on a ( plan ) for lifestyle is a

good idea as this will stop alarm bells ringing straight off..i will

speak to my surg cmdr tommorow for you and try to get a correct by

the book answer for you as it will be in some obscure BR but at the

end of the day it may be down to a civvi doctor / consultant to

decide...will get back to you soon ..IAN

[Guest guest]

Both are autoimmune disease. I know its common for diabetes and celiac,

so I would think Thyroidism and celiac would be common too. I don't

know for sure though.

Missi

________________________________

From: hyperthyroidism

[mailto:hyperthyroidism ] On Behalf Of BanjoBoyd@...

Sent: Saturday, May 06, 2006 2:04 PM

hyperthyroidism

Subject: Celiac disease

Does anyone have any info about relation of Celiac disease to thyroid

disease?

Thanks

[Guest guest]

There are many articles out there with references to celiac disease being

linked to thyroid disease, there are a few links below but I'm sure you

could find more info with your own searches.

Carol

http://thyroid.about.com/cs/latestresearch/a/celiac.htm

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm

http://healthlink.mcw.edu/article/956622658.html

-- Celiac disease

Does anyone have any info about relation of Celiac disease to thyroid

disease?

Thanks

[Guest guest]

Thanks Carol for the great info.

Celiac disease

Does anyone have any info about relation of Celiac disease to thyroid

disease?

Thanks

[Guest guest]

Hmmm,

I was told it's common in kids with Diabetes- that's why amanda was checked.

Her endo recommended it. But we are seeing so many kids with DS who have

celiac.