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Posts (129)

13 hours ago · SLEEP STUDY-SLEEP APNEA in Digestive Health

Hi and Welcome @barb2025 ,
I’ll share my experience with CPAP- it was great to finally get decent sleep! I got a machine recommended by the sleep center and was covered by my insurance. A durable medical equipment company supplied tubes, masks, filters etc. To my knowledge it is not recommended to clean the hoses in the dishwasher. It’s fairly easy to clean them- soaking in water, vinegar and dishwashing liquid and air dry. I used nasal CPAP with soft “pillows “ , suits the way I slept. My husband uses face mask, covering nose and mouth.
Do you see a specialist in sleep medicine and pulmonology? If you don’t mind I would like to hear from you when you are getting set up.
Are there other Connect members that can share experiences and information?

4 days ago · Lymphocytic Colitis in Digestive Health

Hi @minnewaukon ,
I was diagnosed with collagenous colitis, which is similar to lymphocytic colitis, 10 years ago. Symptoms disappeared after treatment, but I was told it might return. So far nothing. However, I developed another form of gastrointestinal autoimmune illness- also finally gone after treatment. Good luck with your treatment- would you mind getting back to us later about how you are doing?

4 days ago · Toddler has had fevers for over 3 weeks. No one knows why. in About Kids & Teens

@marriedto41 – I am glad that your son has a diagnosis- and one that can be treated. It must be a relief to see him improving.
Viruses certainly can cause more damage than what one assumes- especially summer viruses in my opinion.
Thank you for getting back to me! I was very concerned.

6 days ago · Celiac Disease (refractory type) in Digestive Health

I understand how the fatigue is overwhelming- I have had other autoimmune inflammation of my intestines. The fatigue is secondary to the inflammation. I agree with lighthouseceliac that you should have your thyroid checked- it is very common to have more than one autoimmune disease. My daughter has both as well as multiple food allergies, all appearing recently.
Hang in there!

6 days ago · 14 year old daughter and undiagnosed GI pain in Digestive Health

@mkirby19 – How is the evaluation going? I read that you were referred to neurologist. I’m curious why. I can think of one neurological condition that can cause abdominal pain with nausea and vomiting- abdominal migraines. Will you please share results of your referrals to specialists?

Sat, Sep 14 12:51pm · Toddler has had fevers for over 3 weeks. No one knows why. in About Kids & Teens

I’m just checking back with you- how is your son doing with his fevers now?
What other testing do your doctors recommend?
I hope all is well.

Wed, Sep 11 8:14pm · Undiagnosed and don’t know where to go next in Autoimmune Diseases

@beanie300 – me again! Wanted to check on you to see if you have more answers?
Reading about all your symptoms again makes me think many could be connected to autoimmune disease- maybe even more than one. The problem is that the right tests may be normal when tested. However, that does not mean that tests are always normal.
Have you ever been tested for celiac disease? Autoimmune disease of intestines in response to gluten. What’s interesting is that celiac disease could affect other parts of your body – as well as coexisting with other autoimmune illnesses of thyroid and joints etc. It has always been considered very rare in this country, but lately studies have shown it’s much more common than previously thought.
Could you maybe check back with your doctor (s) if you were tested? I think nowadays it’s part of immune testing.

Wed, Sep 11 7:37pm · Undiagnosed and don’t know where to go next in Autoimmune Diseases

My daughter is ready to leave, but she does not have the funds to move away from here to get a job paying enough to live on. Catch 22. We now live in the south where pay is ridiculously low.
We probably would worry about each other!