First Post - Looking for suggestions. My 9 yr old daughter has Celiacs, dx 5/11 with endoscope. 7/11 diagnosed with Hashimoto's disease. Since this summer we've been on a roller coaster. Weird urinary pain/frequency (UTI symptoms - but no UTI), sore - sore muscles, extremely tired, cold, foggy mind,weight gain, irritable, sad, and diarrhea. gluten-free for almost 6 months. Synthroid for 4 months and energy has improved slightly, but other symptoms still exist. The irritability, sore muscles, and foggy mind are the most worrisome. She was a very happy, active young lady and things have changed.
The endocrinologist says her thyroid numbers are fine - must be depression. The gastro says take probiotics - which helps with the diarrhea. He also says there is still trace amounts of gluten in her body.
?'s - 1.) We've been quite diligent with gluten-free diet. Does it take months for it to clear one's system?
2.) Are these common Celiac symptoms - urinary issues, sore muscles, irritability, brain fog.
3.) When should we expect improvement?
Thanks for your advice!
Only other medical diagnosis - low vitamin D, citrus allergy
I would echo what the other have said about checking your pantry for hidden gluten. I have gotten rid of all gluten baking stuff and bake exclusively gluten free now and everyone enjoys it. My husband (a gluten eater) is making a gluten-free pizza for us all as I type, two of us are gluten-free and two are not.
I would seriously consider doing that. Toaster and bread can leave crumbs everywhere even when you've wiped up so think about that and how you store and handle it if you are continuing to have gluten bread in the house. I stopped having gluten pasta as it sticks to everything and I can't be 100% sure it's gone, we all eat the gluten-free stuff now.
Have you replaced your sieves, cutting boards, colanders and wooden spoons?
Do you eat out or at other people's homes? I would consider stopping that for several months to see if that helps, cross contamination might be an issue even when there are gluten free menus.
You need to be 100% sure that there are no cross contamination issues so you can look at other causes. Does she still eat dairy? I might consider stopping that also if you haven't already done so.
I'd also echo the advice about getting the blood tests that have been suggested. And I think your endocrinologist is talking through a hole in their head, I think you need to rule out physical causes before you label a 9 year old as being depressed with no apparent cause.
I am about to embark on the GAPS diet, I am *hoping* it will help me as I also have ongoing GI issues/exhaustion despite being gluten and dairy free for over a year. I have no idea whether it will help your daughter (or me!) but if you run out of other ideas you could take a look at it. The book that you need it called "gut and psychology syndrome", the author is Natasha Campbell Mcbride.
Lastly, not related to any of that, but as your daughter has been biopsy diagnosed in the last year you can ask for the Care Package to be delivered to her from the University of Chicago Celiac Center. We received it last week for my son (he's 7) and he *loved* getting a surprise big box in the mail addressed to him! Here's the link: http://www.curecelia...c/care-packages
They had some helpful literature in there too.