Suggestions To Help A Friend

[kelliac]

brand new to this so forgive me if there is something wrong. I'm a celiac (after a lifetime of other diagnoses) and have a friend that I believe has it as well. Been trying to get her help but she was always resistant. Now she wants the help and the doctors are resistant to dx celiac disease. It's really sad to see someone get sick of being sick, make the effort to get well, and then be told to take more medicine.

Here's her story in a nutshell. She got very, very sick while pregnant with her second child. Had endoscopy while sitting in a wheelchair and 9 mos. pregnant. No biopsies were performed but she was given the dx of crohn's disease. She later lost her hair which came back after steroid shots in the head. She then ended up on prednisone for the past 23 years (on for months, off for a month or so, and then back on due to chronic diarrhea). To avoid future endoscopies, she fibbed about things and delayed dr. visits. As she continued to get sicker and sicker, she also got different medical problems. First her teeth went bad (numerous root canals, crowns, losses, etc), then had a hysterectomy for fibroids, endometriosis and inflammation, then gallbladder was removed (inflammation). Eventually her hands became crooked from the prednisone and her GI started her on large doses of Remicade. She gets hives off and on (from Remicade and other unknown reasons). She gets chelitis, redness inside her lip, eye problems, scaly dermatitis, goiters, pancreatitis, arthritis. Last year she had partial bowel removal and the biopsy said villous atrophy, crypt hyperplasia, increased lymphocytes. Her diagnosis was "Crohn's Colitis". They ended up taking out her appendix for inflammation. Started her on immuran (spelling?).

Doctors tell her celiac disease is rare. They only have one patient with it. Other doctors say celiac disease is the "disease du jour" and everybody's overreacting. She was just looking for alternatives and options and she was told to keep medicating. She's bloated, can't sleep, feels awful. When she finally asked me to help her go gluten-free, she seemed to do much better. But, the doctor(s) told her not to do the diet because it won't help crohn's. That's sort of what she wanted to hear. Finally, the doctor agreed to check her carotene level (which was 2, normal is 6-22). He told her that confirms that she has crohn's malabsorption and not celiac. Her genealogy is irish from both parents. Her siblings all have crohn's. Her kids have psoriasis (DH?), migraines, diarrhea, one son has growth problems. All kids were projectile vomiters. Same with nieces, nephews, etc.

Any suggestions on how to get her help. What tests should she have? Do immune suppressant drugs affect the outcome of celiac tests? What do you think of multiple endoscopies without any biopsies. Any doctors suggestions in York, Lancaster, Pennsylvania areas? Thank you.

[cornbread]

Hi

Sorry to hear yet another doctor-doesn't-know-anything story! I would strongly suggest having her order the "Gluten Sensitivity Stool and Gene Panel Complete" test from www.enterolab.com. This will test to see if her body is producing antobodies against gluten, and the gene test part will also confirm whether or not she has the Celiac gene (or maybe a gluten sensitive gene at least). If she has the gene it deosn't mean she definitely has Celiac, but if she *doesn't* have the gene it means it's most probably *not* Celiac. Either way, if her antibodies are high, this will prove she is gluten intolerant and should go gluten-free, whether Celiac or not.

Hope that helps!