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Mom-of-Two

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Everything posted by Mom-of-Two

  1. Mom-of-Two
    I will tell you this~ I learned I had celiac a few years ago and had my two children tested. The first pediatric GI tested them both for tTG only. My daughter was very high (80 I think), I was crushed when I got the phone call. They said they would be doing an endoscopy, to "confirm". I hated every moment of the process because she had never had ANY surgery...
  2. Mom-of-Two
    Animal Parade GOLD- is awesome. Also use Carlson's D drops, 1000 units, my daughter was deficient in D when diagnosed, her levels more than doubled in 6 months. I also give probiotics daily.
  3. Mom-of-Two
    Exactly!! I'm struggling with purposely feeding him crap to test him Ok, I think I'll let him eat a bit more on a more regular basis, over next week or two, and go ahead with testing again- if this impaction issue continues, or he continues with tummy pain after getting negative labs, we may then consider eliminating gluten all together and see how he...
  4. Mom-of-Two
    I don't know, my GI tested everything thyroid including Hashi's, every test for everything has been normal but I haven't lost an ounce since being diagnosed 18 months ago and being strictly gluten-free. I heard so much about the amount of weight I would lose, I was praying it was the one positive in the whole crappy diagnosis! Just letting you know...
  5. Mom-of-Two
    So all.....his X-ray a week ago showed impacted stool, basically a colon full of stuck poop she had us do Miralax for 3 days, and then has us on a maintenance dose right now until we get him going more regularly. He's gone a total of 5 times since starting the Miralax, and seems to feel a lot of relief. She agreed that we should do a few more celiac labs...
  6. Mom-of-Two
    I never thought I would be going out to buy gluteney foods and load my kid up on them LOL :-) he's gonna have fun with this experiment! I was thinking a month also, especially since he will be eating daily snacks at kindergarten as well. I really wish I could've figured this out prior to school starting! If gluten does end up being his problem, I sure hate...
  7. Mom-of-Two
    I can't speak to this exactly, we are on this journey with our younger kiddo, BUT I can tell you that my daughter had blood work while eating gluten, and was re- tested by a different GI after 2 weeks of gluten free at HOME. Her antibodies had already gone down by half. So, I do think in children, they do heal and reverse quite quickly!
  8. Mom-of-Two
    Well, X-ray yesterday revealed he has a bad impaction- basically colon full of poop, up to his rib cage She has us doing Miralax 3x a day for the next 3 days, then a daily maintenance dose for awhile until we get results of some testing. She has labs for iron, couple other things, and the other missing components of the celiac panel - he tested normal...
  9. Mom-of-Two
    Well, we are seeing his pediatrician tomorrow, but GI can't see him until Oct 7. Tomorrow his pediatrician is suggesting a tummy X-ray because she suspects he has impaction, he is also being iron tested because he won't eat meat, and doesn't eat a lot of iron rich foods. I am now totally convinced he needs to be off gluten because he has joint pain in his...
  10. Mom-of-Two
    Many people do NOT have ANY nutritional deficiencies at time of diagnosis--- this is a GOOD thing. Changing your diet now, you should have an easier time keeping your nutrient levels adequate, and getting that villi damage healed. I was told I was likely celiac my whole life, and had no malabsorption of nutrients, never been thin, and didn't have "classic...
  11. Mom-of-Two
    We have no problem making him fully gluten-free (he eats none at home anyway), we just want to make sure he doesn't have actual celiac- so we know if we have the same contamination concerns. I'm going to follow up, if this continues with the constipation/tummy aches I may wait a few months, since he will be eating gluten snacks in Kindergarten starting...
  12. Mom-of-Two
    I SO understand how you feel. Even after my daughter tested + on tTG and EMA tests, because her biopsy was normal, they still said we had two options: 1) gluten free diet and retest in 6 months or 2) continue eating as normal and retest in 6 months or sooner if symptoms arise. Given that I myself have celiac too, and her body is clearly having an autoimmune...
  13. Mom-of-Two
    Myself and my 9 year old both have celiac. My 5 year old has tested normal with tTG test twice, and has a normal EMA screen several months ago. NOT a full panel. He continues with constipation and frequent tummy aches, but the pediatric GI we see feels this is just more diet and behavioral. (Holding it) Should I push for more tests- the DGP tests on him...
  14. Mom-of-Two
    You need a new dr!
  15. Mom-of-Two
    Half asleep--- EXACTLY!!! those are my words exactly, I could deal with it myself, but having it be your kid is so different, isn't it!??? If you would like to message me or email me personally, or just post here, I am happy to help you with school lunches! My daughter had just become gluten free prior to start of school last year, so I can help you with...
  16. Mom-of-Two
    First check 6 months after, since those were normal, both myself and my 8 year old only have to go yearly. Forever, according to my GI! She also checks my iron still, as I'm having trouble getting that up. My 8 year old had normal vitamin levels after diet change, so her pediatrician doesn't need to monitor her nutrients regularly.
  17. Mom-of-Two
    Same here- my kids were tested after I got my diagnosis, my 8 yo tested + with no stomach symptoms whatsoever, normal size and growth, she did have joint pain that came and went (her only "symptom"). She got a + tTG (it was 78) and pediatric GI suggested biopsy- we did so, but she actually had a totally normal scope and biopsy samples- that GI said retest...
  18. Mom-of-Two
    My daughter DID have positive EMA, but normal biopsy! Go figure
  19. Mom-of-Two
    Hi everyone! I was diagnosed 18 months ago, a few months later my kids were tested- youngest had normal tests but oldest had + tTG and endomysial antibody, low vitamin D. Went on to have normal biopsy, however she has reversed all tests and any symptoms (joint pain) on gluten-free diet for past 10-12 months. We re-ran testing on my 5yr old because...
  20. Mom-of-Two
    Welcome to the club I first suggest you have your kiddos screened. Sometimes at such a young age it can be hard to get accurate test results but I would be willing to bet, out of 3 kids, someone may be positive even without symptoms. I was surprised when it was suggested my kids get screened, and even more surpriesed when one of them was positive. It...
  21. Mom-of-Two
    Commenting on the above: when EMA positive, that tells you there is significant intestinal damage- my 8yo was EMA positive, positive TTG, and very low vitamin D at time of testing- but her biopsy was and I quote "beautiful" according to our first ped GI who then informed me to keep feeding her gluten- saw a second opinion who said that is crap, this child...
  22. Mom-of-Two
    I found out I have celiac a year ago, and because of genetics we had both kids tested. The GI ran TTG only as a screening, my youngest came back normal but my 8 yo had elevated TTG at about 80- strong positive. He advised a biopsy, which took me some time to decide on because I had sort of made up my mind that if either were positive on labs, we'd just make...
  23. Mom-of-Two
    My husband has a coworker whose brother has celiac- was diagnosed about a yer ago and felt great after starting the diet, but symptoms like you describe began creeping back- his GI diagnosed him with bacterial overgrowth. He is 110% after a few months of treatment. Life changing for him.
  24. Mom-of-Two
    I was diagnosed at 33, I believe mine was triggered by an open abdominal surgery in which I spent 8 days hosipitalized with sepsis after a burst appendix. I've also had 2 pregnancies, I feel that all contributed. I would see a GI and get further testing, no question!
  25. Mom-of-Two
    Yes, I am prepared for that- the testing process is a pain my 8 year old tested + on her labs (including EMA) but not a speck of damage found on biopsy (with proper 7-8 samples done), not even increased cells. Because she had some vitamin losses and her symptoms resolved (joint pain), her GI doc says he is 100% certaun the damage was THERE, just a patch...
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