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About NYCCeliacMom

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  1. I go to the Celiac Center at Columbia and see Dr. Lewis there. I think highly of her. I had the hydrogen breath test to make sure I did not have bacterial overgrowth in the intestines, which causes other problems, including roseaca, which I also have. I have not had other testing for intolerances but think it is possible I have others. I did visit a nutritionist (not the one at Columbia who is very good) who was not up on gluten free at all (she gave me literature for the Diabetic Asso that was ancient and said that buckwheat was a gluten grain). She gave me a test where I blew into a tube and said, there! you don't have any intolerances. I asked, ' shouldn't I have eaten the suspect food to make the test valid?" YES.... I will lookin into L Glutamine. Is that an amino acid?
  2. I am not sure this is the right spot on the boards but I just had my first repeat biopsy. I was diagnosed 2 years and 4 months ago and have been completely gluten-free since then. I have a Marsh 2 result on a recent biopsy which means there is still some villi blunting. This doesn't surprise me since I am still lactose intolerant. I will be seeing my doctor but I wonder if anyone knows whether this is okay at this point....should I have healed to the point of having Marsh 1 or 0? I probably had celiac my entire life but wasn't diagnosed until my early 50s.
  3. I see some time has gone by since you posted. I hope things are going well. It is fine to kiss a gluten-eating person a while after they have eaten. I have heard various time periods quoted, and I am not sure if this has been scientifically tested. If your spouse drinks a beer or eats a gluten sandwich, I would give it some time before kissing. Your 2 year old gets different kinds of kisses, I wouldn't worry too much. On this very forum someone said that huggies unscented baby wipes remove gluten. I always keep some in a plastic bag to wipe off gluten when out and about. Regarding risk of various celiac-related ailments, I have heard that your risk goes down to that of the normal population after 4 years gluten free.
  4. We just tried out the restaurant we picked for our daughter's high school graduation dinner. Unfortunately, I got sick with d. about an hour after eating there. I do not have food poisoning, or a flu, so I think it can only be gluten. I also know that nothing else suspicious was consumed today. I am very disappointed because this restaurant is well-regarded for its gluten-free menu. It is expensive, so we haven't gone there before but it is only blocks from the graduation and has a nice atmosphere. The food was richer and had more oil in it than I usually eat. Is it possible that my system is reacting to that and not to gluten? Usually I don't get the d. right away, but my gluten reactions have changed over time. Do others experience varying reactions? Do I call them and talk to the manager about it? Do I just hope things will go better when we eat there? Do we change restaurants altogether and just hope for the best? Sometimes I am really tired of being celiac.
  5. NYCCeliacMom


    Additional note on the Costo Zyrtec analog: I had a call from someone in their pharmacy department. She had forwarded my request on but said that she had read the ingredients online and there was no gluten in the Aller-tec. However, she was expecting to see "gluten" as a ingredient. Several days later I received call from the company that supplies some of the Aller-tec to Costco. The company name is Perrigo. He asked for the lot number on the back of the bottle and verified that the one I had purchased was gluten free. He said his company was working on labeling medications as gluten free and advised calling the customer service number of his company to verify gluten status: 1-800-719-2960. The Costco brand is Kirkland Aller-tec 365. which was $16.00 for 365 pills.
  6. NYCCeliacMom


    I was on hold with Costco about its zyrtec equivalent and came up this thread. I was surprised to hear the company that makes zyrtec was so unresponsive. They told me some time ago that the tablets were gluten free. I will post again what I hear from Costco but it sounds like theirs is gluten-free. I have been using the Target equivelent but have to call up every time I get a new lot number to confirm that it is okay. This is time consuming and costco's is much less expensive.
  7. I know what you mean...yesterday I was talking about how being celiac is affecting my daughter's decisions about where to apply to college and the well-meaning person I was talking to said 'oh, I was just reading how if you have celiac, all you have to do is just eat rice, fruits and vegetables and you will be fine'. Easy as pie, right? We have both gotten sick a lot this summer and usually is very small things (like a vitamin, or a container, or some random contact with wheat) that did it...
  8. The tips of the villi are where the enzyme is produced that processes dairy. Damaged villi cannot digest the sugars in milk, hence many celiacs are lactose intolerant. It can be a sign that you have celiac. If I had known this when I first became lactose intolerant, my celiac would have been caught years earlier. Once you are totally gluten free, your villi can recover and you may be able to digest dairy with no issues. I went though a good period a couple of months ago when I had no issues with dairy. However, I have had multiple small glutenings in the last two months and am now taking lactaid whenever I have a dairy product. No issues with yogurt for me, something about the fermenting altering the sugars. I have found that eating as though I had had an instestinal problem for a few days after a glutening is helpful..BRAT diet, bananas, rice, apples, tea. I mean to do that, anyway!
  9. NYCCeliacMom

    Ds Was Given Pretzels.

    You might want to check with the specialist's office about this, but testing will be skewed by being gluten free. Most doctors advise staying on gluten until after the testing.
  10. NYCCeliacMom

    Two Sick Kids And No Diagnosis

    That doctor sounds kind of like the ignorant one I saw 4 years before my celiac diagnosis...did an endoscopy but didn't do biopsies because he felt I "didn't fit the profile" of a celiac. If you are near New Haven, I would suggest a consultation with a pediatrician at the Celiac Center at Columbia at W. 168th St in Manhattan. My teenager sees Dr. Amy DeFelice and I think highly of her, but the other doctors there are all good. The fact is, if you have celiac, your children have the genes. They need to be monitored carefully. Also, damage to the vilii may show up visually but the small intestine is long and if the damage is patchy, it might well be missed. Bloodwork is also not perfect. It can matter a lot which lab does the tests. That is why some people send their bloodwork to Prometheus Lab in CA (some hospital labs here send their samples there). You need medical care where the doctor is listening to you.
  11. I have not been able to tolerate mushrooms for years. I would wake up a few hours after eating them and lie awake in pain until they passed. I was told by someone that mushrooms (particularly the fancier ones, not the plain white supermarket ones) contain mild toxins. I always figured it was that and haven't dared to eat a mushroom since. I was diagnosed with celiac last winter and forgot to mention this to the GI. I have wondered if once my digestive tract was healed, I would be able to tolerate mushrooms. From most of the answers on this thread, it seems not...
  12. NYCCeliacMom

    Lewis Labs Weigh Down Anyone Tried It?

    I also wrote Lewis Labs and this was their reply: <<Thank you for contacting us with your concern about the oat fiber in our product - Weigh Down. We've had this question before and the Lab., has assured us the oat fiber is gluten free. Please see the answer below (in blue). We hope this response is useful to you. Thank you again. Customer Service Lewis Laboratories International, Ltd. Oats have only a trace amount of gluten and the gluten portion is in the protein part of the kernel. Defatted Oat Bran is all fiber, no significant protein and is basically gluten free. The big offenders for gluten are wheat and barley products.>>
  13. I am struggling with weight issues. I was doing very well in July with careful portions, good nutrition, and exercise. I didn't think I was being too stringent but as usual, fell off the diet. I find that when I get gluten from somewhere, part of my response is lose control over my eating. I become particularly out of control with sweet and salty foods. I saw an ad for a product made by Lewis Labs "Weigh Down" which is a supplement you mix with water or milk and use as a meal. I was thinking this might be a way to help me rein myself in, so I bought some and used it this morning. I freaked out when I realized it has oat fiber as an ingredient. I called them to ask if they test the oat fiber for gluten. The person who responded was not very reassuring as she did not seem to know what I was talking about, and then assured me it was tested and was gluten free. Anyone else used this product? I do all right with gluten-free oats.
  14. Thanks for all the information about the miracle noodles. I am a little confused, though...is yam cake the same as miracle noodles? I have only seen them as shirataki noodles on the miracle noodle website.
  15. NYCCeliacMom

    Using Baby Wipes To Clean Surfaces And Hands

    Thanks for all the replies about this. I am approaching a two week trip with the family, and gearing up for the airport and being in a number of gluten environments. I have traveled several times since diagnosis and find it to be a crumb whirlwind. My 16 year old and I both have celiac and were diagnosed last winter. I am still frequently getting small amount of gluten, sometimes I know from where, but often not. I worry that is this just going to be the way I am, but maybe it will just take more time for me. I thought that soap and water were enough for cleaning plastic containers. Do we need to have separate gluten free plastic containers? Most of our leftovers go into glass but we have small lunch size containers that I use for school lunches and sometimes for myself.