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Biopsy

tweeks2010

By tweeks2010
in Coping with Celiac Disease

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tweeks2010 Apprentice
tweeks2010
Posted

In the last 5 years I have had mild to severe ongoing stomach problems with almost every sypmtom you can think of...minus vomitting. Over that period a few months ago...one of my doctors said "do you think it could be celic?". So I went home and read about it...then I stopped eating glten..sure enough within like 2 days I was alomst 100% better. At that time i was diagnosed with non-ulcer dyspepsia,gerd,anxiety and ibs. I also quit taking the meds when I went off of gluten. So I have been gluten free for about 2-3 months now except for being gltuened 3 times. In the last few months I have been delaing with 2 different doctors...one kept insiting it was ibs untill i brought her a full list of my symptoms when I was one gluten and the difference when I was off...and the other says.. "based on your results from starting a gluten free diet..your celiac...stay off it...and you should wait a while to get a biopsy done...just so you are healthy for a bit." The other docotr says "we should get the biopsy done right away , so if it is celiac we will know what other test to do..like bone density scan and blood work...so we need you to start eating gluten for a week or so, then get it done.

Funny thing is...I had all my bloodwork done...I'm not defficient in anything...and SHE ordered a bone density scan for me like a momnth ago for something else...

I don't feel like she is taking me seriously. And I don't want to eat a bunch of gluten to get a positive biopsy result.

My bloodwork for celiac was done after I have stopped eating gluten..me not knowing that it would immediatley not show up on the blood test.

Last week I had a salad ...but olives TOUCHED it...I didn't eat them...they just touched it. NAd I was sick for 4 days with almost severe stomach cramps...just from that tiny little bit.

I feel like she thinks I am lying about my symptoms..escpeically when I tell her I don't want to get a biopsy done because I don't want to be sick...I am too busy and I really don't think my body can handle that again. I'm just skimming by now with everything else going on.

Should I get the biopsy done...if I don't..does that make me any less of a celiac? I feel like because I didn't have positive bloodwork and wont get I biospy I am a fraud....

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firefightersgal Apprentice
firefightersgal
Posted

I don't have an official diagnosis of Celiac at this point, but I expect to get one tomorrow. (I have a two-week follow up appointment and will hear back about my blood work). I plan to opt out of a biopsy. For one thing, I don't want to go back on gluten. I've been off for two weeks and have been glutened twice already. (Apparently, my learning curve is a big one :D ) It isn't fun at.all. I don't want to have to make myself sick to tell the doctor what I already know. Also, we are actively trying to get pregnant. I'm hoping that going gluten-free is my infertility magic bullet. I don't want to risk a potential pregnancy or fertile time with a biopsy. Also, I feel like it is an unneeded cost...and probably an expensive one.

So, in my mind, no. Opting out of a biopsy does not make you any 'less' of a Celiac. I think a lot of people are self-diagnosed, so I would assume the consensus here is the same.

missceliac2010 Apprentice
missceliac2010
Posted

Should I get the biopsy done...if I don't..does that make me any less of a celiac? I feel like because I didn't have positive bloodwork and wont get I biospy I am a fraud....

No, if you don't get a biopsy done, you are not a fraud. In fact, I don't know why or how anyone could deal with intentionally glutening themselves with the equivalent of 4 slices of bread per day for a month or so in order to maybe get a positive result. My doctor offered me a re-test (I had a biopsy, but it was negative, but I had been very sick in the hospital not eating or drinking anything for 3 days before the test, so a false negative was likely.) I am not a masochist, and my doctor said that "based on my positive results from the gluten elimination diet, he is diagnosing me with Celiac Disease anyway". So I figure why bother?

Unless you live somewhere where you have the potential for food cost reimbursement if you have an "official" positive Celiac test result, I see no point in putting yourself through that. You know your body. You are allergic to gluten. You have Celiac Disease. Stop eating gluten and you will keep feeling better. It's like when my kid says "it hurts when I _____", and I say, "so don't_____!" LOL!

A lot of people on here are diagnosed just based on the elimination diet exclusively. From what my doctor told me, the tests that have been created to detect Celiac are not very sensitive, and require the patient to be very sick before they will come back positive.

Good luck.

Skylark Collaborator
Skylark
Posted

Waitaminute. You are thinking about getting a biopsy so your doctor doesn't think you are a fraud? You are the consumer paying for health care. If your doctor doesn't listen, find another.

My current doctor told me that I should not gluten myself for testing. If it makes me sick, he says to avoid it and that's that. He told me the tests are unreliable and he considers response to the diet the best diagnosis. He will check bone density and so forth as if I'm celiac, since women should be checked for bone density and vitamins anyway.

citylove Newbie
citylove
Posted

Waitaminute. You are thinking about getting a biopsy so your doctor doesn't think you are a fraud? You are the consumer paying for health care. If your doctor doesn't listen, find another.

My current doctor told me that I should not gluten myself for testing. If it makes me sick, he says to avoid it and that's that. He told me the tests are unreliable and he considers response to the diet the best diagnosis. He will check bone density and so forth as if I'm celiac, since women should be checked for bone density and vitamins anyway.

Of course you should only opt for any procedure, minimally invasive or not, at your discretion.

However, I might point out that if your suspicion and concern is regarding celiac as opposed to gluten intolerance, you're dealing with more than just a simple food allergy. Celiac is an autoimmune disorder, and while a gluten-free diet is the best and only treatment, it's also the only line of defense for Celiacs against a host of other health issues.

If you're truly concerned about this diagnosis, get serious with your doctor. Gluten sensitivity or intolerance is one thing...celiac is another.

tweeks2010 Apprentice
tweeks2010
Posted
  • Author

Of course you should only opt for any procedure, minimally invasive or not, at your discretion.

However, I might point out that if your suspicion and concern is regarding celiac as opposed to gluten intolerance, you're dealing with more than just a simple food allergy. Celiac is an autoimmune disorder, and while a gluten-free diet is the best and only treatment, it's also the only line of defense for Celiacs against a host of other health issues.

If you're truly concerned about this diagnosis, get serious with your doctor. Gluten sensitivity or intolerance is one thing...celiac is another.

I know the diffence between celiac and gluten sensitivty/allergy. I have spent lots of money on books,ect to educate myself all about celiac. I have all of the symptoms of it. If I wanted to know the difference, then that would have been my question. It's not really that easy going gluten free for months...feeling 100% better...then going back on it JUST to get a positive biopsy result. Probably easier for someone who is still consuming gluten while being tested.

THanks anyway

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