New To All Of This And Looking For Support

[MommyStina]

I have just been recently "diagnosed" with celiac disease. I say "diagnosed" because it is a little weird how it all came about. I had been experiencing this nagging nausea and smelly, soft stools for months, and one June weekend, I ended up in the emergency room because I got so sick (all I had to eat that day was a whole wheat bagel and two pieces of cake at a church birthday fellowship). The next day, i saw our family doctor who said my reaction may have been galbladder related so he sent me for an abdominal ultrasound. Needless to say they couldn't find anything on it. He then sent me to a GI dr. who did a "complete"medical history and physical exam, all sorts of blood tests the same day that I saw him, and then scheduled me for an endoscopy two days later. It was clear, too, but there was some evidence of some erosion from acid reflux, (I had constant heartburn when I was pregnant) so I was put on

nexium and sent home.

The nausea and the strange stools continued, as did the weight loss. I called the GI dr. office a couple of times about it and was told to try managing my stress better and eliminate acidic and fatty foods from my diet. At one point, i was told it was IBS and I needed to better watch what I was eating.....that day I had only eaten some chicken noodle soup and a plain bagel and I was still sick. I started to think nothing could be done and i was just going to die young.. Then I started to think about my kids and panicked....I needed to figure out what was going on.

I looked back at my blood test results and discovered the gliadin antibody test ( i was premed in college, that is the only reason I was able to make heads or tails of the whole thing without the drs help...they sent my results but with no explanations attached).....just talking IgA now....negative<20,positive >30...my number was >130!!! The tTg and EMA were in the "acceptable range" which is why the dr. dismissed the numbers in the first place. Before talking to him, i started a gluten-free diet, i was willing to try anything at that point to feel better. It eliminated the nasty stools and I wasn't feeling nauseous all the time. I was never biopsy confirmed because the Dr. said the barium swallow xray series would confirm the diagnosis, but of course, it came back completely normal, too (i am not a dr, but i did complete my premed degree....how does a macroscopic xray test show evidence of microscopic damage....it doesn't from what I have read and learned).

I started off at a very petite 4'11" and 98#s. I have always been able to eat tons of food and never gain and ounce. I have always had random digestive issues my parents often attributed our family's history of gallbladder problems (maybe it just hit me extra early, they said). I now weigh in at 89#s and I randomly experience the terrible nausea, but not the gross stools anymore since being gluten-free. I also seem to have more energy than before...at least I don't want to just sleep all the time.

My questions to you all:

1. Is there a possibility this isn't celiac (the dr treated me like I was a little nuts....but I do have 2 first cousins with it and my grandmother possibly and my mom possibly)?

2. If I have been gluten-free for just a month, what else could be triggering the nausea (could i be sensitive to other things and what are the common ones...i know i am lactose intolerant as well)

3. How long does it take before the body has healed enough to start absorbing nutrients again...(or read: how long before I can expect to start gaining some of the lost weight back)

I appreciate any guidance and suggestions. I am just scared and feeling a little alone )-:

sorry this is so long....Thanks to everyone!

[mommida]

I don't know of other things that would be causing IGa levels.

A damaged gut could be sensitive to many things along with gluten. (I could not handle annatto, distilled vinegar, spinach, eggs, gluten free vitamins with iron, or any type of alcohol including vanilla for the first year of gluten free.) Keep a food journal to narrow down these other sensitivities or intolerances.

There is no clear, concise information to give you an answer that question. Some people feel immediate relief. Studies show the increased risk for Celiac related cancers have decreased to a normal rate after staying strictly gluten free for 2 or 5 years (depending on the study).

You are not alone, just check out the number of members here!

Laura