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Strange stmptoms

Nredekop

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Nredekop Newbie
Nredekop
Posted

My 9 year old daughter has had gluten intolerance for the past few years, but we have only figured it out recently. Starting in grade 1, she developed hives which were never diagnosed. Also since that time she has always spent large amounts of time on the toilet wth tummy aches and  vomiti g, dark circles under the eyes. Also not diagnosed. The symptoms started to change(?) and increase this year. Tingly toes and fingers, slow in growth, excruciating tummy aches, affecting her life, very tired after eating, headaches. So we removed gluten from her diet. And she gained weight and everything h started t look up. But now we have noticed she is sensitive to the smell of wheat ( in the bakery etc) and it makes her sick. She also has a sensitivity to anything modified. Excruciating pain. Some foods sat gluten free but still have modified ingredients. We have appt with her pediatrician and to have a biopsy. But does this sound like celiac? Thanks! 

 

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Darren Apprentice
Darren
Posted

So sorry to hear about this. How tough for a little one to have to go through this as well as you.  The good thing is that you are doing the right thing having by a biopsy done, but you also need the celiac blood panel done as both together are required for diagnosis. It could be several different causes but what you are describing may very well be celiac as it has many many symptoms. Make sure she isn't gluten free leading up to the biopsy, and at least have hope that once diagnosed a strict gluten-free diet will "cure" it. Best of luck and I hope your daughter gets better fast. Once you go strictly gluten free things improve fast so better days are ahead!

cyclinglady Grand Master
cyclinglady
Posted

Welcome to the forum.  Unfortunately in order to get a diagnosis, you have to be consuming gluten daily and depending on the tests, it can be 8 to 12 weeks (blood test) or 2 to 4 weeks (for endoscopy/biopsies).  For DH (celiac rash), it must be active and the dermatologist must be very celiac savvy.  Here's more information about testing:

Open Original Shared Link

Does it sound like celiac disease?  Who knows?  There are over 200 or more symptoms related to celiac disease.  Please continue to research and advocate for your daughter!

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    • Matthias
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    • trents
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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