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Kim69 last won the day on March 9 2012

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  1. Whereabouts in the world are you? It looks like you are from USA from your use of the word candy. I have never heard of a low iodine diet do I googled it (and DH). I hope the lid helps you. I am sorry that you have to be on this diet. I found this website that says you can have dark chocolate, marshmallow, hard candy, jellies (tho according to the site I found no red dye is allowed), Popsicles. Could you make or buy a vegan gluten-free cake? I have made chocolate cake before that is gluten-free and vegan. The egg substitute powder would need checking. But apparently u can have cocoa at least :)

  2. I am really interested in neurological problems other coeliacs suffer from. I have tingly fingers and hands, burning pain legs and arms all the time and fatigue almost all the time and occassional muscle cramps up the back of my legs.

    The only vit I am low in is vit d which I am having d3 drops to boost. I have been dx with fibromyalgia. I have all the tender points.

    My pain started about 1 year AFTER I went gluten-free. Pain started when I was on an antidepressant called cymbalta (which is actually the treatment for fibro). I am off cymbalta cos it caused terrible neuro side affects (hallucinations, body jerks etc).

    Just thought I would share my experience in case anyone else has had this strange experience.

  3. You may not like my reply. I am about 2 yrs post dx. I found I don't deal well with any flours or cereals.

    My favourite snacks are a dried fruit and nut mix, date and coconut rolls (a new find at my supermarket - they are 100% date and coconut!) and I do love yogurt even tho I was told I was lactose intolerant. I gave up cow dairy for a while but didn't notice any improvement.

    To begin with I desperately tried cooking my favs with gluten-free flour. Most work well. But I didn't get better and I got fatter.

    I sometimes bake a gluten-free treat and have a small amount. My hubby eats the rest. To tell the truth I am much happier and healthier now I am not eating gluten-free cereals and cookies but it has been a long road. And now I am at that stage where I don't crave carbohydrate. Thank goodness.

  4. Hi sharilee. I agree with the other posters. I too was regularly in tears at the supermarket and especially when travelling (work or holidays) trying to find something cheap and easy for lunch.

    Be kind to yourself and allow yourself small treats. But - sorry for the but - reaccess your situation in a year or so. Hopefully you won't be like me but I have found I am healthiest if I avoid all the gluten-free cereals (fructose syrup is in a lot of them and makes me sick), cookies and cakes. I am now on a whole food diet to lose the weight I put on from those yummy gluten-free treats lol.

    I am really enjoying my diet now. Fresh Fruit and yogurt for breakfast. Salad and chicken, salmon or ham for lunch. Stir fried veggies, tofu, chicken or fish on a big bowl of mixed greens for dinner. Mixed nuts and fruit for snacks. I truly enjoy this diet and am not hungry. And I don't envy other people being able to eat pastries and bread.

    Be patient. Be kind to yourself and do have treats while you are feeling deprived. Reaccess in a year or so.

  5. It's a long road to recovery for us coeliacs. I agree ditch the herbs. To the shock of my naturopath I couldn't tolerate any of her treatments that I needed to swallow. I gave up on her for a while but she dx me with blastocystis which is a parasite. A course of dr prescribed flagyl cleared that up. I had nausea and D for about 1 yr before the $10 course of tablets. Ah sweet relief!

    I still have lots of problems almost 2 yrs after dx. I was dx with fibromyalgia 6 or so months ago. I still have depression that I was hoping would go away after going gluten-free (I am on AD which works very well). I have had to halve my working hours. I have sensitivity to lots of foods and am on a diet too now to lose the 12 kg I put on after celiac dx. (too much chocolate and too little exercise and too much testing all the gluten-free foods available).

    Keep investigating other food intolerances such as fructose malabsorption and keep up your supplements. Whole food diet. Stay clear of gluten-free substitute processed food (keep just for occasional treat) Keep it simple. Good luck.

  6. This is all very interesting. I have been gluten-free for 20 months and recently had a gastroscopy that showed full villi recovery and an excellent response to a gluten-free diet.

    Hmm that's all well and good but I still have such horrible fatigue. I havent been able to work a full days work since becoming sick 2 yrs ago (fatigue was worst symptom). Brain fog has been bad. I am an engineer so I need my brain working!

    Recently my symptoms have changed to more neurological. For past 2 months I have had spasms and twitches, weakness and aches in legs and arms and hands. I was dx with fibromyalgia but I am not convinced. I have double vision and light sensitive eyes that ache after looking at a computer screen. I do have a sinus infection that I am having surgery for in 2 weeks so I am hoping my eyes will be fixed but the surgeon isn't hopeful :(

    I take the following supps - co enzyme q 10, Serracel, Glucosamine, magnesium, zinc, calcium, multi b, vit d.

    I had an MRI and have ruled out ms. All other usual suspects such as hashimotos and hormones have been ruled out.

    My household (husband and two teenagers) refuses to become gluten-free. I must admit I have considered moving out!

  7. You are very lucky to have a gluten-free household. My family refuses.

    My saviours are chocolate and an antidepressant (I was on it before I became Coeliac).

    I have serious issues with food and see a therapist who has helped me throughout. I also have fructose malabsorption which really limits my food. I miss apples and pears.

    So my advice is to see a therapist and consider an antidepressant. The ad helped me feel normal.

    Hugs to you!!

  8. OMG. That was (is?) so me! I see a therapist who specializes in working with people who have food related diseases. At one stage I was afraid of food. I actually bought food powder so I could have a liquid diet! My therapist talked me out of that.

    I am 20 months post gluten-free. For me my worst abdominal pains and gas disappeared when I was treated recently by a naturopath for blastocystis parasite with flagyl. Oh what sweet relief!!

    In the past two months I have developed bilateral leg and arm pain. I was already dx with fibromyalgia ( about a week or two before the aches started). My dr told me yesterday that I am positive for flu a and b so I either had or am about to have the flu! I admit i have sinus infection and am booked for surgery on sept 28 but I am sure I would have noticed having the flu!! My aches have lasted months now

    - the flu only lasts 2 weeks. So confused!

    I also have diarrhea but not really bad - about 4 times a day. I had a follow up gastroscopy and I am all healed :)

    I am really interested to read that these aches and fatigue may be caused by food. I am quite sick and tired of food - I must admit. I am seeing my therapist today thank goodness. It looks like I might have to reconsider food as the culprit.

    Oh - I get lots of muscle spasms. Does anyone else get this in conjunction with constant fatigue and joint muscle aches? I have my normal below normal temperature.

  9. Help please...

    I've been sick for almost 2 weeks - headache everyday, bone pain (around ribs), burning pain right below the ribs, constipation, brain fog, anxiety, and skin pain & sensitivity.

    I don't get it. I've was doing fairly well since going gluten free near the end of February.

    I cannot figure out what's making me so ill.

    I would like to try an elimination diet. Any ideas what to start with? Are there any common foods that tend to make us celiacs sick?

    I'm a huge cereal eater, I love dairy, potatoes and sugar. These things currently make up a large percentage of my diet.

    Having all of these symptoms again is so frustrating. I'm tired of complaining, tired of feeling so bad again - it's like the old days again (before dropping gluten).

    Thanks so much for any and all ideas out there...


    Hi pondy. I was dx just over 1 year ago and have had very similar symptoms to yours. The pain under the ribs for me was gas pain. I am fructose malabsorbent, lactose intolerant and have had to cut out lots of other foods such

    as legumes.

    I was at my wits end starting to consider dx such as MS, fibromyalgia and was told I probably have IBS and another autoimmune disease such as sle or ms etc. I have just discovered I was infected with a parades called blastocystis. In a healthy person this single cell organism can live happily without causing any symptoms but in someone who is immunosuppressed or has digestive problems it can become symptomatic.

    I have had 2 days on antibiotics and feel better than I have for 2 years!

    Recovery can be a long road. Don't give up. Be systematic about which foods you eliminate first. Consider having breath tests for lactose and fructose intolerance. Avoid gas producing food such as cauli and cabbage. Reduce sugar intake. Try one type of food at a time and see if it makes a difference. Try rice milk with your cereal. At least this reduces your lactose load.

    Good luck!

  10. In high school I got some strange virus, and around the same time I got dizzy for the first time.

    In college I got what they called "Mono," and it was the summer after that I had my first major vertigo attack and was diagnosed with Meniere's Disease, which has calmed down (but I still get tinnitus and some fluctuating hearing

    loss if I drink too much).

    Then, skip forward, I had many of the usual tell-tale signs of celiac (brain fog, muscle aches, some anxiety,

    migraines), went off gluten, and felt frickin' amazing.

    I also consistently have had problems with my neck (lots of cracking, aching, pain near ear).

    Migraines were fine but have returned after starting birth


    Are any of these connected? Specifically the Meniere's/Virus/Gluten connection? How? Is there some

    weird superbug that causes autoimmune disorders? Is there a genetic component? Or am I trying to draw intersections between things that are actually just running parallel? I still feel pretty susceptible to viruses of all kinds.

    Any advice for how to beef up against these? I'd especially like to read some research or articles if anyone's got anything, but anecdotal evidence is more than welcome, for


    Hi brandy. I just noticed you said you had a pain behind the ear? I get an extremely horrible nerve pain in my ear. It is triggered by wind - not every time but most of the time it happens. I changed to cymbalta (an antidepressant) from another AD and have been pleased to note that the pain while still occurring is only faint now.

    What is your ear pain like? Or is it related to menieres?

  11. Kim69, did you get an intestinal biopsy to confirm you were celiac? Or maybe a gene test to see if it was/wasn't possible?

    Hi yes, I am biopsy proven Coeliac. And I had the blood tests and the gene test too. I am having a repeat biopsy

    this week to make sure I am healing but I expect I am ok since I have recovered from the deficiencies I had.

    I got the results of a gastrointestinal function profile that cost me $500. I have yeast overgrowth but of more interest is the fact I have blastocystis hominis parasite. Apparently it is asymptomatic in lots of people (ie no symptoms) but it can cause lots of problems for someone who is immunosuppressed or has gastric issues! It is really difficult to get rid off apparently - just google bad bug blastocystis. I can't believe that a single cell organism can cause so much havoc!

    I looked back thru my tests and I had a negative parasite stool test 1 yr ago after I became sick and was dx with celiac disease.

    So it's kindof good news for me!

  12. I travel a lot for work and have been lucky enough to have a few holidays since I was dx 15 months ago. Buffets are tricky but if I cannot ask for a gluten-free meal in advance (I did this on a posh dinner cruise and had a beautiful meal - the chef served me personally and he seemed really pleased tohave had the opportunity to be creative) always ask the head waiter for advice - they usually send someone out from the kitchen. They seem to be mostly pleased to be able to tell me what is safe and what is not. I then use my own judgement and choose the safest meals - ie roast beef and veggies. Easy.

  13. I have results but they are not encouraging.

    I've been on a very strict gluten free diet for 18 months now. I don't cheat ever and I am really careful about cc. However, my blood tests are still coming back strongly positive for Coeliac disease. So that's not good. :angry:

    I don't get really sick but I do feel low-level crap quite a lot of the time.

    I have to go in for another biopsy soon to see if my intestines are healing at all.

    I'm starting to get a bit worried.

    Hi Mack the knife. No it's not good if your tests are still strongly positive. It's certainly discouraging for you. I still feel crappy but at least my dr is happy with the blood tests.

    A repeat gastroscopy is s good idea. I am having one on Wednesday. Oh are you deficient in any of the usual suspects still? Like vit d or zinc, iron, b12?

  14. Ok I got my results today.

    I visited my naturopath today and learned that my test results are positive for yeast overgrowth and more alarming a parasite called blastocystis hominis. This parasite is apparently very common but when u are immunosuppressed or have some gut issue like I did (do?) with Coeliac disease, it can cause all sorts of problems including gas, D, Abd pain etc. Will it never end!

    My naturopath suggested I visit my dr and ask her to write me a prescription for a particular drug called Nitazoxanide. Apparently the parasite is very hard to clear but I will be happy to just get rid of the symptoms if I can.

    Some good news - my test showed I have very good enzyme levels and have no inflammation. It did show abnormal IgA level though. I need to investigate that cos my recent blood tests have been normal.

    And expected news - my levels of good bacteria are very low.

    No mucus and no fat in stool.

    So overall pretty good digestion but have yeast and parasites taking over! I need to get rid of the parasites first then get onto the probiotic program my naturopath has in mind for me.

    Oh and she has given me the diet sheet for the anti-candida (not that that's the fungus I have but) diet which will further reduce my diet (gluten-free, FODMAP, low lactose, casein). No fruit for 4 wks. Not that I can eat much fruit ATM anyway cos of the FODMAP diet. The problem is that the FODMAP diet severely limits the veggies I can eat too. Sigh!

    I have a repeat gastroscopy this week - it's about 15 months since dx.

  15. Hey twizzel. Am sorry you r feeling bad. Am afraid that I have a similar tale to tell. I am 14 months gluten-free and now have negative blood work so I am not getting ill from cc.

    I am in bed now mid afternoon sunday because I can't last a whole day without needing a rest. At work I am exhausted by mid afternoon and am having every test imaginable to try to work out the cause.

    In the meantime I will eat as good a gluten-free diet as possible. I

    will stick to my low FODMAP diet and low lactose diet. Am trying to cope with stress better by learning yoga and meditation techniques. And am trying to reintroduce exercise back into my routine.

    Good luck!

  16. Hi. I liked to see a trend townwards towards normality in my blood work. These are my results. I still feel crappy but that's another issue!

    I have recently had tests done 1 yr post dx on a gluten-free diet.

    AGA IgG <10 (less than 20 is negative on this test) so happy days

    T-glutaminase <5 (less than 5 is negative)

    So both are negative. Over the past year I have had these tests a few times and they have shown a steady decline.

    In November last year I had the following results:

    Anti gliadin IgA <10 (0-20)

    Anti gliadin IgG 22 (0-42)

    Endomysial antibodies negative

    T transglutaminase IgA <5

    And in may 2010 just after I was biopsy dx Coeliac:

    AGA IgA 10 (0-20)

    AGA IgG 84 H (0-42) positive

    Endomysial Ab positive

    T transglutiminase >100 very positive!

    I found it encouraging to get these test results, showing that I am not getting at least a severe reaction from cc. Has anyone else got results to share?

  17. In reply about blood tests. I have recently had tests done 1 yr post dx on a gluten-free diet.

    AGA IgG <10 (less than 20 is negative on this test) so happy days

    T-glutaminase <5 (less than 5 is negative)

    So both are negative. Over the past year I have had these tests a few times and they have shown a steady decline.

    In November last year I had the following results:

    Anti gliadin IgA <10 (0-20)

    Anti gliadin IgG 22 (0-42)

    Endomysial antibodies negative

    T transglutaminase IgA <5

    And in may 2010 just after I was biopsy dx Coeliac:

    AGA IgA 10 (0-20)

    AGA IgG 84 H (0-42) positive

    Endomysial Ab positive

    T transglutiminase >100 very positive!