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Blood Tests Positive..do I Really Need A Biopsy?


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57 replies to this topic

#46 Gemini

 
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Posted 06 December 2012 - 10:10 AM

I would just like to point out, that with any test there is always a possibility for a false positive. Be it due to a machine or human error. It is just really, really rare.


I agree. Why doctors say this is beyond me. Celiac is not rare but false positives, if they really exist, are rare indeed!
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#47 GottaSki

 
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Posted 06 December 2012 - 09:07 PM

I agree. Why doctors say this is beyond me. Celiac is not rare but false positives, if they really exist, are rare indeed!


Well said and very true indeed!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#48 nvsmom

 
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Posted 06 December 2012 - 09:43 PM

I was diagnosed with a positive ttg IgA and a positive EMA IgA... same tests that you had done. Those were good enough for me but it's a personal choice whether to pursue further testing.

Welcome to the club. Hope you feel well soon.
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#49 VeggieGal

 
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Posted 07 December 2012 - 12:06 AM

Thanks nvsmom.. looking forward to getting better!

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#50 VeggieGal

 
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Posted 08 December 2012 - 05:16 AM

Well I saw the consulant today and i asked if I really need the biopsy? He said unfortunately yes because we have to go through proper protocols. I asked if it is possible to not find anything on the biopsy even if i am celiac? He laughed and said yes there is a good chance the biopsy could not find anything depending on how long ive had celiac/if ive been consuming enough gluten/and where samples are taken. He told me not to worry because in the event of that happening he would become my advocate and dx me as celiac based on symptoms, history and blood results. (feel so relieved that whatever the biopsy outcome, he will dx me...just nervous of going through it now!).

He said I will need a bone density test? and is sending me for blood tests (B12 etc). And wants my close family to be celiac tested. He also said that whilst doing the biopsy they would check for lactose issues?

It was nice to have a doctor who listened and seemed thorough. He then said Have a very happy gluten-free Christmas !! :)
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#51 Gemini

 
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Posted 08 December 2012 - 05:01 PM

Well I saw the consulant today and i asked if I really need the biopsy? He said unfortunately yes because we have to go through proper protocols. I asked if it is possible to not find anything on the biopsy even if i am celiac? He laughed and said yes there is a good chance the biopsy could not find anything depending on how long ive had celiac/if ive been consuming enough gluten/and where samples are taken. He told me not to worry because in the event of that happening he would become my advocate and dx me as celiac based on symptoms, history and blood results. (feel so relieved that whatever the biopsy outcome, he will dx me...just nervous of going through it now!).

He said I will need a bone density test? and is sending me for blood tests (B12 etc). And wants my close family to be celiac tested. He also said that whilst doing the biopsy they would check for lactose issues?

It was nice to have a doctor who listened and seemed thorough. He then said Have a very happy gluten-free Christmas !! :)


OK....I don't mean to beat a dead horse here but if he is willing to diagnosis you even if the biopsy is negative, why don't they just do it now? Oy Vay......doctors! :blink:

Yes, get the bone density done. Celiacs have a high rate of osteoporosis but you may not be there yet. Even if you are, once you go gluten-free and start absorbing your calcium again, things can self correct over time. But it's good to know.

Even though I don't agree with their reasoning for a biopsy, it seems this doctor is well versed in all other aspects of obtaining a diagnosis and what other tests you need and that is good. He even knows that the biopsy can be negative with full blown Celiac.
That is a definite positive. Good luck and let us know the outcome! :)

BTW...good luck with the relatives. That can be more diffcult than getting a diagnosis!
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#52 GottaSki

 
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Posted 08 December 2012 - 06:01 PM

Yes, get the bone density done. Celiacs have a high rate of osteoporosis but you may not be there yet. Even if you are, once you go gluten-free and start absorbing your calcium again, things can self correct over time. But it's good to know.


Yes, it is wise to get the bone density -- mine was very bad for early forties when diagnosed -- this is one of the best improvements I've had over the last four years...from what I understand we replace our bones in about 5 years -- good food along with exercise will make a new stronger set :)

I second Gemini's good wishes -- relatives can me more frustrating than docs -- hope your transition goes smoothly -- if not come hang out here.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#53 VeggieGal

 
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Posted 09 December 2012 - 12:55 AM

Hi Gemini, yes its frustrating Ive still got to go through the motions of a biopsy especially with me being scared of further damage to vocal chord (he tried to assure me that the tube is a good 2" away from chords). I forgot to ask him if they could do a skin biopsy on my scalp instead..oh well I just want it over before christmas now.

Gemini/Gottaski, thanks its reassuring to know that if its not gone to far then bones can heal..must admit it was another worry with my dad having rheumatoid arthritus.

Yes I agree, my main struggle now will be my family..my dads already said he cant see the point getting tested (hes only 65 and could have another 20/30 years or so of feeling healthier..hes stubborn pffft!).
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#54 VeggieGal

 
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Posted 09 December 2012 - 01:01 AM

Do you think Its worth me asking for a scalp biopsy or shall I just be brave and get the normal biopsy over and done with being as itl be quicker ?
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#55 Celiac Mindwarp

 
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Posted 09 December 2012 - 02:39 AM

Sounds like a good doctor to me. I guess they sometimes have to cover their own backs but it is very good you will get your diagnosis in the end. There may be other useful info from the endoscopy. I found a small hiatus hernia which explains some of the reflux and was very relieved to find no other nasties going on.

Good luck with your Dad. My Mum is about the same age with a diagnosis of chronic fatigue syndrome, but sickness, D, migraines, exhaustion, disturbed sleep, multiple intolerances, brain fog and slurred speech look pretty familiar to me...

Can't help on the other test you mentioned

Best wishes
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#56 megsybeth

 
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Posted 09 December 2012 - 03:03 AM

Hi VeggieGal, Have you gone gluten free? I think your specialist sounds reasonable and experienced so there seems little risk of the endo being use to rule OUT celiac so I don't see why you shouldn't. I personally gave up gluten based on blood work. There wasn't a doubt to me that I would stay gluten free for life, especially after immediate improvement. BUT I'm having the endo done Wednesday (after two months off gluten). My GI told me that it takes a long time for the intestine to heal. She actually said I should stay gluten free and could probably take a few months to decide if I want to have endo done as well. For diagnostic purposes, the issues would not change that much.

I am having it done because it's covered and it gives me more information about what's going on. And, it's not rational, but I want to have biopsies in case of intestinal cancer. I know it's very rare, but I feel like my body has been neglected for so long. It's kind of an emotional need to check into everything.
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#57 VeggieGal

 
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Posted 09 December 2012 - 03:42 AM

Well il keep you updated on biopsy..I think youre right CMW, the biopsy may tell me other things and consultant did say theyd check for lactose issues.

I totally agree with you Megsybeth..best to check everything and know what youre dealing with. Although i wish my graves thyroid doctor had checked me for celiac years ago and it was routine over here if theres other auto-immune diseases. Im back eating the poisonous gluten stuff until after biopsy..I can't wait to start the process of healing

Anyway, I can deal with it now at least...will let you know my results soon :)
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#58 GottaSki

 
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Posted 09 December 2012 - 06:53 AM

Although i wish my graves thyroid doctor had checked me for celiac years ago and it was routine over here if theres other auto-immune diseases. Im back eating the poisonous gluten stuff until after biopsy..I can't wait to start the process of healing


Testing for Celiac Disease should done along side all blood tests for inflammation -- my first Rhuemy didn't believe my Celiac Disease could be responsible for any of my AI symptoms -- our doctors are capable of some great things, but sure need to go back to school to learn the connection between nutrition and autoimmune and gasto disorders!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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