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darlindeb25

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Everything posted by darlindeb25

  1. darlindeb25
    I am not sure how to respond to this thread. I do believe that I have my celiac disease under control, having said that, do I think I am healed? No, I don't. I am not sure my tummy will ever totally recover. After getting the gluten out of the way, then the soy became a problem, then corn, then nightshades, it's like a neverending story for me. I find...
  2. darlindeb25
    The nays have it Cari--absolutely not--never eat anything that has gluten on it, in it, under it, on the same plate, etc. I won't touch cheese on the same plate with crackers, who knows if someone dropped a crumb on the cheese when taking a cracker. Cari, being new, you have not heard this old bread tale as of yet, I'm sure. If you take one piece of...
  3. darlindeb25
    My sister had to have IV iron transfusions before she found out she was celiac, they told her she would have to have them once a month for the rest of her life. In the beginning, she had them every Wednesday, for 4 hours. Then she was diagnosed with celiac disease, went gluten free and has not had a transfusion since. The gluten was robbing her of her...
  4. darlindeb25
    Yeah, Dannon has never been one to work with us celiac's, so I wouldn't trust them. I have been gluten-free for 7 yrs and in that time, they have always had the same CYA answer, so personally, I feel they aren't going to change. With so many of us out here now, it would seem to me it would be much easier to just stop using gluten in these products--gluten...
  5. darlindeb25
    Tranquillity, You really should try gluten free first and give it time--one week is not enough time. If you give up everything at once, you will not know which thing actually is the problem. One week is not a fair trial and as you have already stated in the other thread, you really were still getting some wheat. After that fact, it takes time for our...
  6. darlindeb25
    Yup--WHEAT STARCH bad, very bad. Soy and corn are bad for me, but not everyone. Maybe if you can manage to get the wheat out of your system, maybe then you will feel better, but for now, it seems you are still "feeding the monster" so to speak. Try eliminating all wheat first and go from there. You may be ok with soy and corn.
  7. darlindeb25
    When I went gluten free, my neuropathy progression slowed, but it did not improve. That was 7 yrs ago, my neuropathy has slowly progressed, mostly full body small fiber neuropathy. I have peripheral neuropathy in both hands and wrists. The only medication I am on for now is 100mg Topamax and if it doesn't improve things by January, then my neuro wants...
  8. darlindeb25
    To be honest, the best stuff usually isn't sold in drug stores--that being said, I will probably get yelled at, but here goes. The best B12 to get is the methylcobalamin and not the cyanobalamin type. Cyanobalamin is harder for our bodies to process, the methylcobalamin is much easier to absorb. A sublingual is the best source, that is obvious to all...
  9. darlindeb25
    Better late than never--sorry! Happy belated birthday!!!!
  10. darlindeb25
    To begin with Tranquillity--WHAT????? Of course it's still wheat--wheat can not be de-glutenized--someone is lying! If you want to go gluten free, you most certainly must avoid wheat completely, wheat, rye, barley, and I believe oats too. No one said it would be easy, but if you really want to see if gluten is your problem, then avoiding gluten totally...
  11. darlindeb25
    So, let me tell you what my endo said to me about my AB level. When I told him my primary care doc sent me to him because my AB level was high he just laughed and said, "AB levels mean nothing, if your doctor sent you to me and said you have a uterus, so you might be pregnant, that would mean nothing either, just because you have a uterus certainly does...
  12. darlindeb25
    Nyxie63, I remember trying that pupil test before and failing it badly! I just failed it again. My pupils constrict, then enlarge again and start to flutter, meaning adrenal insufficiency--yet the endo told me I am fine. When I saw the endo, my antibodies were high, my primary doc sent me to the endo because of my AB level and the endo just poopoo the...
  13. darlindeb25
    Awwwwwwwww, I'm sorry, but also, realize, we all go through that stage. All celiac's mourn gluten at one time or another, usually in the early months, just like you are experiencing. You are going through the same things we all did, that should at least make you feel a little better. Funny thing about me, I didn't mourn gluten until I was gluten-free...
  14. darlindeb25
    I too, am self-diagnosed out of doctor's ignorance. I begged for help for years. Over 20 years I was ill. I have a daughter because I wasn't absorbing birth control pills, yes, because of undiagnosed celiac disease and my doctor looked at me and said, "99% safe, and you have to be the 1!" Yet, had he found the celiac disease? No! He told me I had the...
  15. darlindeb25
    Thank you Lily. I think your letter is very inspiring, especially for newbies. I hope they read it. It says it all.
  16. darlindeb25
    Nyxie63, I guess I live in the clouds or something, I never heard this before or never paid attention. I may just try this one out. I have been trying to get an edge on this thyroid/adrenal angle all summer and am getting no where fast. Now, out of the blue, my blood pressure is on the rise. The doc I work for is sure it's the Topamax I am taking for...
  17. darlindeb25
    To begin with, your blood pressure is not low, it's very good. Your numbers are just where you want your blood pressure to be, so don't worry about it. Ok, we can take that off your list. So many of your other symptoms could be alleviated by eating properly. First though, it sounds to me as if you do need an anxiety med, just to help smooth you out, calm...
  18. darlindeb25
    Ok Aligray--the word is hydroxyproytrimonium and the other word to watch out for is stearsmidproyldimethylamine--they both are contected to wheat--I found them in the "products derived from wheat" lists and I am not sure how they were used, in what context, just know I am not touching them in any way. I know I broke out in hives after using the lotion, then...
  19. darlindeb25
    Sorry Aligray, I do not have a bottle of it here, I am going to shopping in a little bit here, I will write it down in the store and get back to you--ok. I'm not sure it is 25 letters, but it's close. Hehe.
  20. darlindeb25
    Ali, it's not a silly question! It's a hard one for everyone to deal with--it's a very real issue for a celiac. It is very easy to be glutened with a kiss. I never have been, but it's not because I was too careful, it's because I have been lucky. I have 7 grandkids and one on the way (just found out a week ago, I am so excited). There were many a time...
  21. darlindeb25
    So Deb, Avon's Moisture Therapy is a no-no now? That was always the best lotion ever for my hands. As for the hubby and not wanting to "smell pretty", I would have to have my own lotion, cause I always like to smell pretty. I use some of the Bath & Body Works Lotions that still haven't bothered me YET. I love Sweet Pea and White Tea and Ginger. He...
  22. darlindeb25
    Ok Dandlelion--yes, there is a needle test too, but the least you know, the better. It's not bad, but I find if I do not know what to expect with most tests, then I am more relaxed then if someone told me before hand. When I had my hysterectomy, I was given a website to read in before hand. It's called hystersisters and it is a very informative site...
  23. darlindeb25
    To my knowledge, the cost is the same and they have them nearly everywhere now. I can't say what a closed MRI is like because I have never had one, an open one is hardly what I call open, even though you are not inside of anything, but if I can do it, I am sure you can. I had a brain MRI then in 2 weeks, I had a cervical MRI and honest, you will be ok....
  24. darlindeb25
    I too called Pfizer today and talked with their pharmicist--he confirmed it too. Greenstone is their company and makes their generic which also contains gluten. I told him how unfair they have been to us--first telling us it is gluten free, only to have lied to us. How disgusting is that. It makes me so sad.
  25. darlindeb25
    Well, darn! I guess we all know we can't trust Pfizer, we have been warned enough times about this company. I have taken Xanax for years, only as needed. For the last several years it has been in a generic form. In September my doctor gave me a new RX for it and it is from Greenstone labs, I will be calling them today, if I can find a phone number for...
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