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Christina.V

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About Christina.V

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  1. Thank you SO MUCH for those statistics, and the reports to back them up. I feel like my mothers intuition is saying that he has it, so I'm not willing to walk away from this and say he's all clear. Even though my intuition tells me this I realize it needs to be a data driven decision. I would be happy to go gluten-free for a year and see how he does. It's definitely a matter of convincing the ex to do the same. Right now I'm going to get a second opinion. 😊
  2. We are trying to figure out if my 5 yr old has celiacs, any advice would be super helpful! The indicators that he may be positive: I have celiacs (and did not have any GI symptoms prior to Dx) 250 Ttg/iga elevated liver enzymes diarrhea and stomach pains when eating gluten at my house, Ex-H claims that he is symptom free at his in the biopsy, the surgeon indicated that when he introduced water into the small intestine he saw some damage He is only in the 5th percentile for growth Indicators that he may be negative: the biopsy results don't show any damage Any advice on additional bloodwork that I can have the Dr. run? I don't want to simply say "oh the biopsy came back negative, so he's in the clear". My ex-husband is saying that I'm on a witch hunt (grrr). My goal isn't to continue poking and prodding my poor little man, but the ex refuses to just go gluten free voluntarily. It's very frustrating!
  3. I was asymptomatic prior to Dx, so my will power does fail me from time to time. Last week I was at a football game and incredibly hungry. Of course stadium food is the worst so I caved and at a piece of pizza. Then, this past weekend I ate one of my mom's homemade flour tortillas (they are the #1 thing I miss the most). Both times I did wind up having some stomach cramping. I consider myself incredibly fortunate because that's ALL I had. Of course, now, my willpower is in check for the upcoming holiday challenge!
  4. I was told today that the Red Robin seasoning has gluten. I'm fairly new to gluten-free so can someone tell me which of the listed ingredients (if any) is the culprit? The label doesn't indicate gluten... Salt, Spices (incl black pepper, celery seed, cumin, oregano, sage), dextrose, dehydrated garlic and onion, paprika, autolyzed yeast, dehydrated tomato, hydrolyzed soy protein (carmel color), natural flavor (smoke). CONTAINS SOY
  5. Per the docs it's "slightly elevated" -- they are looking at >100 as being "highly elevated" It's all in the interpretation I suppose!
  6. Labs have different ranges. In this case <15 is a negative. So the 27.6 number on the TTG IgA is not "highly" elevated. The recommendation is coming from two of the top specialists in Colorado. I think I said this before, but the worry is that we actually have caught it too soon to tell, and that long term a false negative diagnosis will be more detrimental than holding off. I agree, because IF she does have celiacs and gets a false negative, the co-parent will fight me on getting her re-tested in the future. I am actually comfortable with waiting for 6 months. We share custody 50/50 and have shared decision making as well. I don't see how a judge would dictate that the endoscopy be ran with so much medical advice to the contrary. I was extremely frustrated a couple months ago BEFORE we met with the doctors. They said they've seen these numbers go back to normal over a short period of time, hence the 6 months. I'm hopeful that they do.
  7. I am one of the "silent" cases for sure, so I did voice the same concerns as you all are pointing out. Not only is she not showing severe symptoms, but she is also on track for her growth charts and her numbers are slightly above normal (not in the 100s). The decision to hold off was not made lightly! The hope is that her numbers may normalize. The co-parent does need some education on it, however, without very strong direction from the specialists at Children's nothing is going to change. I can give him as much information as possible, I can preach until I'm blue in the face. Thanks for caring! It's so nice to have a community like this!!
  8. My diagnosis came a couple weeks ago after bloodwork and a biopsy (a hepatologist performed those). I have a referral to a GI doc but not until Mid-july. I have an appt with my PCP in a couple of weeks, though, and I'm planning on asking about additional bloodwork that might need to get done. Recommendations on what tests to get? I don't prefer waiting around for the doctor to tell me what to do, I'd rather come in prepared! I've read that I should have some vitamin levels checked but am unsure which ones. And, yes, of course I'm gluten-free now as well. Making that change hasn't been all that difficult but it's only been two weeks.
  9. These sound SO GOOD! We took a trip to whole foods last night and found WAY too many yummy goodies and stocked up. The creme brulee, chocolate pot de creme, and coconut macaroons are probably my top three favorites. Everything in moderation of course. Fortunately 1/2 of the small creme brulees is plenty for me.
  10. Fortunately she doesn't feel sick every day. And I don't intend to have gluten in my household. She's pretty vocal about when she's not feeling well! In fact, she was the one who prompted the initial dr visit. If her symptoms do get worse, then I'll persue the EGD and biopsy for sure. The doctors at Children's were in agreement in spite of the opposition from the co-parent.
  11. Obviously 90% of their food is not safe, but what about the drinks? Their corporate answer is that due to the nature of "handcrafted" beverages they could CC, but what has been your experience? Do any of their drinks have gluten ingredients?
  12. I'm finding that I'm fine throughout the day, but nightime snacks are hard for me! I keep craving cookies and cakes. Last night I grabbed an apple and put some nutella on it but it didn't quite hit the spot.
  13. Yes, we did discuss that. I should have said that at home we will eat gluten-free, but not strictly enforce it when at friends and families or eating out. I am simply not going to have gluten in my house so therefore she won't get it there.
  14. Thanks for the advice! The doctors at Children's think that we should hold off on any endoscopy/biopsy until her symptoms either worsen or for 6 months when we will repeat the TTG IgA. They fear that if we do the procedure it will come back with a false negative. Although she is currently testing positive (27.6) it's not elevated enough to worry. So for now she will eat gluten-free when she is with me and her dad can do whatever he wants.
  15. Which article are you referring to?