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tmb

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  1. Diane, I would say that eating burger meat, unless specifically prepared gluten-free is a good place to start. If you eat burger meat, are you also eating sausages etc. Any mixed or processed food is somewhere gluten is often found, even before you look into things like toothpaste, cosmetics etc. The rigour required to get and stay gluten free is major. I would say that you need to track your clinical symptoms closely or perhaps other tests like anemia etc and not just be guided by the antibody test. 6 months is not that long given others experiences in healing. I have been gluten free (aside from with some accidents) for 8 months, my antibody tests are negative, and I have not had scopes done because I went gluten-free and am not prepared to do the challenge tests. My measure of success is my health with indicators like stools, skin, weight loss, immune system. The diet change has improved mine immeasurably. I also find a danger point after a few months in beoming more adventurous with foods. Finding foods that are supposedly gluten free and not keeping my diet and symptom diary as strict means that I might miss other related issues (I also react to certain nuts, lactose, yeast etc) and although these might dissappear once gluten issues get fixed, there is a certain amount of risk involved when experimenting with new foods or reintroducing. I share your frustration with the challenge of what you are doing and the period of illness leaing up, yet look at the positives. You have a culprit, gluten, and the means to avoid it. Allergies to pollens and dust etc are far harder to avoid. If you succesfully avoid gluten for the next few years recovery can be complete. The downside of slipping back into a gluten lifestyle do not bear thinking of, so embrace the positives of where you are. Things generally get beter from the initial diagnosis.
  2. Let me add my pennys worth here. My experience was mixed as I began by removing candida from my diet, however this was just a side issue. Gluten compromises the gut and allows candida to overgrow, it can also cause lactose intolerance. I agree with all the others comments that people are different, heal at different rates, have different reactions. My suggestion is that while remaining gluten free, and gluten might be the underlying issue, do not rule out related problems. Over time they will also improve but no harm in being aware if you react to yeast products and sugars that feed candida, or issues with lactose that cause their own symptoms. I am gluten-free for 6 months and yeats free for a year and have improved greatly, but it took three weeks for me off gluten to see real benefit, but improements keep coming. I suggest you consider seeing an iridologist to check the state of your organ systems, adrenals, liver etc to se if they need some help to detoxify.
  3. Hi gluten-free A, thanks for the comments. My skin was also aggravated by eating cashew nuts, so these got dropped from my diet. To stop the itching I used a herb called Sasparillo, and it also operates as a blood cleanser. This worked really well after a few days to stop the itch, and I used pawpaw cream on the lesions. Also used a mix of almond and jojoba oil for the dryness. I was told by a naturopath to go easy on vit and mineral supplements as these tax the kidneys and iridology showed that I had stress in kidneys, pancreas and adrenals. He suggested I make sure my diet is varied and let my body heal itself. I have mostly avoided blodd tests for the past couple of years, atho I had thyroid and IgA tests a few years ago. My iridologist seems to pick which organs are stressed and gives me herbs to help heal them. This has worked well. He did not pick gluten as an issue, but when I suggested it might be, he agreed I should try a gluten-free diet (he also turned out to be celiac himself). He also did not pick the issues with candida, but supported my approach to eliminate yeast from my diet. I get the impreesion from others and my own experience that its important to be patient and stick with the diet for at least 6 months to get a clear idea of the improvements. And hope for improvements over a few years to come. Slow but positive.
  4. I think the issues that celiacs experince from family and friends around a basic 'just do not get it', is actually multifaceted and we end up getting short-changed at every turn. It is a complex condition and not as visible as many other - heart attacck, stroke etc that appear to have binary characteristics, and more importantly can happen to others (not just weird celiacs). Even those that have it often understand very little around the disease and getting your head around the diet takes a long time even for the sufferer. I think our parents react in very definite ways. Aside from the above hypochondriac type perspective, our parents have fed us for most of our lives. We are now effectively saying that this food might have been slowly killing us. Parents are responsible for ensuring many things for their children, and food is a very directly controlled part of this. (exercise, schooling etc are but there is a greater element of the child having some responsibility in this achieving good school results - whereas when parents lay food on the table, kids take it on trust). I think many parents are unable to accept that their children are unwell from eating the good wholesome, wholegrain breads that their parents made sure they ate, and now suffer for this. It is easier for parents to imagine the whole thing is faddish and psychosomatic, that way they carry no responsibility. This issue can also affect a spouse, especially a wife. Here again, there is pride in producing healthy meals for the family, and husband, now you face that it has been slow poisoning instead. I am offering this perspective from my own experience and others, not because it directly resolves the issues of close family members attitudes toward celiac disease and diet logistics, but because it gives an idea of where some people are coming from and why they might not easily accept things that seem obvious to a celiac. My approach is be blunt. I do not think it useful to be dramatic, however if a celiac does not eat correctly they will die younger and have a poorer quality of life - thats the bottom line and I have spelled this out to my family in no uncertain terms. I challenge their competence to make medical judgements when they question or doubt aspects of the condition. Once again, its not difficult to judge if a person has the training or direct experience to make valid comments on something we have lived with and learned the hard way. Often discussions about celiac disease (many other things too) center around the specifics and why it is (or is not) a certain way. I go straight to the person and establish if they are able to hold a competent opinion on the subject. If not, I have no issue educating them, as long as they respect my role as a teacher and understand that relative to them, I am the expert. Perhaps this seems unnecessarily harsh and confrontational with direct family and friends, yet if done with passion some people need a quite a shake-up to get over some of the obstacles that prevents their grasping the gravity of the illness. I genuinely believe my wife was unable to project the long term issues for celiac disease, so I spelled them out - help me now or face a future with a sick husband/father prematurely dying - this took some uncomfortable sessions, but they took us a long way to a workable solution. My kids might also have celiac disease, so the same long term prognosis needs to be made clear so we do not face the guilt when they become sick adults. My in laws and parents are more fixed in their views, but have also come to accept more. Few people will ever see it through the eyes of a sufferer, unless they are one themselves, so I dont expect too much, but tiptoeing around the issues does not seem to work. I could scream sometimes when someone tells me that 'just a bit of chicken stock' surely could not hurt! Its a good time to ask how they think they might know something like this, and also check back in a few days to report that indeed my body did react, but it was useful challenge test for my tolerance levels! Next time please trust my judgement when it comes to what does or does not affect me. As an aside, although my friends are as ignorant as my family on celiac disease, they are usually far less resistant to being enlightened, and usually take my comments at face value. I spent far too long taking the hard way out, and eating suspect foods because it was easier than making a song and dance. Now I am quite firm about checking with restuarants and hosts and feel very little if I either bring my own food or insult the host by not eating part of their meal - my ill health is not the best option for me. People seem to want to get me to fit in, or feel sorry for me that my food has no flavour and just wish I would add some tasty glutens. Once again, I tell them to trust my judgement, not theirs. Wow that was a good moan session. I feel a lot better, nothing like a gluten-free soapbox.
  5. Hi katy, you said this As a suggestion for a food diary (and there are different formats that you will find if you google the internet), the one that works for me looks something like this. I use MS Word table and set up a symptom diary of very possible symptom I experience, skin, gut, energy etc, and take a checkpoint as at my start date. I make my symptoms as descriptive as possible, and easily comparable to how I might compare them in a months time. Its a simple table with perhaps 15 symptoms (even fingernails spots, dry skin, general state of stool etc). The other axis is dates so that I can check them all again in a months time and over 6 months I get a good idea of my overall recovery. I then have a food diary with a column for each meal a colums for stool, and another for general symptoms. This allows me to track at a micro level how anything I eat might affect my immediate symptoms, stool etc and how long it takes to show. As long as you update the diary every day or so, you will quite easily work out what does not work for you and what level of reaction and how long it takes to show and clear. The two levels of table allow you to assess overall progress as well as learning what you react to, over time it becomes quite easy to pick when things change in your diet and cause problems. Good luck
  6. Hi kkaty, there are direct links between GI and lactose intolerance. The damage gluten causes to the intestine can create other food intolerances, these are often temporary. Lactose is common as if yeast/candida issues. If you have not already used a food/symptom diary, you should do so to see if it is only dairy that causes issues. My own experience of being gluten-free for the past 6 months and on a candida diet for 12 months, and lactose free for 7 years is that dairy reaction for me is within 12 hours and this is usually D. I am unsure if there are other more subtle effects from dairy. Most of what I have read tells me that I might be able to return to dairy after a year of being gluten-free. Instead of cow dairy I use goat or sheep products, yoghurt and cheese and rice milk. The protein structure of these seems to create less issues with our digestion and immune system, and I seem to tolerate these OK. I did use soy for a while. however soy intolerance appears to be quite common, and after some possible reactions to this, I decided it would be eaier to avoid at this stage in my recovery. My plan is to get to a point where my overall health has recovered to the point where I feel confident to test things like dairy, chocolate etc, and I would guess this will be around 12 months gluten-free. The recovery rate for gluten-free appears to be between 6 months and 5 years, from what I have read and the experiences of others. This depends upon how careful you are, how long you have been celiac, etc. We all react differently around some very common themes. My advice is to do the hard work now, avoid anything you appear to react to, lactose etc. Any delay in removing gluten from your diet is robbing you, both of life and its quality of life. Gluten avoidance needs to be lifelong, while things like lactose might become tolerated over time. Be very clear with yourself why you are avoiding gluten and what you then need to do in order to succeed. Avoidance could mean living a normal healthy life with some disciplines imposed that are initially difficult and not easily understood by other people. However, the payoff is priceless if you achieve this. If you do not the prognosis for celiacs who do not avoid gluten is ugly. A range of auto-immune diseases, cancer, issues with adrenals, candida, etc etc all have a significantly higher probability with celiacs who consume gluten. After 5 years of gluten-free we are all mostly back in the normal range for these diseases. I would not take any shortcuts with lactose, pills etc to compensate if you eat chocolate, etc. Avoiding many of the food vices like coffee, chocolate etc are a small price to pay for the first 12 months or so. Be positive, I have found some great alternative foods over the past year and my tastes have adjusted to these.
  7. Hi Amber, thanks for the perspective. Very sobering the possible impact upon the kids, yet not an easy process to actually do it or even convince the family it is necessary. I want to get the gene testing to give some level of validation. For me it will be enough if they have the genes given their associated symptoms. If they dont have the genes (or me), that will be a conundrum indeed. I need to dig deeper to find a local DNA lab that can do this test.
  8. This is an interesting coincidence. I suffer from anxiety, not enough for treatment but noticeable. I use exercise and meditation to control and help my mind let things go. My exercise suffers due to side effects celiac and my discipline is not greta with meditation. I have noticed over the past few months that I appear calmer. I imagine that part of this is due to identifying gluten as a culprit and seeing a way to recoer my health, but part of anxiety6 is probably as a direct result of the gluten. As a bonus I am doing more exercise and get the added benefit of this. Another one. My skin is also very dry and i had DH lesions in a few places, not too serious but unpleasant and very itchy. I take Sasparillo capsules for the itch (also discovered cashew nuts aggravate sensitive skin and gave these up) and rub oil into my skin very day to keep it supple. My skin is also still dry after 6 months but improving. I also feel the cold and get hives on exposure to cold water, this apears slightly better but suspect this will take longer to resolve My iridologist picked up issues in my adrenals (and other organs), and used herbs to treat. As other organs are often involved in gluten issues - thyroid and adrenals, have a look at this site comparing some thyroid issues with adrenals. If not done already, I suggest you google about adrenal fatigue and look for herbal supplements to boost. http://www.drrind.com/scorecardmatrix.asp Not sure about oats. I have avoided them for around 6 months as I figured easier diagnosis with less items in my diet. Once I figure I have avoided gluen to a period (perhaps a year) and depending on my health might do some challenge testing with oats. As it appears most oats is contaminated, I will do with certified gluten free oats, but the science seems to say that organic, pure oats does not have the same gluten type protein that wheat does. Thanks. I need to decide how we move forward, my gut feel (no pun intended) is we need to tough it out and take everyone off gluten, so we can test itm and its probably the easiest to manage. I then need to decide how long we run the diet for and how we measure it. If we stuff this up, we might miss it and consign my kids to unhealthy lives with celiac. This would be a burden to carry. Thankyou for your comments, I learn something new from each exchange on this board.
  9. Hi Amber, apologies for the slow response. My daughter is just on enzymes and not yet on GFD. The enzymes are there as a stop gap measure while we assess the mechanics of going gluten-free for all or part of the family. I know this is a risky approach and my own experiences (I also took enzymes that were very effective for a period) but gluten still in diet and. I have 4 daughters and the challenges of a GFD are daunting for me and my unconvinced wife. Before I start this I want to get the DNA tests to see if some or al of my kids have the gene, but Perth Australia does not apear to have easily found DNA test labs to do this.
  10. Hi spunky thanks for the update. I understand that the intestine needs 6 months to replace the lining, so the first 6 months is just a baseline, the other ill effects that have accumulated then take time to recover - up to 2 years I have heard. I have also heard that permanent damage occurs and then some issues will always remain. Some iridologists say they can see permanent damage in the eyes. I took my 11 yr old daughter to be checked and was told she had small intestine issues (aka gluten as she has other indicators). We just gave her enzyme supplements without taking gluten out and she had improved bowel movements in a week - the doc confirmed that kids recover much faster. I initially took enzymes a few years ago (without taking gluten out) and had great improvement, however it was not sustainable as the root cause was not being addressed. This time I might get it right - coming up for 5 months now (with some accidents) so hopefully I am within sight of the first major obstacle overcome.
  11. Hi gluten-free avenger, thanks for the response, I have been away so did not reply earlier. You mention that first symptoms to appear will be the last to resolve. My symptoms might have been complicated by a severe allergy to dust mite that I have had for over 20 yrs (however perhaps this was just another symptom created by gluten). Either way this still does not appear resolved. My skin symptoms have been around (altho mildly) for around 15 years. I have also ben told that healing begins inside and moves to outside, therefore I should expect my gut to improve first, skin later. My skin although improved in the past 4 months, is still dry and rough. I have also heard elsewhere that skin healing is inconsistent, even if avoidance is strict, whereas gut improvement might be more linear, although once again because we can expect diet accidents, gut symptoms will fluctuate.. I see you elected to try wheat free first and then gluten free - have you excluded oats from your diet as well, and why did you move from wheat free to gluten free? As you have noticed with yourself that you are now more sensitive to more foods, this also seems to be the case with me. I am also more sensitive to gluten that I was when taking it in. I had a couple of spells of it while doing elimination testing and when reintroduced, skin and gut symptoms were more severe. I also dropped cashew nuts out of my diet as they caused skin itching - I then learned it is quite common to do this. Thanks for your insight into symptoms - I guess that we all learn bits as we progress, from ourselves and from others, and over time establish a pretty good picture of how the disease affects us. It is the first time I had considered your point about the first experienced symptoms should be the last to resolve, I will take another look at my past and see what this means for me.
  12. Tjis might seem like a strange question to ask. celiac disease has negative impact upon our health and we all have various negative health as a result. I ask the question because recovery takes a while and symptoms appear to be variable. Which symptom(s) is the most reliable to know if you are successfully going gluten-free, or perhaps there is another trigger hidden in other food. Improvement in symptoms are an obvious way to do this, however given the time scales of some of these, I am looking for other peoples experience on something that acts as a consistent means to measure progress or deterioration. My own symptoms are skin rashes, stool problems, weight loss, general unwellness, susceptible to cold, infections, hives in cold weather. I find it difficult to take each of these and use them as a barometer for my progress. I understand that my skin might take up to 2 years to clear, and I see improvement in 3 months, however I have flareups and cant figure out if this is part of the healing or because I have eaten something with gluten in or I am reacting to some other food. Weight loss appears to have stopped and am now gaining, but this is also variable and inconsistent over short periods (days and weeks). Infections is hard to tell, my susceptibility to cold is also inconsistent but I cannot see any definite improvement. My stool is probably the best indicator of my intestinal healing, based upon color, fat content, bulk, looseness, smell, frequency. Having said this, I appear to react to walnuts (loosens the stool), but should not affect the skin? Cashew nuts did afect my skin itch and when I stopped eating these, my skin improved within a couple of days. I also have some psychological/emotional changes. I think I was preoccupied with not knowing what the issue was and constantly looking, now I am pretty sure gluten is the major underlying issue. There is relief as well as a positive thought about being healthier and fitter, I might be younger at 52 than I was at 45. This is all good, however I also feel more apprehensive and wonder if this is biological or psychological. I know that gluten can cause some neurological changes, does the withdrawal also produce some kind of chemical change? Has anyone else pondered the uncertainty of recovery in this way, and have comments on my experience, or perhaps a different experience? I also accept that everyones experience will differ, however there might be more solidly reliable indicators that fit most of us.
  13. Hi petitpied, thanks for sharing your experience, could you give some more detail on associated symptoms? I guess I am trying to relate overall improvement (thereby proving strict gluten avoidance) to symptoms and it appears that DH is not a good indicator over short periods as it fluctuates. I have been told by a naturopath/iridologist that the healing begins from the outside (gut) and later to the skin outside. Did you have other symptoms oer and above DH, and if so, how did these track relative to the DH? My own experience with gluten-free, DH and other symptoms, was unpredictable because it took me a few iterations with gluten-free diet to realise I had a problem with gluten. It was only on the 3rd time when I had removed gluten from my diet for 2 weeks (assumed it was not the problem because symptoms did not change much - gut and skin), However when I brought gluten back in my symptoms really flared. It took about 6 weeks off gluten to see progress. Each time I went back on my DH became more severe and took longer to improve. The very first time it happened I took yeast, and gluten from my diet and improvements were marked and rapid. I assumed this was a yeast/candida problem only, gluten was brough back in and the first time symptoms took many weeks to recur, so it was not clear if i was getting yeast from somewhere, or another food - in fact it was almost certainly gluten.
  14. I am also 3 months into gluten avoidance. I already knew that I had an issue with candida and had spent several months prior, trying to sort this out. As I got into the gluten avoidance I discovered that cashew nuts and soya were also a problem. My interest is quite how to track the reduction and change in the symptoms and what they mean. Improvement in symptoms are an obvious way to do this, however given the time scales of some of these, I am looking for something that acts as a consistent means to measure progress or deterioration. My symptoms are skin rashes, stool problems, weight loss, general unwellness, susceptible to cold, infections, hives. I find it difficult to take each of these and use them as a barometer for my progress. I understand that the skin will take up to 2 years to clear, and already I can see some improvement, however I have flareups and cant figure out if this is part of the healing or because I have eaten something with gluten in or I am reacting to some other food. Weight loss appears to have stopped and am now gaining, but this is also inconsistent over short periods (days and weeks). Infections is hard to tell, my susceptibility to cold is also inconsistent but I cannot see any definite improvement. My stool is probably the best indicator of my intestinal healing, based upon color, fat content, bulk, looseness, smell, frequency. I also have some psychological/emotional changes. I think I was preoccupied with not knowing what the issue was and constantly looking, now I am pretty sure gluten is the major underlying issue. There is relief as well as a positive thought about being healthier and fitter, I might be younger at 52 than I was at 45. This is all good, however I also feel more apprehensive and wonder if this is biological or psychological. I know that gluten can cause some neurological changes, does the withdrawal also produce some kind of chemical change? Has anyone else pondered the uncertainty of recovery in this way, and have domments on my experience, or perhaps a different experience?
  15. I have also been gluten-free for about 3 months. I also had some stages of dropping it out of my diet over a longer period of around 12 months, and when I went back on the reactions were worse. However I also discovered that my itch and rash was linked to other foods that by themselves possibly did not cause the skin to react butu in combunation (probably) they upset my skin. For me this was cashew nuts. I suggest you look for other things in your diet that might be additional causes, not ony to see if you are taking in gluten. No doubt you will be more sensitive.