Re: Getting the drs. to believe that there is something wrong

[Guest guest]

Whether you get a biopsy confirmed diagnosis of villi damage and,

thus, celiac disease, or not, being gluten intolerant means you need

to follow a strict gluten free diet for the rest of your life. Having

done the enterolab test, you know the stuff is poison to you. Still,

everyone reacts differently to gluten. You may have extreme gastro

pains, migraines, bone and muscles aches, etc. but for some reason

you could be less sensitive to having villi damage (this can change

at any point, btw, and the next thing you know you're in the

hospital.) Would you subject yourself to the misery of all these

other reactions just because some doctor hasn't given you an official

CD label?

I congratulate you for being proactive and getting the testing done

yourself!

PS. Remember the old joke when you get frustrated about doctors not

seeming to " get it. " Q: What do you call the person who graduates

last in his class in med school? A: Doctor.

> I also don't know, officially, if I have CD but, either way, I need

to follow the diet.

> Jeanne

[Guest guest]

Have the rest of you been able to find a good dr.

> who understands CD?

Jeanne-

I've had intersting experiences with different doctors and CD. When

I had an endoscopy which revealed characteristic changes in my small

intestine and had blood work in which only the anti-gliadin IgG was

positive, my GI at the time still diagnosed me with CD. Since then

I've had 2 other GIs tell me that they didn't think I have CD and 2

other that thought that I did. I have another GI condition

(gastroparesis), so that's why I've gone to so many GIs. In

addition, my GP isn't sure if I have it. Its tough to know what to

think when you are getting so many conflicting opinions. But the

bottom line to me...if you feel better being GF, then do it, no

matter what other say. But I definitely understand your

frustrations with doctors. Been there, done that.

-Laurie in CT

[Guest guest]

>

> I just finished reading through the posts about whether a person

had

> CD or is gluten intolerant. I noticed that someone mentioned

> Enterolab. I have not been able to get any drs., so far, to

> understand that my problems are real and that I am not

> a " hypochondriac " because they can't figure out what's wrong. So I

> finally contacted Enterolab on my own and had the test done and

found

> out that I am gluten intolerant. I also went through York Labs in

> Florida to have the allergy testing done and found out about the

> yeast and milk, in addition to the gluten. I went to a new GP with

> these tests results and she too was trying to figure out if I am

just

> making myself sick. Obviously she doesn't know about celiac

disease

> either!

The book is already out of date, most of the research has progressed

markedly in the last 3 years, and new associated autoimmune diseases

are appearing almost monthly. At least since I became interested

about dozens of new papers have appeared that affect either diagnosis

or secondary problems, or the mechansitic understanding.

> She did say she was reading a book on it and found it very

> interesting!

Hey, well don't feel too bad, I work for a medical school and was

treated by professionals from my medical school at a world famous

hospital after my stomach ruptured, they charged $7000 for testing, 4

visits to the hospital (since then the hospital and my school have

gone separate ways), about 3 visits to the clinic, etc that revealed

all kinds of minor problems they could not understand (high liver

enymes int the blood, unexplained changes in blood pressure, etc). I

eventually diagnosed myself as eosinophilic gastroenteritus and

preparing to eventually go on an L-amino acid diet (or starve). I

suffered with declining health and increasing allergies from 1988 to

2003 went to see several internal medicine doctors, etc. My current

physician as part of my PPO believes that celiac disease is a

childhood disease and that I should be in a hospital if I had it, I

queried him if he knew of the autoimmune diseases or complex

symptomology and basically he spilled out what he learned in medical

school 20 years ago. He's not a bad physician or a fantastic

physician, this is basically the training of general practicioners,

my previous PCP worked in the Departement of Internal medicine (with

an area of interest in inflamatory diseases of the bowel) and I

recieved most of my testing and treatment from them. Of course there

are several hundred pages of pubmed abstracts that deal with the

serious consequences of subclinical CD that most physicians are

completely unaware of it, even specialist in the digestive feild, and

that is by definition subclinical CD. What is subclinical CD? that is

CD at a level or nature that your physician doesn't know how to

identify it. lol. Medicine is a big ole complex beast, many of the

best papers are basic science that physicians do not understand, and

are ill-equiped to keep up with, even highly educated specialist.

Just to give an example, after I started typing the patient samples

for alpha-gliadin one of the physicians who gave us samples decided

it was a good idea to started typing his patients for alpha-gliadin.

I can't disclose the number that turned up positive.

I would be willing to bet, that if I tested physicians at the best

medical schools in the country for tTG and alpha-gliadin, I would

find the same frequency of subclinical to identified CD as the

general population. IOW you don't know how not alone you are.

The Swedes claim that 1:150 individuals in the U.S. have C.D. (I

think the lifelong risk is about 1:100 and something like 1:1400 are

diagnosed which means the level of clinical to subclinical CD is

about 1:12). I am perfectly happy to let my physician go on beleive

that I am normal. I told him I had a problem with beef, he said 'beef

isn't good for you anyway, then I told him I had a problem with

chicken and pork and could only eat fish. 'Fish really good for

health, you don't need to eat chicken and pork, anyway'. Think of it

like this, your mechanic fixes your car, he doesn't know how to

detect your using good gas or bad gas, even if he is willing to

change your gas filter and feul injectors 12 times a year. His focus

is on how your car runs with the gas it has. Obviously if you put

deisel or water in the tank, he is going to figure it out. Physicians

are mechanics of the human body. Scientist are the ones who study the

ways things operate carefully. Unfortunately the two groups don't

communicate all that well with each other.

How did I identify I was CD, well oddly I work with autoimmune

diseases, and CD is an autoimmune disease. even more oddly I didn't

know that, there are alot of things I don't know, science, even in

specialties is very broad. I was typing patients for HLA*DQA1/B1 and

PCR typing requires the operator to type himself to resolve

contamination. After typing myself I was scanning the literature for

autoimmune diseases associated with DQ types in one of my 'ethnic'

patient set (for which I am a member of that ethnic set) and about 15

of 20 abstracts on the first page in Pubmed dealt with CD.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=PubMed

Search: Pubmed For: DQ2 DQ8 Then <GO>

DQ2 = DQA1*0201:DQB1*0201 or (CD-associated)DQA1*0501:DQB1*0201

DQ8 = (CD-associated)DQA1*0301:DQB1*0302

Even so I completely ignored these and did not pay any mind about

this until another member of my groups asked me what the exact types

and symptoms, on further research I found that I had one of the two

associated types and that eosinophilic disease was highly associated

with CD. [Yes and the patients have been retested for alpha-gliadin

antibodies], it only took me 4 months to figure it out. I read about

1/2 of one of the later review before I began tossing the pasta in

the refridgerator out to the dog. It was rather obvious that my

symptoms over the last 3 years matched the list given in that review,

and the fact I was 10 fold predisposed and my parent complained about

wheat sensitivies, and another sibling had stopped eating wheat

alltogether . . . . . Big thing here is that I can [randomly] read

those papers in the link above and understand them, many physicians

can't.

Two non-invasive test I think are important for the identification

of CD. 1. the new anti-rec-tTG which is 99.2% positive for CD

individuals with a 4% false positive rate. The other non-invasive

test is the HLA-DRB1 high resolution typing. Physicians like to

perform small bowel biopsy in order to confirm, some argue this is

not neccesary anymore. If the reports on the anti-rec-tTG test from

europe prove to be true, I think small bowel biopsy will become

obsolete. There are papers that claim that finding small bowel

eosinophilic patches are hit and miss and villous atrophy may occur

lower in the small bowel in some individuals and go undetected. With

the anti-'rec'tTG and DQ typing (About 1/5 will have either type

depending on ethnic group) one probably does not even need to do anti

alpha-glaidin reactivity test.

BTW, small bowel biopsy is typically done on the jejunal tissue

where as these tissues are frequently the last to be affected, so

jejunal biopsy may miss some patients with early stages of CD. One

thing I remind myself of is that CD is not an autoimmune disease

because of gluten intolerance, it is an autoimmune disease because of

anti-tissue transglutaminase autoreactivity. One could be intolerance

to gliadin manifested soley in antibodies, but without tTG involvment

one does not have CD. Obsulte confirmation of CD would be to search

the entire small intestine for patches and villious atrophy, and that

is plain silly. I am sure however that some patients, after numbers

of visits before diagnosis all but have this done. Clinicians don't

understand this, alpha gliadin is not natively intolerant, it first

has to be deamidated (i.e. McDo_____lds or your GI tract) and/or

digested to smaller peptides, this occurs most effectively in the

lower GI, once this occurs the peptides are presented to your T-cells

by DQB1 bearing cells and this is what then cascades into CD. For

some people on whole grain natural diets these levels of deamidated

gliadin may not be high until well past the jejunum. For most junk

food eating americans, your T-cells will be hopping out the sphincter

muscle to get the gliadin, doctors count on that. lol.

There was a review recently on CD discussing gliadin intolerance,

the great imitator. Have some sympathy on your physician. CD is a

rather perplexing disease. It is good you have gotten the allergy

test done. One member of my family had a similar test done and they

this individual had wheat allergies. Since then the individual was DQ

typed and found the associated haplotype and the alpha gliadin and

omega gliadin levels were high when specifically tested. Another

individual also had gluten Abs, but that person had Ab to omega

gliadin and does not have the DQB1 type and this individual does not

have CD. Oddly however this individual does have one the associated

diseases. I strongly suspect that the definition of subclinical is

going to be extended in the near future to groups that come down with

associated diseases but do not get clinical CD as clinical CD is the

manifestation seen most frequently in some groups, but not other

groups that bear the susceptibility types. IOW there are unknown

factors that modulate its appearance in different groups. A recent

lecture I attended report that a certain 'vegetable' could absolutely

suppress the immunological response of IBD if you consumed enough of

this 'vegetable'. And certain ethnic groups eat alot of this

vegetable, and despite having high levels of a susceptibility type

they don't get full blown CD in most areas.

> So I will go on looking for a dr. who hopefully knows

> more than that. Have the rest of you been able to find a good dr.

> who understands CD?

No. I understand there are some good ones in my medical school, but

when I was in the hospital with a ruptured stomach I was not seen by

any of these individuals, the first physician that saw me left a few

months later and the second didn't even remember doing an endoscopy

and searched for about 30 minutes trying to find the person who did

the endoscopy, this is what HMOs have done for us.

I read the associated literature, I did the tests myself and of

course no doctor can tell you what or what not to eat. I study

autoimmune diseases and survey the literature, so I have that aspect

covered, if I were to suspect lymphoma I would go see a specialist,

one parent has an at home diabetes kit so that is covered. The CSA

has a website and has different regional societies in which there are

meetings, doctors also go to the meetings and so doctors can be

connected in this way.

> Also, is there any other blood test that shows

> foods that you are allergic to?

Hidden allergies test.

I have never done this, a family member did.

Of course everyone is different. Early this year when I removed all

the 'sneaky' sources of wheat in my diet, my food synsetivies

declined. I was for instance, massively allergic to beef, not just

steak, any part or derivative of the cow. Now I can eat beef, cheese,

milk, etc, with out to much problem, since it was no change to stop

for 8 months, I simply continued on what I was doing and started

trying different things. Shrimp allergies, gone, Oyster allergies,

gone, Tuna allegies, gone, Crab allergies, gone, Pork allergies,

gone, etc. The literature claims that peanut allergies do not

subside, my peanut allergies are gone. I still don't eat chocolates

because I don't know what's in them. Alpha gliadin is the primary

allergen, all the other allergies are secondary and should resolve

once gliadin is removed; however it may take several months of

abstention to resolve the allergies.

> I am going to a gasto dr. in two

> weeks so hopefully he will be able to help. I also don't know,

> officially, if I have CD but, either way, I need to follow the

> diet.

Do you know that you can have your blood drawn at your request for

both DNA typing and serological analysis? Send your blood to a typing

laboratory and get it typed and assayed. I put it like this, if I

thought I might have a disease that could increase my risk of

autoimmune diseases 10 fold, and lymphoma several fold, I would take

a few $s out of my pocket to have some blood drawn, have in packaged

and sent. This is easy for me to say because I can purify my own DNA

from 'stone knives and bear skins'. I could easily make an adequate

sera sample with a finger lance, eppendorf tube, my right pants

pocket at an incubator and a pasture pipette. In general sera is

stable at room temp for several days, about 100 days in the

refridgerator. If you start flashing green bills and a blood lab, I

am sure they will be happy to hand you a few vacutaners filled with

your own blood.

For DNA typing, Citrate Vacutainer. 10 mls should suffice for DQB1

typing, find a local hospital that does it. High resolution typing

may cost $400, know who you are going to send it to, ice water or wet

ice is the best for shipment, nothing below 40'F (4'C).

For Serological Heparin Vacutainer.

Request a anti-tissue transglutaminase test, anti-alpha gliadin.

[Do the clinician a favor and don't eat a starchy fatty meal before

this test]. If you can find a laboratory that uses the new

recombinant tTG assay that is very good.

Even a lower grade

If you rigorously stay off wheat for a couple of months and you eat

it again, chances are you will know. At least for me, two fortune

cookies had a more profound affect than being on the ocean on a very

windy day (hey, I thought they were made from rice flour). However,

some papers don't recommend this strategy as it has been associated

with teh onset of secondary autoimmune diseases and potentially small

bowel lymphoma. If you go off wheat and rechallenge I suggest that

the challenge dose be low and increased slowly back to normal over

several days, stopped if the undesired consequences occur.

Best wishes on the testing. Be a skeptic, don't assume you have

something until you can demonstrate proof, there are many reasons you

can feel bad, for example intermittant diabetes, or simply bad diet

or bad sleeping habits. It may be true that physicians can make

errors of diagnosis, but get a confirmation or refutiation of the

diagnosis. IMHO, gliadins when consumed in excessive amounts can

cause discomfort to anyone, the nature of gliadin's poly glutamine

structure makes a rather strange protein particularly how it

interacts with other proteins in the gut, I have worked with hundreds

of polypeptides in my career and by far omega gliadin is possibly the

strangest. Is it possible you are eating too much pasta and bread?

Philip 'Still not officially diagnosed with C.D.' D.

[Guest guest]

Philip,

There was an awfully lot to digest (no pun intended!) in your post, but

a lot of great information and insight. One thing I wanted to clarify.

Did you say that if you were on a healthy diet (as opposed to one high

in junk food) that it would be harder to test for CD because the damage

would be lower in the intestine and the antibody levels would also be

lower? Because that might help explain why I tested negative on a lot

of the tests, yet had tons of symptoms that " magically " went away on the

gf diet, came back again when on a gluten challenge, and then gone again

on the gf diet (now permanently, no matter what my doctor thinks!). My

regular diet was very healthy, but did include wheat. I still eat

healthy, just no gluten now...

God bless,

nn

[Guest guest]

> Philip,

>

> There was an awfully lot to digest (no pun intended!) in your

post, but

> a lot of great information and insight. One thing I wanted to

clarify.

> Did you say that if you were on a healthy diet (as opposed to one

high

> in junk food) that it would be harder to test for CD because the

damage

> would be lower in the intestine and the antibody levels would also

be

> lower? Because that might help explain why I tested negative on a

lot

> of the tests, yet had tons of symptoms that " magically " went away

on the

> gf diet, came back again when on a gluten challenge, and then gone

again

> on the gf diet (now permanently, no matter what my doctor

thinks!). My

> regular diet was very healthy, but did include wheat. I still eat

> healthy, just no gluten now...

Theoretically, yes.

The gliadin peptide that is presented by the 'associated' HLA-DQ

molecules needs to be deamidated. While trace amounts can be

deamidated in the gut, the pH of the stomach is not low enough and

the stomach is generally one of the last areas to undergo damage in

CD. I have seen documented case studies of gastric eosinophilic

patching but these are probably rare and particularly dangerous. The

gliadin goes into the small intestine where it is digested by your

stomach enzymes and where it comes into contact with tTG enzyme. The

enzyme forms a complex with the gliadin peptide. During the

triggering state of the disease the tTG releases the gliadin peptide

converting glutamine (amino acid) to glutamic acid (another similar

but acidic amino acid). When this process occurs twice on the same

peptide then gliadin is converted to a triggering substance.

By this time the gliadin has traveled down the gut a good distance

all these events occur, then the HLA on immune cells surrounding the

gut come into contact with the peptide and present it to the immune

system and this is where futher lymphocytes will be attracted.

Gliadin itself is in various states of digestion and various states

of deamidation. These bordering sites become antigenic, and as they

do so the immune recognition migrates up the GI tract towards the

duodenum.

Some food manufactorers, at least from some of the papers I have

read, treat their wheat products with agents or processes that can

deamidate the glutamine. Cooking, for instance with acidic substances

at high temperatures could deamidate the gliadin sufficient to

provide a rare amount of the deamidated gliadin, this gliadin would

then be immunoreactive either in the whole state (previous studies

from our group demonstrate that even whole proteins can be presented,

although not a readily as digests) or as digestive enzyme digests.

This would attract T-lymphocyte classes up the GI tract towards the

site of cleavage.

In the case of eosinophilic disease, there can be actual

obstruction in the upper bowel which then causes some reflux of

reactive materials in the direction of the stomach. In this case the

culprits are secondary allergens such as meat gristle, heavy cheese,

nuts or other similar intractable protein materials, these proteins

become allergenic because they fail to undergo sufficient digestion

before reaching the lower small intesting and as a result are

crosslinked by the tTG enyme to gliadin peptides and presented to the

immune system as a new target. Subsequently the immune system

recognizes these higher in the gut causing an obstructive inflamatory

response and wheat digested after this obstruction become trapped in

the upper GI where it can attract some very nasty eosinophiles. This

is why eosinophilic patients are increasing restricted to liquid and

finally amino acid diets.