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can anyone relate to my daughter's symptoms of nausea and weight loss

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delta30
Regular Member
Joined : Jul 2013
Posts : 236
Posted 7/11/2022 4:10 AM (GMT -8)
Hello everybody, I haven't visited in a while but now need help with diagnosing my 18 year old daughter. So I have 18 year old girl with nausea after every meal, feeling full and dizzy after a few bites and a lot of air burping but no pain, BMs normal.
Nausea started a year ago after pretty stressful exams, she lost 7kg (15ibs) and now is only 43kg (94.8ibs) while 164cm (5.38ft) tall. we did upper endoscopy, full body ct scan, blood works including cortisol level, thyroid, all other hormone tests. all come back clear with slightly elevated iron and bilirubin, vit B and D good also.
So far we've been to 2 gastros and endocrinologist - none of them know what to do.
She keeps loosing weight despite on eating double the amount she use to eat (a year ago she was eating next to nothing and doing martial arts 3 times a weeks). Any ideas on what to do, where to go, what doctors to approach and which tests to do next? I desperately want to help her but so far nothing works (enzymes, smaller meals, anti nausea meds). Thank you
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Seeker275
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Joined : Feb 2021
Posts : 167
Posted 7/11/2022 5:02 AM (GMT -8)
Maybe do a fecal Calprotectin to see if there is any inflammation in the colon causing it?
Nausea and weightloss are often symptoms of active inflammation and IBD? Are her stools normal? Also I am assuming her thyroid levels are fine too since you have been to an endocrinologist?
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delta30
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Joined : Jul 2013
Posts : 236
Posted 7/11/2022 6:00 AM (GMT -8)
Hi Seeker275, thank you for reply. He stool is normal, as for Calprotectin I do not trust is too much as I have UC for 10 years, most of the time it was pretty active but Calprotectin was normal every time. but we are going to do stool test for malabsorption soon
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straydog
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Posted 7/11/2022 8:20 AM (GMT -8)
Some of the symptoms you've written here reminds me of my neighbor's daughter at the same age. After nearly a year of every test possible, she was tested for celiac disease & was positive for it. I don't know if your daughter has been tested or not, perhaps something to consider.
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ks1905
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Posted 7/11/2022 8:27 AM (GMT -8)
Has she been tested for SIBO or Celiac’s? SIBO (Small Intestine Bacterial Overgrowth) is an easy breath test.
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damo123
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Posted 7/11/2022 10:29 AM (GMT -8)
Can I ask how much exercise / training she is doing? When you say her iron is high are you meaning serum iron, i.e. the amount of iron she has in her blood or ferritin levels, i.e. the amount of iron she has stored in her body. Both are very different.
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delta30
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Posts : 236
Posted 7/11/2022 4:03 PM (GMT -8)
She was not tested for celiac but i thought that you are sick when gluten present in the food, she is sick after any food. I will ask for SIBO test not sure if the doctors willing to do it. how to do you treat SIBO?
Domo123 her serum iron and saturation a little high, ferritin is normal. She stopped doing any exercises almost a year ago as she feels weak, tired and BP falling from 100 to 70 when standing which results in head spins and almost fainting
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beave
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Posted 7/11/2022 10:44 PM (GMT -8)
Celiac is worth ruling out - it's a simple blood test. It's sometimes caught with an upper endoscopy, but sometimes missed on that test too if they're not really looking for it. And it causes long-term damage to the villi, something that doesn't just cause symptoms when gluten is eaten. It takes weeks or months of complete gluten free to heal. But don't go gluten free without first getting the blood test.

Has she had her gall bladder checked?

Did the bloodwork include CRP and ESR? Both normal?

For the CT Scan(s), were any with contrast (oral and or IV)?
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damo123
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Posted 7/12/2022 3:07 AM (GMT -8)
Unlikely to be heredity hemochromotosis (HH) with normal ferritin. Does HH run in either of your families. Might be no harm to get the genetic test done for this though.

There are other form of iron overload apart from HH. Is the high serum iron a regular bloodwork occurrence, If so her system has mal-adapted to taking too much iron from her food....but the good news is that it does not seem to store it in her organs hence the normal ferritin. Have you tried a diet low on iron...removing vit C, leafy greens, red meat just to see if there is a positive reaction.

Does your daughter have joint issues?
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delta30
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Joined : Jul 2013
Posts : 236
Posted 7/12/2022 3:47 AM (GMT -8)
Beave, I thought that you can see celiac during endoscopy, she had upper endoscopy and GI said all was clear with clear biopsy results. But the blood test will not hurt. CRP and ESR are normal, Ct was with the IV contrast - all normal, I guess that rules out gall bladder (also did abdominal and pelvic ultrasound - nothing). did we miss anything?
Damo123, her iron was 33 with normal range 10.0-30.0 and saturation was 56% with normal range of 15-45%, this was registered on 2 blood tests 7 months apart, endo said it's nothing, the elevation is very little, she did try low iron diet for a month with no improvement. She doesn't have joint pain but has bendy joints, lots of cracking as well.
from what she describing it sounds like motility problem: crazy air burping, food not going down and building up in the esophagus, nausea and very strong gag reflex. but she is very reluctant to do gastric emptying study - she cannot even look at eggs.
but still even with nausea she is eating around 1800 - 2000cal a day and loosing weight without any BM issues. just cannot figure it out
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ks1905
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Posted 7/12/2022 6:09 AM (GMT -8)

delta30 said...

from what she describing it sounds like motility problem: crazy air burping, food not going down and building up in the esophagus, nausea and very strong gag reflex. but she is very reluctant to do gastric emptying study - she cannot even look at eggs.
but still even with nausea she is eating around 1800 - 2000cal a day and loosing weight without any BM issues. just cannot figure it out

From Dr. Google

Signs and symptoms of SIBO often include:

Loss of appetite.
Abdominal pain.
Nausea.
Bloating.
An uncomfortable feeling of fullness after eating.
Diarrhea.
Unintentional weight loss.
Malnutrition.
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damo123
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Posted 7/12/2022 8:16 AM (GMT -8)
Delta....has she been checked for hypermobility issues.....in particular you should check if she is anywhere on the elhrs danos scale.....hypermobility can extend to blood vessels and anxiety as much as bending and cracking of joints
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straydog
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Joined : Feb 2003
Posts : 19559
Posted 7/12/2022 8:45 AM (GMT -8)
Delta, I mentioned my neighbor's daughter to you above. She had upper & lower scopes that were normal. The blood draw for celiac looks for specific antibodies, upper endoscopy is not the best test. As other mentioned have her checked for SIBO. I hope you can get some real help.
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delta30
Regular Member
Joined : Jul 2013
Posts : 236
Posted 7/13/2022 4:21 AM (GMT -8)
Damo, the endocrinologist looked into hypermobility and didn't find anything alarming. but there are still a few tests we can do which brings me hope. Thank you guys for the suggestions, I'll keep you updated if we find anything
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Andreita
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Posted 7/13/2022 12:29 PM (GMT -8)
I have no advice but when I was around that age, I was also very skinny (43 kg at 165 cm height) and even though colitis hasn't treated me well, with time things got better. I'm at 55 kg right now, my best weight was around 5 years ago at 65 kg. I have a fast metabolism along with colitis so you can imagine, gaining weight is a problem. I'm 37 now.
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delta30
Regular Member
Joined : Jul 2013
Posts : 236
Posted 7/16/2022 12:22 AM (GMT -8)
Thanks Andreita, I am slim with fast metabolism too (55kg/165cm) but I feel that 43kg is like she is about to perish any second, I know it's my mother bear talking but still need to find out what's wrong and help her while I can
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momto2boys
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Joined : Jun 2013
Posts : 2617
Posted 7/16/2022 6:28 AM (GMT -8)
Has she been tested for food allergies or intolerances? That sounds just like my neighbor’s daughter who was diagnosed with celiac and a dairy intolerance. She is only 16 but right before COVID lockdown she was diagnosed and everything she ate made her feel nauseated. It took a while for her to feel better even after cutting gluten and dairy, but she is quite healthy now.
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