14 year old daughter and undiagnosed GI pain

@astaingegerdm

That is an amazing story of a successful diagnosis and treatment. I am so glad that she had a psychiatrist who was able to look beyond the obvious symptoms and see what might be the cause. It is difficult to find medical professionals who are that insightful.

Have you kept a pain journal? Is the pain worse at certain times of the month (cyclic)? Do certain foods make it worse? etc
I also have a chronic pain disorder that started in my late teens and was not diagnosed for a very long time. My cycles were always very painful and very heavy and was told that since other family members had painful, heavy cycles that it was normal. So for 10+ years I thought they were normal, but as I grew older things got worse. At the same time foods started bothering me and we thought it was egg allergy (it wasn't). My dr. kept prescribing antibiotics but finally I realized they weren't working. Then I started keeping a pain diary and found out things were worse around my cycles. The 2nd dr. said it was perimenopause and that problems were normal, and did nothing. Finally the 3rd dr found out I had a large ovarian cyst consisting of endometriosis (misplaced uterine lining). It took 3 drs and 27 yrs for a diagnosis. As for the food problems, I went gluten free (no dr order) and then 2 years later wanted to be checked for celiac. I tested positive in 2 out of 3 areas, but was lacking the antibodies. Last year I wanted a more accurate diagnosis and with dr. permission went back on gluten. That lasted 3 days and started getting sick, so went back on gluten free. The change was immediate.
So have the GI dr test her for celiac disease-its blood work. Also the ob/gyn should check for endometriosis. Unfortunately it can only be found with laparoscopic surgery-unless she has cysts like I did. Mine was seen with an ultrasound.
Has she had ultrasounds of her abdomen/pelvic area?

Hi @airey2,

Once again, your post shows how important it is to persist in advocating for yourself when you have a health problem. I appreciate your sharing your health journey with @mkirby19 and the rest of us on Connect! It is hard to believe that it could take 27 years to reach a diagnosis. I certainly admire your persistence. Thanks again for sharing your story.

How are you feeling now, @airey2?

Well, part of the 27 yrs was my fault. For about 10-11 yrs I thought having heavy, painful cycles was normal because that's what I'd been told. It was in my early 30's that I realized that kind of pain was not normal. I also did not know what kind of dr. to go to. I went to my primary, thinking he'd tell me, but he didn't.
I can still have flare ups of the endometriosis, but the pain isn't anywhere close to what it used to be. The pain can now be controlled and I haven't had a flare up for 6 mths. I had a breakthrough late last year.

@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?

@mkmkirby19
There could be a possibility that your daughter has endometriosis. I have it & had it from a young age. It is very common in young girls with periods. Does she have a bad pain when she is on her period? Look up endometriosis & see if she has any of the symptoms. The only way for her to know for sure is through a Laparoscopy done by a Gyn. Best of luck.This is just a possibility bc when I was young the dr's didn't know why & I ended up with an exploratory surgery & that is when I found out that I had endo.

Update! Having mri done in my daughter today in abdomen. I think you would all be proud of how I kept pushing the doctor! Anyway, he still has no idea what is going on, says we should consider a psychiatrist next. Know idea what that is about, or sending her to a pain rehab center. Of course , my responses were to possibly do another HIDA scab for the gallbladder, I made him do one two years ago! Possibly removing her from the cymbalta, making her mood very down and isn’t removing the pain . Tried acupuncture,but no result there either . Thank you for your guidance! I will keep you posted.

I still think she may have endometriosis if she has pain during her periods. It is not something that can be diagnosed through a test. I wish you the best. I belong to the endo support group & dr's don't understand this so they refer you to a shrink.

Your daughter does not need a psychiatrist. He will only prescribe antidepressants that have the side effects of suicidal thoughts. And we don't want that! Doctors think that teens, especially young teens, are not able to get endometriosis. Yet I have several friends who have had it since their first cycle (about age 12 or so). In the beginning, Endometriosis forms implants anywhere in the body, but mainly in the abdomen and pelvic area. The implants start small and usually cannot be seen except through laparoscopic surgery. As it builds though it can form cysts. Endo. causes excruciating pain, especially if it is on/near nerves.
Has your daughter been tested for celiac disease? It is a blood test. Is your daughter seeing an ob/gyn at all? or just a GI doctor.

I have scar tissue that can not be removed that are plastered on other organs bowel & bladder & they can not be removed bc Mayo Clinic tried & it just made me worse. I started out with pain as soon as I started my period. I suggest you see a Gyn but then they have no knowledge of this disease. I advice you to go to EnodmetriosisTeam on line & read some of the stories & see if your daughter has any of the symptoms. I'm living proof of what endo can do & at a young age. I hope you find answers.