Re: Gliadin Intolerance, and prehistoric diet.

From: Texas rider (grosvenr_at_bga.com)
Date: 08/07/04 

Date: 7 Aug 2004 12:06:55 -0700

Philip Deitiker <Donevenask@worlnet.att.net> wrote in message news:
> Well yes if you ignore grocery stores, 99% of restaurants, etc.

You can find some of this stuff at regular stores. I eat salads when
I got out or grilled meat.
>
> > My doctor originally told me to avoid wheat, but he didn't
> > stress how much to avoid it.
>
> He probably did not understand what wheat intolerance is.

Yes, you are right, he didn't understand it, and he's very tuned in to
food problems, but he didn't get this.

> You were very lucky, they kept you in.

I'm on two internet lists and had read things about problems with
wheat, so I posted a couple of queries and someone called it celiac or
celiac sprue. Once I had a real searchable word, I was able to figure
it out myself. If I hadn't been able to do that, I think I might have
died.

They served me a
> whole meal that included a slab of chicken and some rolls. The
> next day I was back in the hospital again. I went on a liquid
> diet for 5 months. Popsickles, Yogurt ' jello' Pudding, soup
> broth, rice soup. I could not eat rice for about 2 months at
> all.
>

I would have not made in on a liquid diet very long, that's for sure.
Those rolls set you back.

> This is the typical age of recognition however the CD itself
> was probably advancing for 10 years previous. I myself saw the
> first signs when I was 28 but did not have a crisis until I was
> 41.

I had hints things were wrong a lot younger, but they were too vague
to figure out. I finally got diagnosed at 46.
>
> > I was very small and thin as a child
>
> not small but thin. Actually I was a fat baby, as soon as I
> started eating solid food I lost all my fat and became thin.

I was chubby until about age 4 and then got very thin.

> When I left highschool I weighed about 158, now I weigh about
> 175 (because of these stupid antibiotics) however my normal
> morning weight is 165. About 7 lbs difference. This is down from
> about 189 weight at the peak of the crisis. Most of that weight
> is abdominal and other swelling, probably 15 lbs.

Would you say you are overweight now?
>
> I wouldn't say I was underdeveloped. Good muscle mass in the
> legs at least. However I had alot of unusual cramping and
> indigestion.

Yes, I did, tool.

 It was clear that foods I could tolerate were the
> high corn/beans/rice mexican foods and I had problems after
> eating european foods.

I can't eat much heavy Mexican food. I like tortilla soup that has
much less fat. The rest of it doesn't work for me.
>

> Exactly, oil intolerance. forget french fries, sour cream,
> cheese, foods with oil in them, I got to the point that I could
> not eat any foods even marginally oily. Then came the protein
> intolerances. Even avocados made me sick, to the point I was
> allergic to them.

I can eat all this stuff except french fries, but I think it is the
size of the fat molecule that causes the problem. The last time my arm
went numb and I had an irregular heart beat so we went to the
hospital. As time passed, it went away. Totally confused the doctor
since I was fairly young, not overweight and had muscular legs,
indicating a level of fitness.

> It all makes sense now because a celiac sprue is a
> > malabsorption illness
>
> Yep, your cilia in your small intestine are trashed. Gliadin
> strips the top off them. It also messes with your liver.

yes.
>
 
> This is difficult if you have EG, since you have allergies to
> protiens, this may be why EG-CD requires an L-amino acid diet.

What do you mean by EG?

> I hope I have circumvented this. But I eat alot of carbs,
> however rice is irritating I stick with potatoes and corn, a few
> japanese starches.
>
I eat rice, have to watch potatoes, and some corn.

> Well after my first bout I could not eat anything. I complained
> about the rice irritating my GI and the people in the Dept of
> Internal Medicine sort of blew it off. After that my wife
> decided that I eat what I can tolerate. and it was all liguid
> for 5 months.

What did you actually eat? Just curious.
 
> I wouldn't be surprised the first sign I had was leg cramping at
> night, I think this was due to milk, specifically lactose, so I
> stopped drinking milk, that was 1993 or so.

If you've been on the diet for some time now, I bet you could go back
to a small amount now.

> Protein, no- cannot tolerate much yet.
> Fruit, yes
> Vegetable, yes
> Eggs, yes
> Yogurt I can tolerate pretty well
> Cheese. I havent eaten any beef or milk products since June of
> 2002. At that time I showed and acute life threatening allergy
> to beef (beef soup stock) and I had to stop eating beef
> altogether.
>
> > Yogurt and honey are used a lot. If the
 
> Sugary foods can trash the GI because of the osmotic pressure
> they create.

True.
> I used the low fat yogurt, regular yogart made me sick. I diced
> it with a little sugar and lots of fruit.

The support group here says not to buy any processed yogurt, as it has
more lactose in it, if you get sick from it. It never bothered me,
though, but that was unusual.
>
 
> Yeah we use cornmeal and other starches for cooking, actually
> the foods taste better. For CD+ individuals however I recommend
> only soften proteins, like stewed chickens, if you can tolerate
> chicken. I am still allergic to chicken, mildly, but can't eat
> much. Since I did not eat turkey freqeuntly or particular batter
> fried turkey, I never developed allergies to turkey, so I can
> eat turkey without problems.

I eat a lot of chicken, and now eat turkey bacon for breakfast. It
takes awhile to get used to cooking it, but it tastes pretty good. Low
fat, protein food. I was eating regular bacon, but got worried about
all than animal fat.

> Rice was problematic, my vietnamese friends made a rice soup.

  I eat it now, but couldn't when I first got diagnosed.

 Snacks such as raisins, trail mix
> > apples, and later popcorn and rice cakes will work.
>
> Trail mix has peanuts, and CD+ individuals frequently develope
> danger secondary allergies to peanuts, almonds and other nuts.

Yes, see other post. I can eat it, but a lot of people can't. However,
you can make your own trail mix if you're going hiking or backpacking
or something and can't refrigerate your food.

> So the individual needs to know what their secondary allergies
> are. The literature states that in terms of wheat intolearance,
> the secondary allergies begin to clear up between 4 and 8 months
> provided those foods are not eaten during that time. Eventually
> I will have to go cold turkey on chicken for 8 months.

That is what it took for me and milk.
Are you newly diagnosed?
>
> > Avocadoes are excellent to add to a lunch or dinner.
>
> Still allergic.
>
Hopefully you will get them back. They are a staple food for a lot of
celiacs.

> Or other sources. But I am still not oil tolerant enough.

I am not either, I don't think. The reason I got so ill stemmed from
taking flaxseed oil in the beginning.

All my
> oil comes from plant oil (corn) and from fish oil. I have much
> higher tolerance per gram of fish oil than lard.

Get rid of the lard and margarine.

 I made some
> tamales out of pig lard and I could not even eat 1, I fed them
> to my dog. I then made the same recipe with less amount of corn
> oil and about 1:5 volume of fish oil. I can eat about 2.5 of
> these per day. I make them with turkey and black beans. Very
> strange tamales but they are good. The cumin balances out the
> fish oil. One of the very few things I have found useful about
> Sweden is fish oil, As a vegetarian one can survive without
> everything as long as one has some amount of fish oil.

My doctor put me on it in the course of treatment, but it made me
worse. I might be able to eat it now. I use olive oil a lot on salads
and poured on avocadoes and tomatoes.
>
> Well in november when I stopped eating wheat I weighed about
> 186, this is generally what happened. I had problems and usually
> it would show up at about 182 to 186 lbs, I would modify my diet
> and I would drop down to 169-174 and the weight will creep up
> again, and a new problem would emmerge. In November I lost from
> 186 mornign weight to about 174 and when I found the last traces
> of wheat sneaking in I dropped to 163-4 lbs. Pretty much all
> inflamation.

That did not happen to me. Is this common?

>
> > Physical symptoms to look for in celiac sprue: very pale,
> > sickly complexion
>
> This can be due to dehydration resulting from inflamation. In
> EG-CD there are penetration of the eosinophiles and accumulation
> of ascites fluid, causing dropsy like symptoms,

eosinophiles and accumulation
> of ascites fluid, causing dropsy like symptoms-- explain

at the same time
> the indivdiual could be dehyrated. Doctors often confuse with
> bloating as fat, and don't seem to realize that water consumed
> does not always equal systemic hydration. My third visit to the
> hospital was after a fainting spell. The next day I continued to
> have problem after drinking alot of water I was unable to
> operate a motor vehicle so my wife took me to the hospital.

What caused this, do you know?

This
> was after eating a meal that was basically stewed beef in a rue.
> So I get there and they do all kinds of tests, they eventually
> do a lie down, sit down, stand up blood pressure test in which I
> failed to reach the stand up. So after a few hours lying in the
> emergency room and 1/2 a glass of water (if you are bloated you
> don't want to drink) I recovered partial pressure and they sent
> me home. Basically if you have water balance problems, you
> cannot maintain blood pressure when standing up. The ascites
> accumulation around the GI tract is basically crowding out the
> blood supply and robbing fluids. THis is very typical symptom I
> was having, and I basically knew how bad an episode I was in if
> my morning weigh was the same as my evening weight, indicating
> fluids were not clearing from the upper GI or were trapped. A
> basic scenario would involve eating something 'allergenic'
> within 24 hours I would gain maybe 5 lbs. Urination would stop,
> over the next 24 hours I would feel sick, too sick to drink or
> eat, and then overnight I might urinate 10 or 15 times and in
> the morning I might be 10 lbs lighter than the night before.
> I told this to my physician in the Department of Internal
> Medicine and she basically said I was lying. Actually for 3 day
> weight loss, I have lost up to 13 lbs. For example the day I
> entered with my stomach rupture I weighed 186 lbs and the day I
> was released from the hospital (3 days later) I weighed 174 on
> the same scale at the same time of day. I am not fair skinned so
> paleness doesn't show well on me.

This sounds awful, but didn't happen to me. My weight stayed about the
same during the day and night, but was slowling dropping.
> >, ridges in
> > fingernails, poor, thin nails, lackluster hair (hair may
> > change texture), or hair that is falling out
>
> Lupus is a common secondary disease with CD.

Interesting. I don't know much about lupus.

It is 22 fold
> increased. Also Dermatitus Herpetiformis is found in 25% of CD
> and I beleive has a 100% association.

Yes, I read this in the U of Maryland report. Have heard of this in
other people, also.
>
> >, depression,
>
> There is a strong neurological component to CD. I have never
> been depressed in my life until 2002, when I had to pull the
> last of my meat foods from my diet, this type of starvation I
> think can cause a essential fatty acid deficiency. The beef
> antigens were tearing up my lower GI, causing bouts of
> unmentionables, as well as _severe_ migrane with aura. Which is
> the most dangerous kind of migrane.

My dad was type 1 diabetic, which is a strong genetic component.
I was always mildly, sometimes more than that, depressed as a child
and when older, but never was treated for it. I notice the depression
is now gone. It is hard to describe. The best way I can describe it is
like looking at the world through a gray, translucent curtain.
 
> Failure to thrive, first recognized symptoms in Italy.

> Well I was an avid cyclist. However in 2001-2 I finally had to
> stop, and I could not work outside on the weakends, I would work
> for 15 or 20 minutes and the painful cramps set in and I would
> knock out on the counch. Every time I bent over and stood up I
> would damn near pass out. I can work outside now 8 or 10 hours
> at a stretch.

I am a horseback rider and like to camp, etc. so am very active. When
ill, though, I was unable to ride all, and thought I'd have to sell
the horses if I didn't get better. I'm o.k. now, but the biggest issue
is eating when I'm out. I can not easily do some things that require
living on unrefrigerated food. That's why the interest in trail mix.
Almost all the food I now eat has to be refrigerated.
>
> > BTW, this illness goes by a lot of different names: celiac,
> > CD, celiac sprue, sprue, gluten intolerance, leaky gut,
> > etc.
>
> Coelic disease, Eosinophilic Gasterenteritus, Irritable bowel
> disease.

And failure to thrive (in infants).

 The leaky gut is caused by the migration of
> eosinophiles (big nasty versions of T cells) to the lumen.

Can you explain further? The doctors were not in agreement that this
was a real disease. One said yes, one said no.

 They
> form plaques and food antigens migrate into the peritenial
> cavity. This results in the attraction of lymphocytes into the
> cavity and the accumulation of ascites fluid. In really bad
> cases the eosinophiles will circumcize the intestine and it will
> break, and a large segment of the upper GI may have to be
> removed.

What are eosinophiles and ascites fluid?
>
> > In the US 1 in 133 people has the illness as shown via
> > random blood tests.

(latest figure from U of Maryland that I've read)
>
> Its worse than this actually. In europed they followed family
> members of persons with CD, they found that something like 30%
> would spontaneously convert to subclinical when we talk about
> 1/133 we are talking generally about individuals with present of
> subclinical, this would represent about 10% of individuals with
> DQ8 and DQ2.5 but in reality probably close to 25% will
> eventually have subclinical CD or about 1/40 individuals.

What does DQ8 and DQ2.5 mean/refer to? This is where not being a
medical person becomes a problem, sorry.

Think
> about this however, there are a growing number of hispanic/NA
> living in the US, about 50% of these are DQ8 carriers. These DQ8
> carriers have come from mexico where corn is the primary starch
> and are eating far more wheat than there ancestors did. Wanna
> guess what type of health care problems are going to appear in
> the next 20 years amoung the growing hispanic population.

I suspect we're just on the tip of the iceberg with the popularity of
diets like South Beach and Atkins.
>
> > I in 4,760 actually gets a diagnosis.
>
> here's one for you 'Only caucasians get CD' this is what I was
> told by a clinician.

I have heard that, too. One of my doctors said it was discovered after
WW II in Belgium when they began trying to recover people in
concentration camps and some of them were not getting better. I
suspect that is why they think this. More research has been done on
people of European descent.
Considereing my grandfather wrote his book in 1950, it explains why it
wasn't in the book.

>
> > It is the most common autoimmune illness in the country. As
> > you can see from the paragraph above, it is quite easy for
> > the celiac to be going to the wrong doctor.
>
> There is no right doctor. The only doctors are the ones who know
> how to integrate the signs. I would be willing to bet that a
> sizable number have never heard of gliadin, or transglutaminase.

Mine hadn't (at least the tests), and he is very food-oriented. Sells
his whole practice on it.

> They probably are unaware that CD is an autoimmune disease or
> that it is one of the mose prevelant trigger for other
> autoimmune diseases. This would be based on my experiance with
> my own colleages.

True. No big drug company can make any money on this one. In fact, it
will hurt some of them because if people were eating properly, they
wouldn't be having most of these problems in the first place. What a
concept, everyone gets better just learning to eat natural foods
again? But, it won't happen. Americans love their chicken fried steak,
ice cream sundaes, beer, pizza, pasta, etc. No need for any of them to
worry. Most would rather just take a pill.

 BTW, there is no drug treatment, there is no
> disease. How much of this goes into the clinical thinking?
> This disease is all about patient information, only the patient
> can cure himself, the doctor is relegated to a facilitator.

This is true, but the hard part is getting the information.

> The allergist will tell then they are alergic to wheat, given
> them allergy shots and send them on their way without warning
> them of the risks of gliadin intolearnce that have nothing to do
> with allergy.

true.
>

> Well my story goes like this. After my third visit to the
> Hospital I created a thread here concerning highland/dryland (TK
> may remember it) and basically I was trying to link this GI
> problem because I was increasingly allergic to just about every
> european food and tolerant of oriental and mexican foods. During
> that nasty debate I got two bits of information. One concerning
> EG from EJ (lol) and another from Lorenzo concerning gluten
> intolerance. The EG guide worked well for a couple of years.

I've never read this forum before. What is the EG guide?

My
> mother claims she is gluten intolerant but I always assumed she
> was being a hypo, so I ignored this. Besides she claimed she was
> allergic to many things, and she claims she was lactose
> intolerant. In any case things got worse till 2002 and from that
> point I was only eating fish, but the odd thing was I could eat
> fish made of cornmeal batter but not flour. I still gradually
> increased in food allergies.
> Then in May 2003 I started preparing to do PCR of DQ loci for
> Myastenia gravis study. In august I typed myself to prevent the
> false recognition of types.

Explain this, please. What does DQ mean?

 I was DQ6/DQ8 and the alpha typing
> confirmed the DQ8. At the time I did not pay any attention to
> this. However as I started accumulating patient information I
> began to notice that many of my hispanic patients were DQ2 or
> DQ8+ or both. this was very odd. So around October I plugged DQ8
> and DQ2 into pubmed and out dropped several articles dealing
> with CD. I did not even look at the clinical articles I simply
> focused on articles showing a link to other autoimmune diseases.
> The story becomes more absurb. I then typed one individual I
> know who was from a part of the world were DQ2.5 is rather rare,
> and I was teasing her about her ancestors being Vikings, she was
> amused. And I remember seeing that DQ2.5 was specifically
> associated with CD and we talked bout this and the autoimmune
> diseases. She asked what was CD and what was the other
> haplotype. So I went and began researching this and found the
> other haplotype was A0301/B0302, exactly my haplotype and the
> diseases specifically symptomatic were EG and IBD.

What is a ahplotype?

 In fact its
> description sounded like the test results from my first visit to
> then hospital back in 2000. From november I stopped eating
> wheat.

Is that November of 03?

I had enough control over my EG that I did not have to go
> liquid again, but I was still having problems and my apetite was
> still +/-. Up until february I could only eat about 1 fillet of
> fish per day and maybe a 1/2 of fillet in the evening. I was and
> I am taking lunch at a fish place, they told me on the side that
> the manager had added flour to the cornmeal to make the fish
> look bigger, the lady who cooks there started removing it, I
> think I went to mexico (where it is easy to get foods not made
> with wheat) and on the way back, 3 days later my apetite broke.

I am very careful ordering fried fish in restaurants. In almost all of
them, they add flour. I've gotten sick a few times before I figured
that out.

> On the monday I ate about 1 1/2 lb of cod fillet, then followed
> in the evening with 2 fillets of fish, and about 2 or 3 fillets
> per day, three months previous I would have been in the
> hospital with this much protein. At the same time my weight
> dropped from 174 to 165 and the upper GI bloating completely
> disappeared, this for the first time in maybe 15 or 20 years. My
> wieght eventually reached 163 but has steadily risen. Right now
> I am still working on eliminating some spurious sources, most
> people cannot understand or even conceptualize wheat allergies
> and thus are very uncooperative.

You have to read every single label. If you go out to eat, just have
oil and vinegar on your salads, butter only, etc. Many things that do
not seem like they'd be a probem are. I have gotten into the habit of
grilling waitresses and waiters on how things are made. You have to.

> Since then I have typed my mother and my father. Mother
> carried DQ8 and I suspect this came from her father who she
> claims is 1/2 native american. Noone on my mothers grandfather
> side has CD that I know of, my sibling has a confirmed wheat
> allergy which I recently learned about. With the IgG test my
> father showed up with Abs as stong as my mothers. He does not
> have DQ2.5 or DQ8 however he has an autoimmune disease that in
> italy showes a very stong association with gliadin intolerance.

What is it, do you know? These things seem to be all very tied
together.

> MY father interestingly was treated for his condition with a
> shunt, in Italy 85% of individuals with the same condition were
> effectively treated by wheat-free diet. So I wonder if his
> neurologist even knows about the link between CD and his
> condition.

Sounds like he is a celiac, but presenting different symptoms.
Everyone seems to be quite different.

> This unfortunately will be the long future of CD for many
> individuals. Nice hearing your story, though, maybe someone
> googling IBD or EG will see this and it accelerate their quest
> for information.
> Get your DQ typed and get your family members DQ typed.

 HLA
> DQA1 and HLA DQB1 are the only known strong associations with
> CD. There is a very high probability that one of them is
> subclinical or will become CD in the future. If they are DQ2.5
> or DQ8+ they will know how to save alot of time, and 30% of
> clinical and subclinical patients have some other form of
> autoimmune disease. Its not just an allergy.

Do you know of any place in Austin?

> Methodist Hospital in Houston has a DQ typing lab, all you need
> to do is get a blood draw in citrate and they can do a DQ type,
> shouldn't run more than $300 or $400. They cannot do alpha, but
> DQB1*0302 is almost always associated with DQA1*0301 and
> DQB1*0201 is almost always associated with DQB1*0501. I
> actually typed myself, both for alpha or beta, but methodist
> did the DQB1 typing first. BTW don't mention I am from Baylor,
> they might double the price ;^). In addition I am looking for
> CD+ individuals as positive controls, if you have a family
> member that is identified as CD+ and has not undergone wheat
> restriction I need blood from those individuals, within a couple
> of weeks I will begin standardizing a gliadin assay for
> comparative use. If you can provide the blood I may be able to
> do the typing for free for that individual.

My youngest daughter is identified but has not had this test done. I
do not think any of us have. She is not on the diet. We've both had
the test for gliadin and transglutaminase. That is the only test we've
had. I'm not interested in spending any more money on this, but if
they'll do a free test, then you could probably use my daughter,
although she is not sick. I just had her tested since she had some
subtle physical symptoms. I did not test my other daughter, as she did
not.
>
> BTW if you haven't eaten wheat in 3 years, you are no longer
> CD. I am no longer EG {I shouldn't say that, these damn
> Dicloxicillian pills are rebloating me)

Well, I can be if I'm not careful...<G>

CG
>
> --
> Philip
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