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  1. I have been gluten free for over 2 years. When I went gluten free I was SO sensitive to it. My family all have celiac. I never got tested, since the gluten-free diet seemed to solve all my problems and my family history was so strong.

    Fast forward to now. I got glutened the other day in a big way and had little to no symptoms, which throws everything into doubt now for me.

    Should I start eating gluten again and pursue testing? Do no symptoms mean I'm not celiac after all this time? What the heck is going on?

    Thanks for listening...very confused now.

  2. Thank you both for the information!

    You are right - my regular doc, who thought my stomach pain was 'nerves' for 12 years, refused to consider perimenopause or do any tests.

    I will be seeing an OB/GYN soon that I was referred to by my psychiatrist, who is concerned that my recent out-of-the-blue bipolar symptoms may be hormonally-triggered. My mother went from unipolar to bipolar at this age and had perimenopause also at the same time (she is diagnosed celiac)

    I am having many symptoms but am still having a tiny bit of period most months. The trouble is that I am on birth control pills so I *should* be having normal periods just due to those. For about the past year I have had some strong periods but mostly just a hint of one, which is absolutely not normal for me.

    Anyway, I'm gonna get it all checked out but was glad to hear your experiences. Advice from fellow travelers is immensely comforting, as always.


  3. I'm 38 and didn't go gluten free until about 2 years ago after having pretty bad symptoms for at least 12 years.

    I have been having many menopause symptoms for the past year! I plan to go get myself evaluated and hormone levels measured very soon (had to save up the cash), but isn't this way too young?

    Anyone know if untreated gluten intolerance can bring about early menopause? Could going gluten free and getting my energy back have brought this on?

    (I am from a diagnosed celiac family but did not pursue diagnosis myself so I just refer to myself as gluten intolerant.)

  4. I too think I had multiple triggers that made my symptoms progressively worse.

    I had the standard things....surgery, severe stress, traumatic illness.

    Each time I had a worsening of my symptoms that never backed off. Eventually after the last trigger I was unable to keep anything down and was in crippling pain for several weeks straight. When I stopped eating entirely for a few days and then re-introduced foods one at a time it was clear what was wrong with me.

    I look forward to my next life trauma (not really) because I know it won't lead to more debilitating GI issues....YAY!

  5. I have reason to believe I was glutened last night - found something suspicious in my order while eating out and didn't feel like sending it back.

    Anyway, I was up all night vomiting, but had none of the characteristic stomach cramps and diarrhea that I always associate most with my gluten reactions, with or without vomiting.

    Could this be a gluten reaction without the lower GI stuff, or something else like food poisoning or virus?

  6. It's funny....now that I feel pretty good most of the time I have lost my taste for drinking!

    Now that I'm basically healthy I really notice how crappy I feel after having a drink or two.

    I also have found that red wine gives me a headache. I never noticed it before over the noise of the gluten-headache I had for 25 years! LOL! Man things are so different for me now :D

    So now, I will have some white wine every so often when there's a special occasion but that's it.

    At a party I might have a cider but only one! I'm drunk on life these days I suppose.

  7. I recently bought some gluten free cookies

    and let me tell you, I almost cried with joy over how wonderfully moist and flavorful it was!

    It was the first truly satisfying bakery item I have had since going gluten free.

    Anyway, they ship, and seem like a good company! They are ALL Vegan cookies, and they have three gluten free flavors.


    I had the ginger molasses cookies, and they were practically a religious experience.

    I'm going to try all three gluten free flavors real soon!

  8. GrRRRrrrr.

    I went gluten-free about 5 months ago and had an immediate and profound relief from my symptoms, which included almost daily migraines, GI symptoms, and extreme stomach pain.

    I identify myself as 'gluten intolorant' and am fine with the dietary restrictions.

    A majority of my mother's side of the family have definitive diagnoses of Celiac.

    My mother has symptoms that respond to diet, but was negative on the blood test.

    People keep telling me I should get tested. My husband's gastroenterologist (DH has Crohns' and for some reason decided to tell his doc my story) insists I go back on gluten and get tested. Friends of ours are all on my case about testing, and now my husband is bugging me about it! Ironically, it was his idea that I 'try the diet' instead of getting tested way back when I first suspected gluten and talked to him about my options - to test or not.

    Everyone is driving me nuts and making me feel like I'm not taking care of myself! My thinking is: WHAT will I gain from going through the misery and getting tested? I refuse to do it just to stop the nagging, but it's getting really depressing having people I care about disapprove of my decision. Truthfully, if I tested and it was negative, I would still go back on the diet! I feel like all I will gain by being tested is a new pre-existing condition I can be descriminated against with.

    Please tell me what I should do!

  9. Researchers seem to think that a celiac's fondest wish is to be able to eat gluten again. That's true for some of us, but I think a lot of us would just like to eat gluten free more easily, conveniently, cheaply.

    Right now the variety and availability of gluten free foods is increasing in grocery stores and restaurants. I wonder if that trend will reverse if a "cure" comes on the market. That would suck.

    I agree! I actually love the gluten free diet and what it has done for my health. I think it's a truly healthy way to eat and live.

    My only desire is to be able to eat what I truly believe is gluten free while out at a restaurant or someone else's home AND IF it turns out to be CC'd I'd like to be able to avoid the horrible results.

    I'll continue to do my part, but would take a pill as insurance before eating in an uncontrolled situation. I won't go off the diet, no matter how good the pill might be.

  10. thanks guys :)

    good advice about not over-analyzing....I need to focus on the fact that overall I'm MUCH better...the daily crippling stomach pain and fatigue is gone unless I make a mistake - which isn't too often.

    WHAT is DPP-4? I travel a lot and can't always be sure about cross contamination or non-obvious ingredients. Something to help with trace amounts would really make a huge difference in my quality of life!

  11. Although the gluten free diet has made a huge improvement in my GI and overall health, I am getting really frustrated with all the new issues that are cropping up!

    I'm 4 months gluten free.

    The first month was heaven!

    The second month I found that when glutened my reaction was waaay worse than it used to be...OK, gotta live with that. Only a problem when I travel but OK.

    The third month I suddenly became lactose intolerant - even butter gives me problems. Ok, so I cut that out (not terribly hard to do except when traveling)

    Now in the fourth month I am suddenly allergic to all kinds of things! I have huge burning itchy rashes from soaps, laundry detergents, lotions, even hydrocortizone cream burns my skin! I keep switching things and getting rid of one rash and before you know it I have another rash from another source.

    I feel like my immune system used to be preoccupied with reacting to gluten and now that it's not so busy it's wreaking havoc on all my other systems. When does it end?

    I'm a little testy also because I travel for business quite a bit and over the weekend had a terrible glutening despite my best efforts. UGH! This is IMPOSSIBLE~!

  12. ok, this is kind of icky but I really want to know if anyone has had this experience.

    I have been gluten free nearly 4 months and feeling awesome.

    However, my periods are much heavier now. Not more painful or anything, just with more flow.

    Let me put it this way...I haven't needed a feminine hygiene product in 20 years. That's how light I am....a little extra wiping when I went to the loo was all I needed.

    Now I may need to actually buy tampons next month. I forgot how nasty this business is LOL!

    could this be a nutritional deficiency that is now resolving due to my improvement on the gluten-free diet?

    my metabolism is all kinds of better in many ways, so it won't surprise me if this is part of it.

    common story? let me know!

  13. I'm sorry to hear you're struggling with this.

    I too have my moments where I feel like a three year old having an 'I WANT' tantrum.

    But, overall, I usually have no problem passing over the gluteny goodies. I just get soooo sick from it so it makes it easy to say NO!

    Even a dog can be trained to avoid foods that make it sick....perhaps you need to gluten yourself a few more times and really form that connection in your brain: gluten = poison.

    Accepting this probably takes some time and reinforcement to really take hold in the heart.

    It helps a lot to have an attitude that food is a small part of our lives and should not control us, our moods, our ability to enjoy life. I've never really been a big fan of food to begin with, so perhaps I can't truly understand how hard it can be for some.

    Eat to live, don't live to eat.

    That said, even people I know who have had heart attacks and were told to change their eating habits....failed. It's really hard to do, which is why we have so many health crises on our hands in these modern times. Don't beat yourself up for cheating....just re-commit yourself to a healthy gluten-free diet each time you fall back, and keep trying!

    Best wishes for health and happiness :-)

  14. I have developed a big bad case of lactose intolerance about 2-3 months after going Gluten Free.

    I was fine and drinking lots of milk during the first couple of months and felt great, but over the third month I have been getting more and more intolerant of lactose.

    I know my story is not unusual.

    Does anyone know or have a link to articles on why the delay between going gluten-free and becoming lactose intolerant? I would really like to be able to understand scientifically what is happening in my gut. There are plenty of articles saying that the damage of Celiac can cause lactose intolerance, but I would love to know why I felt fine for a couple of months and then developed it.

    thanks for your help!

  15. week 4 and still deteriorating. This puts him in the 90th percentile for severity.

    tests are showing severe axonal damage and high likelihood of permanent damage - it will take at least 6 months to see how much disability is permanent.

    please pray for him...and pray double for his fantastic wife.

  16. The first couple of months it seemed like I glutened myself accidentally almost every week.

    Trust me, you do get better at it!

    croutons are bad, as are Bacos (artificial bacon bits)

    I recently found out the hard way that shredded cheeze is risky as well

    some salad dressings are bad as well, so be sure to check ingredients. I carry my own usually so I don't have to go through the 20 questions routine.

    Often a salad is what I choose when eating out since it's easiest to judge, ingredient-wise.

    good luck and it does get easier with time!

  17. week 3

    he's now on a ventilator. worst part about it is they cannot sedate him because the GBS is affecting his blood pressure and they don't want to risk making that worse. so he's awake and aware, with a feeding tube in his nose and a vent tube down his throat. his eyes are taped shut because the paralysis does not allow him to blink or close them on his own. he's completely paralyzed and cannot feel anything except right around his collarbones and the top of his head. he's awake, blind, and in enormous discomfort.

    he has pneumonia, tachycardia, unstable blood pressure, and his sats are getting worse. he's in ICU so we're unable to see him much at this point.

    the whole 'it can always be worse' mantra is no longer working to calm me.

    I also got glutened at the hospital cafeteria (who knew that shredded cheese sometimes has gluten?) so my mood is blacker than all get-out, so sorry for whining here...it feels good to vent though.

    please give up some prayers/good vibes for my friend....he sure could use a break right about now.