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CDFAMILY

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Everything posted by CDFAMILY

  1. CDFAMILY
    Hi Renee, Sorry this is a little late,but I did want to comment on the negative IGG. I am a gold star celiac and have always had a very negative IGG in everything. I believe I may be IGG deficient as my daughter is. I discussed testing for IGG deficiency with my doctor but decided the only benefit of knowing would be to do IVIG treatments which I would...
  2. CDFAMILY
    Ok Josh, You do need to get another doctor. For one thing this doc should never have prescribed PreVac without telling you to also get some probiotics. Even my Internal Doc knows that! I take 2 different kinds, Natures Way Reuteri and Optima. One is specifically good for the small intestine and the other ...can't remember maybe for the large intestine...
  3. CDFAMILY
    Hi Joshua, Lame Advertisement.com is a good place to get vitamins. A good place to read about vitamins and ask questions is on... not sure if I am allowed to post this site, but if you don't see it PM me (private message me and I will send you the link) Open Original Shared Link Don't make the mistake I made and buy a bunch of gluten-free food...
  4. CDFAMILY
    Hi JK, Your numbers are high enough where my gastro would say you have Celiac without the traditional biopsy, but some gastro's insist on doing a biopsy too. Anxiety is a major symptom that many Celiacs experience. This will eventually go away for most with a strict gluten free diet. Your villi should improve in just a few months with the diet also...
  5. CDFAMILY
    Deb, Also, doctors don't tell you this, but I always stop my vitamins for a few days before getting labs done. I personally feel it makes a difference in showing what you are actually absorbing. With B12, you almost have to stop for a month to show actual absoption, but you can ask for the MMA and Homocysteine test and look at you MCV and MCH lab work...
  6. CDFAMILY
    debmidge, Not to get off the topic but when I read your husbands problems, I just wanted to make sure your doctors are covering all bases. Developed neuropathy in 2005 Now has lymphadema 2006 Has your husband been tested for Vitamin deficienies lately? He needs to be tested every 4 months in my opinion to see what levels are going up and down...
  7. CDFAMILY
    Dear Mom, Congrats on being persistent! The doctor comments are priceless. Here were mine: Family doctor.."You are just looking for a disease....you need to go on Prozac and gain 15 pounds" she even knew I had 2 type 1 diabetic brothers! Family doctor sent letter stating I did not have Celiac Disease. (One month later picked up copies of tests...
  8. CDFAMILY
    Dear Kath, Here is a good place to read about tests: Open Original Shared Link These are the tests you want done. Many doctors still think the Gliadin tests should be done but many are ignoring these tests. I have met people with positive biopsies and only a positive gliadin IgG so that is why I recommend the complete panel. 1.Anti-gliadin...
  9. CDFAMILY
    Hi Gateway, Your symptoms do sound very suspisciously like Celiac Disease. If you are taking a B vitamin with B12, you will get strange numbers. Before being diagnosed with Celiac, my Neuro found my B12 deficiency. I went from 200 to 2000 in just a couple of months from taking B12 and B complex. I do disagree with the thought that you will not need...
  10. CDFAMILY
    Dear Joellen: I understand how confusing this all can be but I just want to mention how lucky you are because you have a doctor that seems to be ahead of the typical MD's who only look for Celiac and don't have the education in the other problems that are attached to being Celiac or Gluten Sensitive. On the other hand I do agree that a full Celiac Panel...
  11. CDFAMILY
    Hi Shannon, Here is a sight that explains the tests: Open Original Shared Link I have talked to people who have had only a positive Gliadin AB IgG with a positive biopsy. Another mother that talked to Dr. Rodney Ford said her maybe 2-3 year old tested negative for all tests except the new DGP test. A low TtG test can mean there is not severe damage...
  12. CDFAMILY
    Hi Shannon, I am sorry to hear you are having so many problems. Your IgA=127 is probably your Total IgA which is in the mid range and makes it normal so you are not IgA deficient which is good to know. Do you know the ranges of the TTG and AB IgA? The TTG looks to be normal, but one needs to know the range. You can call and ask to have the exact...
  13. CDFAMILY
    Hi Lovemy4babies, I just wanted to let you know that the IgA test may be the Total IgA test. If it is, yes they do look for a low result which would then render all other IgA tests as useless and then the doctor orders the Gliadin IgG, EMA IgG and TtG IgG test. If the IgA test you have mentioned is the Total IgA of 120 then that would be a normal range...
  14. CDFAMILY
    Milk can be a big part of healing for some people. You have continuing inflammation so the next step would be to figure out what is causing it. If you had 3 of 4 tests positive, I might assume it was the Gliadin Antibody IgA and IgG and maybe the tTG IgA. If the tTG IgA was positive, I see no reason for you to put yourself thru such misery as many doctors...
  15. CDFAMILY
    Hi Holly, May I ask what blood test you had that was positive. Even if you have Crohn's, I would sincerely wonder about stopping the gluten free diet. I have a good friend who was dx with Crohn's and asked the doctor if a gluten-free diet would help...Doc said absolutely not...he not only went gluten free but did the SCD diet and was able to go off all...
  16. CDFAMILY
    Hi Jacflash, I am one that put a Gold Star Celiac only because I can say that I do not believe in biopsies and sometimes I need this reference in order to make the doctors or people for biopsies understand how unreliablable the biopsy really is. I am sure I was a Celiac Toddler after having my first Cleft Palate operation at 18 months. From there, many...
  17. CDFAMILY
    With your daughter having 2 Celiac genes, that means you have at least one celiac gene and your husband also has at least one Celiac gene. You only need one Celiac gene to have Celiac Disease. You do not need any of the Celiac genes to have Gluten Sensitivity. So to the question of should you wait for daughters diagnosis before you start the process...
  18. CDFAMILY
    Dear Nicole, Yes bowel urgency is a sign of Celiac just not a commonly mentioned one. The reason probably is that most women/men do not want to mention bowel accidents to doctors. I did send a note to DR. Green to put this symptom on the list....but still don't see it. I also had some IBS symptoms starting immediately after the birth of my first child...
  19. CDFAMILY
    Hi, I have had an endascope twice drug free and once drugged. The first time was before Celiac and I had an ulcerated esophogus...that was a breeze and I watched the whole time. The second time was for my official diagnose and I was drugged. No real problems afterwards. The third time was because my Celiac numbers were still high on a strict gluten...
  20. CDFAMILY
    I am interested in finding more Celiacs that also have Cleft palates. I wonder if some clefts may be caused by undiagnosed Celiac mothers with low vitamin levels caused by malabsorption. These mothers could very well be folic acid along with other vitamin and mineral deficient. I also read an article discussing Biotin and zinc deficiency. I found...
  21. CDFAMILY
    Hi, Does anyone know the cost and pounds of the 365 whole foods baking flour?
  22. CDFAMILY
    Zachsmom, How many pounds of flour and how much did it cost? I use something called Mr. Ritt's flour that must be similar. It is made in PA. It is fantastic, but the price just went up I noticed and I believe it was $9.99 for 3 pounds. It was $6.99. I will not do much baking at that price but it is very convenient and tastes almost normal and sometimes...
  23. CDFAMILY
    Silk, You may want to get your vitamin and mineral levels checked. When my daughter and I were low on zinc everything tastes weird and not the same. Open Original Shared Link Are you taking a good multivitamin? There is a zinc copper ratio you need so it is best to get levels checked before taking them.
  24. CDFAMILY
    Hi again, I wonder if they would do the Celiac HLA's on your son. I am thinking it might have been caused by a folic acid deficiency in my mother who probably has Celiac but she is 78 and doesn't really care to know at this point in her life and has cut down on her wheat consumption....so she says. My brother with a cleft also has the exact same...
  25. CDFAMILY
    Dear Confused, I was really interested when I saw your son has a cleft palate. I too was born with a cleft palate along with a younger brother. I have been wondering what relationship their might be with this. My mother has DQ2 and DQ1 0603 while my dad has both DQ2 and DQ8. I ended up with my Dad's DQ2 and my Mom's DQ1 0603. Did they test your...
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