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carecare

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Everything posted by carecare

  1. carecare
    So also interesting...that folate and b12 deficiencies can cause this. The year my daughter wore a monitor because we wanted to figure out what was going on...I remember her seeing a Ruematologist for her joint pain and swelling. At one point the Reumi called and told her to take folate and b12 as her blood work showed she was deficient...plus her blood...
  2. carecare
    I've been trying for years to get my sister who has debilitating issues at times...from what was first thought to be MS but now the doctors say they aren't sure. She has just about all the symptoms listed under gluten ataxia...she has other issues that are common with those afflicted with celiac. Her husband recently asked the dr's at mayo clinic to test...
  3. carecare
    My question was hypothetical because I was just curious. My son (just turned 12) and is getting an endoscopy in mid December. He did get a full celiac panel done...everything was negative except for the high DPG IgG. I'm happy to report that the doctor told me he would do 9+ biopsies of the small intestines because he is indeed looking for celiac...better...
  4. carecare
    I sent a question to the University of Chicago Celiac Disease Center on facebook regarding the DGP being elevated and what they thought that would mean if a child came back with a negative biopsy. I wanted to know if other tests were negative but the Deaminated gliadin IgG was flagged as HIGH and positive if that would possibly mean more of a gluten intolerance...
  5. carecare
    This is so interesting. My husband used to tell me about the heart palpitations he used to get. Now that he is gluten free...he has not complained about them. However, my 17 yr old is getting them more frequently and when at the age of about 11/12 she wore a monitor for 24 hour as well. It was also the time she dealt with joint pain and stiffness daily...
  6. carecare
    genetic testing will not confirm celiac disease or not. Some here on the forum do have confirmed celiac yet do not possess the gene that predisposes you to celiac disease. Did she have the celiac blood test? not the gene test. I also think that there is bound to be some stool changes when first starting a gluten free diet. Also, I do know that when...
  7. carecare
    If you've looked into reading around on the forum you'll see that getting a negative celiac panel blood test does not rule out celiac. There is a high incidence of false negatives...especially in children. Also, was he eating gluten when you had the celiac panel done? If not..then it was useless to get. You have to be eating gluten for up 3 months...
  8. carecare
    interesting...my son is back on gluten so he can get an endoscopy in December. His original symptoms came back (muscle pain and canker sores) but now he's complaining of feeling dizzy. I figured it was from the gluten issues. Sucks.
  9. carecare
    Are you gluten free? My husband started having some gallbladder issues right around the time he started gluten free. Well, actually for years he had this minor dull pain under his right ribs that he tried to ignore. Then went gluten free and had about 3 major attacks..that left him on the floor almost passing out it was so bad. Refused to visit a doctor...
  10. carecare
    Caffe Naturally in Green Bay, WI is a 100% gluten free kitchen I know in Madison Wisconsin there are a couple gluten free bakeries....just don't know their names off the top of my head.
  11. carecare
    I never put two and two together until reading your post. My husband is the same way to a point. He used to get these rages...where if I said or did the wrong thing he'd just flip out into a rage...then later be so apologetic not knowing why he reacted that way. It would always bring me to tears. We are not a fighting kind of couple so when this would...
  12. carecare
    Like...for instance I was reading about people going to parties and as long as the guests were using gluten free items they'd be ok. However, everything I've read states you need to get rid of anything plastic, nonstick cookware, scratched surfaces of other metal kitchen items that you've used gluten in/on. How could you ever go to someone's house that...
  13. carecare
    Now at least you can keep your son healthy....always good to have answers. Best of luck with your son's new diet.
  14. carecare
    All of that family history really makes you wonder doesn't it! It looks a lot like my own family's history of different things and I think they are starting to think I'm a little nuts with the whole "you should get tested for celiac" statement all the time...LOL Or my statement "you should really just try a gluten free diet." I must say it at every...
  15. carecare
    You know...I don't understand the need for doctors to say "no, we don't need to test for celiac." If a patient asks for a test....shouldn't the doctors just do it. Also, forgot to say my husband had bad indigestion for years before going gluten free. I used to get so upset with him for not going to the doctor and just suffering. Now I think back and...
  16. carecare
    I also want to say...since my husband is anti-doctor he wouldn't go in when he was having gallbladder attacks. It was right before going gluten free...and a couple months into the gluten free diet as well. He spent his attacks in pain on the floor whereever they occured (at home luckily)...almost passed out a couple times from them. We did a lot of reading...
  17. carecare
    We have a similar situation in our family. My husband went gluten free 2 yrs ago because of intestinal issues for 15-20 yrs. Cleared up completely now that he's had time to heal. His mother is lactose intolerant and says "oh, I just can't eat whole wheat." ...and had early osteoporosis (whatever that is called...scans showed it)...plus a thyroid condition...
  18. carecare
    They were off of gluten from the beginning of August until the later part of September. Maybe a month and a half. Yes, that is why I was concerned about making sure they are on it long enough to show any damage. It's hard to believe how once off gluten...then back on it...how much more severe the reaction becomes. Well, certainly for my boys.
  19. carecare
    I had my 18 yr old's appointment today ..with the ped GI dr. She's scheduled for her endoscopy Dec. 20...my boys are scheduled on the 16th. I mentioned how my boys have been suffering from day one of going back on gluten 10 days ago. He asked if I thought we'd make it until Dec. 16th or not. I said it's certainly difficult knowing one is having daily...
  20. carecare
    So I wonder this...do dr's believe a patient to be gluten intolerant if their biopsies are negative yet have a positive IgG test? I'm curious. My son was positive on his deamidated IgG test...and his endoscopy is in December. However, no matter what the test reveals in december a gluten free diet will be resumed 100% because I know he has an issue with...
  21. carecare
    You have to give it time. It actually took my husband 5 to 6 months to recover...meaning he still got diarrhea for that long after eating gluten free. I believe your intestines still have to recover and it takes longer for some than others. He had dealt with D for 15-20 yrs and after 5-6 months gluten free it finally stopped and hasn't come back. He knew...
  22. carecare
    Meaning...if you were once eating gluten and then found out you were celiac or gluten intolerant did your endo pain get better when starting a gluten free diet? Reason I ask is I recently found out the pain I've been having is probably endometriosis. I thought it was an ovarian cyst that wasn't resolving itself for 5 months but when I got my ultrasound...
  23. carecare
    Thanks everyone. I will ask him about this and request more from the small intestines for sure. I bring my 18 yr old daughter in on Friday so she can schedule that endoscopy for winter break. I hope he is receptive to my request I also hope he has some suggestion about whether we should continue on eating gluten. 12 yr old is suffering(muscle pain...
  24. carecare
    My son met with the Ped. GI doctor that specializes in celiac disease at Children's Hospital in Milwaukee last week. I asked the nurse how many biopsies would be taken during his endoscopy in December and she said 8...then she said...2 in the esophagus, 4 in the stomach and 2 in the lower intestines. Shouldn't it be more in the intestines...and why so many...
  25. carecare
    Thanks skylark and momto3. Yes...this is definitely going to be a long 2 1/2 mnths if we make it that far. My son who has the most problems with gluten as far as we can tell...the muscle pain said his muscle pain yesterday was even worse than the day before. Then last night he was hunched over in pain. I wasn't sure what was going on...as we were in the...
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