gfp

  darlindeb25 said:

Wow, Gfp, you must be a lot older than me!

Not older but not far off! But my mom was 30 when she had me and we were very poor and didn't have much in the way of luxury items. Perhaps I got to see them all introduced one by one .. certainly my grandmother spent her whole life without most of thse labor saving devices and never had a car.

I spent 5 years of my life carrying water from a well on a daily basis .. (although I can't say I was poor at this point but i was living in North Africa)

Anyway, I am just saying the same as you ...

  Quote

Daily exercise can be implemented in daily chores, if you want to do it. But, you must change your routine all the time. If you have an upstairs, you can go up and down your stairs several times for exercise, or a basement too. My sister uses the stairs at her work, instead of the elevator. Every little bit helps. We are a lazy society. We use a remote, instead of getting up to change the tv, we watch tv instead of going outside and watching nature!

You really can exercise at home, I do it all the time!

My point is with all the labor saving devices we need to make a concious effort our parents (or grandparents) didn't have to make.

For most of my early childhood my grandmother picked me up from school (a 3-4 mile walk) and then we walked back to her place until my mom finished work...

Sometimes my father would pick me up in the car but as often as not we would walk to my house (4-5 miles).. and he would drop her off afterwards. Meanwhile my bachelor uncle would finish work (as a laborer) and spend 4-5 hours out hunting for food on the hills and my grand and myself would clean out the chickens, again quite labor intensive.

If someone spent 4 hours walking the hills now it would be exersize, for my uncle it was providing food. Obviously these are bigger things but was you say we can exersize at home just doing chores, we don't need to set aside special time but we do need to be concious of making chores into something that exersizes us because we have so many labor saving devices.

The funny thing is as you say, these devices were mainly thought of as giving us more leisure time but in reality they end up giving us more sitting on our bum time.

  RiceGuy said:

Whenever I think of exercise, I think of people moving around for no other reason than to burn calories, all the while waisting time they could use to burn calories while dong something fun or important.

OK, a different view point is to forget about the calories....

(I agree with the rest of the post)

Exersize is a means in itself, our body needs exersize to be healthy... that exersize can be ping pong as you say.. but we can burn calories just doing academic things but it doesn't have the same benefits as exersize!

Today's modern life is almost designed to prevent exersize... even a simple hing like drying our hair can be made ith a machine that has a side affect of damaging our hair and reducing the exersize of towelling....

Of course we can then buy products to protect our hair while balstic it with a hairdrier....

Many of use drive to a supermarket, take a trolley and drive home where our parents would have walked to several stores and carried the shopping home..we use a vacuum... etc. etc.

In our parents and grandparents time "they wasted so much time" .. walking to a store when we can drive etc. but they got exersize as part of life so they didn't need to "distill" exersize time into gym workouts etc.

  ravenwoodglass said:

Hopefully someday they will realize that celiac is a 'spectrum' disorder and to only use total villi destruction as a diagnostic proof when so many are effected in so many other ways is frankly inhumane. It's too bad they insist that we be almost dead before they will diagnose, many times our lives are severely impacted long before that occurs.

In your case the damage was both severe and not completely repairable...

I just don't see how if every single study uses biopsy as the only positive that we will ever get to that point.

celiac disease seems to be one of a very select group of diseases that is DEFINED by a test.. and because it has such a high false negative rate any suite of tests where the biopsy is positive and EVERY OTHER test is positve (including dietry response and the patient actualy getting better) they seem happy to throw out every other test...

Its impossible to actually prove the false negatives because the test is definitive... catch-22

  cupp125 said:

My apologies for not responding to all of your great replies sooner--unfortunately, I'm still dealing with some very, very frustrating health problems (ironic, no?). I think that everyone raises great points. Doctors probably won't have (or take) the time to read literature provided to them (which just gave me a good idea--I'll type it up in a second), and yes, unfortunately right now money and drug companies control the medical community. I won't get into a rant on that and how horrible it is, but I really, really feel that patients with rare or tough to diagnose diseases are being given less than acceptable medical treatment. I can't shake the burning urge to do something about it and fight this, but when you take on something like this you are taking on a lot of money and a lot of people who don't want things to change. One of my biggest disappointments since finding out I had celiac disease is the oversaturation of (very helpful and wonderful) information on recipes, food brands, etc. and the lack of information on the other things, the problems with doctors who don't know anything about it, the severe emotional distress of not being able to get help when you really need it, etc. Anyway...to my idea:

We know that we probably can't change the way most doctors think about celiac disease because they just weren't trained to look for it. What if we went after the medical schools? What if we sent literature and letters...or petitions, to medical programs across the country, asking, pleading with them to educate future doctors on celiac disease and associated conditions and complications. I don't know how much influence the drug companies have over these programs, but I would think that this would be the place to go. Maybe we can't get great help from the current generation of docs, but what if we could help usher in a new generation of very well educated doctors fresh out of med schools that spend more than a half an hour on celiac disease?

Thoughts?

- Colby

PS - I hope you'll forgive me if my tone is a bit...bitter. Part of it I'm sure is the difficulty in conveying tone through typed, online things, but the larger part is my frustration with being sicker than I have ever been and not being able to get even a glimmer of an answer. I lost my job this week because of it, and I'm concerned that I won't be able to get back to work soon. More than anything, I'm worried because I'm getting married in six months and I can't believe with any confidence right now that I'm going to be healthy. I'm a little upset with the twenty-some odd doctors I've seen in the last few months.

Colby, your written style is excellent; truly a joy to read. Perhaps this should be your tool of choice?

I really mean this, you come across as frustrated not bitter and this is IMHO perfectly in line with what you are saying and have to get off your chest. It truly adds a passion to your communication and perhaps THAT can make a difference?

  Quote

when you take on something like this you are taking on a lot of money and a lot of people who don't want things to change

My turn to sound bitter I guess.

Its a lot of money but its not so many people don't ant things to change.

The real problem is its a lot of money and a lot (the vast majority) of people who don't care for things to change or even change in itself.

When a relatively few people have a lot of money and something they wish to keep as it is they have a relatively simple task. They simply need to convince the masses that nothing needs to change and that the consequences for them if things do change might possibly perhaps (yes deliberate use of vagueness) adversly affect them even in a small way.

For most, the energy required to change something is outweighed by the inertia not to change.

In other words is easier to spread misinformation or selective information for a group of wealthy interested parties than it is to counter those claims or put them in context.

  ""Jestgar" said:

The kids learn the basics in med school, but then they spend four years in residency where their practical education is dictated by the older physicians teaching them. I don't think starting from the ground and going up will work in this structure. You've got to convince the existing docs and count on them to pass on their knowledge.

While this is true perhaps a two pronged approach would also work...

If the internees learn this and it is then later reinforced then perhaps that will also help?

There are thankfully as you say plenty of doctors who actually want to help people and make them better....and of course the descision to become a specialist is often financially based not alturistic.

However, the biggest impediment I see is the need to "tow the line". We can discuss the biopsy standard which is to me similar to the h. pylori story.

The h. pylori story is quite well documented as it is one of those that things actually went right... but history of course has a strong bias towards the victors... and history is written by those with the money and power to put the spin into the accepted history. Perhaps if things go well then in ten years the biopsy standard will seem as archaic as ulcers being uncurable?

With h.pyloti, Warren and Marshal had very good clinical evidence that h. pylori caused ulcers and could be cured by very cheap antibiotics. However the drug companies had chosen ulcers as a high income area. Most patients suffer for a long time and they glaxo-welcome spent a huge amount developing ranitidine as a way to have patients with a long term uncurable dependence on their drug which could be made for cents and sold for dollars.

Ulcers rarely kill, they ruin lives and can kill but statistically most of their patients (or users is perhaps a better term) would live long, dependant lives.

Warren and Mitchel threw a spanner in the works.. they made the incurable curable and by a drug who's patent had long expired and cost cents...

What happened was complete ridicule by the medical community. Glaxo paid MD's and GI specialists to write in .. they paid teams of investigators to dig up dirt on their private lives and families and even paid thugs to intimidate them and threaten the lives of their families. Meanwhile the medical journals were blackmailed that they would withdraw advertising if any page inches were given to anything positive regarding h. pylori.

It seems impossible that glaxo did not have the money to do a clinical trial, lets face it Marshal did one on himself, instead they just paid to have any clinical trials not printed.

Meanwhile government organisations like the FDA had employees bribed to prevent any clinical trials. There is no other explanation as to why a cure for an illness affecting hundreds of millions with a drug that cost cents was not made. How could this trial using a common antibiotic that was used for many other illnesses not be made... there was no risk .. no risk to the patient (so long as they were not allergic to amoxicillin which is easily screened) yet the FDA was told that it would not permit the use of antibiotics to treat ulcers and did as it was told.

As mentioned previously, what of the insurance companies? Surely it was in their interest to have their expensive long term patients treated ....??? You have to wonder if they were not paid off? Ranitidine was the most expensive drug marketing EVER... (after it as conclusively proven that antibiotic actually worked)...

It is still used by Harvaard as a near perfect marketing scheme down to the choice of color of packaging and the flooding of doctors with promotional material ....

Brilliant marketing that killed hundreds of thousands and the drug companies were quite happy to lose these client so long as they had a steady flow ... from their perspective its better a client lives in pain for 10 years before an ulcer bursts and kills them than they are cured in two weeks!

Anyway ... this is what you are up against.... the wheat industry pours money into lobbying... they have a product with 50% waste that can be used... if we question that then farmers will go out of business, a new ice age will happen and aliens will invade???? Well perhaps .. but how do you prove not to the masses?

Strangley enough the h. pylori testing was done in a country with no domestic drug company making acid uptake inhibitors.. would the USA or UK EVER have made this?

Somehow I doubt it, we would have jst forgotten about it by now.

  home_based_mom said:

Anyway, everyone seems to universally agree that if a mom (meaning human mom) eats food containing gluten, it winds up in her breast milk.

Actually a lot of people seem to think not ... I'm not one of them though...

  Quote

As milk from cows and goats is in a way mother's milk - just a mother cow or a mother goat - why is there not gluten in that milk? They certainly eat gluten!

No one that I have ever seen has even suggested that there is. So, why not?

Inquiring minds want to know.

It makes sense, I'm mot sure how much wheat they eat... but they must certainly have some.

First ...

  Quote

Well my understanding is that cows are fed sprouted wheat which doesn't contain gluten

Well, perhaps it does and perhaps it doesn't. Gluten is produced in the actual seed part.. this is true BUT ... Its not actually gluten does the damage but a small part of gluten. Gluten is just the delivery mechanism. One has to presume that the component parts of gluten have to be present first (and supplied to the seed head) for gluten to be created by the wheat.

Cattle are given straw which must always contain a few heads of wheat or rye etc.

So again it seems impossible that their diet is gluten-free.

  Quote

Also, my doctor told me that I could react to dairy because the small intestines produce the enzyme which helps you digest dairy and when they are damaged in celiac patients it causes a dairy intolerance until the intestines are fully healed - this could be a reason for you reacting to dairy.

Its certainly one reason but is it the whole story.

I think the main question is if cows actually do pass on gluten products in their milk ... ??

Unless someone tests I don't know a resolution ... the most significant difference between cows (ruminants) and many other mammals is their digestive system...

Direct from wikipedia:

  Quote

Ruminants have a fore-stomach with four chambers. These are the rumen, reticulum, omasum, and abomasum. In the first two chambers, the rumen and the reticulum, the food is mixed with saliva and separates into layers of solid and liquid material. Solids clump together to form the cud (or bolus). The cud is then regurgitated, chewed slowly to completely mix it with saliva and to break down the particle size, Fiber, especially cellulose and hemi-cellulose, is primarily broken down into the three volatile fatty acids, acetic acid, propionic acid and butyric acid in these chambers by microbes (bacteria, protozoa, and fungi). Protein and non-structural carbohydrate (pectin, sugars, starches) are also fermented.

I wouldn't want to hazard a guess. All I can say is that obviously cows digest very differently (and efficiently) than humans and a small amount of gluten might be far better broken down than with us?

  Quote

According to the study the mean period of gluten exposure was 2.4 years, although it was likely longer as recent studies have shown that many celiacs are asymptomatic for many years before damage occurs that is severe enough to cause obvious symptoms.

Yet another article proving conslusively thay celiac disease is actually caused by the actual biopsy. ???

Using the biopsy as the gold standard 100% of patients not biopsied did not have celiac disease. So statistically only patients biopsied had celiac disease. The control (blood tests) do not have celiac disease since they didn't have a biopsy.

Meanwhile celaic STARTs with the biopsy, those of us who suffered before the biopsy presumably were making it up since to have celiac disease you must have a biopsy.

This seems like some stupid catch-22. Any study that studies celiac disease has to use the biopsy as a gold standard... (or be ridiculed) and regardless of any other symptoms for it to be called celiac disease they need a biopsy? Every time blood tests are compared its with biopsy as a gold standard and presumed to be 100% reliable...

Am I the only person thinks this is ironic?

www.scielo.br/pdf/anp/v62n4/a07v62n4.pdf

and from this site:

https://www.celiac.com/articles/112/1/Brain...ease/Page1.html

  mmc said:

We were thinking sort of a Cracker Barrel type gluten-free shop. A restaurant open for breakfast & lunch with fresh bakery items & all gluten-free grocery items to purchase.

Our only concern is that people won't come since we live about an hour from Nashville. I know I would drive an hour to have a meal out with my family without worrying or to buy my groceries from someone who knew what they were talking about and I knew I could trust.

Another thing we are looking into is accepting Food Stamps. gluten-free Food is normally so expensive and if you are on FS, the places available to you to shop do not normally have a good selection or are incrediably expensive. We just feel that your health should not be negatively effected just because you don't make enough money to afford what you need.

Please don't get offended .... this is just my 2c.

Much as its convenient for the store to be close to you it makes business sense to put it where the customers are.

How far would I personally travel REALLY varies .... I have made special trips on quite a few occaisions of a few hours but these are pretty much novelty.

When I travel I will sometimes hunt out gluten-free places (restos or stores) that I would never bother with at home.

As an example, I live in central London UK so I have LOTS of choice. I have a five minute max walk to a supermarket that sells some gluten-free produce .. limited but OK. Within a 10-15 min walk I have a lot including speciality stores with a much bigger choice.

Anyway my shopping habits are 90% of the time I don't buy ANY speciality gluten-free stuff at all. From time to time I buy some gluten-free pasta etc. but this is perhaps once in 3 weeks?? Every 6 months I make the trip to buy speciality stuff like gluten-free soy sauce, whilst I'm there I will buy some novelty stuff ....

What I buy EVERYDAY is fresh vegetables, fruit and meat/fish. If the gluten-free pasta was better/cheaper I might buy it more often but ...

a) Its nowhere near as good as REAL gourmet pasta/bread .... it might be as good as cheap stuff but its not so great as real good stuff...

I just won't pay that for a mediocre experience. (sorry but its never AS Good)...

I would happily pay a lot occaisionally for really good bread or really good fresh pasta but .... its just so much easier to make naturally gluten-free stuff and put up with the occaisional poor gluten-free bread for sandwiches...???

If you did a real good resto I'd travel further.... I guess I'm a bit on the foodie side...but to me the EVENT happens eating... so travel to a gluten-free store is OK but a bind and then the actual event is back home when you cook. A resto on the other hand the event is there... you take your friends etc. so even if the gluten-free pasta isn't quite so good as the real thing.... you have a great time feeling safe.

So I think people might travel occaisionally for gluten-free food buying up to 30 mins... but any longer and it might turn into a 3 monthly shop and buy what they can locally inbetween. A cafe ... I would think would not have the same pull except for novelty... (people would come once or twice) but a really good resto in combination and you might get people travel for a special meal out and take advantage of the shopping...

Eitherway, I wish you luck...

  cmichelle said:

I apologize but the overuse of "get over it" and than telling me to see a counselor in efforts to use a treadmill was a bit far fetched so I stopped reading there. I am looking for mature, helpful responses, not demeaning and degrading ones. Thanks for your "efforts".

BTW, we don't have the options of the great outdoors - we live on a mountain and I have a connective tissue disease that I can not "get over".

I should have expected this. I know how these message boards work, there is always a group who are insistant on being rude and behaving like children.

Maybe you should see a counselor on your over use of catch phrases.

Sorry if you don't like "get over it" .. there are other ways to word it but what offends one person might not another.

Everyone has lots of issues but when they affect your health then its time to push through them.

If its not serious enough to need to seek professional help then its something you should get over for your own sake.

Had you read the rest of the post you might have seen the example of how one of my good friends had to get over his aversion to public exersize. However, lots of times something that seems trivial to one person (like the words "get over it") are not trivial to another. Many many people don't like exersizing in public.... However not everyone is stuck up a mountain with your problems !!

According to your post, yours is affecting your health ...AND . its the only form of exersize available to you and you have an aversion to it.

You might have a good reason or not for this but either way if this is the only exersize available for you then you should do whatever you can to address it (even if you need professional help).

There is no need to be offended.

There is also no need to ask for professional help if this is not something you can address by yourself.

Although it doesn't affect her health my mom has a string aversion to spiders. I know that however its rationalised nothing I say is going to make her feel at ease in a room with a tiny spider. However there are councellors who can help. In your case you have a common aversion.... but unlike most people with this your health is suffering because you are limited as to what exersize you can do. The longer (and if you keep gaining weight) the harder it will be...

So I'm deadly serious and not trying to offend BUT .. you do need to do something about this (be it moving or dealing with the common aversion to public exersize) ... and if this was a simple thing you would probably have done it already?

  Quote

I know how these message boards work

There is no magic pill. (well not one that doesn't mess you up) so that basically leaves you with diet and exersize.

Burning calories ... that's another matter ... brain activity can burn more than most people realize so doing a crossword or puzzle etc. is way better than watching TV but ... its no substitute for a minimum of exersize for health.

gluten-free Soy sauce, lemon and or lime juice, pureed fruit (apple, pear etc.) is a good base to add to.

We posted quite a few the other week so do a search on the forum.

  cmichelle said:

Wow, not only was your post helpful Ivanna44, but inspiring!

I have been told that the only exercise I should do at the moment due to the other health issues outside of Celiac, are walking. Conveniently in our building (we rent at the moment) we have a workout room with a treadmill.

  Quote

I am really really really shy however when it comes to exercising in front of strangers (why I will never belong to a gym.) I am fine if my husband is there with me but I just don't know why it is that I feel shy working out in front of people.

I have a friend who is 1/4 cherokee and inhetirted a metabolism... he was obese in Europe where obesity is not so common hates exersize and had a bad diet and smoked 100 a day. Whenhe was told he would die (not might..would) if he didn't change he did. He has lost over 150lbs ithe last year.. he hates the gym but spends 1hr a day there, he gets all sorts of interfering comments (look at the fat guy on the exersize bike) .. etc. and he swims 2 miles a day.. 6 days a week.

He is now bordering overweight/obese after shedding 150lbs... so imagine the feeling he had.

so

  Quote

I should take advantage of the free treadmill we have more.

  Quote

I never know what is the correct amount of exorcise or nutrients or anything. I was never taught how to live healthy because until I was 21 years old and became really really sick, I was very very healthy. Or it seemed. I was one of those young people who NEVER got sick.

  Quote

I will take a lot of your advice and I have seen those protein shakes and bars as well, thinking 'do they really work?'? But then I notice it has wheat in them and say "Well, that's not an option." So I never tried them.

Hey everyone, how does everyone feel about the GREEN TEA I hear so much about? Does that boost your metabolism the way they say it does?? I have had some in the past but it was just because I felt like trying a bottle for the taste. Never knew the metabolism booster it had. Is it helpful??

Eat less .. eat healthy... if it doesn't look like food its probably not good! By this I mean a protein shake etc. doesn't look like food. Stick to small portions of real food... stay clear of anything processed, with additives etc. You will feel hungry.. you are used to eating more than you need but ...

The best (healthy) way to loose weight and keep it off is to eat the right amount of healthy food and do exersize. Your exersize is restricted so you must do what you can and reduce your intake of food overall while adding as much high nutrition food. As a celiac your adsorbtion is off... this means you might lack vitamins or minerals. If your body needs them it will make you hungry, if you add empty calories then it still needs the nutrients so you STILL feel hungry ...

So stay well clear of added sugar, snack foods ... try and make each meal count (nutritionally)... if you can get a screen done you might get pointers as to what your body is missing and simplify this. If you have cravings then these can also be pointers...

For me the time frame is variable, the amount ofgluten doesn't sem to exert a measureable control over the other variability.

Issues like general health, what your immune system is up to as well wtc. seem to play a bigger part.

I can get sweats and mood effects after hours and gastro might take 4 hours or 4 days. Also once glutened it comes and goes. I might have a good day or two then it comes back. Sometimes I'll have an epidode where I literally run a fever and have explosive D, sometimes its far milder.

When you constantly take riss (like eating out every week) this can be very hard to pindown. One can overlap or you think you got glutened again and its just last weeks .. coming back for a single poop episode.

The only way I found this out was.

1/ Throw anything non gluten-free outof my kitchen

2/ Eat only at home for 3-4 months (and I mean only food prepared from scratch from home and I really mean scratch, no packets etc. just meat, veg, fruit)

3/ Keep a detailed food and symptom diary.

I did this for 6 months more or less (and its when I really got the last 10% better). Doing this I found that (for me) a single glutening might persist for weeks though it becomes less frequent and less violent overall. I found before a lot of the time I presumed I had slipped up again in the past it was a repercussion of an earlier glutening. With time you get a feeling for the differencebetween a delicate tum and gluten, I'm convnced that this is the only real way to do it though hard as it is and wish I'd known this to start off.

Lots of people say they are gluten-free yet take risks a lot. Apparently the average times a person should have D in a year is 4-6. 6 is nursing mothers and high risk groups. Any more and ... well its not normal.

Plently of people get told "oh you have IBS as well" I don't beleive this is true in 99% of the cases, I think its glutening and people don't realise because they never got to a place with 100% gluten-free. If you eat out, share a kitchen etc. these are allrisks and if you eat food from here 2-3 times a day the chance is you will get CC ..perhaps once a week, perhaps once a month... but because gluten and its effects takes so long to decay these all run together.

just my 2c

  home_based_mom said:

Yup. I was in a meeting one time and we were discussing a previous mantra of "safety, service, budget" and I said "what was really budget, budget, budget." The guy said (no kidding) "No it wasn't budget, budget, budget - - - well OK it was budget, budget, budget."

The left hand doesn't have any idea what the right hand is doing because the "brain" never lets either know that it matters to their own effectiveness and the company as a whole what the other one is doing. And so no one cares.

Welcome to mega-corporate America!

Like I observed really, I once sat in on a meeting only because an other division were using our high tech projector and I had the meeting room 1st.

Company in question were discussing saving money on plastic bags at service stations and someone pointed out if they got any thinner they would just break on the forecourt.

The someone said , good they will have to buy the item again ...

Then someone finally mentioned safety ... what if it was flammable, brake fluid etc.. (finally I thought) ..

Nope noone gave a damn unless it meant closing the gas station and loosing revenue.

(including the guy who brought it up)

I think this is global corps everywhere, not limited to corporate america...

  home_based_mom said:

Must make for an interesting scramble behind closed doors for the companies that purchase from multiple suppliers and don't seem to have a clue ~ or at least won't admit to having a clue ~ what is actually in the product they ship out for public consumption!

This is pretty much my opinion.

The bigger the company the more disassociated it becomes... so some guy purchasing has a job of getting the cheapest bul ingredients and someone in another state or even country has the responsibility for QA. Having worked for a few large internationals it sems to usually be a case of the left hand not knowing (or caring) what the right hand is doing. Divisions have performance quotas and metrics, if they meet them then noone gets canned. Anything that hits the bottomline gets priority so QA comes a way's down the chain.

As is usual QA only becomes important AFTER a problem... up to which it is a minimal budget item since it has no direct revenue stream.

I find it hard to believe that in a huge multinational people care about the laws anywhere near as much as plausible deniability and their own a**.

  kbtoyssni said:

You'd have to feed that kid gluten for a looonnnngg time to hope to get a positive now. Like a year or two??? It's stupid to make anyone sick for a long period of time just for an official test. Especially a kid who is still growing and developing right now. You could try enterolab testing - that's still good for up to a year after going gluten-free. Otherwise you could do a gene test - it won't confirm or eliminate celiac, but if she does have one of the known genes, maybe that's enough to convince your husband?

It seems to methat since babies are growing so quickly they repair much more quickly. As we get older our repair system slows down but for a baby the damage may repair as fast as it is made. This means the biopsy is much more tricky since the villi are repairing as fast as they are damaged and its much more tricky (need more luck) to find them damaged.. . This doesn't mean however damage is not being done.

As kbtoyssni say's this is such a critical time ... whymes about and take risks?

  new2celiacs said:

Well, I live in Australia, so the labeling laws etc might be different here. However, in Australia maltodextrin is most definitely derived from wheat and therefore has gluten in it. If you are not sure, call the company and ask.

Yep it depends WHERE the malto dextrine is from.

Europe has both wheat and non-wheat derived .. the US only corn etc.

However malto-dextrine is a commodity. Its a waste product which is processed into something that can be sold. A company may buy this on a world market and because its essentially a waste product its bought and sold along with other commodites, big multinationals order it by the thousands of tons along with othr similar products. If you live in the US domestic is probably cheapest but not always.... shipping might be combined with higher value food additives and hence a big shipment might also contain maltodextrine.

An analogy is oil. When you buy gas it is often mixed from many sources. The raw product (crude) is purchased and processed (refined) but one oil company might not process their own but sell it and buy crude on a world market. Even after they process it they often sell gas at the pumps from someone elses processing and sell the waste products on elsewhere. SO when you buy a plastic garden chair the original source of the hydrocarbons is probably a mix worldwide.

Oil companies have whole departments that organise the buying and selling of different components and waste products based on world prices, transport costs and shipping with other products. I don't expect huge multi-national food companies to do any different?

  erintigs said:

Hi folks,

I have been eating a gluten-free diet for about 6 years. I originally discovered I was sensitive to it when I did an elimination diet years ago, but I've never been tested for celiac. Fast forward 6 years and I have a new doctor who wants to test me for celiac specifically. The other day she did blood tests for antibodies. My understanding, though, is that those tests aren't very accurate if you haven't had gluten in the last 6 months or so. Do y'all know? If I'm right, can anyone point me to studies or other info I can show my doctor?

Thanks,

Erin

I doubt that will really help. Unfortunately.

The bottom line is celiac disease testing is not looking for an absolute but a cut-off. If you never had TB or immunisation you would be negative because the body has no antibodies BUT testing for IgG and IgA there will always be some and a positive or negative is an artificial cut-off.

Your MD's rational is like testing for an external disease, that the antibodies will persist even after 6 yrs... but it isn't that sort of test!

The first step should be your MD should read the testing procedure and rational! They obviously haven't (which is normal)...

IMHO you can get them to realise this by asking them to explain the testing.

Why will the test be positive?

What is it testing ....and what differentiates a positive from a negative.

So everyone has some and celiac disease is above a threshhold ... is this the same testing for an external disease antibodies?

So all people have some antibodies and only those above a cwertain level are considered positive?

So surely I'll get some antibodies but not so many as eating gluten daily? How do you know this is enough?

The problem is this can go on forever.

There are plenty of biopsy positive people who got told they would "grow out of it" ...

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Baby has had 2 panels one in the very beginning that was ridiculously low and the other when on wheat 80 days that was higher but still not anywhere close to positive numbers. Her very old school gi says you should have IGG and IGA and ttg readings

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Hubby is just concerned that we are missing what really caused her to be sick and that perhaps gluten really wasn

  jesslynn555 said:

I don't want to take him off dairy and soy at the same time because I feel he needs the calcium, and I can't imagine his diet being anymore restrictive than it already is.

I appreciate any thoughts on this.

Thanks so much,

jesslynn555

He can get more available calcium through greens and things like whole sardines ... and as has been said the diary and soy are harder to digest.

As Ursa asked .. is the whole house gluten-free?

  Beck said:

Hi guys;

I am in need of some info. My duagter and I were recently diagnosed with Celiac. My duaghter aalso has type 1 diabetes. Were were very strict with her carb intake before celiac. Now being on the gluten free diet we are having a horrible time finding the carb ratios

I have been make ing hommade bread. the cookbook I use has the carb count, but not for the servinf size. I have no idea how big of a slice to give her. I have also noticed the carb s are way higher than with gluten flours.

Most of her symptoms are gone from the Cleiac issues, but her blood suagrs are really bad now. Her docs said this would happen as she is finally getting nutrion, so I knew things were going to be hard and having to find new insulin doesages, but this carb ratio thing is killing us and making it all the more harder for us to find the right insulin doesages.

If any one can help me that would be great. Even if I had a general "rule of thumb" carb ratio to go by that would help me with a starting point. The cookbook I use is the Bette Hagman one. I use her gluten-free mix and like I said she has the acrb count but not the serving size.

Thanks;

Becky

If your Doc is correct (and I believe they are) then the ratio's are pointless until you get a new balance.

Her adsorbtion is completely different as she recovers and will probably keep changing as she heals further.

I would think the best thing would be to fall back to testing until this stabilises as your rules of thumb are likely to keep changing..

You might even consider cutting out all breads and pasta whilst her villi recover ???

  That said:

Hi, I didn't get the endo for validation of diagnosis ( I KNEW I had celiac) , but I did get it for staging so I could judge healing a year later. I was actually ok with getting another one (that is big for me because I have such a sensitive gag reflex I can barely get dental x rays, lol!) a year later. I am also a "minimal invasiveness" person, but in the end, I was really glad I did it... just to see how things are going internally. I am not trying to sway you one way or the other, but I thought it might help to hear from someone who is reserved, but has been there and amazingly, done that!

Kids do heal faster than adults, so I can see her responding to the diet very quickly. For most Docs, they want to follow standard procedure or they get uncomfortable for very good (and legal) reasons. They can document everything this way. It is considered the "gold standard" for them.

I can see both sides of the coin, having been there myself, but personally, I was very happy I made the choice to get it done!

If you search this site there are articles about testing that I think you will find very helpful!

this might help to get you started :

Open Original Shared Link

The gold standard really only applies if you DEFINE the disease by that test.

A full panel blood test is actually far more reliable at giving a positive but it all depends HOW you classify the disease. A GI will lean towards calling celiac disease a GI problem and a neurologist a neurological problem ???

Open Original Shared Link

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Unlike antiendomysium or antireticulin antibodies, antigliadin antibodies are antibodies against the extrinsic causal factor for gluten sensitivity. Antiendomysium antibodies may be more specific for coeliac disease, but no large scale data are available as yet on their specificity or sensitivity in patients with gluten sensitivity where the immunological target organ may be other than the gut.

The typical clinical expression of a patient with gluten sensitivity where the sole manifestation is neurological is cerebellar ataxia, often with a peripheral neuropathy.9 Most of these patients will have histologically normal mucosa on biopsy and few or no gastrointestinal symptoms. Both the ataxia and the neuropathy may be reversible with adherence to a gluten free diet.9

If you read the full article biopsy is pretty useless as a diagnosis in many patients and too late for many others. My own analogy is actually what a dentist once said to me..(paraphrased). "tooth ache is pretty poor as a defense againt tooth decay and disease - by the time it hurts the damage is done and the pain is out of all proportion"

I see biopsy the same way....

What does a positive biopsy mean in statistical terms? An easy way to view it is to imagine a game of "battleships" except we have some weeds on a tennis court instead of battle ships

How big does the grid need to be ?

Open Original Shared Link

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The villi help to increase the total area on the outside of the small intestine to the size of about half a tennis court.

So a tennis court is 60' x 120' and half a tennis court is 60'x60' or 720"x720" ... (actually that includes the area around the lines but since its far easier to multiply by 60 in my head and I can't be bothered with a calc it will do ... so that's 518,014 or lets just say 1/2 million 1" squares. (i'll wait while you draw this on paper ) So assuming a biopsy take a 1" square (not a tiny 1/16th or smaller) lets imagine the chance of detecting damage.

Lets scatter say 1000 1" damaged villi (or course villi are only 1/50th that size so thats very generous... and play battleships. However we have to change the rules... usually when you play we say hit or miss but the biopsy doesn't know until later so there is no hit or miss and you only get 6 goes ...

Your chance the first time is 1,000:500,000 or 1:500 and the second time 1,000:499,999 etc. so lts keep that as 1:500 ...

So its rounding down 6:500 chance of finding a damaged villi.

Lets say your cost for a biopsy is $1000 anyone want to play ???

Of course we are not gambling something is trivial as $1,000 we are gambling with our health ...

So what's the real situation?

Open Original Shared Link

This is a more accurate biopsy where they test the biopsy for antibodies (you'd think this would be standard after all that fuss and expense but????)

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Background: We measured anti-transglutaminase (anti-tTG) antibody in the culture medium of intestinal biopsy specimens from patients with suspected celiac disease (celiac disease) and evaluated the relationship between antibody production and severity of intestinal mucosal damage.

Methods: We performed diagnostic testing for celiac disease on 273 consecutive patients. In addition to routine histologic evaluation of duodenal biopsy specimens, we assayed anti-tTG antibodies in serum and in the culture medium of duodenal biopsy specimens.

Results: celiac disease was diagnosed in 191 of the 273 patients. Sensitivity and specificity of the serum anti-endomysium (EmA) and anti-tTG assays were 83% and 85% and 99% and 95%, respectively, and both had 88% diagnostic accuracy. EmA and anti-tTG assayed in the culture medium had 98% sensitivity, 100% specificity, and 98% diagnostic accuracy (vs serum assays; P <0.0001). Twenty-nine celiac disease patient specimens (16%) were negative for serum anti-tTG and EmA; for 24 of these patients, anti-tTG assay of the culture medium was positive. The celiac disease patients whose biopsy specimens were positive for serum antibodies showed the following intestinal histologies: total villous atrophy, 35%; severe villous atrophy, 25%; mild atrophy, 25%; villi with no atrophy but with increased intraepithelial lymphocytes, 15%. None of the celiac disease patients whose specimens were negative for serum antibodies showed total or severe villous atrophy; 77% had mild villous atrophy, and 23% had no villous atrophy but had increased intraepithelial lymphocyte counts. Mild villous atrophy was also seen in specimens from ~15% of patients without celiac disease.

Great a 35% success rate .... ??? (and that is on TOTAL atrophy)

If we include severe it goes up to 60% ...

So we have to be pretty damaged for the biopsy to be positive except by chance...

This leaves 40% undiagnosed ... or wrongly diagnosed with false negatives.

Those 40% will be told they should continue to kill themsleves (sorry eat gluten) and get retested when the damage is worse and possibly not repairable and meantime they are according to Hadjivassiliou, doing themselves neurological damage including the brain and central nervous system ... bah who needs those anyway, I guess the brain is just like the appendix and we can live without it...

Whatever happened to "do no harm"?

My conclusion: Many of us here have neurological manifestations and the work of Hadjivassiliou shows this can and often happens BEFORE any villous atrophy.

Meanwhile patients with +ve serology are being put back on gluten and given brain and nerve damage ....

The biopsy as a gold standard is worse than a poor test.. its actually a very dangeous standard.

Look at it this way .... IF celiac disease was a communicable disease we could spread do you think the medical community would ignore this?

Do we wait for the weeping sores on bubonic plague before making a diagnosis or do they act on the blood tests?

Imagine someone with bubonic plague turning up in hospital and blood tests being positive then being told to come back if they get lumps under thier armpit?

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I wouldn't worry about cat food, just make sure you don't get any on the bench tops and wash your hands and any cutlery you use thoroughly.

This might work if you can get the cat to use a tooth brush and mouthwash afterwards.

Admittedly, cats are much cleaner than dogs in this regard but they are still gong to get some on their fur round their mouth and then rub up against you ... on top of this they will spread the food all round their fur when they clean ..

How much? How big a risk?

I certainly wouldn't want to dismiss this out of hand...

Like the OP said, wouldn't it be nice if was bright green....

On the other side why not just feed the cat REAL food? It really isn't hard to save offcuts, buy some very cheap cuts etc. and unlike dogs you can give the cat bones and all and it will eat around them...

For eating at relatives ....

This is a hard one.... and I don't think there is a great answer ...

Some people will try and get it, others will passingly not use bread or pasta etc. but very few will really appreciate the fact dishcloths and pans might contain gluten... Its really as much a cultural problem...

Most people will not clean the loo with the same cloth as they clean dishes (I hope) but they won't think twice about breadcrumbs... It takes a total mindset change to start regarding gluten as an insidious poison.

  AliB said:

and I am getting some carbs in fruit and veg and a little rice, etc. I think I must be the 'Hunter-Gatherer' type who copes better with protein than carbs!

Thats fine then, so long as you eat some vegatables is way better than non. If your doing that though I'd skip rice, its nutritionally pretty dead ... and instead go for green veg and things which will have a lot of the nutrients you miss in meats and fish alone.

Just also wondering with the yeast infection ... have you tried pro-biotics? It might not be a cure but it might alleviate the carb digestion. I think figures for rats show about 30% less efficient digestion for rats who have their gut flora removed and if you have yeast chance is its killing the good bacteria.

edit: Just thought as well. Its worth a try I once (years ago did food combining) (Hay's diet) noone ever explained well why but most/many people seem to digest better if they eat proteins and carbs separately (a few hrs between)

This does fit I guess if your the hunter gatherer type.

Scientific explanations on this are a bit slim .... but it works for a LOT of people (including me) and many of those people (like me) will be quite vocal and adamant it works... As a scientist it worries me (well only a bit) that its not explained but the rest of me says what the heck.. it works .. its something I now only do if I eel bad, usually after an accidental glutening.

At 20 months the blood test is far more likely to give a false negative... the only downside of starting him on a gluten-free diet is that ensures that all tests will be negative so if you want confirmation later you have to decide if he will eat gluten or not.

As a middle of the road you could get genetic testing to see if he is predisposed.