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CDFAMILY

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Everything posted by CDFAMILY

  1. CDFAMILY
    Ali, How did your doctors appt go? Age 27 that is a wonderful age...my son age 25 was just diagnosed with very few symptoms and over weight. I was diagosed last year...I will be 52 soon My daughter was diagnosed at age 18 As you can see age does not make a difference for a diagnosis.
  2. CDFAMILY
    Hi Donna, I thought my info on what happened to my daughter on a very slim gluten challange might be helpful. This is an old 1982 article on children and ferritin. My daughter was 17 at the time of the challange. She had had a negative biopsy in October but has had many serious physical problems which all point to Celiac. Mostly she had constant uncontrollable...
  3. CDFAMILY

    ARCHIVED Help Finding New Docs

    CDFAMILY replied to mmaccartney's topic in Doctors

    I would not say Cleveland Clinic without caution. I too am from that area and they are on our insurance but I went thru the list just yesterday and did not find one doctor who specializes in Celiac Disease. Although they are rated #2 for Digestive Problems, I do think they are way behind with Celiac....not a big money maker yet so it is on the back burner...
  4. CDFAMILY
    Curious as to which ones were positive?
  5. CDFAMILY

    ARCHIVED Double Vision

    CDFAMILY replied to elye's topic in Coping with Celiac Disease

    Emily, Double vision is what led to my Celiac Diagnosis. Mine were two brief episodes which sent me to a stroke neurologist. Then I experienced vertigo a few times and then I started noticing major weakness in my legs which spread to my chest and arm muscles. He did many tests which found my B12 deficiency and High homocysteine and some mild axonal damage...
  6. CDFAMILY
    Hi Holly, I have a hard time with biopsies also....can you really trust them...I had and still have a positive AGA IgA, tTG and EMA...but my biopsy only showed "Mild Chronic Inflammation and slight Villous Blunting....Comment: The possibility of partially treated celiac sprue cannot be excluded. Clinical correlation is required".....It was a positive...
  7. CDFAMILY

    ARCHIVED Need New Doctor For My Girls

    CDFAMILY replied to Jodele's topic in Doctors

    Jodele, I am so sorry this doctor is so difficult. Apparently this doctor has not read the most recent information about biopsies....they can only rule in Celiac Disease, not rule out....because of the patchy nature of the damage. My Gastro said I did not need a biopsy because of high positive AGA, EMA and tTG but I opted for it since I was the first...
  8. CDFAMILY
    Cinemark said their popcorn is Gluten Free....but I still do not eat it. It could be the corn that is bothering you.
  9. CDFAMILY
    Are you serious....she only took ONE biopsy...she needs to talk to Dr. Green....he said you need at least 6 or 8 and you could still miss the damage!
  10. CDFAMILY
    Ali, The bumps could be DH which is a skin form of Celiac Disease. Do they itch? The swollen tongue with bumps could be a B12 deficiency. I had that all the time. I alsoI also would get the worst canker sores from biting my inner lips and tongue. I also had a burning tongue whenever I would eat salads....I thought everyone had that until I took B...
  11. CDFAMILY
    Betty, I know how frustrating this can be!!! Most doctors can NOT see damage with an endoscopy exam unless they have the latest technology and they know what they are looking for. That is why they should take 6-8 biopsies in different areas and even then, they can miss the damaged area. After 7 months gluten free and you still have a high normal...
  12. CDFAMILY
    My nails have been a problem for years. I had the same as most, white spots, no moons, ridges, weak and splitting, nail polish eats away nail. I found my B12 deficiency first so started taking mega doses of sublingual Methylcobalamin and B complex which helped some. I went gluten-free in June 2005 but didn't start taking mega Vitamin D (2000IU a day...
  13. CDFAMILY
    Lisa, good luck with your withdrawal and hopefully you are supplementing with vitamins also. My husband took Lexepro before being diagnosed with Celiac Disease. After taking this drug for about a year he started having major sleep problems. I also noticed a lot of limb jerking throughout the day. He did a sleep test and was diagnosed with Periodic Limb...
  14. CDFAMILY
    Hi, I have been wondering about Nut-Thins lately too! I recently purchased quite a few boxes because they were on sale. Among the purchases were the new almond cheddar cheese crackers, which were in the special gluten free section of the store. After trying the crackers, I read the box and it DID NOT have the gluten free label anywhere on the box like...
  15. CDFAMILY
    Hi, I used to have a burning tongue all the time. Have you had your vitamin B12 checked, that is a major sign of a deficiency.
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