A family in need of answers

[MrsPea]

Hi All,

I've been stalking this forum for awhile and figured I should post my story. 

My 2 year old has been diagnosed with toddler diarrhea and we were told he'd grow out of it in a couple years. This was not an acceptable answer to me. A part of me was looking for an answer to his chronic diarrhea to find an answer for myself, to find an answer for my mother. Around 18 months he had a blood test for celiac but it was negative. His GI did warn me that just because it's negative now doesn't mean it won't test positive later. ? His stool samples were all fine, except he tested positive as a c. Diff carrier, meaning he tested negative for the toxins assoc with c diff.

I have self diagnosed myself with IBS my whole life, I'm 34, because my mom has IBS. I also have a sensitivity to lactose. At least I can tolerate small amounts of milk, like a tbsp in coffee but not a whole latte's worth. This past year I've had 5 chemical pregnancies, or recurrent pregnancy loss. ? And my IBS episodes are starting to feel more like a symptom of something larger going on. So far testing for my rpl has revealed very low levels of estrogen. 

I also can not drink beer, especially wheat or brown ales, it causes me to immediately bloat and have horrific hangovers. Since my pregnancy with my son I can't tolerate soy milk either. 

My son and I saw a nutritionist recently who put us on a low carb, gluten & dairy free diet. The first week we only went low carb and both of us got WAY worse and lost our energy. Week 2 we additionally cut gluten & dairy. We went from bad to worse! My thyroid literally sent me into hybernation mode and was having kidney pain. After throwing up, we both stopped this diet. Pizza perked us both back up. However the day after returning to a normal diet my body attacked me at 5am! I woke up in pain, like my insides were melting. After hours on the toilet I was finally able to get some rest. 

I'm on day 2 of another attack today. Yesterday I had trouble waking up, my eyes felt heavy all morning, I made silly mistakes like giving my son 2 sausages and my husband & I only 1. Trying to make a grocery list for the week was a difficult task. I couldn't concentrate or focus on meal planning. Silly mistakes continued at the store, and by the time dinner was made my "bad tummy" episode began. Abdominal cramping had me doubled over the rest of the evening. Pepto helped reduce it to a functional ache, and mild nausea. The cramping/ nausea continues today along with a headache. 

I'm seeing a GI tomorrow to be tested for celiac, or anything else that could be doing this to me. 

My mom is in her 60's and I believe her ailing health is the result of untreated celiac. She swears she's been tested and it "always comes back as IBS", but I'm not sure what her testing has consisted of. This past year she's been randomly falling down without any medical reason. She also has occasional seizures, again no medical reasoning has been found. She had terrible endrotremisosis that resulted in a full hysterectomy in her 40s. And early onset osteoporosis. Year after year she has these awful medical anomalies with no under lying conditions to explain them.

I see this pattern starting to emerge in me and it terrifies me. I've had a random attack of vertigo and shingles in my early 30's. Now I can't hold on to a pregnancy. I hate seeing what I recognize as my IBS symptoms in my son already. We are truly a family in need of an answer! 

I'll try to keep this post updated as I go through testing. Regardless of outcomes, we'll be starting a proper gluten free trial period once I've had the testing done. I'm anxious to start that actually. 

Thank you for enduring my essay of medical complaints. 

 

[mommida]

Sorry to hear you are going through all of this.  ((HUGS)) cyber hugs to you

Continue to eat gluten through out your testing.  To really find answers you will probably need to have an endoscopy with biopsy.  Have a full discussion with your doctor to understand what medical issues can be ruled out or diagnosed with the biopsies.  (also make sure the pathology tests for everything possible are being tested. i.e. eosinophils with red dye - no doctor ordered screening = no red dye= no eosinophil count)

In the time being... Keep a food journal.  Diet, symptoms, and activities compared to a time log.  In the case of Eosinophilic Gastrointestinal disorders; active damage happens for up to 12 days after a "trigger" has activated eosinophils that may be airborne.

Good luck with testing and feel better soon!

[MrsPea]

Thank you. There is so much to know, or look for its overwhelming. Every time I read this forum I end up googling several words or conditions. 

Question, does anyone know if doxycycline will interfere with celiac testing? 

I was put on it to help avoid getting an infection from a saline ultrasound I'm having this week also. Gotta love all the poking and prodding dr's like to do. 

[MrsPea]

Well, my blood tests have come back negative. My mom on the other hand has been diagnosed with type 2 diabetes, so we have some answers there. 

I plan to eliminate gluten for a month or so to see if that helps my son & I. I'm also asking my dr to check my insulin levels given my mom's diagnosis.