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My Biopsy Results Are In (and Positive).

GFinBC

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GFinBC Rookie
GFinBC
Posted

Well.......no big surprise for me. After being gluten free for 2 weeks and feeling great (emotionally, something I didn't expect :D ) I did a gluten challenge for 3 weeks before my unexpected biopsy and felt horrible (emotionally and physically :angry: ).

I got a call last week from my GP's office saying that my test results were in and that I needed an appointment to receive them. That appointment is on Tuesday. On Friday evening I received a phone call from my GI telling me that my results were positive. Initially I was going to cancel my GP appointment but realized that he will have a copy of the report so I can pump him for information. The only problem is that I have no idea what kind of information I need to get. In fact, I'm not sure if I need any information at all.

I assume that my 2 and 5 year old daughters will have to get tested now. Neither of them seems to have the disease but I didn't seem to have it either. I would like to get them tested before our entire household goes gluten-free.

What I am most interested in is the amount of damage. Could this be indicative of how long I've had the disease. I have been physically symptom free but since coming off gluten I feel way happier, less moody and more patient. These were obviously my bodies way of manifesting the disease. I can not remember when these symptoms began. Do any of you know if the report will contain information about the amount of damage or whether finding out about the amount of damage will give me any indication as to how long I've had celiac disease?

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RollingAlong Explorer
RollingAlong
Posted

I'm not too certain about degrees of damage. But I would ask if you could be checked for bone density issues and perhaps nutrient deficiencies (this could wait for 6 months?)

cat3883 Explorer
cat3883
Posted

I think you should make an appointment and go to you GI. He will know more about celiac disease than you GP. As soon as I was diagnosed my GI had me get a bone density test. He had me go to a dietician. My insurance wouldnt pay for one but it was well worth the money. I was diagnosed Oct.15, 2008. I consider that my "new birthday"as that is when I began living again! In April my GI will run blood tests on me to see how I am doing, but I can tell you I am marvelous. No more headaches, fatigue, PMS, brain fog, etc etc etc. I feel blessed to have been finally diagnosed as I was sick for 12 years. My GI said I will be able to go off my antidepressant and anxiety meds a year from diagnosis as it takes the brain longer to heal. You will find so much info on this site. There is probably a celiac group in your area. Also if there are any health food stores in your area they may have meetings on Celiac. Good luck to you.

Jenny (AZ via TX) Enthusiast
Jenny (AZ via TX)
Posted

My GI have me do a bone density test. I would ask your GI to check your vitamin levels, specifically B12 and D3 and also your ferritin levels. My GI also told me to go to a dietitian but to ask if they have patients with Celiac. She told me not to waste my time if they didn't have experience with celiac and that I would find more info on the internet.

I was in such shock when I got my dx, I just kind of nodded and left. You are already ahead of the game by researching and being on this forum. I didn't really know what celiac was until I was dx'd.

The report I received did say the amount of damage. Mine was moderate to severe. And, almost one year later, I feel pretty good!

Good luck to you.

Tallforagirl Rookie
Tallforagirl
Posted

What some others have said about getting bone density testing, full blood count and seeing a Celiac specialist dietician, I would echo. Especially the dietician. If they can show you what to look for on labels to know what you can eat rather than you being scared to eat anything, that is invaluable. You won't have to stick to buying only products labelled "gluten free".

What I am most interested in is the amount of damage. Could this be indicative of how long I've had the disease.

There is general acknowledgement that damage can be patchy, so I'm not sure that the amount of damage shown just in the small biopsies they took could be taken as representative. Also, severity of symptoms are not a reliable indicator of severity of damage to villi.

...since coming off gluten I feel way happier, less moody and more patient.

Me too!

celiacprincess Newbie
celiacprincess
Posted
What some others have said about getting bone density testing, full blood count and seeing a Celiac specialist dietician, I would echo. Especially the dietician. If they can show you what to look for on labels to know what you can eat rather than you being scared to eat anything, that is invaluable. You won't have to stick to buying only products labelled "gluten free".

There is general acknowledgement that damage can be patchy, so I'm not sure that the amount of damage shown just in the small biopsies they took could be taken as representative. Also, severity of symptoms are not a reliable indicator of severity of damage to villi.

Me too!

I, too, was just diagnosed, and need to find a nutritionist. I am having difficulty finding one in my area using the web, any ideas?

Tallforagirl Rookie
Tallforagirl
Posted
I, too, was just diagnosed, and need to find a nutritionist. I am having difficulty finding one in my area using the web, any ideas?

Where do you live? Maybe someone on the board can recommend a local dietician.

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happygirl Collaborator
happygirl
Posted
I, too, was just diagnosed, and need to find a nutritionist. I am having difficulty finding one in my area using the web, any ideas?

Open Original Shared Link

or, contact a local support group (if available) and ask for a referral.

Gluten Intolerance Group (GIG) Open Original Shared Link

Celiac Disease Foundation Open Original Shared Link

Celiac Sprue Association www Open Original Shared Link

celiacprincess Newbie
celiacprincess
Posted
Where do you live? Maybe someone on the board can recommend a local dietician.

I live in Minneapolis/St. Paul area, and have sent an email to the local support group

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