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Member Since 22 Aug 2013
Offline Last Active Oct 15 2013 01:34 PM

Posts I've Made

In Topic: Vitamins

27 August 2013 - 03:35 AM

If you can try and find vitamins and minerals that are Gluten Free ... Yes there are some out there. Not all have Gluten in them but some do. You can probably do a search on line.  Amazing how much stuff has Gluten in it!! I am still amazed! before I read a label I try and guess " Is Glutenized yes or no?" And so many times!! I have been wrong!! So yea make sure!! You get vitamins with out Gluten , then make sure you take them one at a time to see how they affect you! Look up symptoms and stuff ..Have you gotten your blood test back yet? 


No bloods back yet - could take another three weeks (painfully slow!) but five days on the gluten free diet so I'm hoping if gluten is my problem then I will start to feel a bit better soon. My head is already feeling a bit clearer but I can't tell if that's just me being hopeful (is 5 days too soon to see results!?) 


All my current vitamins are gluten free at the moment but they seem to really upset my stomach. I'll do as suggested and start taking them one at a time for a while and see how it goes. Do you have any idea how long it normally takes to see results from vitamins? 


Thanks! Hope you're recovering well! X

In Topic: Vitamins

25 August 2013 - 07:38 AM



Thanks W8in4Dave - I will check that out! 

Greetings Litlle Bowl,


What vitamins did you take?  I happen to know from D experience that magnesium causes diarrhea and the body can be more touchy at first.  If you are taking more than one, you might want to stop all, take a 4 day break, and then try one at a time.  I say a 4 day break, because my functional Medicine Nurse tells me that it takes 4 days for antibodies to die down.  I always use natural and often organic vitamins.


In order to combat my celiac symptoms beginning 30 years back I got more and more into whole natural foods.  I often an some relief of symptoms, but I did not know I had celiac.  As a result I gained in discipline to eat nothing but a healthy diet.  I am definately un-American in that respect!  Now, after 30 years of celiac symptoms I got diagnosed.  I used supplements to great advantage.  Infact supplementssaved my life and helped me to tread water the last 6 years of my illness.  I did have help to determine which supplements to take.  Now, after about 18 months of gluten free diet I am Better!  If you have more questions about whole foods or supplements I would be glad to share what worked for me.  I shared some of it in a thread yesterday, so PM me if you need more.




Thanks for this, taking one at a time is a good idea, it seems obvious now you say it but I never thought about taking just one and seeing it if also caused me to run to the bathroom straight away. I feel a bit lost with where to start though. I have taken magnesium in the past but via a spray so it didn't affect the digestive system so much (though within a week I was running to the bathroom again) - but the others I had that were recommended where B vitamins and vitamin C. I can't take a multi-vitamin as I can't have copper and I can't find a copper free multi here in the UK. 


I would love to hear more about what worked for you with regards whole foods and supplements as I don't know where to start to some degree but I can't work out how to PM you! (I'm new to forums - can you tell ;) 


Anyways, thanks again all for your feedback - it's invaluable at this time. 

In Topic: Very Confused - What Do I Do Now?

25 August 2013 - 05:08 AM

Good luck! Thank you so much again for all the helpful answers you have given to my questions. I wish you good health very soon! 

In Topic: Literally Too Tired To Wait Any Longer - Help?

25 August 2013 - 02:39 AM

1. How careful do you need to be. For true celiacs/NCGS you need to be 100% careful. You may feel better at 90% gluten elimination, but there are subtle ways damage can still occur. If your immune system detects ANY gliadin whatsoever, it could crank out the antibodies that attack your intestine or other organs. So the technically correct answer is if you are really going gluten-free, it needs to be total.


But if you take this step be SURE you are certain you don't want to pursue a definite diagnosis through biopsy. If the blood test comes back negative, be sure you will still be motivated enough to stick with the gluten free plan. If you and your doctor are not completely convinced and there is any chance you want further testing, you should stay on gluten until all testing is done. I just finished this wrenching decision process myself. For me, my doctor displays enough understanding and authoritative certainty about it that I trust her and I'm going with the gluten-free recommendation, even without having had the biopsy. But this decision was not made lightly.


2. A huge issue that I'm about to tackle myself. Wooden spoons for example that you've used for years to stir pasta. Need to throw them out or keep them separated in your kitchen from your gluten-free utensils. I bought all Visions cookware on the theory that gluten might hide in the cracks and pores of metal pots and pans. I have told my husband he needs to decide whether to go gluten-free with me and make the whole kitchen gluten-free, or I will need to clean out the top shelf of the refrigerator and ban anything of his from my gluten-free zones.


3. How long? I noticed a huge mood improvement in 2 days, when I simply went 90% gluten-free, and off all sugar too. All anxiety and depression vanished like hitting a light switch. (I can't say for certain if it was the gluten or the sugar, probably both.)  But all my other symptoms have not changed yet. The doctor said that I can expect no real change in those for at least 4 months after COMPLETE gluten elimination. And that in some cases it can take 18 to 24 months to see real improvement. In my case, I am talking about severe body-wide eczema, body-wide muscle pain (fibromyalgia) joint pain, scleroderma skin changes, dry eyes, raynaud's (cold hands and feet) peripheral neuropathy (small nerve damage in hands and feet) multiple allergies and sensitivities, gas, belching, chest pain from GERD, brain fog, memory problems, leg swelling and reflex sympathetic dystrophy.  Quite a lot of damage over the years. No one can prove all of this is gluten-caused, but it will be very interesting to see what improves on the gluten-free diet.


Celiac can result in malabsorption of nutrients and the doctors do not standardly test for most of them, but supplementing on your own can be risky. Vitamins and minerals are about balance. You can over and under dose yourself unless you do a heck of a lot of studying up on the subject and know what you are doing. Lots of supplement "advice" on the internet (and even what doctors tell you!) is given in isolation.  "Oh if you have X, taking vitamin Y will fix you". It's not that simple. Most vitamins work in concert with other vitamins and lots of minerals.  It is best to get your nutrition through your food. However, it can be hard for someone with digestive issues to figure out a list of foods that provide everything you need and are compatible with your sensitive stomach!  So some judicious supplementation might be helpful. Also, you will need to beware of hidden gluten in vitamins and supplements, but it is worth reading and studying about nutrient deficiencies in case you are behind in some things and need supplements to catch up. The idea is that may speed up your recovery, but I'm not quoting science here it just seems logical.


The only down side to being diagnosed "unofficially" in my case or maybe in yours, is that I have not yet been referred to a nutritionist for detailed counseling. People with long time gluten issues can have multiple cross-sensitivities to many other foods. It can be hard to sort out all the things that may still cause you problems, for example, I know I am sensitive to cow's milk, so now I need to avoid all bovine dairy now in addition to gluten. However, milk is a main source of part of my vitamin D. How will I get my D?  That is one example. A nutritionist would help tell me what foods contain what nutrients and what foods are common sources of cross-senstiviities (without me having to do a bunch of allergy testing, which can be of questionable accuracy).


This is probably more information than you wanted. If it is overwhelming then just focus on de-glutenizing for now. A good quality all-around multi-vitamin that is gluten free probably won't hurt. Of course, don't do anything I suggest without okaying it with your doctor.


Good luck!  :)


Lock - thank you so much for this detailed response. It's not overwhelming, it's wonderful. I just read your own story in this forum and it sounds like you are very knowledgable and also very brave - well done for making the decision to change your life now despite not having all the results, it sounds like it will make such a difference. I hope your family get onboard 100%!


Food wise I think I'm smart on being 100% gluten free, but I think I need to work out how to make sure I don't get cross-contamination (right now I have no money for new pans, kitchen equipment etc. so I will have to build up to cutting out cross-contamination in that regard once I get the money to buy bits and pieces) - I have quite a few social things planned in the next month because it's the end of my post graduate degree and there are celebrations planned so I will need to work out how to avoid being gluten-ed at those. It's the social aspect of things I find most daunting in that respect! How are you managing with that? 


I think for me I need to make the change now - I just can't wait any longer. I'm not sure how supportive my doctor really is - he was keen to mention it could just be IBS as I left his office (sure, because IBS causes body aches, numbness, headaches, mood swings... sometimes it feels like the medical profession just wants to put on any label and get you out their office!), HOWEVER, I trust myself that I can stick to it because I'm at a stage where I am risking a lot of things if I don't make the change. I'm currently coming to the end of a Masters Degree and about to start a PhD and I'm at a stage where if I don't get well again I'm jeapordising that opportunity that I have wanted for a long time. It's also really taken it's toll on my relationship as I am tired and unwell and moody almost all the time - I'm fortunate to have a very supportive partner but I think there is only so long he can take (this has been going on in some way or form for almost our whole 4 year relationship) and there is only so much I can bare to put him through. Plus, there is only so much I can bare to keep putting myself though - I am 26 but I feel like I have less energy than my 86 year old grandmother! 


Do you think it is worth cutting out sugar too? I have been wondering about that myself - I notice I don't always respond well to very sugary things or to alcohol, but i'm already finding one change a bit daunting. Ultimately I want to feel well again though, I think I can give up just about anything for that... 


Can I ask what mood issues you were experiencing? (It is my mood issues I wish would go away first as they make it much harder to cope with everything else!). That sounds like a lot of physical symptoms, I'm sorry you have had to struggle for so long. There's a lot things I wonder if they are connected to gluten too - it will be fascinating to see how things change. Please keep us updated - I will look out for your posts and your progress :) 


Is there any definitive way to know what vitamins you need? I tested that my Vit D levels were in the normal range... does that mean I'm probably okay? 


And lastly, I'm a bit cynical about nutritionists anyways as I've seen two in the last few years and always felt like I had learnt more from researching online than they knew themselves! But I can see from your post why speaking with one would be helpful. I think at this stage I would probably rather save up and pay to see one than keep putting myself through unwellness just to get a positive gluten result... I am hoping so much to see results from this gluten free diet. I have never wanted more to just know what is wrong and feel better! 


Good luck with your journey, I hope it is exciting and filled with pleasant surprises even if it might feel daunting right now. 


p.s - this is only my second day gluten free. I have been constipated for weeks and when it stops I get the big D and then go back to C again. This morning I had a fairly regular bowel movement - perhaps slightly less formed than what would be considered normal but not D either. Sorry this is probably TMI but I wonder if this is a sign somewhere... It might be too soon in which case perhaps this is wishful thinking, but fingers crossed! 


Sarah x

In Topic: Literally Too Tired To Wait Any Longer - Help?

24 August 2013 - 03:17 AM

Thanks everyone - it's really nice to have some words of encouragement and feel like I'm not alone. As you will all be very aware it is a bit of a daunting process and as supportive as my family etc. try to be I feel like none of them really understand what I'm going through just now or just quite how bad it feels. 


Four weeks for a blood test is brutal. Other results come back in 3-7 days normally but apparently celiac has to sit for longer before they can test the results and also where I am apparently it needs to be sent away to a special lab. There's a chance it will come back in 2 weeks but I've been told it's likely to expect up to 4. I will indeed call them on a regular basis though so they don't forget about it - that's a very good idea! 


Orange - my thyroid was the first thing I had checked but it came back normal... I also got my blood count, vitamin D levels, liver and kidney function checked but they all came back normal too. Celiac is the only result I am waiting on now though they also took blood again to test for diabetes and glandular fever just incase (though they seem very unlikely!). 


I ended up going to the doctor again yesterday because I was feeling so frustrated and his advice was that it makes sense to start a gluten free diet now and see how I feel in 3 or 4 weeks time when I have my next appointment. From his perspective, if it is gluten that is making me ill I may as well come off it now (and not bother with the biopsy if the blood works come back positive) and if I don't feel better by the time I next see him then we can start looking at other options. So I went to the store last night and bought a range of gluten free flours, pasta, etc. so I'm not tempted otherwise and as of this morning I am going to try gluten free and see how it goes. 


I have a few more questions if that's okay though...


1. If i am testing a gluten free diet how careful do I need to be for it to work? I will stay well away from gluten containing food stuffs but do I need to be worried about cross contamination at this stage? And do I need to start raiding my makeup bag/toiletries? 


2. I've done a good search and I think I have a good idea of where gluten may be hiding in foods - are there any it took people a long time to work out that I should keep my eyes open for? And if I want to make sure I have gluten free toiletries what words on the label should I be avoiding? (I have never seen any toiletries brands that explicitly state 'contains gluten') 


3. How long should it take to start to feel differences? (I know this is different for everyone but basically I guess I'm asking if I stick with the gluten free diet for 3 - 4 weeks then should I have started to notice changes by the time I see the doctor again?)


Thanks in advance  - in the meantime I'll keep searching the forum for answers! :) 


Thanks so much again - here's wishing you all good health. Sarah x

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