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Diagnosis

nothing but nicole

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nothing but nicole Apprentice
nothing but nicole
Posted

I have already had an upper endoscopy, a flexible sigmoidoscopy and multiple blood tests ran. Now my Dr. wants to do a full colonoscopy to make sure I dont have Crohns disease. I have been reading some very contradictory information on the internet and am confused. I have constant nausea (I was also told I have an ulcer), skin problems but just on my arms and legs around my elbows and knees, and am constantly gassy along with a few other symptoms. Everything points to Celiac and my Dr. told me that he thinks that is what I have, however when my sister called her Dr. to be tested for the gene her Dr. literally laughed at her and said that the disease is often misdiagnosed. The Dr that I have been going to is very thorough and has already sent me to get my vitamin levels tested, to a dermatologist, to have a bone scan, and to a dietitian. The information the dietitian gave me says not to start a gluten free diet until you have been fully diagnosed and that information comes from the american dietary association (or what ever it is called), I have also found like information on the internet. I don't know what I should do for the next week until I have to colonoscopy but I think that with the tests already ran the Dr. should have a diagnosis. Or am I being too critical? I was thinking about easing myself into the gluten free diet over the next week, that way by the time I have the colonoscopy I will be ready to give it up. Any comments or ideas regarding my situation would be greatly appreciated!

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CarlaB Enthusiast
CarlaB
Posted

Celiac is diagnosed by a blood test and biopsies taken during an endoscopy. Did you have either of those?

It's best to get an accurate diagnosis in the beginning. If it comes out that you don't have it, give the diet a try anyway. You may be non-celiac gluten intolerant like I am. If your tests are negative and the diet doesn't help, then you know you need to keep looking to find out what it is. But give the diet some time. It may or may not be celiac/gluten intolerance, you won't know till you try the diet. There are other diseases with GI symptoms so don't be satisfied until you feel better!

It doesn't sound like you're being tested for celiac as a colonoscopy can't diagnose celiac.

rez Apprentice
rez
Posted

Carla, great minds think alike. :):):) Long time , no type! :):) I saw upper endoscopy, but not biopsy. Also, ask for a copy of the blood tests that were run. You need to check everything and take matters into your own hands. That's what I had to do for my son. After I asked for a copy of the blood tests, the wrong test was run. We are now working with one of the best Celiac Experts in the world. Dr. Guandalini at the U of Chicago. No comparison to the others. My advice to anyone is don't mess around. Find a true expert. You also need a good pathologist to read the biopsy. Someone who isn't just looking for flattened villi, but also Marsh 1 damage. Focus on the medical sites like Wikipedia and Web Md. The University of Chicago has an awesome Website. Be careful not to get caught up in too much opinion stuff. Educate yourself w/ good, hard medical facts. Dr. Peter Green's book is fantastic and is like the Celiac bible. It's called Celiac Disease, A Hidden Epidemic. DON'T go on a Gluten free diet until you've reviewed all your records and are absolutely sure you've been accurately accessed for Celiac. You don't want to go back to do a gluten challenge. Good luck!

CarlaB Enthusiast
CarlaB
Posted
Carla, great minds think alike. :):):) Long time , no type! :):)

Yeah, I've been focusing on getting my Lyme under control ... it gets hard to answer celiac questions when I have Lyme on the brain. :rolleyes:

nothing but nicole Apprentice
nothing but nicole
Posted
  • Author
Yeah, I've been focusing on getting my Lyme under control ... it gets hard to answer celiac questions when I have Lyme on the brain. :rolleyes:

I accidentally posted this twice, the dr. did do two biopsies, one in my stomach and one in my small intestine. I am scheduled for a full colonoscopy next week to ensure I dont have Crohns disease. The Dr. didnt discuss the results of the biopsies with me, he just simply said that by the look of my colon (it looks like bubble wrap) I most likely have Celiac. He also discussed my family line of decent (Im Irish) and said that is common in Irish folk. The Dr. told me to start the gluten free diet as soon as possible so that I could get it under control. I have the picutures they took of my stomach and colon. I also have an ulcer so I dont know how many of my problems could be caused by that. I have also seen on here and everywhere else that the biggest symptom of Celiac is diarreah, I dont really have that in the sense of the word. I have soft stools and urgency to go, just not all the time. I never in my life have had diarrea in the sense that you have to go urgently for a period of time. (I dont know if this makes sense to anyone else, when I need to go I have to go otherwise there will be problems but it doesnt happen repeatedly throughout the day. I have a sister that also has it but I have been told that is common in people with down syndrome, which she has. I am so confused and at this point frustrated with Doctors. I have noticed since he told me that I have been eating everything I know I will never be able to eat again (mature I know) and I have had more bowel problems and nausea.

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