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How Important Is The Biopsy?
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I am FINALLY meeting with a GI Dr. on Tues after waiting over a month to get in.

all 3 of my blood tests came back positive for celiac. My meeting Tuesday is just a consultation - they wouldnt even let me schedule the biopsy until I meet with him. I am so worried that it might take another month to get the biopsy done and I am getting sicker by the day. The past 3 weeks have been terrible, my stomach keeps gettting bigger and bigger (I actually look pregnant), I go between terrible consipation and then to diarehha and wake up at night with horrible pains in lower intestines. I guess my question is, if they can't get me in any time soon should I just say forget the biopsy and go with the blood test diagnosis? Could anything else make the the labs posative other than celiac? I am hating that I have to eat gluten and knowing that I could feel so much better. I feel like my life is on hold and I am so scared that something else could be wrong due to the disstention and horrible pains. My numbers on the blood work were all very high (IGA was 144 and my IGG was 111 and the other one was positive although I don't know the #'s also my cholesteral and iron were very low - 150 and 8). I am trying to prepare myself for the possibility that I might be told I have to eat gluten for another month or longer and I am wondereing if I would be safe saying forget it. Can these numbers mean anything else? I am so depressed and scared right now. I didnt really have many syptoms until recently but I feel like I keep gettting sicker by the day. Any advice would be much appreciated!

Thanks!

Stephanie

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Hi Stephanie, I am sorry you feel bad and are still going through the diagnosis process. It can be hard to make decisions about our health especially when we feel bad and just want to feel better. We trust our doctors and what they recommend but if it were me and my blood tests came back positive I would not go through with the biopsy, I would immediately begin the gluten-free diet. One thing to think about is sometimes blood test can be positive and biopsies can be negative and vice versa, so just keep that in mind.

Feel better soon :rolleyes: Take care

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It's a personal decision. I am not biopsy diagnosed, but my doctor was willing to go on inconclusive blood tests and positive dietary challenge. But it's really a personal decision. You might have very little intestinal damage (though I'd doubt it from the low iron count), but at the least the blood tests say your immune system reacts to gluten.

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Going through the diagnosis process is not fun. It took me around 3 1/2 months of hell before I was confirmed to have Celiac Disease. But I also had a colonoscopy and was told I had some irritation in my colon and that I might have Crohns as well as Celiac. Turns out that I do have a mild case of Crohns. So I guess I'm saying in my case it was worth to get the biopsy. If you choose to go with a biopsy make sure that you get a colonoscopy at the same time. All these intestinal disorders have similar symptoms so the best way is to go in and check them all out.

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Weighing in on the "skip the biopsy" side! With only positive antigliadin, we reluctantly went with the doc's recommendation and did the biopsy. ( I was ready to try gluten-free seeing obvious reactions to pastas, pancakes) It postponed getting by daughter healthy by nearly 3 months.

After waiting for an appointment then the biopsy. We were told everything was completely within normal range after the biopsy. She got worse and I decided to go gluten-free without the doc. It took only 3 days to see improvement - solid stools and sleeping much better. Now a month later, I wish I had skipped the anxiety of the biopsy and the $6000+, and still coming, in medical bills that thankfully, our insurance is paying 80%.

I say try your own test with a gluten-free diet. You can always go back to the doc for tests if you don't improve.

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Hi Stephanie

I'd vote for 'get the diagnosis'. Several on the board have gotten relatively quick tests from enterolab and had the results accepted by their GI/GP, if your Dr won't confirm the diagnosis just with the blood test, ask if he/she would accept this.

I don't have that option living in Canada. I had positive blood so went gluten-free only (I felt better than I ever have in my life, all symptoms disappeared, all anemias turned around) to have the GI tell me 8 months later they wouldn't confirm celiac without the biopsy. I want the formal, medical diagnosis so Dr's will keep an eye out for associated illness, my children will get tested, etc.

I'm now back on gluten in preparation for the biopsy and am more sick than I was before. I know it's not fun but my opinion would be to get the diagnosis (unless you don't care and it's unbareable, in which case try to find a more sympathetic Dr and go gluten-free).

If your GI insists on a scope, there may be options. I'm paying to go to a higher end private clinic just so I don't have to wait the 9 months for the appt (I'm in Canada, public health care takes longer).

Best of luck. Fingers crossed.

jen

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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