Possible Celiac, Need Advice Please.

[angfrance2]

Hi, my name is Angela I am 22 years old and about 3 weeks ago my regular Physician treated me with IBS but, thought that I had Chron's Disease. I went to a G.I doctor he is suppose to be one of the best in Houston. He did a Colonoscopy said everything looked good no sign of Chron's. He took blood test and biopsies and told me he "didn't know what is causing the symptoms". I go back tomorrow for a follow up appointment. My dad's mom's sister(my great aunt) has been diagnosed with Celiac for at least 20 years. My dad also has acid reflux and rheumtoid artheritis. My symptoms include: chronic abdominal pain,nausea,diahearea,sometimes vomiting(happens more frequently then what I would like). I've had rectal bleeding that filled the toilet and toilet paper, which the bleeding hasn't happened within the past 6 months. I get really bad pain joint pain in my knees, that has been going on since high school at least 6 or 7 years. I always thought it was because I was a dancer for so long but, my cartledge in my knees is perfect no problems there. I also get extremely itchy at times no real rashes just all over my body itchy and in high school I missed about 2 weeks of school because I had a severe rash all over my elbows, knees, in between fingers and the doctors could not explain what caused it. I also get loss of appetite and weight loss. In the past 2 weeks I have lost 10-15 lbs. I feel exhausted ALL of the time. I seem to feel like I never get enough rest. Sometimes if I sit upright on my couch with my legs just down normally they lose feeling I told my fiance once that sometimes I feel like I has restless leg syndrome. These things have been going on for 3 years. I have been going to my primary year consitanly for a year for chronic diaherea, abdominal pain, weight loss, fatigue, rectal bleeding, etc. I have been out of high school for 4 years so those stories are a little older. I have also been on accutane the highest dose two times a day for 6 months. Plus I am always sick if i'm not in the doctor for that i've been in there all in the past year with pneumonia, flu, cold's and viruses. I have never tried to go off gluten. I actually never even considered celiac disease before. Other weird thing my menstreual cycle is always normal a consitant 7 days. Lately it has been a whole lot lighter and ending a day or two early. I also feel my symptoms are worse during that time. I also get sharp pains in fingers, other joints such as my elbow and random other areas. I called my G.I doctor yesterday because I couldn't get my fever below 100-101 and they told me I just had a bug. My primary care physician told me to come in and ruled out any sort or bug, cold, or virus. He said it is definitly related to to my Gastro system. It never seemed as though my G.I doctor even considered Celiac disease he didn't even mention a possibilty even after I told him my great aunt had it. My G.I doctor has been very unresponsive and telling me from the begining that nothing is wrong but, I am feeling other wise. I mean the sympomts have been going on for 3 years straight with no real relief.

If anyone has any advice I would greatly appreciate it and thank you for taking the time to read my story.

[Skylark]

Well, I guess you will know tomorrow.

It's very possible your symptoms are caused by gluten. Even if everything is negative, I'd strongly suggest give the diet a try. Drop dairy too for a while; it can be very hard to digest if you have a lot of inflammation/damage from gluten issues. Non-celiac gluten intolerance can still make people pretty sick and all the celiac tests come back negative.

Good luck!

[TeknoLen]

It was unclear to me if your current GI doc ordered a Celiac blood test panel on you or not. If he did, like Skylark said you will know something tomorrow. If he did not, then a Celiac panel would be a very good test to have run. If your current GI doc remains non-responsive, consider a consult with a new GI doc.

You might also ask your doctor about coming off the accutane for a while. I am assuming you are taking that for acne and that is cosmetic which should take a second priority to your more serious GI health concerns, IMHO.

Good luck!

[angfrance2]

Oh I am not sure if he even ordered one he was more focused on Chron's or Colitis at the time. He did not even mention testing for Celiac. He did not even suggest doing an Endoscopy. The only advice he is given me is to come off my medicine and eat whatever I want. Which really isn't the advice i'm looking for. I saw a GI doctor about a year ago and he recomended who did an upper GI I believe and recomnended that I get both a Colonoscopy and an Endoscopy. I am currently not on accutane sorry for the confusion. I finished taking it about 3 and a half years ago. Thank you for the advice and comments. I am just worried because my GI in being very unresponsive and has been telling me i'm fine since day 1. My regular physician seems to think other wise and is getting all the files with my GI doctor and is probably going to order me to do more blood work. So hopefully tomorrow my GI doctor will be a little bit more responsive.

[Skylark]

Oh, you totally confused me. Keep eating gluten and insist that your GI run a celiac panel! If your GI continues to be useless, fire him and get another GI if possible. Most insurance plans have multiple specialists available and there is no reason to stick with a doctor who is not helping you. Your normal Dr. can definitely order a celiac panel if the GI refuses.

[mushroom]

Good golly, yes, that is insane if no one has yet tested you for celiac