Sudden onset water weight gain in 20 y.o.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I work in GI. I had one patient that had a rapid weight gain and was found to have celiac disease.

That said- guessing this is more related to sodium and calories.

We see a lot of patients with POTS. I’m not sure what type of Liquid IV she is using, whether it is sugar or not, but electrolytes are likely not necessary. She needs more volume in the tank and salt does that.

She should be checking her blood pressure.

She should be sitting upright all day, sleep on an incline and exercise every day.

She should see a cardiologist who treats POTS.

In the absence of other symptoms or abnormal labs, would work on those things…and have someone draw celiac labs.

Would be reasonable to look into MCAS at some point.

Thanks PP, and other PPS who posted last night. She had an appointment with new doctor today, and hopefully that will help expedite getting in with a good cardiologist sooner.

Just a PP here checking in and hoping for some answers for your daughter!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I work in GI. I had one patient that had a rapid weight gain and was found to have celiac disease.

That said- guessing this is more related to sodium and calories.

We see a lot of patients with POTS. I’m not sure what type of Liquid IV she is using, whether it is sugar or not, but electrolytes are likely not necessary. She needs more volume in the tank and salt does that.

She should be checking her blood pressure.

She should be sitting upright all day, sleep on an incline and exercise every day.

She should see a cardiologist who treats POTS.

In the absence of other symptoms or abnormal labs, would work on those things…and have someone draw celiac labs.

Would be reasonable to look into MCAS at some point.

Thanks PP, and other PPS who posted last night. She had an appointment with new doctor today, and hopefully that will help expedite getting in with a good cardiologist sooner.

Just a PP here checking in and hoping for some answers for your daughter!

Same. Thinking about you both.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Would have her elevated her legs during the day. For POTS, heart needs to be above kidneys for the hours of sleep. You can put books or bricks underneath the feet if the headboard to achieve this. Wedge is not adequate. Have her wear compression socks during the day.

Thank you! Also you have a good point about
allergies / MCAS. She was tested by GI for celiac a few years ago and was negative. Not sure if that can change over time. But she frequently gets sick with congestion, fatigue, UTIs, EBV (3x), and she even got the flu last fall despite getting a flu shot. Tested for long COVID in 2022 - negative. Allergies are tree nut, pet dander and seasonal, but not especially severe. Just chronic. She treats with stuff like Flonase and DayQuil. Has an epi pen, never had to use it. No allergist has found her situation remarkable. It’s apparent she needs to revisit testing. Who is equipped to test for MCAS?

There is no test for long COVID. Celiac can develop over time; if the test she had was a blood test, the results are dependent on the patient having recently consumed gluten. The gold-standard test for celiac is biopsy taken via endoscope.

A 20-lb weight gain in a month should not be sloughed off. What did the new PCP say?

[Anonymous]

MCAS is usually diagnosed by an allergist/immunologist

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Would have her elevated her legs during the day. For POTS, heart needs to be above kidneys for the hours of sleep. You can put books or bricks underneath the feet if the headboard to achieve this. Wedge is not adequate. Have her wear compression socks during the day.

Thank you! Also you have a good point about
allergies / MCAS. She was tested by GI for celiac a few years ago and was negative. Not sure if that can change over time. But she frequently gets sick with congestion, fatigue, UTIs, EBV (3x), and she even got the flu last fall despite getting a flu shot. Tested for long COVID in 2022 - negative. Allergies are tree nut, pet dander and seasonal, but not especially severe. Just chronic. She treats with stuff like Flonase and DayQuil. Has an epi pen, never had to use it. No allergist has found her situation remarkable. It’s apparent she needs to revisit testing. Who is equipped to test for MCAS?

I would have her immuglobulins (iga, IGM, igg) checked. If you are IGA deficient you get frequent infections like the ones you mentioned and you will test negative for celiac even if you have it because the celiac blood test checks for your IGA and other IG responses to celiac products.

I’m not sure I understand the suggestion above. Her IGG and IGA were normal in 2022, in the context of testing for celiac. Are you saying to test again not in relation to celiac?

If they were fine a few yrs ago, then you don’t have the concern I was mentioning. IGA deficient people are born that way, and are prone to frequent infections. That’s all.

[Anonymous]

This is OP. DD said new doctor said celiac or immune dysfunction not likely bc DD has not had GI or other serious symptoms, like contracting pneumonia, that would point to that.

She ordered a lot of tests (I haven’t seen the list yet, will post here when I do). MCAS is something she’s looking into. Not too concerned about edema bc heart and lungs sound fine. Doctor said to increase salt even more and stay on the light diuretic. It might take a good 2-4 weeks for this light diuretic to make a difference. This could just be a bad POTS flare.

She emphasized the need to follow the CHOP protocol to regain physical stamina and reduce likelihood of dizziness while standing/ exerting. Elevate head of bed, like prior PP said. Gave a letter for work accommodation (consideration for time off for medical appointments) while DD is building back up her strength.

[Anonymous]

Dr. Abdallah (either one) at Johns Hopkins pediatric cardiology in Herndon - POTS specialists but figured out my daughter's hard to diagnose autoimmune issues.

[Anonymous]

And Karen Kaufman in Vienna for MCAS.

[Anonymous]

This - and Ben from Ben & Jerry’s also silenced.

[Anonymous]

Pregnant

[Anonymous]

Thanks for the recommendations! Sorry to hear about Ben, and not pregnant. That’s the first test doctors do for females this age.