General Chat Unrelated to Celiac Disease - Discuss most things here EXCEPT Celiac Disease / Gluten-Free Diet. Keep it light and avoid controversial topics like global warming, gay marriage, gun control, euthanasia, speed limits on the Autobahn, prisoner torture, etc.
Still feeling the same way this past week. I'm thinking of dropping dairy starting from today, I don't know if I have a problem with it or not, but I drink 2 coffees a day with milk. I'm just constantly tired all the time, and getting trough the day is pretty hard, I noticed a couple of weeks ago that my sleep was improving but the last couple of days I have been waking up at least 3 times during the night, then when I get up in the morning it feels like I have been hit by a bus, like I haven't slept at all. I keep waking up during the night needing to drink water as I feel dehydrated, I don't know why as I drink 2-3 litres of water everyday
About 30% of people have a gene for Celiac. They don't all have it because only about 1% of the population has Celiac.
It is quite possible she has something else that is causing her trouble. Sometimes eliminating gluten helps that problem, like FODMAPS.
If it were me, I would keep her strictly gluten-free for a year or so. See if anything develops. Then I would try her back on small doses of gluten. If it is something like FODMAPS, she may be able to tolerate some gluten after a while. I would do that for 3 months . If she is having issues I would then get her tested with a full Celiac panel and, if positive, an endoscopy. Even if the panel is negative, if she is having issues, I would pursue more testing, ends, colonoscopy, etc.
For schools to take a gluten-free or any special diet seriously, you will need a doctors note. I am assuming US might be different in other countries.
Hi- new here but have been reading a lot of posts
(Long post, last two paragraphs have actual question)
my four year old daughter probably has celiac but I don't know if I'll ever get a definitive diagnosis at this point.
Backstory: growth Delays, GI issues and a few other symptoms as a baby/young toddler. Did not have blood work done but went straight to biopsy which was negative. Always still had suspicions that gluten bothered her.
Started developing more symptoms around 3, by 3.5 they were pretty bad and her dr recommend eliminating gluten. (Blood in stool, rashes, low grade fever, joint pain, stomach pain and bloating, behavior issues) Everything cleared up quickly! Yay. Still had occasional gluten because I was under the impression it was "just an intolerance" and her symptoms kept up/got worse with each exposure. (Developed vomitting as most recent symptom) So I wanted to know if it was celiac. Can't do blood or biopsy since she's been mostly off gluten for months by this time.
I really was hoping to have a concrete answer and diagnosis, So we did genetic testing recently. It came back positive for half of DQ2 (beta subunit). Her dr isn't giving her official diagnosis but says "she is at a fairly low risk" but with her symptoms doesn't that mean she has developed it??!
Either way he says to keep her off gluten but I don't understand why he won't diagnose? Right now I am just telling people (besides family) that she has it because it's too hard to explain it all but do you think an actual diagnosis would be beneficial in any way? Should I push the issue with her dr?
Thanks for the advice and encouragement, Gemini. I appreciate having additional insight into my situation. Celiac being the cause of my health issues makes more and more sense the more I learn about it, and eliminating gluten sounds more and more like the right choice for me.
The topic of this forum is "Celiac Disease - Publications & Publicity," so certainly it fits in here, and in fact, this topic is designed specifically to handle any media coverage that relates to celiac disease and/or the gluten-free diet.
Hello cycling lady, have you noticed my picture is showing up as you? Have no idea why but it's rather disconcerting to see my picture and your words 😉 Do you know how to fix it? You seem to have far more experience with this board than I do