
gfp
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Mom's cells all have the same DNA. Different cells translate different parts of it into RNA, and then protein. Since the PCR test is on DNA, it doesn't matter what the source cell is.
So for the rest of us (and just to confirm) that pretty much questions the use of saliva and buccal mucosa (cheek cells) for babies being breast fed? (or for the sake of completeness cannibals)
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Okay. I just we will just have to keep an eye out and wait it out then. Thanks!
All that and more ... more being learn and move on!
It is so easy to beat ourselves up over this when really S**t Happens ...
At one point I obsessed over finding the offending cup-cake/CC etc. but really it's only useful as a learning experience and what you can avoid in the future.
Sometimes you will be quite certain but mostly you have multiple possibilities ... and often it might be a random event you didn't even notice... like a relative or friend sitting on the furniture with a bread crumb on their clothes...
Many of these are so unlikely they don't happen but they are also very common so once in a while a really unlikely set of events conspires and ... poop happens.
As a parent we feel a natural guilt that something happened we think we should have controlled but the truth is we can't control everything for our children, we can't even control it for ourselves.
HUGS are the best remedy ... depending on age then immodium (loperamide) can stop the poop and also help the spasms ... and purely theoretically and in my experience also help with the neurological effects such as mood.
You can search this forum for 'brain fog' and 'exorphin' if you wish to explore this side.
Loperamide hydrochloride is not recommended in infants below 24 months of age.
Open Original Shared Link
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This test is incredibly sensitive, and if even one cell from the mom is in the sample, the results may not be accurate. The dot will shift slightly in one direction or another, and you won't be able to tell which cloud it falls in.
I would suspect that mom sheds quite a few cells into breast milk, and from the skin on her breast, so the potential for a contaminated sample is very very high.
Thanks ... that sums it up perfectly!
Other than babies one wonders who else the genetic test is useful for. (A few obvious ones here like I'm actually growing the fetus in a test tube to harvest the kidneys and just want HLA results to check organ compatibility)
Honestly: I really doubt it's the first baby they did the test for... and the email is CYA because of the chance of screwing up the test. This is of course lucky for me asking the question ... unlucky for all those who figured their MD, Ped or the labs would point out the damned obvious!
Are not Leukocytes a component of breast milk anyway? Will these not be replicated in the PCR unless it is specific single cell PCR not to mention shedding cells from the nipple?
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The plot thickens,
I contacted the lab Nikki linked to and asked if with it being a sample of buccal mucosa if the presence of breast milk would confuse the results.
I was expecting some answer about waiting but instead I got the answer that they can't guarantee the process in these circumstances.
My thinking (which may or may not be correct) is the genetic material in breast milk from the mother includes the IgA antigens which all reside in the HLA portion of chromosome 6.
Well, I was expecting a different response (something negative or positive) rather than ...
Dear Stephen,I
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Quest does a Comprehensive Celiac Panel which tests for the antibodies and does the gene mapping. This is the one that i had done on my children. They both came back with the gene and positive IgG. We are going to see a Peds GI at the end of the month. I would suggest doing this test. Also, I work for a GI doctor and this is the first test he does on suspected Celiacs and their first degree relatives.
There is really no point doing IgG when the baby is still breastfeeding and the mother is not eating gluten.
For that matter, if an adult is not eating gluten then there is no point looking for specific antibodies be they IgA or IgG.
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>>The topic is about whether celiac disease increases risk from swine flu. Let's stay on topic, please.
With all due respect the vaccination may be harder on those with over active immune systems.
It doesn't need to be the actual non-live flu viri ... because it could be an immune response from something else in the vaccine.
When a vaccine is hurried (as the case for H1N1) then the longer term auto immune testing is the last to be done.
I am neither saying get it or not here ... rather think about it carefully.
The fact that government sponsored health care is by definition about the overall health of the nation not individuals is relevant. The government wants to protect the health of a nation, avoid epidemics and large scale death ... and it should. This can however at times be at conflict with the health of minority groups such as celiacs.
What is certain is that not everyone reacts badly to vaccinations and that some small groups of people do react badly to some vaccinations. Some people never get flu or colds and many rarely get flu or colds.
I managed to skip chicken pox or at least was not ill beyond a low grade fever whereas my brother was almost hospitalized. My brother almost certainly got it from me....
Its not simple and the message is that what is good for the nation is not necessarily best for you.
Government funded medicare is primarily driven by what costs the least and immunization against flu is cheaper than treating it. It is not a conspiracy in any way shape or form... this is the government being (to some extent or other) careful spending your taxes...
We could argue why pay for medicare out of tax or that everyone should get free medicare ... either way it is still the responsibility of the government to ensure it is spent efficiently. (Many may feel it is not but whether it is AS efficient as it could be is not the question).
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CONGRATS to you both!!!!!!!!!!!
I believe this company in London tests for Coeliac disease/HLA markers (scroll down to Coeliac)
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Not sure of the cost.
Many thanks Nikki, looks just the ticket.
Would still be wondering about US costs so I can compare when I get a cost from this place...
thanks
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Is that in the bill? I don't believe it is, but I'm going to double-check. I've also never heard a single politician say that, and I've been following this closely. Furthermore, the bill isn't going to get rid of the private insurance companies, who will never in a million years make vaccines mandatory, because it's not in their best interest, and they're profit-seeking companies.
Starting rumors isn't going to help. Let's be careful.
To be fair, it is not a rumour but a statement of fact.
Universal Healthcare means protecting the population over individuals.
Where possible one hopes most Dr's will at least "Do no harm" ... but the job of federal and country healthcare is t prevent an epidemic.
Some vaccinations are arguably not worth the risk on a individual basis but make sense on a large scale. It is really that simple and then it gets complex.
Do you have the right to send your child to school without a vaccination?
Sure this can be argued both way's but it comes down to will you take responsibility for your child potentially killing another because you didn't take the risk for a specific vaccination?
This can be argued until the cow pox comes home without agreement but the fact remains federal and national healthcare has primary responsibility to the general public over individuals.
As to H1N1: As several others have said they have not had flu in 23 yrs or even ever.
I have managed to escape bacterial and viral infections for my whole life.
I almost had chicken-pox when I was 4 but it failed to develop .... however I did manage to carry it and give it to my brother who was very ill! I got a slight temperature and time off school but I wasn't actually ill.
I got glandular fever at 21 and typhoid fever at 24.
I have had a few possible colds in the last 40 yrs but then they were probably mainly allergies...
I don't think I have ever had Flu ...
My immune system is compromised because it is OVER active. It will attack gliadin let alone a flu virus.
Obviously others may have tired out their immune systems but the point I'm making is celiac disease alone is not making everyone more susceptible to viri and bacteria.
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The problem is, not having the currently identified and tested for genes doesn't ACTUALLY rule out a problem with gluten. Not only will it miss some (albeit a small percentage) of actual celiac disease cases, but it will also miss a larger (but undetermined) number of gluten sensitivity cases.
Honestly, when the best a test can tell you is "maybe, probably, but we don't really know" I kinda don't fine the test worthwhile. That's just my opinion, however, and other people have found it more useful.
Currently my partner and I had little Ollie on 29 August.
My partner who does not have celiac disease (so far as we know) has been gluten-free during breast feeding.
This seems to be working as he has jumped from 40th percentile at birth (a week early) to 97th percentile in height and mass. He has also yet to be ill, despite being surrounded by people with colds (incl. mom) he has managed not to have any illness at all in his short existence. His immune system and the IgA from mom's milk seems to be doing the job very well in other words.
Mom going gluten-free is just a precaution, plenty of studies show gliadins transferred in breast milk yet noone is sure if this might trigger later development of celiac disease or not.
With this in mind we decided on genetic testing and if he lacks any currently known genes them mom might not stick to gluten-free outside the home.
I'm wondering if we need to send samples to the US or Canada or if we can find somewhere in the UK?
How much does it cost in the US?
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My cousin made gluten free cupcakes for him on Halloween. The next day he was sick. I think residue flour in her sugar or in her flour sifter is what made him sick. Last Sunday he seemed aggressive and a little sick. Monday he told me his tummy hurt and seemed really off. He still isn't himself and his bloated tummy is back. That was Saturday and he is still having watery stools.
So my question- how long does a reaction from being glutened usually last? How can I tell if he is getting sick from something else or if this is one long reaction? Is there anything I can do to help ease the symptoms (beyond making sure he gets enough water and no more gluten)? I have been going through his food and I don't see anything that should be causing a problem- unless it is CC or he is getting something I don't know about...
Sorry if this is a dumb or unanswerable question we are still pretty new at this...
It certainly isn't dumb but it is unanswerable.
As an adult, or more precisely as someone who is extremely analytical I cannot ever say for sure.
How long is for me about 4-6 weeks but with decreasing severity and frequency SO LONG AS I DON'T MESS UP IN THE MEANTIME.
The only way I can tell myself is by being 100% gluten-free which means NO (and I mean NO) possible foods which may have CC or hidden gluten. (including CODEX gluten)
4-6 weeks seems an age but I have at times been able to be 100% guaranteed gluten-free by not having ANY gluten in my home and not eating anything outside my home. I have under these circumstances found that the last possible gluten (excepting airborne or hands) and still had mild symptoms infrequently after weeks.
Honestly, if you're frustrated then I sympathise but if a child is going to school, using public transport etc. then things will happen. Like a lot of parenting you will feel it is somehow your fault... and it isn't... s**t happens!
He will also get colds and from time to time Flu ... and as parents we can do what we can but we cannot avoid every possible danger. Somewhere you have to find a life balance!
What you can do and will be the hardest part is explain this to your cousin!
The more you can do this without blame or guilt the better! (In other words your cousin might get defensive instead of listening). These are the hardest situations, even with an adult! When someone makes an effort but you still get ill. They also lead to pressure and being put in situations where you are not comfortable but find it hard to be polite and refuse when someone says 'But it is gluten free'.
Simply put: If your cousin usually bakes or uses flour then pretty much the whole kitchen is a CC zone.
The sifter and the sugar are spot on for possibilities but so are dish cloths, towels and cutlery.
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I need help understanding how and why Gluten can cause all of these problems!
You might find it easier to swallow (sorry) ... if you look at it another way.
Its not really the gluten causing the problem, its your bodies defenses mis-identifying it.
Imagine you are in a war zone wearing a Blue UN Beret.... well theoretically noone should shoot at you.
But imagine the sniper is color blind... he can't see the beret is light blue... POW.
celiac disease is a bit like this.. your body is 'color-blind' to the difference between gluten and a bacteria or virus.
Its not really the gluten doing the damage but your bodies own defenses. In attacking the gluten in mistake it does friendly fire damage.
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ALL Capt. Morgan rum is spiced.
richard
See there you go again ....
Product: Captain Morgan - Original Spiced Rum
Ingredients: Puerto Rican Rum, Spice and other natural flavors
Product: Captain Morgan - Parrot Bay Mango
Ingredients: Puerto Rican Rum, natural Mango flavors
Product: Captain Morgan - White Rum (38%)
Ingredients: Rum
Product: Captain Morgan - White Rum (40%)
Ingredients: Rum
All it takes is a little web search before you start spouting off.
As I've said before, try reading a bit.... you seem fixated to keep saying ad nausium all distilled alcohol is safe.
Repeating it will not make it true.
Regardless of the distillation process several distilled drinks ADD gluten containing ingredients.
You obviously don't have the education to follow the chemistry behind distillation but its not exactly grad school chemistry so that is not a criticism. I cannot explain it to someone with your education in chemistry is all.
You can at least read what different manufacturers have said about their own products. Instead of saying "Oh they are just saying that and repeating 'all distilled alcohol is safe' actually stop and wonder... why would they say its not safe if it is?
So ignoring your lack of chemistry, why can't you temper your misinformation.
Can you not use words like 'most' or 'probably'.
You are wrong about Captain Morgan, that's a simple thing to prove. Anyone can go to http://www.drinkiq.com and enter the manufacturer and label.
Pete Sawyer used to say "all maltodextrine is safe" until I pointed out that it's not. Now he says ... in the US and Canada.
He made a genuine mistake and when it was pointed out to him he rectified it... its just a normal mistake everyone makes.
On the other hand you have had evidence after evidence pointed out that some distilled drinks have gluten added.
You seem more concerned actually ignoring this and repeating the same tired old phrase instead of actually correcting yourself and more importantly what you tell others.
In a normal society people do make mistakes, people can be unsure. Look... right below.. I made one .. and Tim said he was sure so I looked and found he's correct.
Please step back ... you are wrong, but there is no need to be so upset.
5 minutes research would have stopped you being wrong about Captain Morgan.
The fact is it hardly matters for Captain Morgan, except that the white rum is probably a safer bet.
It does matter that you keep repeating "all distilled alcohol is safe".
People will read this and think its true, their particular favorite tipple might be one of the higher gluten ones.
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Frankly, I can't wait to go gluten-free. I'm still eating gluten because I'm waiting for my endoscopy, though my antigliadins were high, I have osteopenia bordering on osteoporosis, I had celiac as a baby, and I KNOW I have celiac now.
My brain has been so muddled for so long and I've been lacking in energy for as long as I can remember, that I'm just chomping at the bit to finally go gluten-free.
I just have to learn all the tricks about avoiding unobvious sources of gluten.
Susan,
I would recommend you start preparing for the gluten-free now.
Examine what you usually buy and check it out, any doubts then post a question on this board.
Check out alternatives now.... then you won't feel so limited when D-Day arrives. You can even check out some recipes and cook them, being on gluten for the endoscopy doesn't mean every meal has to be gluten loaded.
Baking can be a challenge, gluten-free flour doesn't work like normal flour so you have to reaquire the skill. Do some practice runs now, if they fail you can still eat your gluten one as a booby prize.
How about d-day.... even before your results from the endoscopy you can go gluten-free.
Just a suggestion but why not plan a few gluten-free treats .. make yourself a gluten-free snack for afterwards so your not missing out (or feel you are). You can't eat before the endscopy so you'll be hungry, get some super delicious gluten-free treats ready.
If your blood tests were high the chance is even if the biopsy is negative or in conclusive you can still benefit from gluten-free. It certainly won't hurt! ....
Good luck..
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Seems to me, for a product which is produced in a dedicated facility, there's more chance of gluten contamination from wherever they get their ingredients. And that would typically be a larger company, who can more easily do the testing.
Rice guy, exactly the reason the legislation has to be brought in at the correct place and level of the supply chain.
The problem is the food industry is run by the giants. They have the money and power to lobby but they are the last people who should be influencing any standards.
I appreciate that with the best will in the world accidents can and do happen. A small resto or gluten-free manufacturer cannot exhaustively test which is why they should have the ability to buy guaranteed gluten-free products.
Presently the problem is a pass the buck problem.... the gluten-free bakery can blame the supplier, the supplier the wholesaler of bulk and them the farmers.
My bet is most corn farmers are able to guarantee their corn is free from gluten. Certainly most carrot, potato and tomato growers are and there are plenty of places in the far east where wheat isn't grown within 100 miles of the paddy fields.
Yes birds carry seeds, hence the whole GM debate... but somehow the manufacturers say GM free.... their lawyers are not saying "what if the birds and bees do their thing"... because at the end of the day if it happens they will say, well the birds and bees did their thing.
So the next problem is transport and storage. Indeed this is the biggest area where legislation needs to be made.
If a farmer has a gluten-free crop and a supplier needs it they have no way of transporting it as gluten-free. Make a category of gluten-free food transport and this problem is solved. The haulier is responsible for providing transport which is and always has been gluten-free and certifying the crop at either end.
How does this work in practice?
Well, if the haulier is 100% certain the grain transport truck has only ever been used to transport gluten-free things they can take the guarantee of the farmer at one end and guarantee it at the other. The grain transport log will show each job and what was carried from and to...
This isn't going to cost millions ... it just needs that when new food transport is commissioned it is given an allergen log.
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I don't think I misread. They put the wheat paste into the crozes and then fit the head into the crozes.
Without the pictures its hard to explain but my understanding was the crozes are the 'upright' pieces of oak.
"After the toasting level is reached, the coopers are ready to finish assembling the oak barrel. The grooves inside the oak barrel (called crozes) receive an application of wheat flour paste (while the barrel is upright). After this the crozes have heads fitted in. Put into place with a large mallet, the final hooping is then complete."
However... (and google was challenged by this) I found
http://anythingwine.wordpress.com/2007/11/...2%80%93-part-2/
So it appears your correct and the crozes are the top of the staves (its clearer on this picture)... though honestly I find it hard to say definitively from the quote above... I read it 2-3 times and was not convinced either way....
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I almost never ever say this BUT.....
I think you should consider going onto gluten for the rest of the month....
You were not gluten-free for so long but obviously it worked well....
If you get a positive blood test it will be simpler (although as noted you will probably become gluten-free anyway) but in your particular case you have been gluten-free such a short time and the test is only weeks away.
The reason I say this for you is because after another 4 weeks going back onto gluten is likely to be much worse.... if your recovery is good and your test negative you most certainly won't want to go back in another 4 weeks.
Note: I said consider.... I'm not saying you should but I think you might want to look at what you would do if the test is negative and you were gluten-free before the test. Your SIL seems clued up, perhaps you can also get her input...
(and really I rarely say this but your case is quite specific regarding the testing and timing and most specifically you won the lottery on the free testing so I would add that to the mix on weighing up how important the test results are to you.)
Nothing is stopping you testing negative and still going gluten-free but my thoughts are you shouldmake themost of the free test andnot compromise it???
Welcome to the board btw
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LOL, that's almost funny....
When doing my masters the science library was all relegated to trailers. They were awful in the summer and awful in the winter.... the power was forever going off and the photocopiers seemed to be so old you had to go over the papers in ink after copying....
The arts library (which contained millions of
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I steamed them longer, and they actually came out good. I was taking them out to soon and they were just undercooked mush. I used masa harina, which is what the recipe called for. the husks were a bit of the pain, but not bad once I got the hang of it.
thanks.
I find Tamales are one of thiose things that are incredibly easy once you get the hang of it .
If I don't cook them for a while I loose the feel for how long and the consistency.... and I think its so much about how it feels etc.
I have a few things like this and I usually try a couple first and see how they turn out....then you can adjust the amount of water and cooking times. Masa can be quite different in texture as well. i have two bags here, one is much courser than the other and a third bag of the brazilian equivalent which is the finest.
It reminds me of some clothes labels "This is a natural product and texture and color may vary" .....
Masa tends to be a fairly natural food, and I enjoy the differences but it can make it a bit unpredictable to cook.
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Sometimes it seems like if they can sneak some gluten into a product, they do it!
LOL it often actually seems that way.....
I don't think its the case but I once saw a documentary on pet food. Apparently they add addictive things to some pet foods.
I think the gluten thing is just a symptom of the food industry (emphasis on industry).
Food isn't cooked, its engineered and the food scientists look on how to do something as a engineering feat not cooking.
Case in point, we need to make the flavor stick to the chips.... oh, gluten is sticky so we will coat them in a light spray and then add the flavor.
Food scientists have a whole load of products they can use simply for their properties.
Quite simply I think its a case of give a man a hammer and nails and some wood and tell him to build a chair as quickly as possible.... and he will nail it together. Give him a drill and some dowels and he will dowel it together.
Give a carpenter the same and they will throw out the nails and make beautiful joints.
Give a chef the chips to make and they will find a way to do it without gluten.... but give it to a food scientist and they will dig into their bag of tracks and see what way is easiest and cheapest.
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When I asked the instructor if I should go to the student with disabilities office first he said no, rather emphatically and said just to go to the class this morning. I am not going make any waves about this issue at this point but I am going to do as was suggested as take some measurements and time the elevator. I am so glad I am not under the influence any longer, if I was still on gluten I most likely would have really melted down in front of everyone or I would have lost my temper. I did hold it together till I got home yesterday though.
Did he give any reason ??? Perhaps he thinks you would cause a fuss... but that doesn't need to be the case...
I wouldn't suggest making waves but doing this in as nice a way as possible. Ask how can they help ... not demand it.
Same goes for timing the elevator etc. quite honestly that seems a bit over officious ??? rather just say proximity and availablilty is important. Also like I said you could ask for access to disabled loo's. Don't even make it a "I have a registered disability" thing just say it would help you considerably. (Bonus, all these loos are disabled access)
For years my father qualified for a disabled parking sticker he didn't need. He rarely used it unless he needed to.... as he said how could he justify putting a disabled sticker at the tennis parking while he's playing?
I think what I'm saying is you can just ask the disabilities office what they might be able to do to help. You don't need to register etc. just ask if they have helpful suggestions and such.
Colleges can be very beurocratic amd often putting them in a hard situation legally is not the best approach but be emphatic you are just looking for a little help before something critical happens.
At the end of the day your course is about what you can do academically, there shouldn't be added difficulties for you to overcome and if there are then they are not your main focus.
My advice is be nice about it but firm. Use phrases like "I hoped you would be able to help me" and "I don't really want to cause any fuss but would it be possible to"...
I think your maturity will act in your favor here. They are not dealing with some radical 25 yr old but someone who has made a conscious and brave decision to go back to school. I think anyone has to respect that!
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I often read here that if we have gluten in our homes, we are already consuming foods made in a shared facility.
This is true, but with one important difference in my opinion--we know how we keep our gluten separate from other foods and the steps we take to be safe from cross contamination.
In a factory, we don't know exactly what's going on, so it does become a trial and error sort of thing. Sometimes, we get lucky and reach someone by phone who can explain further (for instance different rooms, form of gluen used, etc).
Bottom line, there isn't an easy answer to this.
This is really true,
There is a huge difference having a bottle of soy sauce in a cupboard for visitors to put on take away and baking with wheat flour.
Even if you spill the bottle you can use disposable wipes and mop it up and you know you did it.
My earlier question still stands (and I have no Kraft products) does anyone have a product from Kraft actually say's "made in a shared facility"?
Like I said, the two are not the same thing.
Oops: forgot to mention....
This is one area where the try it and see doesn't really help.
the whole shared lines thing means the first product off the new run might be contaminated but by the end of the run the machinery is pretty much gluten-free. Or the previous product might have also been gluten-free and then the next product is too.
This is really all part of the lottery with shared lines and facilities. Just because its OK once or someone has no problems with one product doesn't mean its all OK. The product they use might be a completely different one shared with completely different (and much lower risk) products.
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I don't know if this reply will help or not, however I hope it is an encouragement. I started back to school in 5/2006. Just 2 months after my last seizure. I was beyond terrified that I would have one during class. I was having many other symptoms still, one of them being hypoglycemic. I got the nerve up to finally start telling my professors the first day of class and what a relief that made for me. I didn't expect it to make such a big difference for me, but it did. It enabled me to sit closer to the door, which gave me comfort and peace of mind so I could concentrate on the lecture. I know this can be hard, but I would get to class early enough to ensure a good seat and I started to share with others (what I was comfortable sharing). At the time I didn't realize that it was celiac for me, so I just mentioned that I had a seizure disorder and needed to be close to the door. I actually did have an episode in class during an exam. I hadn't eaten before the morning exam and my blood sugar crashed during the test. Terrible, but thank God I had told my professor and other students around me in advance. The professor gave me my orange juice, helped me test my blood sugar with my meter. (It's next to impossible to check when your shaking like a leaf!) All without making a scene and alerting others around me. I just got up and walked outside like everyone else once they were done with their test. My health improved dramatically the longer I was gluten free and I was so glad I worked through the fear and frustration of going back to school. So, I say all that to encourage you to communicate your special needs and not be apologetic for it. You can do it and I wish you all the best! I'm so glad I did.
I know its potentially embarassing but as was said on the other thread.... make it official.
You shouldn't have to put up with this but as glutenfreewithease has just said.... there are lots of things can help and the prof might turn out to be as cool as hers.
Honestly, if I was there I'd go in and do it for you.... surely someone can come in and see the Dean or perhaps there is a MD or nurse???
Going back to school is an extremely courageous thing for anyone to do.... there is absolutely no need for you to make this harder than it needs be.
As you know they are not doing this to spite you.... they are doing it from ignorance because they haven't considered the consequences. Someone has to make them aware and if you don't feel comfortable in person do it by letter or email. Get a friend or family member to come with you.. etc. etc.
You have more than enough to cope with without letting this go because you don't want to make a fuss. As Alison said, you are an eloquent writer ... but instead of the papers why not just write to the Dean or Principal? Explain, its embarrassing to talk about and ask what help they can give you.
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GFP you're trying to turn this thread into a labeling debate, which it isn't. You are also ignoring the fact that you attacked someone in this thread whose sole aim is to help celiacs like you--and you basically accused them of lying and taking money to promote McDonald's.
Both of these really do seem to me to be proper topics for debate at the GIG.
As I said, I worded things badly but there is a very fundamental question. Do GIG get paid for the work they do from the food industry.
This is really fundamental. It's not illegal and indeed this is EXACTLY the situation in the UK with CUK.
In order for CUK to pass a company the company have to pay CUK.... in order for them to use the gluten-free logo they have to pay etc.
There is nothing illegal about this, they do work..they get paid. It does however throw into question their bias.
It also really makes life hard for the small gluten-free manufacturers who actually CARE. They cannot afford the CUK fees, the same goes for private resto's vs chains.
I fully realise SOMEONE has to pay for analysis. However the question for the GIG should be how/who.
I don't think CUK set out to become what it has become, it transformed because things changed around them.
GIG can actually address this now. There are several ways of doing it including setting up a blind fund the food industry can contribute to but does not get to influence how the money is spent.
You conveniently ignore scientific data, and you fail to understand that while setting a personal goal of zero tolerance is perfectly fine and both Cynthia and I recommend this, it may not work for labeling regulations. You also keep using 200ppm, but the actual amount to call something gluten-free is now 20 ppm in Europe and Canada, and will likely be the same in the USA. This just came out today:Aliment Pharmacol Ther. 2008;27(11):1044-1052.
Systematic review of studies published between 1966 and May 2007: Tolerable Amount of Gluten for People With Coeliac Disease
Conclusions: The amount of tolerable gluten varies among people with coeliac disease. Although there is no evidence to suggest a single definitive threshold, a daily gluten intake of <10 mg is unlikely to cause significant histological abnormalities.
As I understand it is TWO limits.
20ppm is for NATURALLY gluten-free and 200ppm for food processed to be gluten-free.
I understand from psawyer (and I have no reason to doubt him) that the most illogical part of the codex (basically the tolerance can be raised to 200ppm by including wheat starch) will not be adopted in the US.
This certainly shows that OUR voices collectively do matter.
I really do think this is a VERY suitable topic for the GIG.....
However:
The paper you quote is as I bolded, a review of previous studies. (I am still trying to get my hands on a full copy not just abstract)
As for scientific data: The paper is not DATA, it is opinion. (perhaps considered opinion but opinion). The same as the Fasano paper, I am not really interested in opinion or conclusions but data. Conclusions, precis' etc. are there to substantiate what the researchers set off to prove. This is often not the same thing. Much as Fasano has done a lot of good stuff he is working with in his won words a billion dollar a year industry in zonulin inhibitors. To his credit the paper does show the results but the conclusion really doesn't fit the results. I don't know the exact relationship between Alba and Fasano, I do know he is a spokesman for them and that they received a $135M cash investment and they are working on a product that will allow us to eat small amounts of gluten.
I think it far more likely that the paper is to back-up Alba's work than simply to baseline a safe gluten level.
Don't get me wrong ... this is his job, he is being paid to do what he is doing. It's not illegal or evil etc. he is a guy being paid to do a job. As a scientist who has written biased scientific papers I would be a complete hypocrite to criticize him. I wrote the papers to prove what my company wanted to prove.
Back in the 90's I presented a research paper at a oil industry conference. The paper itself was IMHO quite groundbreaking but the strange thing was I got pulled up for ignoring a commonly held 'law'. (not that it matters but Wylie, M.R.J., 1963 The Fundamentals of Well Log Interpretation, 3rd Ed, 2nd ed 1957 p72, Academic Press, NYC). This paper had been abused for 20+ years ... and when I said it was useless in the context people who had been using it in that context objected.
I didn't have a big insight ... there was no secret, I just READ the actual paper and the original paper itself said it was only applicable in a certain restricted case)
The reason it caused so much upset was simply because these people had not read the original paper, they had read summary papers that used the formula and referenced it, then other papers saw the reference and included it without ever reading the original paper.
The people who were the most upset were the 'experts' in this field.
Thus when I read any scientific paper I look for inconsistencies between data/results and conclusions. I have since used the same formula to prove there is no oil where there is, because it would be inconvenient for the company to have found a small amount. This is the way that industry paid for scientific research works. I can keep the data and just apply analyses I know are inappropriate for that situation. Its done everyday by millions of research scientists.
I can only draw parallels with the tobacco industry. We spent 50 years of conflicting studies over if it caused cancer or not.
The well funded tobacco industry ones said "no conclusive evidence", we later found out that was because they destroyed it.
Again I go back to the recent Fasano study... One person had clinical relapse on 10mg/d.
Is that not enough all by itself to say for many people 10mg/d is too much?
However the part I can't get over is that in the 10mg/d study group the 'average' villi growth was negative over 90 days.
It is not a huge amount and better than the 50mg/d group but still its negative.
We have to look at this in context... what is negative villi growth?
Scientific fact, the villi are constantly being repaired, just like the rest of our body so negative after 90 days means that they were being destroyed but repaired partly. Even zero growth would mean damage to the villi was occurring if the individual had damaged villi to start with.
So the question is ... what would be the result after 180 days or 360 ? What are the long term effects of "a little damage each day"
This is not answered and this is my concern. We don't know the long term effects but the paper clearly shows damage after 90 days.
Don't get me wrong, its totally possible that it might turn out to be no worse, my opinion though is that until we actually know we should aim for the safe option.
It's only my opinion but I think if this was something we understood the mechanisms of better it would not be considered acceptable. The grey areas surrounding celiac disease give considerable leeway. After all we can't actually decide exactly what we call celiac disease and what we call gluten-intolerance.
Even here you have celiac.com, gluten-freemall and glutenfreeforum, GIG stands for Gluten Intolerance Group.
These are NOT criticisms, times have moved on but again IMHO we cannot start to limit on the best defined group (biopsy proven celiacs) and say the others (neuro/thyroid) are not our problem.
I'm not suggesting the GIG change its name to "The Biopsy Proven Celiac Group", but I think that the forthcoming GIG meeting/conference NEEDS to address where it stands. I'm not blaming GIG ... but IMHO you can't go on and call yourself GIG and only cater for the GI effects of gluten. I really don't think this is the aim of either this site, the GIG or Cynthia Kupper but the times have changed and the outside world has changed so the aims need to be carefully addressed and brought up to speed.
Again, it won't do anyone any good if you make zero tolerance laws because you can't test that low, and any lawyer worth their salt would never recommend that ANY company put a "gluten-free" label on a package if the threshold is zero--don't forget, these companies get ingredients from many sources that are out of their control.1-2 ppm is easily possible, just expensive. But you actually sum it up perfectly.
these companies get ingredients from many sources that are out of their controlThey don't actually have to..... this is just the way it is because of the way the laws are (I don't mean the laws force them they just don't firce them to do otherwise).
The bulk food product suppliers are not accountable, they have no law requiring them to state if the bulk product is gluten-free or not so the gluten-free manufacturer has to rely on them.
(This severely penalizes the small gluten-free manufacturers who buy small and can't afford their own analysis.)
This is what I talk about for the QC/QA chain.... give the gluten-free manufacturers SAFE products to start from.
A large degree of contamination takes place AFTER the crops are harvested because of the way they are stored and transported.
This can change, I don't know how bulk transport works exactly in the US but I do here in the UK.
Food can only be transported in bulk containers used exclusively for food products. You can't transport sand or wallpaper paste in a container then use the same container for food.
It makes sense but really how harmful is sand (after all we just grew the carrots in sand and some of it still clings to them) but that is how the food transport laws are. Wallpaper paste ( I found out the other day ) is basically modified starch.... of course the anti-fungicides etc. are hardly food but you start off with the same starch... some of is it designated food and some of it is designated wallpaper paste (and I guess lots of other thing)s.
The DIFFERENCE is simply what happens after in the QC/QA processes. From this point on the food designated starch is transported in food transports, stored in food containers etc.
It is just a process. I'm sure the manufacturers would prefer not to follow it but its a legal requirement so they do.
There is no reason the law could not state any of the 10 top allergens must be transported in dedicated containers. (Fish and shellfish already are just because of convenience so it leaves 8) or at least the inverse.
If a company want to transport corn they know is gluten-free who do they call? So far as I know (and I would be surprised if its different) the haulage companies do not offer the option of 'food containers not used for wheat'. Why?
There is no market because the raw products are not certified anyway and noone is required to.
Create the requirement and the market will follow.
I can call any number of hauliers to transport inflammable fluids, toxic industrial waste, contaminated hospital waste .....
These markets exist due to legislation, no more or less.
99% of contaminated hospital waste is pretty harmless. Presuming you don't eat it or get it in your blood its reasonably SAFE.
However legislation exists for the 1% that is not.
All I am proposing is gluten-free means gluten-free as well as can be tested. <20ppm would mean <20ppm.
Who can bring this about? Groups like GIG, boards like this one.
Please quit hijacking this thread and start a new one on the topic of labeling laws--this thread is about topics for the upcoming GIG conference.Well OK, I'll stop labeling at that but it is still IMHO a suitable topic for the upcoming GIG.
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I don't have clear answer for you. I react to gluten and soy. A little of either and I get brain fog and fatigue. More soy leads to digestive problems, more gluten leads to headaches.
I eat gluten-free foods 'made in a facility...' with no problems, I only have cc issues when I eat out, and I don't know if it's soy or gluten.
I also noticed that the delay seems to have become 'longer' for intestinal reactions though the brain fog starts off pretty quickly.
The brain fog is so subtly creeping in its hard to say exactly when it starts.... I just feel a little out of it.. then a bit more then more.
Often its my really good friends spot it first....
Genetic Testing For Kids
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