
gfp
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The other thing people need to remember is that Amy's is not Glutino or gluten-free Pantry. Their foods are not dedicated to the gluten-free population- they are VEGETARIAN.
For some it could be the degree of CC (but when I had my worst reaction they sent a sample to the University of Nebraska from my batch and it only had 33 ppm which is not a lot). It could be that some react to dairy or soy in their products.
I suspect the combination can be a problem:
I am hardly allergic to either Soy or Casein, unless I get glutened!
33ppm is 'not a lot' in some ways but certainly enough?
Moreover: Your worse reaction doesn't mean the most gluten in a batch ... it could simply be an accumulation over a week or so.
I know myself I can often get away with a slice or two of CODEX bread... but I know I can't do a loaf .. even over a week. Eating Amy's (and other similar) even if it is 15ppm on a regular basis is I suspect going to get a lot of people ...
Also: 33ppm is also a HUGE amount in terms of cleaning a production line if you compare it to a lab. For a lab to have 33ppm contamination in equipment would have them closed down. It is beyond a forgivable accident by a factor of several hundred ... so when it comes to cleaning equipment with allergens the same standards should be adhered to.
The reason I point this out is that there is cleaning and cleaning....
It also will depend massively on WHAT is being prepared first...
I think a classic example of uncleanable is a pasta machine... Its a combination of the complexity of the machine and what goes through it.
A lab which had contamination of that amount would be closed down: A food manufacturer? Nothing...
Back to my point: Even though it contained 33ppm there is no comeback ...
If a lab had equipment it couldn't clean it would dispose of it.... not because they want to but because they would be closed down of they got discovered.
If labs can do it then why not food manufacturers?
What happened to the batch ? Was it recalled? Again .. no comeback because nothing is legally binding.
Bottom line is if you are sensitive or getting sick all the time, it's probably best not to eat processed food until you figure out if you are intolerant to other foods, healing etc.Nearly all processed foods carry the inherent risk not to mention the addition of other allergens which can compound the problems.
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I got hit with a real bad virus when I was 25 and that affected my stomach and intestines, and had symptoms too, BUT they dissapeared as well, and didn't really take off till I had turned 28, I am almost 29 now. I was under severe stress which I know woke it up.
The most important word in that is symptoms.
As I perhaps explained poorly earlier we have symptoms we know about and symptoms we don't.
As others have alluded, there are also symptoms we didn't think were symptoms at the time but can look back on and retrospectively see were.
The problem is that the symptoms we cannot see are damaging us as much as the ones we can.
How our body expresses them can change and what else is going on with our body can also change the way our body expresses the symptoms.
celiac disease symptoms can be classed in different broad groups:
Note many of these actually have opposites: One body expresses the same thing entirely differently!
1/ We have GI symptoms like diarrhea/constipation and cramps. Annoying as these are they are in themselves minor and if we are getting enough fluid harmless if often embarrassing.
2/ We have symptoms due to malabsorption of vitamins, minerals and other nutrients: These can be seen as reduced bone density, obesity/underweight and complications arising from lack of nutrients or vital vitamins/minerals.
3/ We have long term stress problems on our immune system because it is constantly working and long term cancer issues because the villi are not designed to be constantly attacked and repaired.
4/ Direct neurological symptoms from depression to brain fog.
Unfortunately most of the symptoms <b>we</b> can attribute to celiac disease fall into the annoying but not in themselves serious type (1). Just as one person may get diarrhea and another constipation shows just how the symptoms themselves are just expressions of what is really happening deeper inside.
Pregnancy/Childbirth are stress factors on the body.
They are accompanied by huge hormonal changes and nutritional needs. This changes the ballpark the game is played in BUT they are just factors which further stress an underlying condition like a bad viral infection.
The presence of gluten in a celiac is a constant antagonist. At some times in our lives it can be minor and other times all consuming but the underlying reaction doesn't change once triggered.
Our body may mask it (in terms of group 1) but the serious consequences of groups 2-3 are ever present.
Long term health risks are no lower for the immune system or cancer if we show external symptoms or not.
Malabsorption may be less or we may just be replacing cells as fast as they are destroyed ...
One way to view this is that the villi are in a constant battle with the antigens.
At some times (when we are younger) they will repair more quickly than being destroyed.
As we get older our ability to self repair diminishes: At some point we destroy just slightly more than we repair.
As soon as this happens we hit a spiral ... as more and more villi are destroyed our ability to adsorb nutrients is reduced and hence our ability to repair is reduced.
Pregnancy (or other parasites since this is a fitting description of pregnancy from a celiac disease perspective) can cause this balance to tip.
However this doesn't mean that we were perfectly health before, simply that we were slightly on the side of repair faster than destroy.
After pregnancy and as hormones settle back (depending on breast feeding or not) .. you could wander slightly over the side of repair faster than destroy. This however will be temporary! Meanwhile it is still damaging you even if the symptoms you feel are less obvious!
As far as the baby
If you are eating gluten then the baby will get gluten!
There is no way not to short of you shower every time you have eaten gluten and before you touch the baby .. breast feeding or not babies will and do put anything and everything in their mouths. This includes your hair, clothes and stuff and anything you touch after you touch gluten.
Every fallen crumb can land on a toy ... it really is that black and white.
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P.P.S. With regards to the rarity of celiac and lupus occurring in the same person:
Open Original Shared Link
J Clin Gastroenterol. 2008 Mar;42(3):252-5.
Adult celiac disease followed by onset of systemic lupus erythematosus.
Freeman HJ.
Department of Medicine (Gastroenterology), University of British Columbia, Vancouver, BC. hugfree@shaw.ca
BACKGROUND: Celiac disease has been associated with autoimmune disease (eg, autoimmune thyroiditis) and the appearance of different autoantibodies (eg, antidouble-stranded DNA). Conversely, tissue transglutaminase antibodies have been detected in autoimmune disorders, including systemic lupus erythematosus (SLE), but cases of celiac disease with SLE have been only rarely recorded. METHODS: In this study, 246 patients with biopsy-defined celiac disease were evaluated for a prior diagnosis of SLE on the basis of American Rheumatological Association-defined clinical and serologic parameters. RESULTS: There were 6 patients with celiac disease and SLE, or 2.4%, including 4 females and 2 males. Their mean age at diagnosis of celiac disease was 44.7 years and SLE 50 years. In all patients, the diagnosis of SLE was established from 2 years to more than 10 years after the diagnosis of celiac disease, with a mean of 5.3 years. The celiac disease in all 6 patients responded to a gluten-free diet with histologic normalization of the small intestinal biopsies. Despite this small bowel biopsy response, SLE appeared later in the clinical course of the celiac disease. CONCLUSIONS: This study suggests that SLE occurs far more frequently in biopsy-defined celiac disease than is currently appreciated, and detection may be more likely if the period of clinical follow-up of the celiac disease is prolonged.
PMID: 18223501 [PubMed - indexed for MEDLINE]
Why oh why do researchers always want to start out by making a study invalid from inception?
Why biopsy proven ? They are happy to use the serological testing for SLE but not celiac disease???
Hmm.. sounds a bit like GI's being over possessive about celiac disease and making sure it is classified as a GI disease not auto immune.
They have completely missed the point here. Any idiot genetics researcher knows that the auto immune HLA carries the MHC. There are established markers for antigen response to gluten in celiacs which the GI's have chosen to completely ignore.
Some very cheap testing of immunoglobulin response could have actually shown who had SLA and celiac disease and perhaps even identified the genetics responsible in HLA-DQ2 & DQ8 but instead they set out to produce a misleading study that keeps celiac disease firmly as a GI disease.
How hard would it have been to monitor the IgA ad IgG response in the patients and establish a correlation (or not) between them and SLA?
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Amy's does a lot to prevent cross contamination and they have improved their process greatly in the past few years. Here's a recent email from them about this:
Our gluten free products contain only the ingredients listed in the ingredient statement. There are no hidden, unlabeled ingredients. We understand that it is critical that these products be free of gluten and we take this very seriously.
A wide range of activities and cross-checks are completed to ensure that cross contamination and/or inadvertent use of the wrong ingredient does not occur.
Examples include:
- Full shift manufacture of products with complete clean-up of all food contact surfaces between products. Pieces of equipment that come in contact with the food are cleaned and sanitized prior to the manufacture of the next product.
- Separate item numbers for all ingredients; these are checked by two individuals on receipt of the ingredient and three people on use of the ingredient to confirm the correct item is used.
- Use of colored tags, papers and containers in production as an addition visual check to ensure intermediate components are not interchanged.
- Designated areas for flour use to control airborne gluten and minimize its spread.
- Bar code readers at packaging lines to ensure correct package is used with each product.
- Spot screening of ingredients and finished products at University of Nebraska (FARRP - Food Allergy Research and Resource Program) to confirm there are no unlabeled allergens (utilize tests for gluten, soy, milk and peanuts).
What does that guarantee?
If they are deliberately misleading nothing here is actionable:
What exactly could you sue them for if you had food analyzed and found gluten?
Specifically:
Spot screening of ingredients and finished products at University of Nebraska (FARRP - Food Allergy Research and Resource Program) to confirm there are no unlabeled allergens (utilize tests for gluten, soy, milk and peanuts)
So what it doesn't say they would withdraw a product if an allergen was found. It means nothing and does not specify what tests and sensitivity are used nor how often (once in ten years or once in twenty??)
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Wheather I were to nurse the baby or not genes play a huge role. I could only hope and pray that my children do not get what we all go through. It is not fun by any means.
Genes determine if you can get it ... and without the genes you are not going to get it although we don't yet know exactly which genes sequences do and which don't outside of the DQ2 and DQ8.
However having celiac disease may not be fun but is certainly not a serious condition by itself once identified.
It is not a hardship not to eat wheat any more than it is a hardship not to eat live ants.
If you want to feel bad about not being able to eat live ants then you can, same goes for wheat. The difference is that is harder to avoid live ants in your food than wheat, even on a picnic.
People who have never tried heroine or crystal meth do not hanker after it ... we don't wake up thinking .. Oh I could just shoot some meth today ... and it is the same for kids really who never ate bread.
Hundreds of millions of kids have grown up, lived and died without ever tasting or missing bread... Pre-Columbian Americans did not wake up every morning thinking .. "Oh my Quetzalcoatl ! My life is so incomplete without something I have never heard of that my language doesn't have a word for but is a bit like maize".
People did not wake up in the night in 15C Europe and think OMG, I someone needs to discover potatoes.
If you think about it this way then its easy to think that celiac disease is no hardship ... avoiding being forced to eat wheat is the hardship!
Either way you can reduce the risk by breastfeeding whilst gluten-free.
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My husband has cinnamon rolls and Fruit Loops in our kitchen. By the logic presented here so far, I'd never be able to call anything I cooked in my kitchen gluten free because it's a shared facility. And... well... I'd have to disagree with you on that one.
To be fair the difference is WHO gets sick.
The problem is the law allows it and Amy's are a business.
The primary reason for a business is to make as much money for shareholders as possible ... the second reason is to provide as much money to shareholders as possible.
Whilst companies are allowed to label gluten-free when it is not they will continue to do so.
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A gluten-free carrot is the same price as any other .... (in other words there is a lot you can eat which is no different in price to non-gluten-free)
Noone has to buy gluten-free bread or pasta ... it is not like we have to have it. (although it is sometimes convenient)
I buy some but very little: I buy gluten-free soy sauce, Kallo stock cubes (which are a little more than others) etc. but I doubt being gluten-free adds more than 5% to my food bills per month and probably a lot less.
There are two keys IMHO:
1/ Adapt what you eat
2/ Adapt how you shop...
Because of the ways supermarkets place food these really become one until you learn to ignore the supermarket product placements.
Plan on 'naturally' gluten-free food, instead of something that needs a substitute, substitutes are often both poor and expensive.
Find a few staples of 'normal' food that is gluten-free, find a real gluten-free corn tortilla ...
If you search the web for gluten-free recipes you tend to find a lot of 'replacement' food.
For example a chilli is easy to make naturally gluten-free .. just use corn starch as a thickener and other than that cook normally. (you could even argue that chilli shouldn't have wheat flour) .. but ...
Onions, meat (or not), beans, cumin, coriander (cilantro) seed plus or minus ( I usually add some celery salt and stock) but that's it but you won't often find stuff so simple because a lot of gluten-free recipes are how to make super gluten-free bread or such...
When I do buy gluten-free stuff its often either pasta (for a change) or something like burger buns for a comfort food day...
There are 1000 recipes that require no gluten at all or simply mean changing flour for something else...
Stick with these and your food bills need not really rise much... and if you're eating as much as the rest of the family together right now then they should decrease when you're gluten-free long enough and your villi repair.
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No, not every single relative of mine has been tested, but they all can eat wheat and not have any probs. If I got it from some where in my family, then the family member must of already passed. Ah well gonna have to continue to deal with it. Thanks all.
Regardless you have had this since birth ...
The symptoms may have been masked for a part of that time but they were still in the background.
I'm male and didn't get symptoms until 27-28 when I got typhoid and my stomach never recovered however looking back the symptoms had been present since I was a baby and just disappeared in my teens.
You either react or you don't, a little like getting pregnant really. You either are or not, regardless of if you have got a pregnancy test back.
With celiac disease the reaction occurs, when we are young our villi repair faster than they are destroyed but they are still destroyed ... villi are not made to be destroyed so quickly so when they divide they increase amongst other things cancer risk. On top of that having the immune system constantly fighting what it thinks is a virus or bacteria can damage the immune system and thyroid.
Its conceivable you might start eating wheat and mask the symptoms for a year, maybe two but its unlikely and it will come back. Meantime you are still doing damage to yourself.
Incidentally the best ay to prevent the baby developing celiac disease if they have the genes from you is through breast feeding. If you eat wheat during this time you will pass some of the gluten to the baby.
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Hmmm, my testing is in two weeks, not three months. It's being done while I have some other immune testing done. I've been on the gluten-free diet for about 3 weeks. For reasons I won't belabor, yeah, I sure would like to have a diagnosis, especially if I have to go back to the horrible gastroenterologist in our medical group again, so he takes me seriously this time. It might wipe the smug, arrogant look off his face, so he can work on helping me out, instead of putting me down.
Getting negative results because you haven't been on gluten long enough though will just give him reason to send you for a 3rd opinion????
It is a bit of a risk but you could make sure your diet is documented and the relevancy of the tests is therefore suspect.
Alternatively, why not send your Doctor to a shrink ... sounds like he has a case of SPA (severe patient aversion).
Ask him how he feels about this? Ask how many patients he has referred to shrinks this year? Ask if he wanted to be a doctor or perhaps his overbearing father forced him to med school ?
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Hi,
I would like to delete my account and remove the content I posted for privacy reasons.It is nothing against this site,it is a great site and I enjoy reading through the forums.I need to remove them for concern of privacy.How can I go about doing this?I saw somewhere we are supposed to email the admin (SCOTT)but I do not know where to get his email.Can someone direct me?
Thank you
Click on this link to send an eMail to Scott
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Remove the seasoning as best you can, a wirebrush on a drill works wonders.
Then you need to use oven cleaner (Caustic soda, NaOH or KOH) both of which are quite bad to breath in... (or get on your skin)
They are bad for you because they will break down anything organic ... even some of the most stubborn molecules like gluten. In low concentrations they actually separate gluten from starch but leave them long enough and at a decent temp in the oven and ... well they will get rid of it.
A similar treatment (lime, Ca(OH)2) is traditionally used on corn meal.
When early Europeans started eating corn they suffered a variety of nutritional diseases. This is because the lime (a weaker alkalai than sodium hydroxide (caustic soda) breaks down the protein increasing availability of lysene and niacin amongst others.
Wear gloves and avoid breathing the vapor but this should effectively remove all trace of gluten of done long enough.
Reseason the skillet
General warning: DO NOT TRY THIS ON A ALUMINUM PAN!
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As long as you don't cook gluten foods in it it will be fine.
Or stick it in the dishwasher at the same time as something containing gluten.
Since a non stick pan is so easy to clean then its a good idea to get a different color washing cloth you can use on your gluten-free pans, plates and cutlery.
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I would think that you could avoid contamination in all of those cases by using caution or a lid.
In most cases but sooner or later an accident will happen.
I once subscribed to this and was cooking for a friend, different pan, spoons etc.
Somehow when i served the pasta one of his had found its way into mine... did I use the wrong spoon? I guess I must have but I really couldn't remember!
After this I stopped having any gluten in the house AT ALL.
Soon after this I actually found all those nagging things the last 10% of the puzzle sorted itself out.
Some problems I hadn't even realised I had (they had crept up so slowly over years)
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You can avoid buying all that expensive gluten-free stuff (which I do most of the time) or you can make some of it yourself, which is cheaper. Generally, I just eat naturally gluten-free food. There are also some cheap subs. I wrap stuff in lettuce or corn tortillas for sandwiches and also use corn tortillas as mini pizzas.
richard
I'll second the two options ...
Lots of people have never thought of making chicken nuggets but they take no time at all ... neither do chicken wings, drumsticks etc.
Making chicken nuggets is actually a good way to use up waste expensive gluten-free bread. I find half the time the sliced stuff breaks before I get it home or when you handle it... so I keep it, stick it in a food processor for a minute and roast it lightly in the oven to dry it and it then keeps quite well in a sealed container. (You can also freeze it)
The simplest recipe is just season the breadcrumbs and optionally the chicken strips (your choice from cajun, mexican etc.), then dip it quickly in a beaten egg and roll it in breadcrumbs... pop them in hot oil to seal then your choice of deep fry or take them out to bake.
If you already have breadcrumbs it is literally 2 mins work... it just takes a little practice to get the coating but once you get it right make 50 and freeze them... then you can also do some wings and drumsticks if you like.
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Yep. I know I get ill when I eat wheat starch in Europe. I really don't think they taste any better - especially when they make me sick.
Agreed. I especially like the individually packaged breads.
Its really a matter of expectations:
Does a gluten-free corn tortilla taste better than one with added wheat?
Personally I like 'real' corn tortillas ... I'm sure some people are accustomed to the 'softer' ones with a high proportion of wheat flour. (Not talking gluten-free specific here)
The same can be said for bread ... of course we remember the 'bread from our childhood', just like the snow was better. Personally I find the majority of gluten-free bread over priced for how good it is. It is of course a convenience but mostly unless something really needs 'bread' (like a sandwich) I tend to for-go the bread. Of course some nice crusty bread is great with a heart soup ... but then some crispy croutons can be just as good ... (and can be made from left over gluten-free bread). If you want to make stuffing then gluten-free bread works fine.. etc. but mostly for sandwiches I try to stick to something less like basic white loaf .. (gluten-free buckwheat bread can be good as Rye bread etc.)
My experience is it is a basic white loaf that adding wheat starch seems to help out and there are lots of other bread-types work as well without. Instead of a sandwich a tortilla wrap or Indian chickpea chapati.
Frankly, why risk the codex stuff for a minutes pleasure when the consequences are nights stuck in the smallest room in the house?
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This is simply a matter of dogma and belief:
Open Original Shared Link
The council of Trente made it clear that what you (believe) are eating is the body and blood of Christ.
The 1st Nicean Council made it clear in the Nicene Creed that the body of Christ is 'of one substance'. they even invented a new greek word to 'clarify this'. (ἐκπορεύεσθαι)
The later modifications at the council of Constantinople do not change this.
(G
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1/ My doctor said he doesn't think H. pylori causes hunger. I had called to try to make an appointment specifically for that. Maybe I can have him give me an appointment to my gastro and have my gastro test me for H. pylori?
2/ After deciding that the headaches were due to mercury (you're only supposed to eat white albacore tuna once every 9 days; I was eating 2 cans every day)
Don't tell your MD the second one and expect them to take you seriously. Mercury doesn't just leave the body when you stop eating tuna. The reason it is in tuna to start with is that it is a cumulative poison.
The test for h. pylori is not only simple but cheap.
The treatment is either simple & cheap or complex and expensive. The difference being the use or not of Omeprazole.
Quick and cheap treatment but not cure:
Yanaka et al.; Fahey, JW; Fukumoto, A; Nakayama, M; Inoue, S; Zhang, S; Tauchi, M; Suzuki, H et al. (April 2009). "Dietary Sulforaphane-Rich Broccoli Sprouts Reduce Colonization and Attenuate Gastritis in Helicobacter pylori-Infected Mice and Humans". Cancer Prevention Research 2 (4): 353
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First off: Does it taste better is a pointless question as it is subjective.
It is as relevant as Pepsi vs Coca Cola or McDo vs Burger King.
Does it taste more like the bread you used to eat is a more objective question and the answer might be yes.
Far more relevant is is origin of the CODEX standard for gluten-free.
I have posted this before with links and back-up, if you want this then search my old posts.
(This is the reason I no longer post here with any regularity.)
The CODEX Alimentarius is published by Food and Agriculture Organization of the United Nations (FAO) and the World Health Organization (WHO).
The FAO Board however is basically the food and agriculture industries.
20 PPM has no medical relevance, its value is set because of cheap testing instead of expensive quantitative testing.
The CODEX defines gluten-free as only foods where a gluten-free (<20ppm) substitute has been added.
Without going into details this means you cannot label a steak/fish/carrot as gluten-free because it has no substitute. However if you coat the steak/fish/carrot in <20ppm wheat starch then you can label it gluten-free.
What the 20ppm does give manufacturers is a nice get-out.
Instead of the simple: does it contain gluten or not they get a fudged definition with built in leeway.
A prepared gluten-free chilli and rice should contain no gluten .. but can cannot be labeled gluten-free unless they add some fudge factor in terms of <20ppm wheat starch.
Why is this important?
Here in Europe it is normal for celiiacs (coeliacs) to continue to have bowel problems which are then labelled as non specific IBS.
I and many people I know will tell you with absolute certainty that we have become ill eating gluten-free bread with wheat starch. (the same for the wheat derived glucose syrup).
Many will also tell you that when they see a MD and tell them this that they are told categorically that CODEX gluten-free is safe and they must have non-specific IBS. (My mother is one)
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hi again
thanks for further comments - it's a complicated decision!
gfp - i was on the diet for about a month when I went back to see the dietician as I developed what looks like an allergy to chicken - getting it tested properly soon. She looked at my food and symptom diary and took me off it as I was getting worse, so clearly not the right approach. I have been cutting more and more things out of my diet over the last year, it is getting to the point where i really can't manage it so I am really looking for a solution.
I honestly would say that one month is not long enough.
This is not to say it is the correct approach or treatment but that 1 month is really hardly starting off if you are coming from serious problems.
One thing it seems unlikely to do is make you worse unless you start compensating with something else.
Obviously the classic here is where people go gluten-free or Vegan etc. and start eating huge amounts of Soy
The benefit is it doesn't interfere with any other treatments nor pump you full of active pharmacuticals.
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Popular? Sounds as much fun as winning the lottery.
Why now?
1) Failure of medical system
2) Access to internet
3) Did I mention the failure of the medical systems?
Why 'middle aged women?
1) Statistically more stay home and are homebuilders than men.
2) See 1-3 above.
3) Statistically: more women see women Dr's ... could it be that women make better listeners as MD's?
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I have tried an extremely strict elimination diet (under the supervision of a very experienced dietician), soy/fructose/legume/lactose/egg free diet after that, neither have been useful and my dietician discontinued them as they weren
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I'm not understanding why you don't want to tell them about your gluten concerns? It might seem kind of fussy or snobby, when people offer you cookies or things you can't eat and you continually refuse... but it's really a serious health issue!
I remember feeling like people thought I was being fussy when they'd ask me, in sort of an impatient voice, "Oh geez... can't you just eat a LITTLE??" I used the old "rat poison" adage I read on here... "That's like me asking you if you can eat just a LITTLE rat poison. Eating a LITTLE gluten will make me very sick."
I am the same way when people say they'll make something gluten free for me. I thank them profusely, but explain that if I don't see it made, I just can't take the chance that I'll get glutened because it's really more involved than not using wheat flour and I'm more than happy to bring my own food. I laugh when they give me the pained look ... as if to say, "Oh you poor thing." I tell them it's not as hard as they think, although I've been doing it for years, and I NEVER starve... one only has to look at my body to see that!! ha ha
As the one who started the rat poison adage I still struggle on the 'but surely you can eat a little' and such.
For me the worst situation is when people TRY ... you KNOW they don't get it but then they try and keep assuring you its fine. The pressure to try because they did just makes it all the harder for me.
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I live in a mixed household with no problems...the only one of five that is gluten free. I have my own drawer in the fridge and my own counter that no one else is allowed to prepare food on. They are very careful around me and I have had no problems in the 2 years since I have been diagnosed. They eat regular bread, crackers, cereal, packaged sweets. The one thing I do not allow in the house is wheat flour. I do use gluten-free flour when baking. So far, so good!
Yet you also said:
"My question is how do I know if I'm making mistakes on the diet if I have no digestive symptoms."
https://www.celiac.com/gluten-free/index.ph...c=43959&hl=
So how do you know that it is "so far so good?"
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Well, lately... I have been having my 'mental' gluten symptoms, without being glutened!
It is the same.. Depression, Severe mood swings, anger issues, mind fogginess and short term memory problems...
I know I am not getting gluten, or else I would be having my other symptoms.
Why is it staying all of the time?
Is this normal?
Please help, this is driving me CRAZY!
RobinN and Roda hit the nail on the head...
You might also check yourself and make sure you are not getting CC or small amounts of hidden gluten.
CODEX gluten is enough for me to get the exact symptoms you describe...
Is this due to glycaemic index? Possibly ... A good sublingual B supplement seems to help... but ultimately it is when I take little chances and get caught out that it occurs.
Lupus
in Related Issues & Disorders
Posted
One of our family friends is a GI; he is one of the nicest guys you could hope to meet. After the Tsunami he gave up his (well paid consultancy) job and flew to Sri Lanka ... so he is in no way simply a self interested GI ...
However: Trying to get him to acknowledge the AI and neuro parts of celiac disease is like talking to a blank wall.
He sees celiac disease as GI and that is about it!
My considered opinion of Medical Doctors on the whole is that they have the science removed when they start med school. Perhaps we have a gland somewhere and young Med Students get it taken out?
More seriously though: this is the difference between science and medicine.
MD's are told to believe clinical trials and ONLY clinical trials ...the whole science part seems to completely bypass them.
It might be outstandingly obvious to a scientist that we are talking about a known AI gene sequence and HLA is one of the most completely studied of the human genome. It is even named so that we know what it does .. Human Leukocyte Antigen ...
We know the markers for celiac disease (at least mostly) and we know what tests can be done to identify the antigens.
It strikes me as incredible they did serology on the SLA and then threw away the blood before testing for IgA, IgG and the other well known markers???
Instead of biopsy proven Y/N and SLA they could have had quantitative results ?? Is there a link between celiac disease antigens and development of SLA? Which ones?? Then we could look at some preventative measures instead of "Uh, more people with biopsy proven celiac disease get SLA than we thought".
There is a certain amount of protectionism as well in my opinion and this is readily exploited.
To be cynical the number of cases of celiac disease are increasing and this is a potential cash cow to someone. The GI's would prefer it to be them. If this is defined as a AI disease then this will not be them.
As Fasano stated, this is a multi billion dollar business!
The most distressing part for us is that scientific studies are buried.
The UK Coeliac Society funds research but then buries the research not in it's interest. (specifically, its interest is not that of its members)
The drug companies have little to no interest in something they cannot turn a profit on in the short term ...
This leaves a few pure academic studies which are then ridiculed by the pharmaceutical companies and bodies of professionals who view it as not in their interest.
The reason I post infrequently is because of a discussion on adoption of the WHO/FAO CODEX standard on gluten-free and the position of the GIG. Cynthia Kupper admitted that there was no evidence that CODE standard starch had no detrimental effect on celaics but wants to adopt it anyway. The 'evidence' is that the mortality and morbidity is not particularly worse in Europe (which already adopted the standard) than the US which has not.
This ignores outright the differences in life expectancy between the US and European countries (where the US falls not only below the European countries but many third world ones too).
Secondly it does not address the fact many Europeans get ill and so choose not to eat the CODEX <20ppm wheat starch.
Thirdly it fails to consider that many European and especially UK coeliacs are also diagnosed with non specific IBS.
Indeed the normal course of diagnosis for a confirmed coeliac in the UK who continues to have GI symptoms is to diagnose non-specific IBS.
Fourthly, cause of death in celiacs is rarely attributed to celiac disease per-se. To take an extreme if celiac disease is a contributer to bowel cancer then cause of death is usually cancer; not celiac disease. Given the diversity of symptoms and complications however from other auto immune conditions I would have to ask how the mortality rates are linked to celiac disease.
Lastly: Even if it's not a direct killer is it acceptable to make millions of people ill?
It amazes me that the simple study of two groups of celaics and monitoring of markers and symptoms could actually give some hard scientific evidence not "mortality/morbidity is no higher in Europe".
What really annoys me is this then takes away our choice. We cannot rely on a label saying gluten free: however back to the point, is this science?
If it is then it on a grand scale involving potentially making millions sick in order to find if .. well they are sick?
The biopsy itself is the next key: What makes the biopsy a gold standard (excepting history)?
Regardless of the result of a biopsy what is the condition on someone who as a result of eating gluten has massively raised antigens permanently?
To put this in context, what is the difference between celiac disease and SLE in terms of diagnosis?
Well SLE has no known single markers yet it can be diagnosed on serology for different non-specific tests.
My Aunt died of Lupus (SLE and contributing drug induced Lupus): Well, not exactly ... her immune system started rejecting her insulin so she died of diabetes although she slipped into a coma and her kidneys failed and ultimately she died of heart failure ??? I could stretch a point and say she died of undiagnosed celiac disease but that is conjecture.
Still, we all die ... however why make it unpleasant and earlier than necessary?
My aunt suffered GI symptoms her whole life ... my mother, her sister has celiac disease.
Are they linked?
Well my guess is if we are to find out we need to compare oranges with oranges, we cannot compare biopsy results with people claiming to be gluten-free with SLE ... regardless of the biopsy development (or not) of SLE needs to be monitored with serological markers for celiac disease and dietary compliance.
Just my 2c, but then I'm not publishing the Journal of Clinical Gastroenterology ... and perhaps they would never publish since if I was to write it would not firmly place celiac disease as a GI only disease!