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Latest Celiac Disease News & Research:
Everything posted by flowerqueen
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ARCHIVED I need support from those who know
flowerqueen replied to EasterLily's topic in Coping with Celiac Disease
Firstly, I would check that you are in fact eating totally gluten free and that you are not being contaminated by utensils and kitchen equipment etc. (e.g. Do you have your own toaster for toasting only gluten free bread? Are you washing down your work surfaces twice, before preparing your gluten free food etc.). Keep a food diary just in case, that way you... -
ARCHIVED Celiac and retinitis pigmentosa
flowerqueen replied to artsunshine's topic in Related Issues & Disorders
Hi, Firstly, I'm so sorry to hear of your diagnosis, if you need any help with this the RNIB in UK (website) has some useful information on the disease which you might want to look at. As far as I know, there isn't any link between the condition and celiac disease, although both conditions are hereditary. Somewhere, I did hear that stem cell treatment... -
ARCHIVED Effects of gluten on 8 year old
flowerqueen replied to Erikarae's topic in Coping with Celiac Disease
You've had some very good advice already with the above replies. I would like to add that although some people have trouble with lactose for a while, in my case, it was all dairy, not just lactose (for example, even milk or yogurt with the lactose removed) that made me ill. I have been gluten free for 5 years now, but still cannot digest dairy, and get... -
ARCHIVED extreme fatigue after going gluten free
flowerqueen replied to artsunshine's topic in Coping with Celiac Disease
It's still very early days yet, try not to worry. I was very weak before I was diagnosed. Have you had any blood work done? You could be anaemic, and may need to take iron tablets - but check first that you need them, because it can be dangerous to take them if you don't need them. Your body has a lot of healing to do, the longer you are gluten free the... -
If she is gluten intolerant, she may not have such serious symptoms, as it is not the same as being coeliac. With Coeliac disease it is imperative that you do not eat gluten/wheat as if you do not adhere to a gluten free diet, it can cause serious disease, such as cancer or cause another auto-immune disease.
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ARCHIVED What is y'all's reaction time when you eat gluten?
flowerqueen replied to Zachm's topic in Coping with Celiac Disease
I agree with Chocominties, eating 4/5 bars of chocolate is enough to cause your symptoms, even if you don't have coeliac disease. One thing that puzzles me, why are you eating gluten free if you are still waiting for a colonoscopy? You need to be eating gluten a regular basis (daily) until after your colonoscopy because your body will not produce the... -
ARCHIVED Taking Advil to cope with pain?
flowerqueen replied to Gracey's topic in Coping with Celiac Disease
I can't say I've heard of these, but as already has been said, if they're gluten free, it's worth a try. I'm interested in the fact you have cramping though. I had the same thing after being gluten free for a while, and it turned out I had become intolerant to soya (I was already having a problem with dairy), this worked for a while then had more problems... -
ARCHIVED Vacation Ready
flowerqueen replied to Newly Diagnosed's topic in Coping with Celiac Disease
I also agree with what's been said, but I would not under any circumstances use a wooden spoon, as they are porous and would absorb any gluten, for example, in washing up water that may possibly have glutened pots/pans in and also definitely not a wooden cutting board. The tin foil is good advice too, I would cover up any gluten free food up with it before... -
ARCHIVED Weird things people have said
flowerqueen replied to dania's topic in Coping with Celiac Disease
You are right Dania, you cannot have "mild Coeliac disease and you cannot eat "a bit of gluten here and there" if you've been gluten free for a while. Coeliac disease is a lifetime commitment to being gluten free, even if you don't have symptoms, it is still damaging the villi in the gut, which can lead to more serious health problems, (not that Coeliac disease... -
ARCHIVED 62 yr old woman...celiac?
flowerqueen replied to Sass's topic in Coping with Celiac Disease
I have to agree with Gemini, you must not go gluten free until you've had an endoscopy with biopsies (first you get the blood work done, then you get your confirmation by a follow-up endoscopy), it's the reaction to the gluten that creates the antibodies' you won't get that reaction if you don't eat gluten. It might seem inconvenient, but in the long... -
Hi Kam, I'm sorry you are having problems, but unfortunately I think you will find that when you finally get to see the consultant, they will probably want to do an endoscopy to confirm you have coeliacs, which will involve you eating gluten for at least six weeks, prior to the test. (Most people don't give up gluten until after this stage - did your doctor...
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ARCHIVED How do you know what's causing what?
flowerqueen replied to kam00096's topic in Coping with Celiac Disease
Hi Kam, I second everything that Cyclinglady has told you, but just to let you know that I be me intolerant to dairy before my diagnosis for coeliac disease. The 2npositive tests, were they both blood tests or one blood test and one endoscopy? If you are waiting to see them in the Endocsopy department, I think they will want to do one if you haven't... -
ARCHIVED Oat Flour making me sick?
flowerqueen replied to mayfly25's topic in Coping with Celiac Disease
Hi CeliacMommaX2, 'Yes, you must treat oats like wheat in a situation where gluten free oats cause the same response. I would also not use pots or pans for your daughter, that you have cooked oats in, as there is always a chance that there are traces left in the pans after washing up. It's better safe than sorry.- 12 replies
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ARCHIVED Oat Flour making me sick?
flowerqueen replied to mayfly25's topic in Coping with Celiac Disease
Yes, I was about to say the same as others here. The thing is, even if the oats are certified as gluten free, in a minority of coeliacs, oats cause the same auto-immune response as gluten ALSO a word of warning here, quinoa can also cause the same auto-immune response, so you might want to tread carefully in that direction as well.- 12 replies
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Open Original Shared Link 'I would take a look at this before you embark on a GAP diet. Listen to your 'inner voice' you are probably anxious about going on it for a reason! I certainly would not try the diet.
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ARCHIVED Week late aftershock!?
flowerqueen replied to mareahf's topic in Coping with Celiac Disease
I had a similar problem, I was glutened after a meal out at the beginning of April and am still experiencing problems, obviously not as bad now, but bad enough. I have also become intolerant to xanthan gum since, which cuts down the foods I can eat even more. I'm already intolerant to dairy, soya, and a whole lot of other stuff. Cyclinglady is right about... -
ARCHIVED how long does it take you to recover from gluten contamination?
flowerqueen replied to 1398-Days's topic in Coping with Celiac Disease
It could be either to be honest. I'm suffering the same thing just now. Got glutened a few days into April, and still having symptoms. I've started a food diary again, to see if it's anything else causing the problem. Maybe you could also do this(?) then read through every ingredient to see what's in everything. I've recently started having problems with... -
Good luck at the doctors. Let us know how you get on.
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I'm afraid to say I don't really think it is normal Richie, but I do recognise the shakiness and nausea you speak of, as I've been there. (Pre-diagnosis), my shakiness was so bad, my muscles were very weak and couldn't walk without the aid of a walking stick, my ferritin levels were so very, very low and had to take iron tablet every day for months. My hair...
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Hi again Richie, A lot of coeliacs have a problem with coffee, maybe you do too. It could explain the shakes you describe. I am sensitive to coffee, and haven't touched caffeine since last summer. (The detox lasted for 10 days and it wasn't pleasant, so if you ever give it up, do it gradually). Sometimes when you're intolerant to something, when you...
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Hi Richie, Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be...
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Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder...
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Hi Richie, I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid. There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease. (Our labelling laws in the UK changed a couple of years ago). ...
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ARCHIVED Terrible pains in my stomach
flowerqueen replied to Moff's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Hi Moff, 'Three months in, is still early days, your body may just be withdrawing from gluten (which can cause symptoms) or you may be intolerant to something else. I have been having stomach cramps, not just at night though, and an urgency to rush to the bathroom after eating. I have been gluten free for about 4 years now, and I have started to... -
ARCHIVED Condition worse than before
flowerqueen replied to Nelly's topic in Coping with Celiac Disease
Hi Nelly, I have to agree with Cycling Lady, you need a follow up, to see how you are healing. Most people that have had an endoscopy to get a diagnosis get a follow up one about a year later. I notice you didn't get one. If you have had coeliac disease for a long time, it is going to take longer for your health to be restored. I also think it's possible...