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CDFAMILY

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Everything posted by CDFAMILY

  1. CDFAMILY
    Hi Holdthegluten, I too had very weak legs and I did get worse for over a year where I was walking like someone with Parkinsons. My tTG's and EMA's also increased. I was on a totally natural diet except for some rice pasta and Nut Thin crackers. My house was totally gluten free also. I wrote to the company that manufactures the Nut Thins and they...
  2. CDFAMILY
    If you are still having excessive gas while on gluten free diet that usually means you are still ingesting something that is an irritant. You need to do an elimination to discover the source. Remember just because it says gluten free, does not mean it may not contain a small amount of gluten. I would eliminate all processed food for a couple of weeks...
  3. CDFAMILY
    Well, this is definitely my area. I had my left gland swell so bad I was sent to the ER. I was in for 3 days to get the swelling down on drips, steroids and antibiotics. They were afraid the swelling would close my airway. That was last April 2006. I would periodically get swollen glands since then. By January of this year this happened again and called...
  4. CDFAMILY
    Donna, Just wanted to let you know my high blood pressure was definitely from Gluten. It was so high and went untreated because at night it would go low...I could always feel it going up and down. When I went gluten free my blood pressure returned to normal. I also had a fasting glucose of 99 so I was heading for probably type 1 diabetes since I had exercised...
  5. CDFAMILY
    Hi Grey, I had a major problem with biting myself and developing painful ulcers that would actually eat away and become worse before getting better. They would last 2-4 weeks and usually I bit myself again during healing. As soon as I bit myself I would get so depressed because I knew how painful the next few weeks would be and nothing seemed to help....
  6. CDFAMILY
    My youngest daughter was probably born Celiac. She had so many symptoms starting at birth. Many doctor appts and never any answers. I was the same and became very sick neurologically in 2003. First I found a B12 deficiency so I started the whole family on mega B12, vitamins and B complex. My youngest daughters explosive gas and burping suddenly calmed...
  7. CDFAMILY
    Hi brizzo, Deb and all, On another forum, we talked about cataracts. There is no doubt in my mind that celiac affects the eye. I was told I had cataracts forming. A year later gluten-free my optomotrist could barely see them but what she found even stranger was that my vision had changed after being the same for 40 years. My husbands night vision...
  8. CDFAMILY
    Julie, Here is a link that has info on sezuires and celiac: Open Original Shared Link I am so sorry that things are so difficult for you now. You sound like me, someone who continues to work hard even though the body is not cooperating! I struggled thru a year and a half of feeling lousy and weak but have finally crossed the finish line in the...
  9. CDFAMILY
    "Don't worry there is no sugar in this product," said by a nurse after mentioning the need for gluten free.
  10. CDFAMILY
    Shannon, It sounds like you have the neurological presentation of Celiac Disease. I too had some major neuropathy problems and also a lot of weird things going on in my brain. My head would go numb quite often, sometimes I had pressure like someone wrapped my head in a rubber band and would tighten, sometimes I would get this warm feeling in my brain...
  11. CDFAMILY
    Is this true about a cast iron pan and the self cleaning oven? Has anyone tried this that is very sensitive to gluten and had no negative effects? I gave my pan to my daughter but would love to get it back.
  12. CDFAMILY
    Kathy Ann, I have been religiously gluten free for 16 months. I am a DQ2 and DQ1,6. All my numbers are still positive as of May. I am just starting to notice some improvement neurologically. I was diagnosed the conventional way but realized my gastro was not extremely informed about Celiac when I asked to have my vitamin D checked and he refused so...
  13. CDFAMILY
    Nancy, I am sure this is hard for your husband to understand. It is hard for all of us because there is still so much the doctors do not know or understand yet. Maybe have him read this file on gluten sensitive vs celiac disease. This file was developed in Braintalk by some very intellingent people that have done a lot of research. Jcc who put this...
  14. CDFAMILY
    Lala, What a wonderful granddaughter you are! After just being diagnosed last summer, I went to my nephews wedding. When I asked my sister to check on the meal she just stated...if there is something on the plate you can't eat, just don't eat it...she does not get it and she has the DQ2 and DQ8 genes...so some day she might just get it! I am not an...
  15. CDFAMILY
    I have kept in contact with Cindy. She is a very nice person who is only after one thing and that is getting her children returned. In the beginning she stated this was a shocking and unbelievable story yet suddenly when she wasn’t going the direction some wanted her to and she wasn’t disclosing all the information some wanted, a few deemed her sto...
  16. CDFAMILY
    I think one of the first things I was told by many people was to get all the flour and wheat out of the house. Mainly because of what you just said...that flour poofs and gets into your nasal passage which empties into your stomach.
  17. CDFAMILY
    What a beautiful son and what a beautiful story! CDMom
  18. CDFAMILY
    Tavi, You might want to check out this site to make an informed decision on whether to get more testing or go gluten free immediately. It has many sites that discuss Celiac Disease and Gluten Sensitivity. It is a safe a reliable site with references to many published articles. Open Original Shared Link CDMom
  19. CDFAMILY
    Cara, Thanks for all your hard work. It is great to have the Gluten File at our fingertips again! There is so much usefull information in your file and it is so well organized. Your hard work is greatly appreciated. CDMom
  20. CDFAMILY
    Hi, it has been a year since I read Elaine Gottscholl book, "Breaking the Vicious Cycle" on the SCD, Specific Carbohydrate Diet but I do believe she addressed this problem. Open Original Shared Link "The location of the sugar splitting enzymes, the disaccharidases, in the membranes of the intestinal cells makes them very vulnerable to damage from...
  21. CDFAMILY
    Andrew, I just couldn’t help replying either. I think I have read your posts in another forum stating a similar response. You are young and innocent and probably the age of my children. I too felt that way (that I knew more than someone else not in my profession) years ago but as I aged I realized my error. Arrogance is not a good quality for someone g...
  22. CDFAMILY
    Cindy, Neurological can include many areas including ADD, ADHD. Believe me I know because I was there. My neuro never said I had either but every time I watched the commercial that talked about adult ADD…I thought wow maybe I have that. I had many neurological complications that were becoming severe but were not being addressed by my doctors because t...
  23. CDFAMILY
    I have posted this a couple of times but thought I would post for you about the ferritin since your sons iron is so low. There is really no difference in treating a gluten sensitive person and a celiac person....they both go gluten-free. If you have a good doctor being GS will not be taken lightly but if you have a bad doctor he will consider it a fad...
  24. CDFAMILY
    Very good point 2Kids Using non accusing words is the best route to take now except at home and here of course then anything goes. I do hope your visit to the doctor goes well and this will soon become a distant nightmare! This may be a little late but I do hope you take any and all blood tests etc with you today and would question any blood work that...
  25. CDFAMILY
    Lister, Are you taking any mega vitamins? It sounds like you could have some serious deficiencies when you have such drastic weight losses. Vitamin deficiencies can cause leg movements, tingling, buzzing and many other neuropathy type symptoms. I would especially encourage your doctor to test you for Vitamin B12, B6 and vitamin D. Celiac Mom
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