Am I Being A Hypochondriac?

[Mimako310]

I have had digestive issues as long as I can remember.  When I was 13, I had my first seizure that came while dealing with debilitating abdominal pain.  Multiple blood tests and CAT scans could not pinpoint a cause for the seizure, so I was sent on my way.  I continued to have boughts of severe abdominal pain (far worse than childbirth) usually accompanied by diarrhea.  A few required trips to the ER, where I was told it was "acute colitis" cause by stress, or a virus, or something else that got me sent home quickly without any real testing.  The pain was so bad I would get goosebumps over my entire body and be crying out loud in the bathroom.

 

At 20, I had one of these incidents but instead of diarrhea, I had pure, red blood coming out when I went to the bathroom.  I went to see a GI and was scheduled for a colonoscopy.  By the time the test came, the "flare" was over and the colonoscopy showed nothing, so I was again given the "acute colitis" brush-off and sent on my way.  At 24, I had another series of seizures following horrific abdominal pain, and this time I was admitted to the hospital.  They kept me for 5 days for every kind of neurological test you can think of, and found nothing.  Never once did they even mention any kind of GI testing.

 

About 5-6 months ago, my younger brother (13) was diagnosed wiith Celiacs after over a year of seeing specialist after specialist because his only symptom was a skin rash.  They went back and forth between fungal infection and psoriasis multiple times before finally testing for Celiacs.  Less than a month later, my older sister (32) was diagnosed with Lupus (not sure if other auto-immune diseases in the family history have any impact on ones chance of having Celiacs).
 

I'm now 30 years old and have 2 children.  For years I just assumed I had IBS, but looking back, I have dealt with migraines since I was 10 or 11, had very painful periods that were always regular, but since having my son 3 years ago have been all over the place, and I'm on Celexa and occasional Xanax for depression and anxiety, which again I have dealt with since my teen years.  Only recently have my headaches/migraines become a daily occurance and the fatigue I'm experiencing is overwhelming...I get 8 hours of sleep and still find it difficult to stay awake while driving my stepson to camp.

 

I just left a message to make an appointment with my doctor.  When my brother and sister were diagnosed, I asked for bloodwork for both, but I think she just did general antibody tests for any autoimmune (since it was 2 different diseases).  I'm not sure because I never saw the actual test results, but I was told everything was negative (I was also tested for Lyme's and had my thyroid levels checked because of the fatigue and hair loss I was experiencing).  I was told that my B12 levels were low and that could cause some of my symptoms, but I've been taking a supplement for months with no improvement.  I don't know if I'm being a hypochondriac and I've convinced myself of this after my siblings' diagnoses, but I seem to have a lot of the common symptoms.  Any feedcack?

[bartfull]

You are NOT a hypochondriac!!!

 

Auto-immune diseases DO tend to run together, and celiac disease definitely runs in families. That is why anyone who tests positive should tell all first degree relatives to get tested.

 

Your symptoms sound celiac. Your family history indicates celiac. If you want to get tested, you need to keep eating gluten until testing is completed. There are a bunch of different tests that someone will be along to tell you about shortly.

 

In the meantime, read the "Newbie 101" thread here and then read as much as you can in other threads. Ask questions.

 

And know that it is NOT all in your head, that you are not alone, and that even if you run upon a clueless doctor who botches the tests (many of them do), you can always go gluten-free without a positive diagnosis. It will take a while, but if gluten is your problem (and I believe it is, although I am not a doctor), you will start feeling better and start to heal.

 

(((((HUGS))))) to you.

[nvsmom]

Oh no, not a hypochondriac for sure! You can't fake pain, headaches,blood and diarrhea. You've listed a bunch of celiac symptoms, and have autoimmune diseases in your family - I recommend getting tested too... And testing your kids as well.

The full celiac panel is:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IGA

AGA IgA and AGA IgG

The first three tests will indicate that there is autoimmune damage being done to the small intestinal villi; the first test is a doctor favourite, the DGPs are newer and good for testing kids, and the EMA shows more advanced damage. Total serum IgA is a control test to make sure you make enough IgA for tests to be accurate, 5% of celiacs don't. the last test is for gliadin sensitivity and is thought by some to work for both celiacs and those with non-celiac gluten sensitivity (NCGS).

Make sure you eat gluten until the tests are done. I also suggest getting a copy of your labs as doctors occasionally slip up.

Good luck!

[Mimako310]

Oh no, not a hypochondriac for sure! You can't fake pain, headaches,blood and diarrhea. You've listed a bunch of celiac symptoms, and have autoimmune diseases in your family - I recommend getting tested too... And testing your kids as well.

The full celiac panel is:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IGA

AGA IgA and AGA IgG

The first three tests will indicate that there is autoimmune damage being done to the small intestinal villi; the first test is a doctor favourite, the DGPs are newer and good for testing kids, and the EMA shows more advanced damage. Total serum IgA is a control test to make sure you make enough IgA for tests to be accurate, 5% of celiacs don't. the last test is for gliadin sensitivity and is thought by some to work for both celiacs and those with non-celiac gluten sensitivity (NCGS).

Make sure you eat gluten until the tests are done. I also suggest getting a copy of your labs as doctors occasionally slip up.

Good luck!

 

Thank you so much for the info!  My 3-year-old had an endoscopy done a year ago (totally heartbreaking!).  He has also dealt with GI issues since birth.  I breastfed for his first 6 weeks, and he would eat for 5 minutes, then curl up in a ball and scream bloody murder, then 20 minutes later he would be hungry again, and the cycle would repeat itself.  I had a barely 2-year-old daughter at the time and was completely overwhelmed, so I gave up on nursing and switched to formula, but the problem only got worse.  He was having bowel movements 6-10 time a day that were green and mucousy, and my otherwise happy-go-luck baby would scream in pain for 20 minutes after every feeding.  Repeated trips to the pediatrician were met with "He'll grow out of it" and "it's bothering you more than it's bothering him!" 

 

We changed pediatricians when he was 3 months old and he was immediately diagnosed with MSPI (milk-soy protein intolerance) and silent reflux and was put on a hypoallergenic (and extremely expensive!) formula and Zantac.  He was a different kid.  Then when we introduced solids, we discovered that he had an exaggerated gag reflex.  Anything with a taste or texture he did like would cause him to gag and vomit the entire contents of his stomach. 

 

Just before his second birthday, he started vomitting for no apparent reason maybe once or twice a week and would be completely fine afterwards...like it never happened.  Then his already picky eating started getting even pickier, and the pedi referred us to a pediatric GI becuase she was concerned about Eosinophillic Esophagitis - a very scary disorder involving allergic reactions to all sorts of food in the esophagus with no outward signs of allergy.  Just before he went for his endoscopy, we got the news about my little brother's diagnosis (So I guess it was actually a year ago that he and my sister were diagnosed).  We asked the GI to take some biopsies to test for celiacs since they were doing an endoscopy already.  Both tests came back negative, but now I wonder if he was too young, and hadn't had enough damage yet for a positive Celiac biopsy.  And he never had bloodwork for it.  The endocopy was done less than 2 months after his 2nd birthday :/