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Old 08-15-2010, 07:18 PM   #1
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Stabevrian HB User
What were your celiac symptoms? Just had a positive blood test, now need endoscopy

Hi-
If you have celiac, what were your symptoms? How long did it take to get diagnosed? How old were you when you were diagnosed? My Dr let me know Friday that a blood test was positive for celiac and I have to have an endoscopy to confirm.

I have been having a lot of weird symptoms since Oct 09- mainly rib cage and left side pain. I also had enlarged axillary lymph nodes that have since gone down- not sure if that was celiac related. I just want to start feeling better- I have upper left ab pain almost everyday now.

Also- do autoimmune diseases run in your family? My Dad has MS and thyroid issues.

Thanks!

Last edited by Stabevrian; 08-15-2010 at 07:19 PM.

 
Old 08-16-2010, 10:22 PM   #2
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Re: What were your celiac symptoms? Just had a positive blood test, now need endosco

It took almost ten years for me to get diagnosed. I could never get a straight answer from doctors to what exactly was wrong, just alot of "well, we think it's this . . .", I was misdiagnosed with anxiety, gallbladder trouble, lactose intolerance, GERD, atypical premenstrual symptoms, and the classic catch-all irritable bowel syndrome.

I was 35 when dx. Multiple sclerosis runs in my family too, as well as vitiligo, juvenile arthritis and thyroid disease - all linked to celiac. Other diseases linked to celiac are autoimmune liver disease, sjogren's syndrome (dry eyes, mouth), migraine, depression, and type 1 diabetes. By "linked" I mean there's a higher % chance of developing one or more of these illnesses if you have untreated celiac.

After my endoscope, I went gluten free immediately. I felt better within two weeks, although I felt much, much better after a year. My mother has celiac (as do several cousins) so going GF wasn't that hard for me.

Good luck! Let me know how it goes! Any questions about the diet, just ask My new favorite GF bread is Udi's whole grain (flax and teff flour added to a basic rice flour mix). I even found it at my local grocery store.

 
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Old 08-18-2010, 06:58 AM   #3
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Re: What were your celiac symptoms? Just had a positive blood test, now need endosco

Thanks Leela! Do you have any others of the AI disorders? I know they tested me for quite a few others when they did the celiac test and they came back negative. Diabetes runs in my family too. I have my GI appt Friday and then probably the endo next week sometime, I have to meet with him first. I just want to get started on the GF diet to see if that makes a difference. My left sided rib pain is really unbearable. I hope it is connected to the diet.

Thanks for your response!

 
Old 08-18-2010, 10:30 AM   #4
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Re: What were your celiac symptoms? Just had a positive blood test, now need endosco

Quote:
Originally Posted by Stabevrian View Post
Hi-
If you have celiac, what were your symptoms? How long did it take to get diagnosed? How old were you when you were diagnosed? My Dr let me know Friday that a blood test was positive for celiac and I have to have an endoscopy to confirm.

I have been having a lot of weird symptoms since Oct 09- mainly rib cage and left side pain. I also had enlarged axillary lymph nodes that have since gone down- not sure if that was celiac related. I just want to start feeling better- I have upper left ab pain almost everyday now.

Also- do autoimmune diseases run in your family? My Dad has MS and thyroid issues.

Thanks!
I was diagnosed a year ago. My main symptom that was finally linked to celiac was anemia. I have had I.V.'s for iron to replenish & I had good results after 1 allergic reaction. I also end up with stomach pain & diarreah (sorry if too much info , but I feel lucky that those are really my only problems. I just wanted to warn people who are chronically anemic to check for celaic.

 
Old 08-22-2010, 03:20 PM   #5
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Re: What were your celiac symptoms? Just had a positive blood test, now need endosco

Hi,

I'm glad to see you're getting close to your diagnosis as life will get better for you after this is over and you can go gluten free.

I was diagnosed last November and I am 24 years old. My initial symptoms were very very bad stomach problems. From the time I was 6, I was in hospitals about my stomach pains and loose bowel movements. I was diagnosed with IBS, GERD and anxiety. Then in April of 2008 I collapsed and was taken to the hospital. It turned out my resting HR was 30-50 and my sleeping HR was 20ish. My heart then took two 10 second pauses in the hospital, so they put a pacemaker in. Then my blood pressure started to plummet below 80/50 constantly and I have to take medication to keep it normal now. Then my HR started to go too high with exercise, which they said is due to an over-reactive Sinus Node. The pacemaker, BP and Tachycardia all were related to a poor autonomic system my Neurologist says is caused by autonomic nerve damage due to undiagnosed Celiac. What got me on the Celiac road though was I became slightly anemic and bone marrow was starting to suppress, so the Cancer specialist said she wanted to test for Celiac before I saw her. The blood test and endoscopy were both positive and I was Dx'd with Celiac. My problem was all my other issues pointed nowhere near Celiac. My GI doc feels because of the extent of my problems and my intestine being nearly flat, that I had Celiac since I was in the hospital as a kid, so my diagnosis seems to have taken about 17-18 years.

Sorry for the long winded story but I just wanted to tell you, don't let anybody diminish the importance of this disease. If you don't treat yourself with the GF diet, the symptoms are not just mild as you can see with my past, it can get serious. The good news is, the GF diet is much better than taking a pill. It is hard at first, but you will get used to it. Unfortunately for me, after almost a year my tTG is still too high, but I made some mistakes on my diet which I am trying to correct.

As far as autoimmune in my family, there is only diabetes and I am the first with Celiac.

All in all...I wish you the best and let us know how the endoscopy goes.

Last edited by goleafsgo; 08-22-2010 at 03:21 PM.

 
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