SaraKat

I had my consultation with the GI Dr this morning after getting a positive blood test last week. I told him that I was concerned about damage to my intestine since I am 35 and didn

I am not 60 or even close (I'm 35), but I have no GI symptoms at all (except I have always been gassy- esp when I eat junk food).

My main symptom was that I had this nagging pain in my left upper quadrant near the lower left ribs. I was dx'd with costochondritis after having CT scans, XRAYS, and ultrasounds which all were normal. After the pain seemed to be getting worse I kept going to different Dr's (I've never even heard of celiac) and last week my rheumatologist did some random testing and it came back positive for celiac. Another symptom I missed- I have been iron def anemic for a while and never really knew why, I would take iron and it would go up, but the iron related levels (RDW, HCT, MCV, etc) would always be off, they never all went up to normal and my ferritin was very low (5). I had no clue this was all related. The rheum told me I needed to go to a GI Dr to have an endoscopy for get the official diagnosis.

I had my appt with him this morning. He told me that many celiac's don't get diagnosed until they are in their 50's or 60's.

What symptoms is she having? Is she anemic? I guess that is a biggy.

I just got a positive blood test last week (I am 35) after going to a slew of Dr's for different weird symptoms (non of which are classic celiac). She told me she was going to run a bunch of blood tests, so she called the next day and told me it came back positive for celiac. I was shocked and really never heard of this disease.

Anyway, I just happened to have had my annual gyn exam yesterday and brought up the celiac thing to her and asked her if it would affect my chances of getting pregnant, etc. She told me that celiac is something you really never heard of before, but now it is being "over diagnosed"! LOL I was like well, if someone is positive for it, how can a Dr really over diagnose it, it's not like they are making up the results! Anyway, she then said as long as you stick to the diet you shouldn't have any problems, she has seen a lot of pregnant women with celiac with no issues.

I just thought her comment was weird!

Can you just go to a regular restaurant and order something on the menu, but plain? Like a piece of salmon with broccoli plain? I go out to dinner all the time, and I have never noticed a gluten-free menu at any of the places I frequent (in Greenwich, CT & Rye, NY)? Or can't I order a salad with no dressing or cheese and obviously croutons?

Thanks!

Thanks! Speaking of calcium, I found a blood test I had done in April 2010 (before my celiac positive blood test) and my calcium, B12, and D were all in the normal range. My iron and ferritin were low though. Do you know if that has any indication about the condition of the intestines? I must have been absorbing some nutrients for them to be normal. All my liver levels were normal also.

3 musketeers, raisins, peanut M&M's

My endo likes to keep me at 2-2.5. I take 25 mcg of synthroid now. I just started this in April. I have to get my levels checked again soon. They were around 4.

Did you ever find out what this pain was from? This is exactly the pain I am having. It hurts to wear a belt or tighter pants/skirts because they put pressure on my side when I sit.

They could be eruptive syringomas. I went to my derm about 3 months ago and she found these things on the back of my knee that sound exactly like what you describe. She biopsied them and they came back as eruptive syringomas, she told me the most common spot for them is under the eye. She also told me that they can be autoimmune disease related. Interesting that I just tested positive for celiac last week.

I got the positive blood test last week and I am having the endoscopy next week and I am flipping out about the intestinal damage I may have been doing all these years. I am 35 and have been eating gluten all these years. I love cereals, chips, etc. I am so nervous!

How old were you when you were diagnosed?

My main symptom is left sided rib cage pain and I've always have mild gas- I always thought it was when I ate junk food. I am hoping the left sided pain is from the celiac. I just want to get the final dx and start the diet to see if I feel better.

Thanks!

Pain in my left armpit was one of the reasons I kept going back to the Dr. Finally they did an U/S and it showed one enlarged node at 1.5cm. They told me to wait to see if it went down, 3 months later I had another U/S and there were 2 enlarged- 2.1cm and 1.8cm. At that point I was referred to an oncologist and had a CT Scan and XRAY. They had fatty centers and she "didn't think" they were malignant so she wanted to wait 2 more months to redo the U/S. The pain was so bad I had them retested a month later and the largest one they could find was 7mm. So, they went down, but I still have the pain. WEIRD. This was 3 months ago.

Fast forward to last week- I went to a rheum for left sided rib pain I was having (ongoing) and she did a blood test and it was positive for celiac. So, I wonder if those enlarged nodes were related.

I just got a positive blood test too (I am 35 y/o female). I have to have the endo next week and I am nervous too, but everyone I talk to says it really isn't a big deal at all. My BIL who is not a fan of getting blood tests, etc has had 2 endo's and even he said it was OK.

Regarding the lipase levels, mine were normal, but my iron/ferritin has been way off for years now and I never knew why.

I didn't have any of the typical celiac digestive symptoms and really never even heard of this disease, so I am shocked by my positive blood test. I just have bad upper left quadrant pain and have been mildly gassy over the years when I eat "junk food". I think the anemia should have been my red flag. My main symptom that made me keep going back to Dr's was the left sided pain- also in the rib cage.

Good luck!

I am looking for one too! What part of CT are you in? I just had a positive blood test and need and endoscopy and was referred to Jennifer Kauffman out of Rye/Harrison, but has affiliations with Greenwich Hosp. I am kind of looking for more refereneces also. I am new to this!

Hi All- I have been dealing with weird symptoms since Oct 09. I have been told I have costochondritis after having normal CT scan, XRAY, and ultrasounds. I've had some blood work done in the past and everything was mainly normal, but I was anemic. I went on iron and that seemed to help. I was feeling that my symptoms were getting worse and I kept being told it was just costochondritis, but last week I went to a new rheumatologist and they tested me for a bunch of things and I was told Friday that I was positive for celiac. I am kind of in shock, I really have never heard of this disease. I was told I need an endoscopy. I am pretty nervous.

I guess my question is- did anyone have rib pain or underarm pain with celiac? Also, how long did you have symptoms before you were diagnosed?

What type of symptoms do you have? I don't seem to have the symptoms listed on the celiac site except for the abdominal pain (mine is in the upper left side and is a dull ache, sometimes shaper).

Thanks so much!