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Sesara

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Sesara

  1. Sesara
  2. Sesara
    Get a copy of the bloodwork they did. If your son is "low" on IgA, he could theoretically be IgA deficient. If that is the case, normal IgA tests won't work for him, but people who are IgA deficient have a 10 to 15 times higher risk of Celiac than the average population. Also, you need to find out how complete of a panel they actually ran on him - they may...
  3. Sesara
    Just to disclaim at he beginning, my 22 month old DS has not received an "official" diagnosis of Celiac's yet, though I hope to get there. That said, a lot of what you describe resonates deeply with me. He only just STTN for the first time since we went gluten-free and has always been crabby when waking. He also has been falling off his growth chart...
  4. Sesara
    I've also read that while >40 has been the standard for Marsh scale of 1, it's been repeatedly suggested by some researchers that it be lowered to >20-25 for Celiac diagnosis unless other factors are present. And I've looked into the other potential reasons for elevated lymphocytes and almost none could apply to him - H. pylori is the number 1 other...
  5. Sesara
    That actually sounds like an excellent amount of sleep for an 8 year old. People aren't aware of it in our society often, but most kids are actually chronically sleep deprived, which itself can give kids symptoms of ADHD when they don't actually have it. Here's a handy guide: Open Original Shared Link So you should pat yourself on the back for meeting...
  6. Sesara
    I'm confused. How was your son diagnosed with a wheat allergy? Is it a true allergy, or is it Celiac's, which is an autoimmune disease, or wheat intolerance? If your son has Celiac's, your husband needs to understand that 100% adherence to a gluten free diet is necessary, and that he can't "forget" because even if you can't see the damage, that doesn't mean...
  7. Sesara
    It seems like a lot of peds are reluctant/unwilling to run the bloodwork, because then they have to refer you to a specialist anyways if it comes back positive. I don't really understand the logic and I find it very frustrating. My son had the classic symptoms of Celiac, but my pediatrician refused to run the Celiac panel, instead testing him for parasites...
  8. Sesara
    I was just informed by other moms who have dealt with this doctor on a local Celiac group that my pediatric GI is often reluctant to diagnose because of "how difficult it is to adhere to the diet". He said basically the same thing to me. Ugh. Yes, let's just keep poisoning my child because it might be harder for me to NOT poison him. I don't honestly know...
  9. Sesara
    Ok, I'm almost positive, having actually read a description of it, that I have dermatitis herpeteformis. I don't know why I didn't remember this sooner, but back in college, I broke out in a horrible rash that was itchy and oozy and they told me I had scabies, but the treatment didn't work and they re-treated with something stronger, and took skin for allergy...
  10. Sesara
    One thing that I have come across in the course of my reading is that Celiacs are far more likely to develop allergies to other foods, because their immune systems are on "high alert" already from exposure to gluten, which it views as an invading pathogen. Additionally, and less scientifically proven, but with some evidence to back it up, is the idea of ...
  11. Sesara
    I know that I posted on my other thread about this, but I was hoping maybe some people had more in depth suggestions about what they would be doing next in my situation. So - initial incomplete Celiac panel was negative. Bloodwork showed some evidence of upper GI bleeding, malnutrition, inflammatory response, and borderline anemia, but was mostly...
  12. Sesara
    Also looking at his measurements that they took today...he is now in the 2nd percentile, where he was in the 8th at his 18 month appointment, and has further fallen from the 50th to the 30th for height. And then the GI wonders why I don't want to do another month of gluten. I just want to cry and bang my head against a wall.
  13. Sesara
    Argh. Back in frustration land. Got his upper GI results today...so, his esophagus showed some chronic inflammation, indicating acid reflux, though he's never clearly demonstrated such symptoms. Stomach looked fine. Small intestine...well, basically, they couldn't see clear villous atrophy. However, he did have intraepithelial lymphocytosis, with lymphocytes...
  14. Sesara
    I think he is in gluten withdrawal. Starting the day after we went gluten-free, and getting worse every day since, he has just been having epic temper tantrums and falling apart over every little thing. Hitting. I suppose I could blame it on his approaching terrible 2's (he'll be 22 months on the 8th) or the trauma of the endoscopy, but his behavior has just...
  15. Sesara
    Lol, tmi, but we have been gluten free for 2.5 days, and reasonably careful about fructose and lactose, and last night, he actually fell asleep without being carried or nursed, and today he had his first normal looking BM in almost 6 months! I am feeling very encouraged.
  16. Sesara
    My DS, who we will be getting biopsy results back on Tuesday, has been a "high needs" or "fussy" baby from birth. He also has a diagnosis of SPD from EI and gets occupational therapy 2x per month. His speech has also been slow to develop, even though DH and I were both extremely early talkers and he has excellent receptive speech abilities, he just can't...
  17. Sesara
    We are just getting started in our gluten-free journey. Today was our first official day of gluten-free and I can't guarantee no cross-contamination, since I'm not completely done decontaminating my kitchen, though I did burn off all my cast iron seasoning today. But I have read other people talking about withdrawal symptoms, there are probably a number...
  18. Sesara
    Have you considered genetic testing? I know Promethius labs does it, it can be hard to get it covered by insurance though, but they have a home testing kit. If you really want, you could have at least one of your children with suspicious symptoms tested, and if they screen positive for one of the associated genes, you will probably have a decent chance of...
  19. Sesara
    I can't help but be wary about a daycare that is not gluten-free, no matter how careful they claim to be. If there are other kids eating non-gluten-free foods, there is always the risk of contamination, and a few crumbs on the floor are all it takes for a kiddo the age of yours. Just something to consider.
  20. Sesara
    I know from reading this forum that lots of kids have negative bloodwork and still end up with positive biopsies. You could consider running a genetic screen as your next step if you are still torn. If his test comes back with the genes associated with Celiac, with his list of symptoms, the next logical step would be endoscopy, even with the negative bloodwork...
  21. Sesara
    Oh yes, forgot to mention - of course his gut looked "normal" upon visual examination. Luckily, I know that in a child his age, that doesn't mean anything. We have a week until our biopsy results will be available. I started to de-gluten my kitchen today. Once again, I'm back in mourning. Every time I think I'm past the worst of it, something new happens...
  22. Sesara
    I wonder if there are issues at school that are making him not want to go. I developed a chronic habit of illness during my 7th grade year by faking sick a lot. When my parents realized there was a pattern, they called me on it, but they also gave a lot of understanding. I was getting bullied at school a lot by other girls, and looking back, I know that was...
  23. Sesara
    They also did biopsies from his esophagus and stomach. EE and EG were other things that, while less likely, they were going to look at. He has never had bloody diarrhea or been a puker or even much of a spitter when he was itty, so I am hopeful that we will not have any issues discovered apart from the Celiac diganosis, which I fully expect based on all his...
  24. Sesara
    We are in the waiting area now. I'm not particularly happy with the hospital, who refuses to let me go back with my son until he is sedated. My last memory of his face is that he was about to burst into tears. However, I do feel a good deal better having talked to the GI, who was already planning on taking 6 samples, including at least one from the duodenal...
  25. Sesara
    Well, it's the night before our endoscopy. I have articles printed out and portions highlighted about the importance of taking multiple biopsies, including the duodenal bulb, to diagnose due to the patchy nature of the disease, especially in children. Also highlighted are the portions that indicate that the main GI and pediatric GI professional organizations...
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