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Cara in Boston

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Everything posted by Cara in Boston

  1. Cara in Boston
    Seems odd that your doctor is willing to do an endoscopy but not more blood tests. My son was diagnosed at age 6. He was negative on all the celiac tests except the TTG IgG and DGP IgG. It was very confusing as his only symptom was behavior. Similar to what you describe. Complete meltdowns over seemingly insignificant things. He was also very lethargic...
  2. Cara in Boston
    My son's tests were all normal except the IgG ones. He had no classic celiac symptoms. He does not have the common gene for celiac. They did a biopsy and found extensive celiac damage.
  3. Cara in Boston
    Our doctor tests my non-celiac son (age 11) every two years . . . sooner if symptoms develop. Many with Celiac have no symptoms at all so you can't really count on that happening. All first degree relatives on someone diagnosed with celiac should be tested on a regular basis. I don't know if it is different for toddlers.
  4. Cara in Boston
    My son was diagnosed with Celiac by blood test and endoscopy. I just wanted to let you know that the genetic test will not confirm whether or not you have celiac. My son's genetic test indicated he had a LOW probability of having it, leading his first doctor to determine that he did not have a problem with gluten. Luckily, we didn't stop there and continued...
  5. Cara in Boston
    If you are still getting symptoms than it would follow that you are still getting gluten (from somewhere). I would bet it is cross-contamination since I imagine a college student is eating a lot of meals outside of your home. If you are still getting gluten (assumed) then you should be able to have the blood tests now. My doctor told me 6 months with...
  6. Cara in Boston
    I think I posted this on another thread, but it seems relevant here too. Younger son diagnosed with celiac by blood and endoscopy. Older son tested too (no symptoms, but he is related . . .) and was negative on every blood test. He did, however have weird striations on his teeth . . . our doctor at the celiac clinic ordered a endoscopy for him too...
  7. Cara in Boston
    Going in tomorrow to update my son's 504 plan at school. Our first one was very casual and I want to tighten it up so it will be easier (I imagine?) when we transition to a new school soon. I've added a shelter-in-place plan (after the events in Atlanta this winter) and now I want to add something about "allergy bullying". We have not had a problem...
  8. Cara in Boston
    Joe has been gluten free for almost 3 years. In that time, he was only glutened once (that we know of) and that was about 2 years ago. Before diagnosis, his only symptom was horrible, horrible behavior. No GI symptoms, nothing else really. When he was glutened years ago, he had very painful stomach cramps and felt "yucky" for about a week (fatigue, no...
  9. Cara in Boston
    Welcome to the board. There is a good chance your son has Celiac Disease. There is a documented connection between Celiac and Down's so there is a chance that this has no genetic connection whatsoever. We were originally told that my son did not have celiac disease because his genetic test indicated he was at low risk . . . even though he had a positive...
  10. Cara in Boston
    Also, check in your area to see if there is a Celiac Support Group. Ours (Boston) is wonderful and they welcome you by sending out a big (very big) box of gluten-free treats. My older son was actually jealous that he didn't have Celiac when the box arrived for his brother. They also plan events for kids and discussions/lectures for parents. Get everyone...
  11. Cara in Boston
    Celiac can be triggered at any time so being negative at 2 does not mean he would still be negative at 4. That is, IF he was actually negative at two. Blood tests are not always accurate in young children and doctors don't always give the correct panel of tests. He has all the classic symptoms and a family history (probably) of celiac. Be sure to find...
  12. Cara in Boston
    I keep a canister of Pamela's baking mix in my pantry for everyday use (thickening sauces, pancakes, etc.) If I want to make a long-time family favorite taste (and behave) like it did before we went gluten free, I use the ridiculously expensive C4C flour blend available at Williams Sonoma. I get almost the exact results when I use that and non-gluten...
  13. Cara in Boston
    I'm not a huge fan of the dark green leafy vegetables but I try to eat some every day. I usually buy the pre-washed baby spinach and baby kale. In the summer and fall, I have Kale in my garden and grow so much I end up spending an hour cleaning and chopping it, then I quickly blanch it in boiling water and freeze it in 1 cup portions. I can easily add...
  14. Cara in Boston
    Me again . . . My older son tested negative on all the blood tests (when I had the whole family tested after younger son's diagnosis). Our doctor (a celiac specialist) still requested he have an endoscopy because he had strange discolorations on his teeth. His biopsy was negative too . . . and now, a few years later, his teeth seem completely normal...
  15. Cara in Boston
    From what I have read, there is no danger in breathing it in or having it come in contact with your skin. However, wheat flour becomes airborne and settles on everything. To avoid accidentally ingesting it (from her hands?) she would need to really wash everything . . . if she washes her hands, but then touches her clothes or hair, she could get it on her...
  16. Cara in Boston
    Are these the only tests he had? You absolutely cannot rule out Celiac Disease based on these tests alone. He got mostly genetic tests (which really don't tell you anything more than he may or may not develop the disease in his lifetime . . . and there are always exceptions) and two of the blood tests. (A full panel has 5-7 different tests) Looks like...
  17. Cara in Boston
    All my numbers (cholesterol, etc.) improved on the paleo diet. My doctor was SHOCKED when I told her I had switched from eating whole grain cereal every morning to two eggs and an avocado every morning. If you are missing rice, google "cauliflower rice" and make that. I am NO FAN of cauliflower (smells too much like cabbage) but as "rice" I can barely...
  18. Cara in Boston
    I think I responded to another one of your posts, so I hope I don't repeat myself. I agree with everyone else that you should insist on a full blood panel (or just the missing tests) before the house goes gluten free. But even then, kids can have negative blood tests (and a negative biopsy) and STILL have celiac disease. But you are right, if you can...
  19. Cara in Boston
    The initial blood panel just happened to include the IgG tests. There was the total IgA, Anti Gliadin IgA, TTG IgA, Anti Gliadin IgG and the TTG IgG. I guess we just lucked out. When I asked the "jerk" doctor who said he could not have Celiac because his IgA tests were negative to explain the high IgG numbers his answer was, "lab error?" My sister...
  20. Cara in Boston
    I always look for products with few ingredients (Teddy Peanut butter is great and readily available in most stores) or I make my own. We usually just use olive oil, balsamic vinegar and salt on a salad, but in the summer I will make a bottle of "dressing" early in the week and use it daily. Check out pinterest for lots of good dressing recipes. It takes...
  21. Cara in Boston
    Yes to what everyone else said . . . especially about not changing his diet until all testing is done. Sounds like he already had the endoscopy? Then you are all set. Just some encouragement: my son was a picky eater until after his celiac diagnosis . . . a few months gluten free and he is now the most adventurous eater in the house. I think he just...
  22. Cara in Boston
    Both my son (6 at the time) and I went gluten free together. He transitioned fine, no problem. I had terrible "withdrawal" symptoms . . . sometime they were as bad or worse than my gluten symptoms. It lasted a little over a week and then gradually (very gradually) got better. It was such a wonderful surprise when I had to actually stop and think about...
  23. Cara in Boston
    Everyone's reaction time and symptoms are different. When I have been "glutened" I didn't notice right away but a day or two later I start getting symptoms. The obvious ones go away within days (GI symptoms) but I am left with lingering fatigue, brain fog, and joint pain for a week or two. Also, (not to worry you more . . .) after being gluten free, your...
  24. Cara in Boston
    My son was only positive on the IgG tests (Anti-Gliadin IgG and TTG IgG) as well. To make it more confusing, his total IgA level was normal. His only symptom was a drastic change in behavior. No classic GI symptoms, no malabsorption issue . . . really in quite good health. She sent us to GI specialist who was also confused. He did a genetic test which...
  25. Cara in Boston
    After a few weeks of being gluten free and feeling so much better, hopefully you will realize that a celiac diagnosis is waaaaay better than "just" having IBS. I didn't realize how much my symptoms were impeding on my social life until I felt better and could get out and do more things. To me it is a blessing that I can "fix" this without medications, side...
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