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StephanieL

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Latest Celiac Disease News & Research:

Everything posted by StephanieL

  1. StephanieL
    Sing it Mushroom
  2. StephanieL
    Here is the info I was speaking of: "One, you have to have symptoms we know are related to celiac disease
  3. StephanieL
    Many Docs will not DX with just the blood work. Dr. Fasano recently listed 5 criteria for dx Celiac. I believe he feels if you have 4 any 3 or 4 of the 5, you have Celiac. I can't find the article right now but I know a few of them are blood work biopsy genetics (I think, not 100% sure on that one) responding to the gluten-free diet Again,...
  4. StephanieL
    I did quiz them and they absolutely failed! I have been ranting all day about this "world class, A-1 healthcare facility using outdated information for the tens of thousands of patients they see even year. They build buildings year round but can't spare a few grand to update the Docs. (rant over ) I didn't see any sense to going to that Dr. if...
  5. StephanieL
    I know you mentioned that. I am saying that I know of dairy allergic people who have still reacted to them. I am not sure if it's x-con or what. I am aware of the dairy free but question the accuracy of that label.
  6. StephanieL
    Trader Joes has a gluten-free, DF one. We loved them till we lost palm oil/coconut. That was a sad day here!
  7. StephanieL
    Custom are pricy up front but with the small amount needed it works out to $10-15/month. People in the food allergy world have reported GI reactions to Culterelle in those with dairy issues. I have not tried it because of these reports as my kids are dairy allergic.
  8. StephanieL
    Thanks Gemini. So our GI said if I wanted to go to the Endo she would refer us to one but she didn't see the need. I said we don't' need a referral but yes, I am going to the endo. So before I scheduled with the Endo at the hospital our GI is at, I call. I ask what this WORLD FAMOUS hospital uses as normal for TSH. They did not give the correct...
  9. StephanieL
    I have heard of many reacting to culturelle. We are HUGE fans of Custom Probiotics. He is a dream to work with and can answer all your questions. Sent us about a month sample to see how well it worked and we were hooked after day 3!
  10. StephanieL
    Misery loves company lol He's 5. The TSH levels were taken about 3 weeks apart (6.4 and 4.17 so they "fell" a bit). His Free T3 was WNL though so... Our whole Celiac journey started with Endo. and it looks like we need to head back there too. What's your childs story with high tTG's? I am interested to hear! It's nice to know we aren't...
  11. StephanieL
    No, no TPO was ordered that I see. I am trying to decide if I need to peruse things with Endo or just call it a day till something else "breaks". I am so worn out.
  12. StephanieL
    ***NEWEST LABS*** So his TSH is still at 4.1. His Free T3 is 0.9 So under the "new" TSH levels, they are still high. Thank you to you all, I pointed out these new values to the nurse who is going to talk to the GI Dr. about this and see what they say. I think we will go to the Endo regardless of what the GI says. Would you agree with this?
  13. StephanieL
    Open Original Shared Link
  14. StephanieL
    Do you have children? I would assume with this attitude you don't (and I admit that's a total assumption). This line of thinking is a real slippery slope IMO. So if a kid had a sever allergy, should she/he not be allowed in public schools? They serve all kinds of food products there. I do have children with extensive lists of food allergies. I often...
  15. StephanieL
    Thanks. I am researching this and think this is a good place to start delving again...
  16. StephanieL
    Not very high (his was 6.32. Ref. range was 0.400-5.500 uU/mL) but a tad high.
  17. StephanieL
    So the Dr. ordered a pre albumen, Free T3 and iron tests. I assume they are looking for Hashimoto's given his THS from last week too. This is just so frustrating and I hate hate hate all of this for my sweet kiddo
  18. StephanieL
    Many Dr.s are willing to say yes if you a) have a genetic link to someone with celiac disease (parent or sib), test + on blood work and c) respond to the diet. I would ask your ped about this.
  19. StephanieL
    Thanks all. I do appreciate all the input! Really, it is helping us work through this. I got his labs in the mail today for this trip. Gliadin IgG Abs 5 (Low is <20) Gliadin IgA Abs 5 (Low is <20) Endomysial IgA Abs <1:10 (Low: DLT 10) So, there you have it
  20. StephanieL
    I have a call into our GI about the latest blood work. I did find some from when we did the biopsy and he was still on gluten. IgA-Endomysial 59 (low: 22 high:157) Gliadin IgG- 17 (<20) Gliadin IgA- 6 (<20) tTG IgA0 126 (<20) Reference ranges in ( ) So what do normal Gliadin before going gluten-free...
  21. StephanieL
    Thanks so much. I will ask about those tests. Do you have any research I can point out to my Dr. about these being what needs to bee looked at for diet compliance? As for resolving symptoms, he never had any to begin with. We were sent to and Endo because of a zero Vit. D level. She ran the Celiac test, sent us to the GI. We went to 2 different GI...
  22. StephanieL
    Because of his allergies and Celiac, he is a strict "Only food from home" at school. We pack his lunch and snack. He has a "treat bucket" there for surprise parties and things which is all gluten-free and allergy free. They don't do play-doh when he is there and there are 5 days off and through "weekend" cleaning before he's back at school (he goes M-T...
  23. StephanieL
    There are no oats in any of his foods. Most of his foods are from companies who make only one thing so I don' think that's it. Question: He sucks his fingers. Would it be possible he's picking up THAT much gluten from that to throw off the diet? Thiss is seriously driving me crazy. We are ready to drop $300 for test strips to test all his foods...
  24. StephanieL
    Thanks all for trying to help me crack this case. No pets, no shampoo, no play-doh at home or school. No oats. Are there people who just have a naturally higher tTG?
  25. StephanieL
    Thanks. I have been reading that same thing for 2 years now! lol There aren't any indications of any of the other conditions listed. Is it assumed that since there was an initial drop in tTG that is would be Celiac?
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