If you think you may have Coeliac Disease it is important to carry on eating foods that contain gluten - in other words eat normally - but visit your doctor and arrange to be tested. This begins with a very simple blood test, nothing to be alarmed about. You will only get a true test result if you have been eating gluten (some people suggest for at least six weeks) prior to being tested. If you have excluded gluten from your diet because it is making you feel ill - then the chances are that your test results will turn out to be negative even if you do have Coeliac Disease. If your test is negative then you may well have Gluten Intolerance or Gluten Allergy so it is worth discussing this possibility with your doctor to receive any help and advice that is available.
Coeliac Disease symptoms do vary and although many have the symptoms that are on all of the main NHS site there are many more that do not - so it is also important to be tested if your symptoms are different but you sense that they are improved if you do not eat gluten.
If you have Coeliac Disease or you have Gluten Intolerance or you may be Allergic to Gluten then here are some symptoms that you may well have that are not always easy to find on the Web: headaches, indigestion, reflux, tiredness, poor sleep patterns, heartburn, stomach cramps or pains, acid stomach, bruising either on the skin or in the mouth, ulcers, mouth ulcers, blisters on the tongue/cheek/soft pallet/inside of lips, blood blisters in the mouth, tinnitus, thyroid problems, vitamin and mineral deficiencies, dry patches on the skin, weight gain or weight loss, hair loss, nerve aches and pains, joint pains, muscle aches, bone aches, tingling or numbness in hands and/or feet, thyroid problems, periods of melancholy, difficulty conceiving, dry eyes, dry mouth, itchy eyes, skin rashes, swollen ankles, occasional swollen legs, neuralgia, sciatica, memory stalls, sinusitis, marks appearing on teeth similar to fluoridation markings, nausea, constipation and/or diarrhoea, overwhelming bouts of utter exhaustion, flashes of tiredness, vomiting ..
The one thing that is imperative is to refrain from eating any gluten in the diet as people who cannot process gluten (in very rare cases) may go on to develop Refractory Disease, which in simple terms means that the villi in the small intestines have been so constantly damaged that they are no longer able to repair themselves this is called persisting villous atrophy. This can happen if a person has an undiagnosed condition over many years or if a person refuses to stick to a gluten free diet. Occasionally this condition is treated with steroids to reduce the painful inflammation of the gut. It is important to reduce the risk of contracting RFD by sticking to a gluten free diet, as it may lead to further serious major health conditions.
I have listed a few sites that has further information for those who may be interested.
Hi Lynxcat, all very interesting, now I have very controversial views about coeliac who do not respond to a ''strict gluten free diet'' This is because after I was diagnosed I went to a cookery demo by a Prescription food co and I had only been diagnosed 3 days and thought that all the food made with codex wheat tasted super synthetic. So I decided to see what I could do for myself and I was diagnosed with severe anaemia and after 10 months my blood count was normal and after 6 months I had a follow up and my special;ist was really pleased with me and I had a 2nd biopsy showing that my villi had fully recovered. So I decided to introduce more processed foods and found that malted cereals made me ill even tho' they were classed as gf. So I tried some codex bread and I thought that this was OK but my iron levels dropped and I started getting bouts of the runs and my Dr thought that I had IBS. So I stopped eating codex and even tho' it didn't have an instant effect on me and my iron levels returned to normal and the IBS was gone.
So in my opinion and from my experience coeliac in the UK are allowed to eat to much gluten from codex wheat, malted cereals below 20 ppm and possibly oat gluten and wheat derivatives which contain traces of gluten. The EFSA used dextrose and maltodextrin from wheat with 30ppm gluten to test coeliac and those who are wheat intolerant so they are not really free of gluten.
In Australia they have 5 ppm as gluten free with no wheat, barley, rye or oats and wheat derivatives have to be listed for the super sensitive coeliac. They also do not see codex wheat as suitable for coeliac in Australia. And in Australia I am an ordinary coeliac and in the UK I am a super sensitive coeliac. So why is this? because I can not tolerate ''allowed'' levels of gluten in so say gluten free foods.
This is why I think that many UK coeliac have ongoing issues on their strict gf diets and I'm sorry if my opinion shocks anyone but I don't make the rules on allowed levels of gluten and I didn;t choose to be a coeliac or not to be able to tolerate the allowed levels of gluten in may gf foods.
The upside is I am very healthy and I do not take supplements, am a blood donor and I give blood 4 times a year so I must be getting something right.
I sometimes wonder whether there may be several versions on the public stage about what the acceptable levels of gluten really are with regard to the health and well-being of people with Coeliac Disease ...... I found these quotes on a US site where as you know the current allowance of gluten in gluten free food is allegedly 200ppm ....... but here's what they have to say under the following title:
Proposed FDA Standard for Gluten-Free Foods (20 ppm) May Not Adequately Protect the Food Supply for Celiacs
"Key Points:
•The data on the specific levels of gluten that can be tolerated are ambiguous and preliminary
•Given this uncertainty, a margin of safety should be applied because of the potential toxicity of gluten
•The FDA proposed regulation is based on limits of assay sensitivity, rather than safety
•“Gluten-free” will be mistakenly interpreted as “risk-free”
•Instead, an interim standard of “Low-Gluten” should be adopted, using current assay methods. This would address the needs of manufacturers, while protecting consumers
•Total amount of gluten per serving should be taken into consideration
•More sensitive and validated assays for gluten are urgently needed
•Further clinical research on safe levels of gluten is required"
And:
"The final sentence of the FDA Health Hazard Assessment report (Ref. 2, p. 46) states that:
In sum, these findings indicate that a less than 1 ppm level of gluten in foods is the level of exposure for individuals with CD on a GFD that protects the most sensitive individuals with CD and thus, also protects the most number of individuals with CD from experiencing any detrimental health effects from extended to long-term exposure to gluten."
If you would like to read more of this article - here is the link:
I think it is fair to say that it is probably advisable to avoid all known grains that produce gluten in other words all wheat, barley, rye and oats as oats are too similar to wheat and barley to not be ruled out. To knowingly take in gluten, especially using the Codex scale is most probably similar to playing Russian roulette with health. After all a person with a nut allergy wouldn't consider eating small portions of nuts - we may not suffer anaphylaxis, or anaphylactic shock but we do suffer internal damage that may lead to organ and bone damage that is surely irreversible.
I wonder how many Coeliacs and Gluten Intolerant patients have year on year biopsies to check the state of their intestines? How many really feel content, healthy, well and safe when they are eating food containing gluten? I personally wouldn't knowingly take the risk - when the price to pay is my health!
In reply to your querie ,how many people have a yearly check on the state of their intestines.I have been coeliac for 25 yrs and had 2 biopsies in the 1st year,I had regular sessions with a dietitian for about 2 yrs after,,then nothing at all,even my gp just asks if i,m keeping to my diet,I say yes,he says ok and then thats it.I,ve not seen anyone regarding my condition in at least 20 years.
We don't have all those wonderful things here in Canada, to my knowledge. If you're eating gluten free, that means NO gluten ... regardless of ppms...and that includes all the hidden glutens too! I still maintain if you eat a basic, healthy diet of vegetables, raw nuts, hard cheese, lactose free dairy, fruits, fish, seafood, poultry and red meats and stay away from processed foods, your on the best road possible!
Hi Liana, I think you are most probably right. The difficulty appears to be for those who require to take sandwiches and purchase off the shelf packaged bread, etc. Added to that if they also haven't been advised about the flour or wheat starch that is used on ready sliced meats and cheeses to help to keep them separated then they are already on the path to major health issues.
I was in a conversaton yesterday about someone who had recently been diagnosed and no longer does sandwiches - not only for herself but also for her husband - so he now takes salads to work! I am not sure whether she has been advised not to even touch bread made from wheat - and living in a household where I am the only person who is a coeliac - and also the one who makes the sandwiches, it certainly had me wondering! I did manage to convert everyone for a short while onto gluten free bread ..... but they began putting on weight and so reverted back to wheat bread!!
I think that Canada must be leading the world if they do not push the so called permitted ppms .... I am sure that this must be the main cause of many of the health issues attached to coeliac disease and gluten intolerance - why anyone could ever think that it would ever be safe to have something that causes major health issues leads me to wonder at their reasoning!
I agree Lynxcat... I don't know if Canada is well informed or simply hasn't developed the industry to supply those products because we have such a small population base! The Canadian government has just taken product label to the next level but has separated wheat and gluten into 2 different words on the label. I'm not sure if that's a good thing or not! Hopefully those who are gluten intollerant for whatever reason will be well enough informed to understand what that truly means. I fear the wheat lobbiest have been at work somehow. However, here labelling must also include a warning if the item was manufactured in a facility where products containing wheat, gluten, soy or milk are also made.
There are lots of portable lunch ideas that don't involve bread. My kids used to love crackers and hard cheese with fresh fruit. I make my own GF soft tortillas and create all sorts of wraps, salads come in so many shapes and forms from green to rice to bean to potato etc. Soup is easy and many can be eaten cold instead of hot. Celery stuffed with peanut butter is a good one and I also make makimo rolls with sticky rice, seaweed and cooked vegetables, the outter romaine or leaf lettuce leaves can also be used as wraps and stuffed with chicken, flaked salmon etc and a dressing ... you are only limited by your imagination!!
I think that this is the answer to being healthy Liana - to make everything yourself and be as imaginative as possible to try and have a well-rounded and nourishing diet. The main essence of this is probably to avoid breads, cakes and cereals and find suitable alternatives - you certainly appear to have a wide and varied selection in your suggestions.
I am the same - considered a bit "faddy" in the UK for avoiding codex wheat and low levels of gluten, and yet when I was diagnosed in NZ it was clearly "no detectable gluten". I do think that coeliacs in the UK have had a bad deal with being fed so much of the GM and codex stuff, though its nice to see now the two different levels (less than 20ppm and less than 200ppm) being labelled.
I'm also far less likely now to want any kind of highly processed GF substitute and far more likely to have the bulk of my diet "naturally gluten free". That takes just about as much mind shift to do, but so much healthier I think.
I am also very aware that perhaps 20 years ago it was considered that kids could "grown out of" coeliac disease and gluten could be reintroduced safely. Thats definitely not shown to be true, and while some of those kids didn't have any obvious problems for years or immediate reaction the longterm studies have clearly shown other (often major) health consequences of reintroducing gluten
All very interesting and what many people miss in my opinion is that on a molecular level even 1ppm would contain millions of toxic molecules.
In Canada they have to label wheat derivatives as just that and in the EU we do not and in the EU we are more likely to use wheat for dextrose and maltodextrose etc than in Canada and the US who are one of the biggest corn producers and corn is easier to convert into a sugar.
Here in the UK we may have reduced the allowed level of gluten in gluten free foods to 20ppm but we are still allowed to eat malted breakfast cereals codex wheat and wheat derivatives on a strict gluten free diet!
Jerry - my understanding of the new EU regulation on Codex was that all derivatives have to be labelled i.e. Starch (codex wheat starch) or Starch (Corn) vs just using 'starch'. I agree I've seen dextrose just labelled solely as that but in terms of any other starches/ fillers the EU law requires all manufacturers of food and drinks to state where it's from.
I agree with many points in this thread which is why personally I avoid codex wheat starch and barley, oats or malt vinegar. It does disturb me that some coeliac societies say they're safe for coeliacs whilst others say they're not. Poor newbie coeliacs must be going grey trying to get their heads around it all!
How did it ever come to this? How did those who are making the laws on food safety think that it would be sensible, tolerable and safe to allow such a wide distribution of wheat derivatives in food that is manufactured specifically for the safety and use of the coeliac and gluten intolerant population of Great Britain?
In simple terms: Codex or The Codex Alimentarius Commission - initially was set up to protect all the people of the world regarding all sorts of standards of everything that we grow and manufacture that impacts on our life. In other words it was allegedly set up with safety in mind. The trouble now is that we are all bound up in everything that our various countries have signed in to. Here is the Codex Alimentarius of International Food Standards and supported by the World Health Organization and the Food and Agriculture Organization of the United Nations:
In an analogy, it would appear that each of us are but ants trying to move Mount Everest - as somehow we need to show that it is not acceptable to say that it is safe for Coeliacs and Gluten Intolerant people to consume any amount of gluten, even if it is written as safe on the Codex scale. This part of the law surely needs to be looked at again - as it stands it is impacting on too many of us.
These links are damning, I have also read that codex protects the big multinational pharmaceutical co's by making it impossible for cheaper med's to be purchased from developing countries. Which I believe is one of the points made here about turmeric from Thailand being banned in the US.
I also agree with your point below that food clearly labelled as gluten free should be just that and suitable for all coeliac.
I too, am not a political animal ---- but I do want to be in a position where I can feel safe to pick up foods that are 'free from' or 'gluten free' and know that they contain NO GLUTEN AT ALL - SO I CAN CONSIDER THEM TO BE SAFE FOR ME SOMEONE WHO HAS COELIAC DISEASE!
This is the message that Celiac.com have on their site regarding Codex Wheat Starch:
!This category contains articles that cover the Codex Alimentarius gluten-free food regulations, including articles on the safety of Codex quality wheat starch. Many people in Europe do include this in their gluten-free diets, however, in the USA and Canada it is not considered safe."
I'm not sure whether the rest of you may have come across this but couldn't resist adding it when I saw it entitled "Dummies.com" .............. Checklist of Foods and Ingredients to Avoid in a Gluten-Free Diet .. if nothing else it brought a smile to my lips and unbelievably it states the following "Codex Alimentarius wheat starch isn’t allowed in North America because some people question whether the washing process completely removes all residual grain."
Angela Merkel is currently in Canda meeting with our Prime Minister to lay the ground work for a free trade agreement with the EU. If this were to happen, would that mean that wheat starch would be allowed into Canadian products? Canada already has a free trade agreement with the US. Does that mean that these products would gain access to the entire North American market? I'm just asking ...
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Oh, I'm 'super sensitive' don't you know......gluten free labelling of a different type!
What's the difference between coeliac disease and being "allergic to wheat"?
The difference between coeliac disease and gluten sensitivity