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About whattodo

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  1. I have been prescribed VSL#3 from my dietician and i noticed it says there are trace amounts of gluten in it. I just want to know how many people take VSL#3 in the states, and whether thay have any problems with it. Apparently there is no difference between the uk one and the us one other than the flavoring.

    I emailed the manufacturer over here in the uk and this is what he said:

    Dear Jason

    Many thanks for contacting Ferring about your VSL#3 probiotic.

    VSL#3 only contains 11ppm (parts per million) gluten. This is classified as

  2. I wouldn't think bloating would cause that, especially if it a rib higher up like that where you are getting above the stomach into the lung area. But who knows?

    Could you be developing some scoliosis? Leaching of calcium from the bones due to mal absorption of minerals from your celiac disease might cause this as the vertebra become misshapen and the spine begins to twist and curve. I myself have developed both kyphosis and a little scoliosis. Have you had a bone density scan done?


    Yes Steve, i had a bone density test and it was fine.

  3. I have noticed that on my left hand side, one of my middle ribs protrudes further out than the other right. I am trying work out what could be causing this. I want to rule out problems with my stomach if possible. My stomach did tend to get bloated when eating gluten but reduced alot now i am off it. I wonder if this bloating could be pushing the rib out. i know it sounds strange as its only one rib.

    Anyone heard of this, should i visit the doctor or chriopracter do you think? :rolleyes:


  4. Have you talked to your doctor about the increase in symptoms and your concern about being on gluten for two more months while your problems continually get worse?

    Yes i have, i saw him yesturday with all those symptoms. I said i should try and go through the next 6 weeks. He assured me my symptoms would go when i stop gluten. i am monitoring them and believe me if they get any worse i am going to stop

  5. Hi everyone,

    Its been a few months and thought i would update you all on my progress, or lack of.

    Well the last time i was on, i had just had my negative result for Celiac, but did have inflammation of the duodenal tube. They left it like that for a couple of weeks before i got a letter from the hospital requesting i go back on gluten for 2 months and have a re-test.

    What they did find out is that i had helical bacter pylori, which i have had twice in the past year. I have now taken my eradication therapy. Which hopefully has cleared that up.

    In 2 months when i have the second endoscopy they are checking to see if i have got rid of my bacteria aswell as taking biopsy of my duodenal tube to check for the celiac. I think the doctor is concerned that i might have got a false negative in my first biopsy.

    After a couple of days of thinking about whether or not to go back on, i gave in. I decided id rather know if i had gluten intolerance or not. I have been gluten free for 2 months and was feeling alot better although my stomach was slightly better but not completely. (Probably due to the fact that i had helical bacter pylori).

    Well i have now been on gluten for 2 weeks and feel really rubbish. I have started getting the following symptoms:

    Numbish Left side of my face

    Permanent Muscle Spasm in my left hand side upper hip. (cant sleep on that side of my body)

    Piles have returned (with a vengeance)

    Large rash on chest (doctor admits this could be candida, yeast overgrowth)

    Permanently white coated tongue (could be the after effects of the eradication therapy and candida).

    I have hurt my back twice in 2 weeks really badly. (trapped nerve)

    My symptoms seem to have come back with a vengeance this time, before i just has a numbish face and a permanent stomach pain. Is it possible that i am overdoing the gluten. Is there a rule for the biopsy test on how much gluten to eat?

    Now i know that most or nearly all of you are going to say "STOP GLUTEN". HAHA

    I know, this is what i am saying to myself every minute of the day. I need to get a positive result this time. I have tried to live life without gluten but confident my way of lifestyle had suffered alot. Not only that but i was scared to drink in bars and scared to eat in restaurants. I am even scared of going for weekends away and holidays. I dont want to have to live like that if i dont have to. Im sure some of you might understand. I need this result. My relationship is suffering because of me being worried about getting glutened all the time.

    I believe i can quite happily live without gluten if i needed to. But i dont want to live like that if i dont need to.

    The way i look at it is that i only have 6 weeks to go. My doctor has seen my concerns about going back on the gluten and has agreed to take blood half way through my 2 months to check my vitamin and mineral levels. he will also check my blood for celiac disease at this time.

    I would like to know if anyone has experience the back problems and the muscle spasm problems. I did once have a muscle spasm on the other hip for 2 days when i did my last gluten test but this went after going gluten free. I have had this spasm for 1 week now.

    My question to you all is will this extra 6 weeks cause any permanent damage. My doctor has ruled this out and said it will all go away once i go off the gluten. I suppose i am more worried about the serious disease associated with celiac disease. At what point should i say enough is enough, i accept i may have celiac disease?

    I know i have gone on a bit of a rant but would like everyone's input on my situation. The thing that i am most worried about is the fact that i am turning into a hypochondriac and there might not be anything wrong with me, the fact that i focus my attention on my symptoms may be making it worse. This is why i need a true result.

    Sorry for the long post

    Best regards


  6. I'm assuming you pretty much ate a bodybuilder's type diet before going gluten free. It sounds like you did judging by what you say you eat now. If so, just stick with it. You should start to gain back as your intestines heal up and you begin to absorb everything once again.

    I put on 35 lbs in two months since my diagnosis ( and decreased my body fat by 2%), so I know it's possible. Just stick with your fish, chicken, lean meats, sweet potatoes, brown rice, and leafy veggies. Eggs are good too.

    Do you use a protein powder supplement? There are many that are gluten free and would be easier to digest at this point for your compromised digestive system. You might want to up your calorie intake for a while also, until you're feeling like your intestines are functioning close to normal again. Good luck

    Can anyone suggest any good protein powder supplements that are gluten free?


  7. Hi Jay,

    I don't know what it would show to be honest, but i still think you could be celiac. I have started with a slightly numb face and brain fog again after a while without it. We both seem to have extremely similar symptoms.

    I had a full MRI scan last october when i was getting leg tingling, numbess around the body and headaches all day everyday. My result was all clear and these symptoms went away after a couple of months. Last time i seen my neurologist he did suggest that if the symptoms return he would test my Cerebrospinal fluid. Don't know what such a test would highlight though.

    I know you also live in the UK? Do you mind me asking---- are you paying privately for your treatment?? I paid to see my neurologist and for the MRI scan i had although seeing another GI later this month on the NHS!


    Hi chris, thanks for the response. When i had the MRI scan done it was done on the nhs. The neurosurgeon i am seeing tomorrow is being done private. I dont mind things happening to me below the neck, but things above the neck i do not want to mess with.

    Why did the neurologist suggest that he test your cerebrospinal fluid, did he mention if it was celiac related or something else?

    Do you get the numb face all the time or is it on and off or has it gone now you are gluten free (how long did it take). Mine used to be on and off but noticing it more now, its not really numb, its more like someone hit me in the face. Is this the same for you. Is the neurosurgeon the best person to ask for this strange sensation when i see him? I just want to ask him everything, for

  8. Is there a link between Celiac Disease and Cerebrospinal fluid?

    I am seeing a neurosurgeon tomorrow night but dont have a clue what the problem is. My doctor didnt have a clue neither, he just said that an area in the brain is larger than it should be. Perhaps inflamed. he refered to this area as the place where the brain fluid is found and then used to filter it around the brain.

    My doctor admitted to me that he didnt know what this meant but it could simply be something i have had all my life. It still made me slightly worried so i asked him to refer me to a specialist to put my mind at rest. He said it could be a result of my numb face i get on and off.

    I thought i would post it just to see if anyone has had the same thing when they had a mri scan.

  9. Well as many of you know i have been having problems with my stomach for a while now. I have had all the tests done that are possible and nothing points to celiac disease.

    Out of all the tests the only sign of something not quite right is the fact that my duodenum tube is slightly inflamed.

    I have not eaten gluten for about 5 weeks now and nothing has changed. I still have a constant aching in my upper stomach.

    The specialist said to me that if i had celiac disease that she would know even if it was in the early stages. i suggested that the inflamed tube should surely be a clear sign of celiac and she said NO. So far i have had a negative biopsy and a negative blood test. The specialist said it could just be that this is the way my stomach works. The pain not necessary is a bad thing, it just doing its thing. I can remember what she called it?

    I have also found Dyspepsia on the net and that looks very similar to what i have experienced. I may ask the doctor about this when i see him later today. Im sure he will dismiss that aswell.

    But there must be something making my duodenal tube inflamed. I have a helical bacter test tomorrow and a gallbladder scrren on thursday. These are my last tests and after that there is nothing more they can do apparently.

    I have not eated gluten for 5 weeks as i have said. If i were to go back onto gluten do u think i will experience may symptoms that may give me a sign that it is celiac disease.

    I understand what people have said that i may as well stay off gluten, but it is not making me feel better to i dont see a point. Its really difficult, altough i have the willpower id rather know what is causing the problems rather than thinking it is gluten. I have mentioned candida diet in the past so might go back onto that and see if that helps.

    Please can you tell me if im being stupid or if im making sense

  10. If you have a white tongue, you need to go on the candida diet!!! You should also take probiotics, use coconut oil, and ask your doctor if he'll give you a prescription for Nystatin ... it's a benign anti-fungal.

    I also think you need to find out WHY you have candida. Healthy people just don't develop a candida problem for no reason.

    CarlaB, i have diverticular disease which at my age uncommon. Diverticular Disease is cause by constipation and pressure built up in the bowel. This could be my first guess. My second guess would be the fact that a few months back i had helical Bacter and had the strong dose of antibiotics. Other than these two i am unsure of why i have candida. I will go on the diet but i have just been given some prescription nutrition drinks from my dietician to put some weight back on me. I will start the candida diet after that.

    I am still unsure if candida is the cause of my inflamed duodenal tube, i believe it could contribute to my numb face and sore joints.

  11. It can be spread congenitally (mother to baby). There is debate on whether it can be spread sexually ... difficult to prove either way as people who are that close, are usually in the same tick infested areas. I've been married for 22 years, got Lyme before I met hubby, he does not have it.

    You cannot get it from someone at work.

    Half the people who have Lyme do NOT remember a tick bite. A very large percentage, including me, never got a rash.

    I've thought your symptoms sounded "Lymie" ever since you've been posting here, but the symptoms are so similar to celiac that it was good for you to see clearly how gluten-free works for you.

    I'd get tested. The US lab that is accurate is www.igenex.com. I'd contact them and as who is in the UK who can test you.

    If you have it, you got it from a tick.

    Thanks CarlaB

    As you can tell i am getting very frustrated and when i heard that someone if the office has had this, it just made me think of posting it. Especially with the face symptoms i have. Like i have said before i have only been off gluten for a month and maybe not given it long enough.

  12. I am just wondering if it is possible for lyme disease to spread from person to person. The reason why i ask is that i have just found out that someone i work close with has had lyme disease and got it a month before my symptoms started.

    I have not seem any visable signs of tick bites but have symptoms like, headaches, tiredness, numb face and sore joints.


  13. I went to see the specialist last night to get my results of my biopsy. She says that it was negative for celiac disease. Although my duodenal tube did show some inflammation she is not linking the two.

    I mentioned to her that i was off gluten for a while before the test and only went on gluten for a week before the biopsy. She said that if i had celiac disease that there would be some sign of it in my duodenal tube but there isnt. The inflammation is not enough of a sign.

    I know that my symptoms were triggered last september and have been struggling with a sore stomach ever since. Could it be a case that i caught it in time to do enough damage. My doctor said that inflammation is not a sign that the disease has started.

    All my blood and bone tests have been fine so was my blood for celiac.

    My other symptoms have been a numb face and sore thumb joint. Also very tired and loss of 24 pounds.

    They cannot find any answer for me, they know something is causing my dudeneum tube to become inflammed but they do not know what.

    Could it be a food allergy to something other than gluten? The only thing i found to help me is mash potatoes??? It actually feels like it is getting better the day after i eat them but then it comes back.

    I really dont know what to do anymore, should i continue with gluten free diet? I dont even know if its helping me as only been on it for a month and its only slightly better. How long should i stick it out. I dont want to be off gluten if i dont have to especially if its another allergy.

    I know that i have a candida problem as i got tested but not following a candida free diet. The only symptom i have for this is a really white coated tongue. It caould also be making me tired i suppose. Does anyone know if candida cause the duodenum tube to be inflammed.

    Please can someone give me some advice? I just dont know what to do

    many thanks


  14. I eat a lot of mash potato anyway so that can only be a good thing maybe. Though i'm not on a gluten free diet yet, still just going as 'normal' as i possibly can. I don't see a GI doc until the 29th (remember this is the UK NHS we are going with - always going to wait at least a month). I just hope this guy is better than the last guy who said that there was nothing wrong with me.

    Hopefully we can help each other once one of us has got somewhere with our doctors. Do you get any other symptoms other than the pain in your stomach area? How about neurological symptoms? Pins and needles in the hnds and feet? Bone and joint pain? I experience such pain and tiredness regularly..... so annoying.


    Tell me about it, the NHS is such a waste of time, like i said i had to wait 9 months and still not got an answer. Hopefully it wont be long now they found a starting point.

    My symptoms are:

    Sore upper left stomach (under left rib, like a balloon is there)"

    Numb Face*

    Pins and Needles only in bed in my arms ( they dont go numb tho)*

    Brain Fog (Feeling that i am drunk and dizzy)$

    Really slow hands (reactions)$

    Sore thumb joint (This is the only sore joint really)*

    Loss of alot of weight*

    The symptoms I have marked " are constant

    The symptoms I have marked * are on and off

    The symptoms I have marked $ i dont have anymore

    Chris are you eating gluten for the tests they need to run? Are you taking any extra source of multivitamins or calcium?

    I only experience brain fog (which i presume you are refering to as neurological) once or twice after being on the slightly off the gluten. I didnt get this when i was completely on gluten but just seemed to come when avoiding it slightly but not completely. Like when i had a beer for example. i dont get it anymore now i am completely free. I have been free for month now, and feel like my intestines are starting to heal. Regarding my numb face i put that down to lack of vit B aswell as my pins and needles. I do take calcium and magnesium for my bones just till my stomach heals completely enought to absorb it all from my food. The weight loss is a big one for me. I used to be a body builder and now its like i have wasted away. Once you heal the intestines you will gain weight again apparently, i cannot wait. I still go to the gym 5 times a week and do alot of cardio work which helps my stomach feel better, it also helps making you go regular. Do you do any exercise?T

    he food you are eating now, do you have alot of fibre, just asking because i used to and this made me really bloated and felt like the mentioned area of the stomach was going to tear open.

    You also mentioned being tired alot, try doing some exercise help give you more energy.


  15. Hi Jay,

    I'm from Newcastle. Thanks for that and yeah i have found Nikki-uk to be extrememly helpful to me. I'm no expert but from what i have read i would say that inflammation in the duodenum would be celiac. I think you should just keep pushing those doctors until you get an official diagnosis. I'm so fed up with them, but i'm still pushing. I'm seeing a new GI at the end of June and wil hopefully get somehere then. The most annoying thing is when you keep going back to see your GP and they come out with 'IBS, Depression, Chronic fatigue syndrome, it's all in the mind. Hav eyou experieced this with the NHS? So annoying, but i know there is something up and it seems really like celiac and so i am going to keep pushing.

    This board has been great for me and the fact that thee is something out there that can help explain my symptoms has prevented me from going extremely mad....... I'm only 20 and really should not be like this.

    Hope you get somehere soon with all of your problems. What are you main symptoms?????


    Hi Chris,

    The pain I have is in the exact same place as you describe. It is just under the top left rib. I have had it for about 9 months now. I have had all the blood tests done and they were fine.

    I had a ct scan of my stomach and a couple of cameras down the throat. The first of all thought i had a ulser of the stomach but after the biopsy they found i only had helical bacter pylori which is a bad bacteria. These do cause ulsers in the long term. i had the medication for this which should have cleared them up.

    After the pain did not persist i went back to the doctor and told him that something was still wrong, i had a ct scan and that revealed i had diverticular disease. This is a disease of the bowel. On being on anti-spasmodic drugs for a while and the pain did not go away so i went back to the doctor again and told him that i researched diverticular disease and that it was not the pain i was experiencing. The doctor agreed. The doctor then sent me to get a biopsy of my stomach and one of my duodenum tube. The one of the stomach they forgot to do (which was for helical bacter pylori) and the second was for celiac disease. Whilst they did the biopsy they noticed that my duodenal tube had flattened mucosa and was inflammed. The biopsy came back negative for celiac?? I believe this was because i was not eating gluten long enough before the biopsy. Anyway they now know that there is a problem in my duodenal tube and just need to find out what is causing the problem. My doctor still thinks that it is celiac disease, but has also suggested helical bacter pylori or a problem with my gall bladder excreeting too much bile. Once i have the final 2 tests done then the doctor said it can only be celiac disease, so i will end up being one of those people never to be diagnosed.

    I have now lost 28 pounds in 9 months and feel like im wasting away. I have been seeing a dietician but i know what to eat and not so she is not much help.

    just to let you know if you still have the pain try eating mash potatoes as suggested above. I at some on friday and saturday my stomach was fine until my evening meal. On Saturday i at mash again and on sunday my stomach was fine. I have posted this on the forum and a few people have said its because potatoes has a healing quality on the small intestines. it is worth a try chris and see if this helps with your gluten free meals.

    have you heard anything back for the doctors about what you have, it seems like we have very similar symptoms and hopefully once one gets diagnosed it will help the other. I will keep you informed on things that may help during the healing process.



  16. I have had a constant pain in my stomach for 8 months and it hardly gets better to the point that i do not notice it. I wake up in the morning and go to sleep with the same pain.

    I have been gluten free now for 1 month and the pain is as bad a before. I hope it completely goes soon. I know it could be a while....

    During the biopsy the noticed that my duodenal tube was inflammed but diagnosis was negative for celiac disease.

    Anyway, getting to the point 3 days ago i decided to have mash potatoes. The following day my tummy wasnt hurting (well until the evening). For 2 more days after that I had mash potatoes with my meal and my stomach was not as painful as before. I am just wondering if it is the mash potatoes healping my stomach or is it just a coincidence. I must stress that the pain comes back after my evening meal (Really Bloated like my insides are tearing)

    What do you think?

  17. Jay: You pose an interesting question that many really can't answer. In my husband's case, he was ill for about 27 years (see his capsule below)..when he was given the blood test for the antibodies the result indicated "strongly positive." I asked the gastro then if my husband just came down with celiac and if not, how long has he had it? The doctor replied that the "strongly positive" shows that my husband has had celiac for a long time, possibly all those 27 years (which we are sure he has).

    Now the blood test will have a negative result if you get it after you go gluten free. I don't suggest you do this unless you really want to know this answer.

    Some people have said on the board that they did eat gluten and had no immediate reaction...while this could be true in that the stomach/intestines didn't revolt, if you have celiac your body will know it and react to it, whether it chooses to alert you about it or not. I worked with a man who had celiac who cheated and it didn't catch up with him for a few weeks each time he cheated. I used to scold him when I saw him eating a wheat roll with butter in the kitchenette.

    Did your biopsy show flattened villi at any point?


    I have had a biopsy and that came back negative, i had a spell of not eating gluten for about a 2 weeks then a week of eating gluten before the biopsy. They said my duodenum was inflamed and the folds had reduced alot. I have had a blood test but awaiting for the results. Pretty sure that will come back negative as not been eating gluten for the test.

  18. Well it has been 9 months since my stomach first started hurting. Before that I have had 2 spells with the same stomach pain with years between them. I must say that the first one happened about 6 years ago.

    I have always been a keen bodybuilder although i did not do much weight training. I had always been slim until i started eating enough food to build muscle. I would have to take protein aswell to help as i could never eat loads.

    I have however been slightly tired in the evenings but always put this down to going to the gym 5 times a week.

    9 months ago i went throught a very stressful time and depression. I didnt eat alot through this and did loose a little weight.

    My question is, how long have i had celiac disease (although still not 100% diagnosed, im just certain). What i dont understand is that if it is the same pain as i have had before and it went away with still eating gluten then why is this time lasting longer. The only thing i have done different this time is i have had a biopsy and they have seem that my duodenum has flattened. Could this have been happening before and just got better.