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Must I Have The Biopsy?
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Hi There! I am new to the world of gluten intolerence and to message boards. I am 35yo and have just had the gluten intolerence blood work. My results were psoitive for gluten intolerence and I have been gluten-free for two weeks. I feel so much better. I could go on and on about that but I'd be preaching to the choir! I am wondering if I really must have the biopsy? My PCP who did the blood work has not even mentioned it. She simply told me to avoid gluten. I have to say I have had symptoms for as long as I can remember. I have had an IBS diagnosis since I was a teen. I was diagnosed with Hypothyroid this year. I bring that up because I was suprised to learn there is a relationship between thyroid idease and Celiac. Anyhow, I really don't want to have the biopsy. I had a colonoscopy 6 years ago and don't want to do anything like that agian unless I really, really have to. Any suggestions?

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Wow, your situation sounds exactly like mine two moths ago except for the thyroid and the fact that your PCP hasn't mentioned the biopsy yet.

The first thing my doc mentioned was the biopsy. I beat him to the punch by going gluten-free for the weeks prior to my next visit. Like you, I will avoid invasive procedures at almost any cost. The way I figure, if not eating gluten makes me feel better, then who really gives a fig what the biopsy says? The biopsy is, literally, the "gold standard," and that is even the term my doctor used while trying to persuade me to get it done, but the fact is that it is not definitive, and as with all procedures there is always some risk associated with it. For one thing, if you want to have the biopsy done then you will need to eat gluten for several weeks prior to the procedure. I already know that you won't want to do that since you are feeling so much better. What I decided to do was to continue the diet to see whether I continued to improve or not- I'm not 100% better yet you see, but I am getting better every week so far. I have a follow up visit in a few months to see how I am progressing. This wasn't my doctor's first choice, but it isn't my doctor who is suffering. Remember that it is YOUR body and only YOU can decide whether to have any procedure done. I think the biopsy is going to need some serious re-examinations in the near future because it seems to me that it is something of a dinosaur. I feel that we should be able to do without it in most cases.

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Hi Catfish! Thank you for the reply. You helped validate my thoughts and feelings about the biopsy. I do not want to add gluten back in my diet just to have an uncomfortable medical procedure. I was not even aware of that part of it! We do sound very similar. Especiallly regarding the biopsy issue! I hope you continue to feel better.

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I opted to go only on inconclusive test results followed by a dietary challenge, and don't plan on getting a biopsy.

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Dietary improvements are a test in itself, also bcause you hve beeen gluten-free you would have to go back on gluten before you have tohe biopsy which is probably something you never want to to again, it is your body and you make the ddecesions whatever you feel is right is what you should do.

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I have three sons that tested positive. I opted not to do the biopsy for them since they tested positive for the endomysial antibody which is 98% accurate for celiac. I didn't want them to have to wait to feel better or go through the risks associated with biopsy.

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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