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April in KC

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Everything posted by April in KC

  1. April in KC
    Quick update - My oldest son (7) said that if he knew your son, he would not make fun of him, and it reminded him of when some kids made fun of his peanut allergy. He also said to tell your son that he is not alone, we have Celiac Disease, too. He also asked about the possibility of home schooling. My 4-year-old son said that he should tell the kids to...
  2. April in KC
    (((((((((((HUGS)))))))))) to you and your son - or a high five if he'd prefer that. Please please tell him that he is NOT alone. I have a seven-year-old son with Celiac Disease and a severe peanut allergy. I also have major gluten issues and dermatitis herpetiformis / presumed Celiac by my GI. There's no two ways about it - kids can be really...
  3. April in KC
    Good points and info! I reread my post and I definitely don't want to scare you or make you jump to the conclusion that your child has selective IgA deficiency - which lots of people live with just fine anyway. It's just something I would ask your doctor about, as I definitely think low IgA can skew other IgA-based test results, like the last poster mentioned...
  4. April in KC
    Selective IgA defiency is 10-20 times more common in patients with celiac disease than in the general population. Many of the tests for Celiac Disease are based on measuring levels of certain specific types of IgA antibodies (like antigliadin-Iga or endoymysial-IgA) - but if your *total* IgA is low then you will not tend to have enough IgA antibodies to...
  5. April in KC
    I am not a doctor - but here are the things I would be thinking about / asking about. AGA-IGG is an anti-gluten antibody. Ttg is an anti-self antibody. In little kids with Celiac, sometimes you only get positives on the anti-gluten antibodies, but in your son's case he has already developed an immune response to his own body from intestinal damage....
  6. April in KC
    Please hang in there. My oldest son is gluten, dairy, soy and peanut free. My middle son is gluten, dairy and chocolate free. My youngest son has multiple food intolerances and it's easier to list the things he DOES eat. For five months, I was grain free (no gluten, corn, rice), dairy free and peanut free - now I'm just gluten free and lite on the other...
  7. April in KC
    Hi Betsy - you didn't say whether your symptoms were primarily of a GI nature, or rash (DH), or neuro/headaches/fatigue/brain fog. In my experience, different symptoms resolved in different amounts of time. I had many of the above. My cognitive symptoms lifted very quickly, within days. However, there were setbacks along the way as I continued to make...
  8. April in KC
    I'm in a small community northeast of KC in Missouri.
  9. April in KC
    Also - if you're considering taking your kids to see a GI in the KC area, I like Craig Friesen at Children's Mercy GI Clinic.
  10. April in KC
    GFJayhawk, I like the thorough explanation of testing in the following link: Open Original Shared Link This explains why younger children may have positive antigliadins but negative EMA and TTG. Also explains some of the reasons for false negatives. April
  11. April in KC
    Jessica - sorry for the late reply. There are two Genghis Khan restaurants in KC. The original (where I ate) is over in the 39th Street restaurant district - basically across from KU Med on 39th Street, north of Westport and the Plaza. There is another GK north of the river off Ambassador road. It's relatively close to Zona Rosa / Barry Road, but not...
  12. April in KC
    Hi there, There are not very many laboratories nationwide that are qualified to read and interpret the blood tests necessary to diagnose Celiac. So one possibility is that your lab did not send off your blood tests to be interpreted at Mayo or one of the other good Celiac labs, etc. However, you can still be negative even if you had a good lab. ...
  13. April in KC
    The physical locations you mentioned sound really suspicious for DH. Elbows, knees, butt are all classic DH places. I do not know about lactose and DH, but I do know that bad cases of DH can take a very long time to clear - sometimes more than a year. If it's DH, as the IgA levels in her blood and skin fall, her skin should get better and better over time...
  14. April in KC
    Soy milk doesn't taste bad, but some kids can't have it - my oldest Celiac son is allergic to soy and peanuts. He drinks the Calcium enriched OJ. Also Almond Breeze almond milk has added calcium, and it cooks up great as a milk substitute. We like Almond Breeze Original and Chocolate. When cooking cakes, sometimes I add an extra egg, replace milk...
  15. April in KC
    Hi there! It's so hard to start a gluten-free, dairy-free diet, but I promise it will get easier as you figure out what you can eat. I have done it, so I know what you're up against. Try searching on the internet for "Gluten-free Casein-free". That means gluten free, casein free. Casein is a protein in milk - and things that are casein free are almost...
  16. April in KC
    This past weekend, I had a great meal at Genghis Khan Mongolian Barbecue. This is one of those places where you place your choice of ingredients in a bowl and they cook it for you. I had been several times in the past prior to going gluten-free, but this was my first trip back since. I brought a bottle of San-J wheat-free tamari with me, as I thought...
  17. April in KC
    My kids really like gluten-free Cheecha Krackles - have to order them online: Open Original Shared Link They are a puffed potato snack. Pretty tasty, and easy to get my picky kids to try them. Be careful, they also have non-gluten-free Krackles made in a different facility. Be sure to order the gluten-free ones. Also, General Mills makes a new...
  18. April in KC
    Hello there - I travel quite a bit for work, too, but I'm not often put in a position to eat from a fixed menu - that would be a difficult situation. My company is moderately large (>5000 employees) but not as large as yours. Since you're working for a very big company, they will have a correspondingly big Human Resources department, perhaps even a company...
  19. April in KC
    You might google the word "formication" to see if that describes what you're feeling. And note the "m" in the spelling - I'd hate for you to accidentally google "fornication," LOL. Formication can be neurological in origin. I agree that food intolerance is one possible cause. Like Ursa, I also used to have RLS - but it has gone away on a gluten...
  20. April in KC
    Hi Amy - I have a little different perspective because I have a son with a severe peanut allergy and Celiac disease. The peanut allergy is so scary, as it started out with just mild reactions and the last one was anaphylactic. I did eat PB when pregnant with him, and while nursing. No one in my family had nut or food allergies - however I had undiagnosed...
  21. April in KC
    So sorry about your daughter's reaction. My oldest son has Celiac + severe peanut allergy + mild soy allergy, and he's been off dairy for several months for other reasons, but we're going to try adding it back in. I sure hope she is not soy intolerant - it is in so many things. Some kiddos who are soy intolerant can have "soy lecithin" because it is...
  22. April in KC

    ARCHIVED Recommend A Doctor In You State

    April in KC replied to a topic in Doctors

    Old thread, but a positive shout for Dr. Craig Friesen in Kansas City, MO (Missouri), a pediatric GI. He made the connection between my son's reported proprioception / sensory problems and the possibility of vitamin E deficiency. Sure enough, he tested low, and we are about to begin supplementation. My son also has very small muscles (was suspected of...
  23. April in KC
    I hope you're doing okay today. I have heard that gallbladder problems are MUCH more common during pregnancy. Had you eaten anything greasy or high in fat earlier? April
  24. April in KC
    Hello! I am traveling to Stillwater on Wednesday for business. Does anyone know where I can get a gluten-free meal near OSU? No biggie if not - I am only there one day. Thanks! - April
  25. April in KC
    I wanted to add a couple of things... About fear of blood tests - if he's not used to having his blood drawn, it's natural to be a little scared, but it's really no big deal. I just took my three-year-old for one yesterday. He was frightened, but he laughed a little bit after it was done because he was relieved that it wasn't very painful. If...
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