gfp

What is Peruvian food like? I have a friend coming back from Peru soon and he's promised to cook a meal with me because he claims it's a very celiac-friendly cuisine.

eleep

Roast guinea pig?

What I would like to see is some research showing whether babies in utero are exposed to the gluten their mothers eat, just as gluten passes into milk. I think prenatal gluten exposure could be responsible for early childhood celiac. How else could it be that some babies seem to be born already reacting?

Actually this gives a possibility to perhaps offset this

The two celiac antibodies are both unique in respect to two things...

IgA is specific to being tranferred through maternal milk....

IgG1, IgG3 and IgG4 cross the placenta easily and are transferred duting pregnancy.

With suitable hormones the two could be split, one mom carrying and one mom breast feeding.

but the evidence seems a bit like oats.... one study says breastfeeding reduces and another says increases...

The same with when to introduce gluten etc.

I think the whole thing depends on if the mom was gluten-free... during pregnancy and during lactation.... but quite how is beyond me!

Jegstar.... we need you here ....

I've been gluten-free and (mostly) df for 7 months but my stomach is still really bad. I want to simpilfy my diet in an attempt to a) give my stomach a rest and work out other intolerances. I wonder eg if I've got a problem with soy as there's so much of it in gluten-free stuff. I'm thinking of limiting food to: meat and fish (unprocessed), veggies, fruit, rice and potatoes. my problem is finding enough stuff (especially snacks) to fill me up (I know I can't eat beans and I have to seriously limit nut intake). Also, what would I eat for breakfast.

So, any examples of what others eat, especially for snacks or breakfast, would be welcome.

Thanks!

Can I recommend a book?

The Kensington diet, author Steven Twigg.....

Its a Hay's diet/food combining book but also adds cycling of "bad foods" and I find this does help me from time to time.... he also has a bunch of recipes largely gluten-free but also missing out other food groups....

There is a sequel (isn't there always) which is recipees only. so you could get 1st from a public library and if you like it buy the 2nd one.

Unfortunately, the situation is much more complex than that. I substitute in all grades and classes in public schools. Some Down's children are "high achievers", but they still need regular help - perhaps half regular classes and half special classes in a resource room. Others are in high school still learning how to dress themselves and use utensils properly. It is because they are always dependent in some way that people like these feel they can make blanket decisions about quality of life for them.

As I mentioned earlier, I really don't think this has anything to do with DS kids, except being an easy target...

Get ready for this to be used in a more general approach....

ADHD? Asperger's?

and here it starts already.

Size is trying to conform with original article see above... bold is mine.

Open Original Shared Link

August 16. 2006 6:59AM

Children not helped by celiac screening

OUR HEALTH: TREATMENT WATCH

Doing more is not always doing better, researchers at Indiana University School of Medicine say.

Their study found that screening children with Down syndrome routinely for celiac disease does more harm than good.

Tests are capable of finding celiac disease -- an autoimmune reaction to gluten -- before symptoms occur.

But the study found that starting treatment before onset of symptoms is not helpful, the IU researchers said.

Because of that, they conclude that there's no reason to screen for the disease.

Gluten is a protein found in many grain products. Celiac disease harms the intestines and increases the risk of lymphoma, a form of cancer.

The IU study appears in the current issue of Pediatrics.

So... they have already inferred that though they mention the study was on DS children they do not mention that after when they say....

"But the study found that starting treatment before onset of symptoms is not helpful"

"Because of that, they conclude that there's no reason to screen for the disease."

and they manage to miss the point that there is more to celiac disease than lymphoma.

My wife and I want to have children, sometime in the near future. Probably within the next 4/5 yeas. We're both female, but the plans were that she was going to carry them because I'm by all counts infertile thanks to some internal damage.

The fact is, we're now neither of us sure that its a good idea, since I've heard in quite a few places it can be genetic, and her mother has recently [as in, within the last two years!] started suffering the same symptoms.

She's only been recently diagnosed, and I'm trying to reasure her that once she gets the hang of managing her condition she won't feel so bad about having kids. At least if our kids have the same issue it'll make mealtimes easier!

Any thoughts on this?

If you are brought up gluten-free by two gluten-free parents then I doubt this will ever be an issue.

The only issue is the child being classed as "different" at school but this is changing very quickly and you are 5 years away from school. Not to mention the child is going to in some respects deal with being different either way...

Your partner and now wife has accepted this part, I can't see the issue from a coeliac POV. IMHO I would say the fact you mention elsewhere that you are both still young is a better reason to defer. It could be that your wife is just not ready to accept having a child yet with the responsibility and change of lifestyle and is using this as an excuse. Perhaps she isn't ready to carry a child for 9 months... heck it would frighten the heck out of me....

I suggest talking to her about the whole issue... being coelaic is not a reason not to have kids at all. Not being ready is a perfectly good one!

Proof the UK system sucks.

Wheat/gluten has made my partner feel awful for ages. We went backwards and forwards to several doctors, and got all sorts of misdiagnosis- IBS, stress, anxiety, all the above. In the end, we paid out to get a private test done, which finally diagnosed her intolerances.

Despite this, the doctors are STILL refusing to even do a basic food allergy test, claiming that it isn't neccesary. We're only 18 and 20 and really being treated like children in this. What do we need to say/do to convince the doctor that this is something we need to do, without actually pulling a gun on the poor guy? There is a lot of help available for people who have been officially diagnosed I know, but they won't even take the first step in diagnosis.

As it is, we've cut out all wheat/gluten and she's getting a lot better, but we could use the financial help and acess to dieticans/support groups.

First suggestion is change Dr..... easier said than done ! But you can visit friends/family and see their Dr. as a guest. cost = minimal

Otherwise

I suggest taking a vacation to Italy and then visiting an emergency room.

cost = £29... + cheap hotel. riskis they might not want to do tests which involve follow-up. You would have to be specific and say you are usually gluten-free but because you were visiting Italy you couldn't resist Pasta and since your GP wouldn't test you and it wasn't confirmed you had tried some...??

or

come to Paris and just see a Dr. I can give you the names of 2....

Cost ... £29 + hotel... + about €40 for the Dr. which you can claim back via NHS if you have a lot of time/patience. + price of testing. (Don't actually know but I can ask)

I can guarantee you in Paris that you will be tested... either same day or next day.

I think of it like this, everybody's immune systems are different - if we were both in a room and somebody who had a cold sneezed, which one of us would get sick first? How long would we be sick? And how badly would we get sick? Alot depends on our individual, unique, immune systems.

How each of us would react to being glutened would also be a "unique experience".

This is true but a little aside.

I know I wouldn't be the one to get the cold, I don't get colds or most other viral/bacterial infections and if I do very very rarely. I don't remember my last cold but I know its more than 5 years ago.

The thing is I'm not sure I ever had colds.... at least often. My colds were always out of synch with everyones, when flu went round the office I was the one turning on and off the lights....every single person had flu except me.

What I used to think of as colds were in retrospect allergic reactions. My last cold reacted to antihistamines and the Dr. told me it wasn't a cold it was hay fever. I had just spent years being told that this was a cold ....

Think of it like being told this is red by someone colorblind....

I can however get a "cold" by walking through a perfume dept.... I get blocked nose and streaming eyes, headaches and fever...

I'm not entirely sure anymore how many times I really got a cold.

Just as a corallory.... I also had 'food poisioning' every week for 10 years! (prior to gluten-free) when I finally succumed to a nasty strain of typhoid I found its different. Still I managed to live through a bout of typhoid and kick the worst in less than 3-4 days without medical attention, my ex wife was hospitalised for 3 weeks.

My immune system is not weak... its overactive. It will even attack non viri like gluten!

Most people don't realise that its not the virus usually causes elevated temprature, its the bodies immune system.

Its not the virus makes us vomit or D its the body trying to purge itself.

People however have one of the lwest body temps of mammals, only pigs are similar but cats and dogs, horses and livestock all have much higher temps so our raising temperature isn't so effective at killing the virus.

Having free sugars in your blood causes cell degradation of the bonding collagen.

This is one of the least frightening aspects of eating lots of sugar.

While peanut allergies may not be rarer than celiac disease, they are certainly rarer than gluten intolerance.

And I am certain that there is more celiac than ever and at earlier ages because people are eating more gluten than ever in the typical American diet.

I agree .... but it is also an awareness thing.

Those seats on planes are awfully close together.... back in the "carry on days" i would take my own food and have someone next to me from my perspective "throwing" bread crumbs into my carefully prepared gluten-free meal.

Hence I learned to wait .... then ask the person to please be careful, I have an allergy.

Sometimes it works and sometimes you have two heads!

The difference is try asking the steward to change seats because of celiac .... if it was a peanut allergy then they would respond but celiac? never heard of it.

I wonder where I might find this "debate", as a newbie it is interesting to me. The slightest amount of grain alcohol causes me pain.

I have read on gluten free sites that distilled alcohol is safe. One scotch was my first accidental glutening and for me confirmation that gluten was a huge problem for me. I can drink potato based vodka.

There is a European gin that has many herbs in it, I'd be curious to know about that one, it comes in a turquoise bottle, makes a delicious martini, mmmm I must be feeling better , I must go looking.....

Bombay saphire?

Please... just use the search feature.

We have discussed this to death and it can't be proven either way.

In theory it should be safe... but many of us do react. The overal chemistry is very simple but the detail of that chemistry is very very complex and not something can be solved by this board.

What it comes down to is if there is an element of risk ....should we take risk. It also comes down a little to belief, what do you want to believe and is that belief enough to overcome the fact many of us report reactions.

Are we perhaps making the symptoms up or denying we might have been glutened elsewhere.....

The strongest arguament you have already made and that is some of us definately do react or believe we do.

I agree with that, and think of all the knowledgable people here who have posted that they went to a doctor that told them - kids can outgrow it or - its sucha hard diet to stick, a little gluten is Ok,. how do we know what medical doctors told this family?

and even if they came here..... looked at the forum, many poople still believe doctors know it all so if the doctor said it was ok....

I have been judged myself - when I give my son some ice cream or a piece of chocolate - one lady came over and said ( in jugemental tone) - isnt your son diabetic? You should know better! Yeah, you're right lady I do - I counted the carbs, he just biked 8 kms and he is allowed sweet treats - in measured amounts. The same person told me if I avoided sweets, he wouldn't need insulin

I think you just covered what I was trying to say.

What worries me is that we don't know the details here and we don't know the circumstances and we don't know a lot. The same dr. may have said the same to many others... the kid might have behavioural problems ... we don't know... for all we know the kid might have been given 3 years to live ! Please take a look at the DS thread where a bunch of Dr's are advotating not treating DS kids for celiac.... I don't agree but compare the two.

As someone said, some people are mandated to report this because its their job .... but anyone thinking of doing this should take some time out and visit a care home and see if they think the kid would be better in the states care.

Some kids on certain meds can be a danger to others if these are not taken... this kid is endangering his health.

As for 15 and majority.

Sorry but when I was 15 I was working full time, in charge of the household expenditure and negotiating mortgages for my sick mom. I was not a particualrly mature 15 year old either.....

We had a incredible post on here a few weeks ago by a (I hesitate to tuse the word girl) very brave and responsible young lady who had through consequences had to take responsibility in her household. I seem to remember she was around 15.

I, personally react to Gin. (And all other distilled grain alcohols).

Again, not to restart the distilled-alcohol-safe-or-not debate, my advice would be to have a glass (or should I say a Gin drink), but only one, moniter yourslef to see if you react. If you do, don't drink it anymore. If you don't react - GREAT!

FYI, my molecular biologist friend says that with distilled alcohols, the more expensive, the greater chance you won't react, so I'd say go for the top-shelf stuff.

Hope this info helps.

Lil

Not to reopen the debate, I agree with both of the above.

My experience with grain alcohol is I react to either more than a single measure and/or repeated ingestion.

I am often able to get away with one..(I try not to but picking up a vodka and X instead of rum and X).. but if I do this a couple of days on the run then it gets me.

I say this because I don't think a single glass is diagnostic ...

Traditionally gin is made form the cheapest and worst distillate, this was the original reason for the flavoring and London gin's were the drink of the lowest classes. Obviously top shelf stuff I guess is made with a bit more effort but ...?

The thing is celiac is hard enough.... we all make mistakes from time to time or get CC'd. Adding something you might or might not react to just adds confusion... it can mess up finding the culprit from other sources if you are unsure ...

gfp -- what if it's negative?! then i'll be pissed... because I'll still be convinced I have it.

Then I think you have your answer.

I agree, your blood tests are positive ... if the biopsy is negative then you just cast doubts as to sampling, expertise and in your own mind.

I don't think a well sampled and interpreted test is going to be... but why put yourself through it and eating gluten for weeks just to get this extra cert.

Your options are go gluten-free now or not.... because the biopsy is part of not.

If you want a extra level of proof then go 100% gluten-free.... no eating outside the house and nothing you even think has the slightest chance of being gluten-free... sooner or later you slip-up and you have a reaction, even if your asymptomatic you will notice after 3 months of being gluten-free. Think about it like a smoker who quits for 3 months... if they have a cig after 3 months they will really notice! You might feel asymptomatic but chances are you will have some different feeling .. but the major part is you are getting better while doing this test whereas the aim of the biopsy is to actually damage yourself to the point where it can be seen.

As far as I remember the chance of a false positive from a full celiac panel is down to lab errors or accidents.

Various tests only kick in at certain damage levels .. once the gut is damaged and the antibodies make it into the blood ...

You can start here

Open Original Shared Link

and then follow the related links.

The enterolab tests aim at catching this earlier before the gut-blood barrier is compromised, a false positive in this case in reality means you are in the early stages.... this is the whole idea of the tests to catch it before damage is done.

I think I would send off for the enterolabs kit....

I think it is the most sensitive in terms of exactly what it detects but then you would have a definitive answer.

Lets hope it is celaic, its easily treatable just by diet and if you are really really strict, especially at first pretty quick...

Quite a lot you describe sounds fairly classic ... so it seems strange they are going to these lengths and haven't tested just to dismiss the possibility.... but then I had ten yrs of acid and gaviscon and pains and cramps and... well thoughoughly miserable and the GI Dr. said take ranitidine and eat round it....

Well considering the way oats make me feel I think i'll just be better off Not eating them at all! Thanx for all the information and links! you guys have been so much help!

Mandy

I don't have any instant reaction but I have so far avoided them....

CC bothers me and the disputed status but mainly I just think if I do eat them Im always going to be wondering when I get caught out "was it the oats?"

Last year i had a funny episode for perhaps a week.

I thought I'd been glutened at first because i got a fever and D and then my keyboard started growing and shrinking and the screen doing the same, all very very weird. Then other things started doing it ... not just growing but distorting ...like watching shapes form in clouds..??

Then i started with semi hallucinations.... I say semi because I wasn't seeing things not there but for instance a piece of paper fluttering in the subway I thought was a mouse.

However this is kinda like getting back from camping or something where you have been infested with mosquitoes or ants... and you tend to keep seeing them everywhere....

In the end I put it down to food poisioning....

Actually, if you are talking about kids, ask ANY kid about quality of life and he will say, "being near Mommy." Ask a teenager or a young adult with Down syndrome, and you will get a variety of answers, but "being near Mommy" is not likely to be one of them. They might learn slower than the general population, but they are not permanent children. I know that if you asked my 15-year-old son about his quality of life, he would probably answer with some of his life goals. These include being in a rock band, attending Auburn University, and living on his own, just to name a few. All goals very much worth living for, for any person

Also, a person with Down syndrome has almost the same life expectancy as anyone. The numbers that show a short life-span are flawed--they include very old data from when people with Down syndrome were placed in institutions. They also do not factor in the higher incidence of early deaths due to heart problems. (Forty percent of babies with Down syndrome are born with a heart defect.)

This is largely the point....

They also do not factor in the higher incidence of early deaths due to heart problems.

We don't know what figures this study used but we do know they were talking costs per year of life saved.

I would hazard a guess that they choose the worst possible figures to make the case....

Actually, if you are talking about kids, ask ANY kid about quality of life and he will say, "being near Mommy."

Yes your correct but then that's what Im trying to say.....

I don't think this is isolated as much as a cheap shot. Actually I think its a pretty sick cheap shot.

and the reason I said "be near mommy" is the article is specifically about screening children ...

They might learn slower than the general population, but they are not permanent children.

and yet they are being classed as "well if they have celiac then why bother messing up their life.....just let them eat gluten and be ill"

What I don't understand at all is why not diagnosing anyone so they don't need to go on a special diet is justified... you can replace DS kids with hispanic kids and say on average hispanics have lower income than average... (I don't know if this is true, its just a example) so there is no point subjecting them to a expensive gluten-free diet... you can say African Americans live shorter lives than their caucasian counter parts (this is true) so we shouldn't bother about them either....

The point is (I think) the whole arguament is fundamentally flawed... but it thinks gets away to a certain extent just because its targetting DS kids....

Well, I can only speak for myself and the way I hope to raise my sons when they are 15 (they are only 4 & 5 now). My Celiac will not be eating gluten while in my care and certainly will not be having sex in my house, protected or not . Of course I will teach them how to be safe. I am not naive to what kids do (I am a teacher) but I feel allowing it at home says it is ok. Allowing inappropriate behavior in the house will not stop the inappropriate behavior outside your house, it might just be more inappropriate outside the house. Scary thought, no more debating. This has gotten off topic. To each his own.

Nic, you have 10 years to you get to this ... and I'm sure you will do a great job

I think we agree mostly and really what I'm saying is that they are your kids and unless its something really dire and immediate like not giving insulin then it should be your decision and what I think shouldn't affect you certainly not legally and I certainly shouldn't be judging you for doing your very best you can.

What I'm saying is I don't support it and I don't support marriage at 14 either... but that the distinction in the particular case of a 15 yr old being referred to as "child abuse" is IMHO not taking the term child abuse seriously nor allowing the facts of the case.

However, the parent will not stop the child if he tries to eat gluten and often will give him food with gluten, as to not make him feel like he's missing out on what everyone else has.

I think this is stupid but I don't know the details.... you might be right that permitting it in the house won't stop anything but equally if the kid is 15 and stupid enough to want to eat gluten against the consequences I just don't see how the parents can stop him or her without resorting to other things that could equally be classed as child abuse. Most off all i think intervention by social services and putting the boy into care is likely to do more harm than good.

I hope to raise my sons when they are 15

I understand what you're saying, and I'm questioning my biopsy at this point due to what you are saying -- but 4 different doctors have recommended the biopsy to be ABSOLUTELY sure, and to make sure it's not something else....

It's hard to ignore 4 doctors (and trust people I don't know online) & as much as I research online, there isn't much conclusive evidence to go either way... so what to do? Also -- regarding the endo, my insurance covers it, and I already pay an arm & leg for it - so they might as well pay for this procedure...

Again, the majority of things i have read/seen/heard recommend the endo... that is why I'm doing it.

If you can give me any research you have, that would be great -- may call my GI doc to discuss this..

Thanks!

You can start here:

Open Original Shared Link

This hows why biopsy is ineffective as a diagnostic

Open Original Shared Link

I'd much rather not have something to eat than put other people at the risk of anaphylaxis.

But maybe that's just me.

No I agree but I agree with eKatherine too.

It goes a bit further, I don't want the person next to me eating a crusty roll and spilling crumbs over me either. I don't have two heads!

Looks like I'm the only one whose symptoms have gotten better since going gluten-free

I don't think its that but the fact we seem to go through cycles... often early gluten-free can be worse and then get better and then long term we get glutened later and think hey it can't have been this bad EVERY TIME?

Its really subjective and hard to pin down and I think that is why I didn't respond earlier.

I can understand your confusion. Many Dr.s are still operating under the "biopsy as the gold standard of diagnosis" methodology, this way of thinking is quickly becoming outdated as the experts are starting to realize that the blood tests are more indicative of what is going on, and that positive dietary response is the best diagnostic tool of all. Also, they make a pretty penny off of those surgical procedures.

My Dr. told me when my blood work came back positive, that there was no reason to put me through the biopsy. IF the blood work was negative and they still suspected Celiac, now there would be a reason to CONSIDER getting the biopsy, BUT, it's so much easier, less costly and non invasive to simply try the gluten-free diet and see if your symptoms improve. If they do then viola! you have your answer. Since you already have positive bloodwork, you do not need to do the biopsy to confirm it. Once you do the diet 100% and stick with it, you will feel so much better and will have no doubts... at least that's what happened with me. Within a few weeks I started feeling much much better, and a bonus for me, I've lost over 100 pounds since my dx 3 1/2 years ago.

I quoted because i wanted to add to this... I agree 100% with nini.

What you have to consider is if the biopsy would be negative ?

You have +ve blood work but what exactly would a -ve biopsy mean to you.

IMHO if you have +ve bloodwork and keep eating gluten sooner or later you will have villi damage but why deliberatly damage them? Some people say you don't have "real celiac" until you have villi damage personally I think anyone who sets out to deliberatly and systematically damage one of the bodies organs so they can say they have "real celiac" has a screw loose. (If they realise this)

There are valid reasons for biopsy, insurance or checking for other damage but as a diagnostic its too late... it only detects after the damage is done.

Hi, my reference to a insulin dependent child was on inferring that the Celiac is equal to the diabetic. It was simply meant to question should we as parent ignore was a doctor perscribes to treat our children because the child does not want to be different? And isn't a gluten challenge only done to prove the Celiac exsists? I was under the assumption that once a person is diagnosed there is no need for a gluten challenge. And in our homes, we should at least try.

As far as a 15 year old cheating on the diet or smoking for that matter, we cannot stop them. But, would you let your 15 year old light up in your house?

Not trying to debate, really very non confrontaional, but I feel very strongly that it is a parents job to protect our children againt harm when we can.

That's OK, I think we both agree "strongly that it is a parents job to protect our children againt harm when we can."

but the problem is the whole thing is a minefield!

As far as a 15 year old cheating on the diet or smoking for that matter, we cannot stop them. But, would you let your 15 year old light up in your house?

That depends, if I thought the option was that 15 yr old going out and scoring some coke or heronine.

Its similar to having a underage child having sex. You might not like it and you can say "not under my roof" but that doesn't stop the problem and in the end having safe sex in the house might be a better option than unprotected sex with someone the parent doesn't even know in his car.

My girlfriends mother was brought up by a very strict (extreme) catholic and wasn't allowed to date guys with cars (because naughty things happen in cars) ... but dated guys on motorcycles and went to the lake instead.

One of my best friends moms at uni was a drug councellor and told him if he wanted to try pot he could do it at home but he most never ever try acid or hard drugs. As it happened my friend wasn't even interested in trying pot ... but perhaps he would if not for this conversation! Who knows

should we as parent ignore was a doctor perscribes to treat our children because the child does not want to be different?

I don't wanna upset you since you obviously don't want to upset others ... but if your child is grossly obese and the Dr. tells you then this is kinda the same. The thing is I think each situation is different.

Kabowman for instance has a unique case because they are all unique.

Criminalising this is going to take away that unique assessement IMHO... once precedent is set it as the word suggests sets precedent for future cases.

we file all the time if a parent does not give a child a psychiatric medication- it is considered medical neglect until the child is 18.

And here is the problem.... does a 110lb single mum get charged because she cannot hold down a 300lb 17 yr old psychotic son while she forces the medication down his throat?

What is the option, putting the guy in care until his 18th birthday ?

Just as another way to look at this

Open Original Shared Link

Quite a few states allow marriage with parental consent at 14. (and New Hampshire at 13 for a female)

IMHO if you are old enough to be married you are old enough to follow a diet or not.

I'm not suggesting 14 is a good age to be married.... but looking at the two side by side ....??

If the 15 yr old was being given gluten against his/her wishes then this is another thing.

I'm having a reaction to something - maybe Lay's Classic Potato Chips?

This is the real frustrating thing!

I have been though similar, you have several different suspects and can't really work out which!

Its even worse if sometimes they seem to make you ill and sometimes not.