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gf_soph

Member Since 03 Sep 2009
Offline Last Active May 28 2013 03:48 AM
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#700100 Gluten Contamination Problem In School Meals?

Posted by gf_soph on 16 May 2011 - 11:50 PM

Their attitude makes me so mad for your daughter. There's a very high chance they are poisoning her, and when you try to provide her with safe nutrition they give you a dressing down? The head of the kitchen is willfully ignorant and unhelpful, and the teacher is surprised that your child isn't working at full capacity!

If they continue with that attitude I would pose a question to them. Is the head of the school willing to make a legally binding oath that everything they feed to your child is gluten free? Knowing that if they are exposing her to gluten, they could be charged with assault? Knowing that you are going to buy a gluten test kit and actually test samples of the food they feed her?

My guess is that they would run a mile from making a promise of that nature. Until they can guarantee her safety, they can shut up about it not being fair that your child gets her own lunchbox. Especially when I'm sure she'd rather have the flexibility to eat what everyone else does without getting sick.

Rant over! Sorry about the attitude, I know you have to go about things the right way, but it's hard enough to deal with this sometimes without ignorant authority figures making it worse! Good on you for sticking up for her and trying to get a workable solution :)
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#685886 Rice Sensitivity

Posted by gf_soph on 22 March 2011 - 05:28 PM

I keep hearing that rice is one of the least allergenic of foods, but it causes extreme fatigue, indigestion and rapid heartbeat for me. It took me a long time to figure this one out.

I'm just wondering if anyone else has experienced this with rice and if it got better with time.


I definitely have an intolerance to rice, I found this out while on an elimination diet, when I increased my rice consumption my digestion went crazy. I also had mood and concentration problems. This was caused by eating a lot of brown rice products, though I seemed to be ok with white rice before, so I'm hopeful that I might be ok with white rice. A few days after cutting out all rice I felt amazing, and haven't had the chance to reintroduce it yet.

I am on the FODMAP diet, and there are people who can tolerate white rice but not brown, due to the fructans in the brown rice. If you want to try it out, you could try a lower GI white rice like basmati or doongara clever rice, and see if you react.
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#685279 Thinking Of Going Vegetarian

Posted by gf_soph on 20 March 2011 - 07:06 PM

As long as you can cover your nutritional needs there's no reason not to go vegetatrian. Some people go back to meat if they have problems with dairy or soy, but it's a personal choice. Since you aren't eating dairy, you need to make sure you can eat legumes and some soy to replace meat. If you can, you will be fine. I would advise getting your iron and B12 levels checked to make sure they are fine, just because it requires a little more planning to keep those levels strong, and you need to know if you are low to start with.

If you're concerned about inconveniencing your dad, why not learn how to cook a couple of meals that you can freeze, that way when your dad is cooking you can defrost your food and eat any vegetarian part of his meal. Also, once you start making some tasty and filling vegetarian meals you might have a convert. Myself, my mum and sister are vegetarian, and my dad eats meat. He loves veggie meals like dhal and curries, he eats meat a few times a week only.

It is totally possible to be a very healthy vegetarian, just make sure you keep an eye on your nutrition. Your family and friends will come round when they see you eating well and being healthy.
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#684242 Biopsy Negative...crying

Posted by gf_soph on 16 March 2011 - 10:39 PM

I know it's hard when you don't tick all the boxes for a clear celiac diagnosis, but as others have said, the positive antibodies really do mean something.

I had positive antibodies (gliadin was about 4 times normal and ttg was about twice normal) and a negative biopsy, but I was convinced by the gastroenterologist that I didn't have celiac so there was no way that gluten was making me sick. He actually told me not to even bother going gluten free.

I wasted another year of my life in sickness and misery before a good dr told me that gluten was the reason I was so sick. She considers me a celiac, and has referred me to other drs as such. I suffered from awful depression, massive deficiencies and horrible gi symptoms, and if I had gone gluten free when the antibodies were first detected I am sure that it wouldn't have been so bad, and it wouldn't have been so hard to regain my health.

I am technically gluten intolerant, but gluten destroyed my health and over 2 years gluten free I am still healing. Please give the diet a very long and thorough trial. I found a few minor symptoms resolved very quickly, but it did take months for my digestion to start to improve and my depression to lift. It's taken even longer to slowly regain my health, but that has been due to other intolerances causing symptoms and messing with my digestion. The point is that you need to see it as a journey with a long timeline, and don't give up if you don't feel amazing in a month or two.

We are finally starting to see some research in to gluten intolerance, and i think in 5-10 years there will be a far greater understanding of the seriousness of our condition. But until then, you will have to listen to your body and the lovely people here and let your own research inform your understanding of your gluten intolerance. It is real, it is serious, and you do have to be 100% gluten free, and avoid all cross contamination.

Good luck and i hope you feel better soon, I know exactly how it feels to be where you are, and it's hard work!
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#677953 I Just Don't Want To Even Eat

Posted by gf_soph on 23 February 2011 - 11:13 PM

I'm headed into my 5th month since going gluten free now. It seems like the past few weeks every single time I eat something I feel bloated afterward. I've started eating such little bits at at time; a banana for dinner, yogurt and fruit for lunch, cereal as a snack, or maybe just some plain chicken and a veggie for dinner. Does this get better? I'm starting to enjoy a growly stomach because I don't feel bloated when I'm hungry.

I just ate some white rice and steamed sugar snap peas for dinner and it seems strange that I would feel bloated after just that!

*sigh* Any suggestions??

Before going gluten free I used to get teased by friends and boyfriends about how much I obviously loved food!


I do know what it's like to feel bad after eating anything, for me it lasted more than 18 months after going gluten free before I found the right elimination diet that helped me. I used to say that if I had the choice to stop eating and stop the pain I would, as I had so much pain all the time. It can get better!

I would recommend keeping a food diary as you can have delayed reactions to foods, so you may blame it on one meal but it was caused by another. I also know that when I eat my 'safe' diet it can still take days for the bloating to go away, so it can be cumulative.

In the long run it's not good to eat so little, you are risking nutritional deficiencies and messing with your metabolism. Food is the fuel for your body, you can only run for so long on a minimal diet. Treat this like a scientific experiment - form a theory about what might work, and try it out. If that doesn't work, try the next idea until you hit the right combination. I know it's hard but there is likely to be some combination where you can eat a much fuller diet without the problems.

Good luck :)
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#669391 Questions For Those That Have Done An Elimination Diet

Posted by gf_soph on 20 January 2011 - 07:59 PM

It has been almost a week since I started. Lamb,sweet potatos,peaches, peas and rice have been on the menu. :P Other than withdraw from coffee(( I had ALMOST cut it completely out before starting))I am starting to feel PRETTY GREAT :wub:

At first I was very eager to start adding back foods,, But to be honest I am very apprehensive now :huh: that I am feeling better.I dont ever want to feel that crappy again. The foods that I feel may be an issue are moving waayyyyyy to the bottom of the list :)

Thanks for the great info and support ,,,you guys are the BEST


Nice work! It's important to keep the 2 goals in mind - feel better, and find a way to a diet that is as nutritious and well rounded as possible. I know how it feels like to be apprehensive about feeling bad again, but if you can feel this much better in a week don't be too afraid to have a few bad days from a reaction.

Well done, and keep us updated.
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#662520 Endoscopy

Posted by gf_soph on 22 December 2010 - 05:55 PM

Thanks for the link to the medication I'll bring t with me to the appointment.

Loey


Just thought I'd add that I used mebeverine for a couple of years, it worked amazingly well in stopping the horrible spasming I used to get throughout the digestive tract. Happily I haven't needed it for months since I have been on an elimination diet, but it was the one thing that really helped. There were days I was in so much pain for days that I was close to going to hospital, and once I had that medication I never had sustained pain that bad again. My magic combination was to take buscopan (hyoscine butylbromide)to fix stomach pain and gassiness and mebeverine for the spasming and lower pain. Hope it helps, and your stupid dr should have no issues prescribing that to you as it is an antispasmodic, not a pain drug.
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#653431 It's Easier To Just Not Eat

Posted by gf_soph on 14 November 2010 - 05:04 PM

Boy do I know where you are coming from. I am almost 5 months into an elimination diet, and currently am eating a very very limited diet. BUT it is working. Using the diet I have worked out serious reactions to eggs, rice (posibly brown only but have to test out), fructose, inulin, salicylates, possibly amines, and a major reaction to sugars. I never would have worked all of this out without the diet. I also feel better right now that I have since I got sick in 2007. So, those days make it all worth it.

I know how boring it is, and I know how bad the cravings are. I'm wondering how far into the diet you are? If it's less than 4-6 weeks you might be having a particularly hard time due to withdrawals from problem chemicals in your diet. The fact that you are a bit of a picky eater does make it harder I'm sure, but if you are eating all fruits and veggies you actually have a lot of options compared to some diets. The post above has some great ideas, i'm sure you can find something more palatable if you try out a few options. Try making meals close to ones you enjoy before, it might help if it doesn't feel too foreign.

I think the best thing to do is to sit back have reflect on why you are doing the diet. Make sure you are tracking your diet and symptoms every day, it can be invaluable in working out reactions to food, and can help to spot improvements on the diet.

It is hard work, there is no way around that. But you do need to make sure you are meeting your daily food requirements, if you are going hungry then you could end up feeling worse due to a lack of nutrition. I hope you get some useful results from the diet.
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#652249 Are People Just Ignorant Or Inconsiderate?

Posted by gf_soph on 09 November 2010 - 06:05 PM

I don't think you've done anything wrong, but I do think you need to speak up. I don't expect others to think through all the possibilities of cross contamination, though I have trained my family and close friends pretty well by now. Try and put yourself in their position, if you only knew the very basics of celiac would you have known not to touch your used spoon to their plate? I think a lot of people just aren't aware of cc.

Bringing it up doesn't make you neurotic, just cautious. It's a good start that they are happy to go somewhere safe for you, so I don't think they will react too badly.

I would just nicely let them know next time that it's a bad idea to share any utensils between your food any any gluten food as it will contaminate your food. Either ask for a spare spoon for serving, offer to pass the food with yours, or just politely decline to share. If they seem surprised, explain that very small amounts are enough to make you sick, I have used the example that you need 5 ppm (in australia) to be considered gluten free, it tends to get the point across.
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#651248 Can I Trust This Diagnosis? Help!

Posted by gf_soph on 04 November 2010 - 05:45 PM

I will cast my vote as 100% you need to be gluten free. I too had a gastro who said that positive blood work and a negative biopsy (in your case inconclusive) meant no celiac, but he didn't even mention gluten intolerance. I was extremely sick for another year before a good dr set me straight, and I started gluten free.

A lot of your symptoms sound very familiar to me. Just as an example, I used to get terrible foot cramps all the time. They went away almost immedaitely after going gluten free, and they only come back if I get glutened.

I think there is a good chance that you will very well on a strict gluten free diet. It can be hard when we get ambigious test results, but you don't have to tick every box for a straight celiac diagnosis to know that gluten is damaging your body. Have a look at some of the posts and articles about gluten intolerance, and you will see why it's a good idea to give it up.

If you haven't already, get your dr to run some blood tests for your nutrients. Full iron, B12, folate, vit d, thyroid are a start, and no doubt others who know more than me can let you know what others to look at.

Long story short, gluten free for you!
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#650146 Gluten And...?

Posted by gf_soph on 30 October 2010 - 05:03 AM

I am doing an elimination diet at the moment, and one of the information pages for it said that hormones can definitely affect food intolerances. This was tied in with recommending women with food intolerance go off the pill and see if their symptoms improve, and was also put forward as an explanation of why there may be more women with food intolerance. There isn't any more specific information that I can see, other then a vague suggestion that some food chemicals can mimic hormones, but I can't find anything detailed to back that up.

The diet is called the RPA elimination diet, and focuses on salicylates, amines, glutamate, and a lot of artificial additives and preservatives. The website I mentioned is www.fedupwithfoodadditives.info/factsheets/Factallergy.htm

Perhaps you could do some sort of elimination diet and work out your triggers, and then you can plan you eating around your cycle to minimise symptoms?
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#648647 Not A Good Day At The Hospital And Feel So Lost Now.

Posted by gf_soph on 24 October 2010 - 12:20 AM

Thank you sometimes a hug and support is all we need. I have never met a Doctor so rude in my life. He said "If gluten is your problem so you say ! what do you want me to do about it to help you " and then had a go at my husband about gluten is in wheat in the bread so that would effect me also but my husband informed him that I have been eating glutafin bread. I didnt even listen to half of it I was sobbing so much :)


I would seriously consider making a complaint with a dr like that. I think a lot of terrible drs get away with treating patients like dirt as sick people aren't likely to have the energy to complain. This dr is a jerk and he doesn't know what he's talking about.

If you hadn't done your own research you might believe him, and you would continue to be sick. I was unlucky enough to see a gastro who told me that with positive blood tests there was no way that gluten was my problem. I was sick for another year eating gluten before I found out the truth. I'm glad you know better, but how many of his other patients won't? Either way, I'm glad the experience is over and that you had someone to help you though it.
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#648200 Mini Food Binges

Posted by gf_soph on 21 October 2010 - 08:32 PM

I know exactly where you are coming from. It takes me back to an analogy I came across years ago, that self control is like a muscle. There is only so much strength there at one time. The good thing is that the more you use it the stronger it will get, but if you are having to use up almost all your self control at one time it wonít take much to exhaust your strength. You are having to use so much self control to stick with the diet, and you are using even more sticking to a very healthy diet. Maybe you are pushing yourself to far too quickly and then snapping once you push past your limit.

The fact that the bingeing is happening less often is a great sign, but you are understandably unhappy that it is going on at all. Iím wondering if you are pushing harder than you need to? The people I know who are healthiest and have the best weight and food control are the ones who arenít hung up on food. They are happy to indulge in treat foods in moderation, and without guilt. I have had some problems with my weight over time, and also with eating in secret. I wonder whether it would be a good idea to take small amounts of your favourite foods out with you, so when you are feeling really hung up about someone elseís food you have something pleasant of your own? That way you wonít save it all up and invest so much emotional energy on the food.

If you live with other people I would also suggest a blanket ban on secret eating. If you are hiding the food it means you are ashamed, and I donít think itís helpful. I also think you need more regular treats in your diet, obviously keeping to a reasonable amount.

Iíve been on an elimination diet for 4 months now, and there were things I was desperate to eat again, like cheese and chocolate. When it came time to challenge with those foods I was sick of them within a day. It was helpful to see that the emotional investment was because I was denying myself, and once I didnít have to they lost a lot of their power over me. Thatís also why people often fail on very strict diets, by totally denying themselves they give the food a lot of power. Most of the time you will do a lot better if you allow yourself small amount of the foods you like. Once you are Ďallowedí, you can ask yourself if you really want it now, or whether you might enjoy it more later. That was the best way I found to stop unwanted eating, to know that I was allowed to eat it, which changed the focus to whether I wanted it now or not. Most of all, don't be too hard on yourself :)
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#648197 Some Help, Please

Posted by gf_soph on 21 October 2010 - 08:09 PM

I have a question: Is it possible for a NCGI to have neurological symptoms or are those reserved, generally, for celiacs? I am just wondering whether gluten can cause leaky gut in a NCGI as well as a celiac? So many of my problems are neurological (fatigue, dizziness, brain fog, depression).

Thank you.


My experience as a NCGI is that gluten can cause us all of the same problems as people with diagnosed celiac. The only potential difference is that a 'gold standard' diagnosed celiac has villous atrophy found on biopsy. It may be that I had villous atrophy but they didn't find it using the 4 samples they took, as damage can be patchy. It may be that I was in the early stages, and if I kept eating gluten they would have eventually found it. Or it may be that I never developed it, who knows. I do know that gluten makes me severely ill, and 2 years gluten free I am still managing the after effects on my body.

If you look into it there is research showing that gluten can act directly on the brain, not just the gut. There is an interesting article by Marios Hadjivassiliou called Gluten sensitivity: from gut to brain (published in Lancet Neurology). It looks at a group of patients with gluten sensitivity without gastrointestinal symptoms(they had IGA antibodies but a negative biopsy), and finds high levels of a range of neurological condition, from ataxia to epilepsy.

"Gluten sensitivity is a systemic autoimmune disease with diverse manifestations. This disorder is characterised by abnormal immunological responsiveness to ingested gluten in genetically susceptible individuals. Coeliac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity. Although neurological manifestations in patients with established coeliac disease have been reported since 1966, it was not until 30 years later that, in some individuals, gluten sensitivity was shown to manifest solely with neurological dysfunction."

Obviously while they reported on people with positive antibodies you can get false negatives on blood tests.

Anyway, I thought that article was interesting. I know that I have depression directly caused by gluten, it persisted about 3 months after going gluten free and then I woke up one day and it was gone. I get foot cramps, mouth ulcers and depression when I am glutened, and ataxia at times so I know it affects my whole body.
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#647591 Celiac? Main Symptoms Are Gi And Hives

Posted by gf_soph on 19 October 2010 - 05:55 PM

Thanks for the replies so far. I am still debating whether or not to try the gluten free diet before I go back to the GI doc. I'm not having as much problems with diarrhea since going low-dairy and on the antibiotics, but still get embarassing gas after almost every meal :(


Since your dr is open to the idea of testing for celiac, if your next appointment isn't too far away I would stay on the gluten until then. If you go off gluten now then further testing will be invalid. Saying that, even with negative testing it could be a good idea to try the gluten free diet, as you do have a lot of symptoms that could indicate that.

If your hives don't improve on the gluten free diet then you might be interested in looking into the RPA elimination diet. It is a scientifically based elimination diet that is used a lot here in Australia. One the symptoms that caused them to develop the diet was people with recurrent hives with no identified triggers. A lot of people have been able to find dietary triggers for their hives using this approach. Of course there are a lot of other symptoms that are linked to food intolerances as well. I have posted quite a bit about this diet previously, you can find more information by going over some of my older posts if you're interested.
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