Shananegans and other celiacs...can I ask you something? :) rop

Discussion in 'Fibromyalgia Main Forum' started by shelbo, May 6, 2009.

  1. shelbo

    shelbo New Member

    Can I ask a question?

    When you gave up gluten-containing foods because you were allergic or intolerant did you get any kind of die-off/ herx reaction or not?

    I have been strictly gluten-free for ten days now and while I felt a little better for the first three days or so, the last three have been awful, particularly yesterday and today...

    I have had awful itching on my body, burning in my stomach, headache (worse than usual), sore throat (worse than usual), bad sinus pain and a really unpleasant taste in my mouth regardless of how many times I clean my teeth... Every muscle in my face hurts too esp around my eyes...

    Did any of you celiac suffererers or those intolerant to gluten have this kind of reaction or a die-off reaction before you felt better?

    I can't understand why I have a burning stomach and all thespecially when I have only been in eating veg, fruit, chicken, rice, quinoa, eggs (v. limited), fish, a little organic red meat and nuts, buckwheat pasta substitute....a few potatoes....

    I can't remember when I last had burning in my stomach before the last couple of days...

    Is this a normal reaction when you first cut out gluten? I've had no milk chocolate at all in the last ten days too and no sweeties (only fruit)...I've had one 'natural soda' with no artificial sweeteners etc.... Could it be a change of diet die-off?

    Thanks everyone....

  2. Pippi1313

    Pippi1313 New Member

    I didn't experience that either. My biggest issue was completely losing interest in food, cuz my diet became so dang boring. That and being seriously po'd cuz I couldn't have any of my fave foods anymore.
    I didn't just have to give up 1 thing I liked. I suddenly had to give up everything I liked. Bummer... As if life wasn't sucky enough already!
    Most people don't realize how hard celiac really is. They can still turn to their comfort foods when things are tough.
  3. SnooZQ

    SnooZQ New Member

    1) When we eliminate either gluten or dairy from the diet, we experience a decrease in certain brain opiates.

    When we eat gluten, some of it is converted by the body into glutimorphin -- which binds to opiate/morphine receptors in the brain. Likewise with dairy, casein converts to casimorphin, same binding to brain's opiate receptors.

    Opiates make us feel less pain ... but beyond that they have important immune system functions.

    With less glutimorphin & casimorphin clogging up the brain, we may become more aware of our pain -- less brain foggy. When autistic kids go GFCF, there is often a time of regression, sometimes increase in self-injury (in attempt to increase endorphins), before progress is made.

    Usually in time, the body will compensate for the change in opiates -- the brain will start cranking out more of its' own endorphins. This can take 6 weeks to 6 mos (for casein), for some people.

    2) It's common for people to find that when they first start GF diet, their total carb consumption decreases below what they were eating before they started the diet. A lower carb diet can decrease serotonin -- which often means a heightened perception of pain.

    3) If total food intake is reduced (not uncommon on GFD at first) and digestive juices keep flowing, stomach pain can result.

    4) If gluten has been causing gut inflammation & bloating, when it is removed, as the healing progresses, digestive juices do flow more readily -- they are not blocked by inflamed tissues.

    5) GF diet followers do best with a multi containing the RDA ++ for all B vitamins. Regular gluten flours & cereals are usually fortified, but many GF foods are not. A deficit of B vitamins can hamper brain function and monkey-wrench the methylation cycle which impacts all body systems.

    6) Sometimes one discovers that a substituted-in food is wreaking havoc. An allergy or an oxalate sensitivity may present itself. Try to observe whether you are experiencing symptoms related to a specific food. Corn is a frequent offender, as it is an easy sub for wheat. But it is also highly allergenic.

    7) If you had been having an immunological reaction to gluten -- such as the autoimmune destruction of the small intestine (celiac disease) or an allergy to gluten-bearing grains, when gluten is removed from your diet, your body can start refocusing its immune resources on other subtle chronic problems & infections. One way to help this process is to take a good probiotic.

    Sorry to hear you are having a rough time. Hopefully you will experience a rebound of good health in a few weeks. Best wishes.

    [This Message was Edited on 05/07/2009]
  4. Shananegans

    Shananegans New Member

    I had a major digestive upset when I first really cut out gluten. Burning stomach like you wouldn't believe. I'm not sure if it was something I was eating in replacement of gluten or if it was just a detox but it lasted for about 3 weeks. Now I seem to be fine so I'm going to blame it on detox.

    I also eat a lot of spicy food so it may have been that I just didn't have the bread product to soak up the spicy stuff too... I'm really not sure what it was but I remember it happened the last time I cut out gluten a couple of years ago too so you may be on to something.

    I've also read a lot from other people on celiac boards that they had the same burning stomach or kick up of acid reflux.

    Oh and another weird thing I had happen that has recently stopped was the upper part of my abdomen was cold to the touch and itchy and now I'm wondering if that wasn't part of the detox too because it stopped all of a sudden about a week ago and hasn't returned... Weird.

    I don't know about the weird taste and pain in face tho. I have severe seasonal allergies so I attribute my sinus stuff to that. Once the snow melts, I'm in allergy torture so it would be hard to say if my face pain, sore throat and sinus issues would be the detox. Maybe you have gained allergies? (That is if you didn't have them before). Hope this helps!

  5. Shananegans

    Shananegans New Member

    Wow! Thanks for the info, that's make a whole lot of sense and would explain why even tho I feel better all around, I had less ability to concentrate on one thing and just felt overall foggier than usual for the first couple of weeks. I have been taking a B12 vitamin and magnesium but I don't always remember to take it and I can definitely feel the difference when I forget.

  6. xchocoholic

    xchocoholic New Member

    I was still a mess after giving up gluten because my whole digestive tract had been trashed by then. It took me about 6 months before everything I ate or drank stopped hurting ... And then when I started adding in foods that I'd been intolerant too, I experienced pain again ... It took awhile but now my diet is varied except for gluten, dairy, sugar, corn, soy, egg whites and chemicals ...

    The weirdest symtpom I remember getting post GF was a tingly feeling in my forearms that lasted for 2 - 4 weeks.
  7. shelbo

    shelbo New Member

    You are a wealth of information! Thank you! That is so helpful! You explained everything so clearly :)

    I suppose I'll stick with it then :)

    I haven't been eating any corn since I had an intolerance test years ago which said I was intolerant of maize which is corn, isn't it...

    I have been eating a lot of rice products to substitute. I have started eating a lot more 100% organic wholegrain brown rice crackers with only added salt, brown rice and rice pasta. I have also been eating buckwheat pasta, potatoes and quinoa aswell so I have some variety and don't create problems for myself. I am going to buy some buckwheat flour too so I can make my own pancakes from it. I'm not really missing bread.

    I'm not sure what oxalates are so I'll look into that - thanks! :) Don't know what the methylation cycle is either but I'll do some research...thanks...

    I wonder if there is a way of increasing brain opiates since cutting dairy and gluten decreases them...hmmm... I know you said it can rebalance itself in 6 months but that's a long time...yikes!

    I will definitely buy a B vit complex...that really makes sense though I hadn't even considered it. Thanks for the heads-up :)

    Thanks really know your stuff! Shelbo
  8. shelbo

    shelbo New Member

    Shananegans!'s good to know I am not alone! That sounds a lot like what I am experiencing... the burning and the itching...
    You're right....maybe the sinus pain is allergy-related. It's difficult to know quite what's going on with these DDs! Thanks for your input... I look forward to things settling down a bit soon...hopefully... :)

    Xchocoholic...thanks! Can I ask: when you say you exclude sugar does that include fruit for you? I was thinking of a Candida diet but with cutting out gluten and, for the best part, dairy I am a bit reluctant to give up fruit...
    That sensation you had in your arms was odd, wasn't it? I haven't had that...I'm glad that settled down for you, though :)

    Shelbo :)
  9. I WAS warned, by the registered dietician that put me on an extreme modified version of the elimination diet (he called it a modified starvation diet, in fact!) that, I probably WOULD experience a 'herxheimer' reaction, due to the diet, within the first couple of weeks..

    He was prepared for me to report more pain- but, was baffled by the fact that the first two weeks or 3, I got hiccups, 5 or more times a day, EVERY day.. they were HORRIBLE, (eating rice & chicken only- that is why he was baffled as to RICE giving me 'hiccups!"), but, I can say they were so bad, both of my collarbones, & shoulders stayed so sore, that I *dreaded* the next bout. They were painful!

    Then, days 11-14, I was vomiting! UGH... I felt like DIETING was going to do me in.... through ALL the illnesses, & diagnosis' I have.... DIET was gonna kill me!

    I truly did feel that way for a while. He could only sympathize, send me to my GP for anti-emetics- that never worked for me anyhow... and, suggest the peroxide/epsom salt baths I had known about for years (thanks to this board..) and encourage me, by phone, a couple times a week..

    After 3 weeks though, every single burger/taco commercial didn't make me nearly cry... I didn't want to absolutely PUMMEL my husband & sister, for cooking and eating "good food" in front of me... and, MY food, was tastin' alright.

    Now, for me, it was NOT an avoidance of food, nor lack of appetite, starting the diet- I was eating FOUR CHICKEN BREASTS A DAY after the first week, and into the first couple!!!!!! (EXSPENSIVE!!!!)...

    However, again- that quickly subsided, once my body adjusted to protein- & (ewwww "health food")... and I actually ate only about 1/2-1 small chicken breast a day, & healthy portions of rice..

    My skin, hair, digestive tract (did not even BURP on the diet- EVER!, no hiccups, reflux, gas, bloating, pelvic pain! (I have PCOS & Endometriosis.... but dx'd in 07- I'm SURE I had it back then too- we know I had a large cyst on the left ovary then- from 2000-2007 (had to FIRE TWO, TWO gynecologists, for ignoring this cyst! Before the third finally removed it my first visit- well, SURGERY was scheduled, that first visit, lol) Anyhow- I never had pain from that cyst while on that diet- can you believe that???

    Anyways- I wanted to chime in & tell you that I was warned to expect to feel 'worse' before I felt better, but, even in knowing that- my dietician was suprised more than once, at just HOW violent, or how odd, my reactions were in the beginning...

    Going to get off here now, to cook my veggies & a chicken breast.

    Laura- dx'd celiac since 03 (at age 24- after I spending yrs vomiting, having GB removed, developing Chronic Pancreatitis, from the GB surgery, still vomiting, etc... later finding celiac's, mercury/bismuth poisoning, and a WHOLEEEE LOT of other problems... that, obviously, were NOT my dam*ed Gall bladder!!! (lol)...
  10. shelbo

    shelbo New Member

    Thanks so much for sharing with me... You have been through the mill... I can't believe you had your GB removed and you didn't even need to!

    I don't know how you got through that diet in the early stages...just chicken and rice...that was so extreme! Wow!

    Are you eating more than chicken, rice and veg now? I'm glad you feel better now. I guess herxing is very sounds like any one can get anything in terms of a reaction....literally!

    Thanks again, Shelbo :)
  11. xchocoholic

    xchocoholic New Member

    Hi again,

    I'm not sure if sugar and fruit problems are always related to candida but in my case I think they are.

    I just went back on the candida diet in April because when I caught the flu about 6 weeks ago, I got a yeast infection too. I was really surprised when it showed up again. Now I'm on it for the long haul. My doc says to expect to be on it for 6 months at least.

    FWIW in case you try this. I just saw my doc today because I'm in ketosis on this diet and she told me to add some low glycemic fruit back in so that I'm not in ketosis. I've been feeling horrible the last few days ... Worn out and can't think straight ... Apparently, my brain can't function without some glucose ...

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