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Should I Bother With Getting A Bioposy


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7 replies to this topic

#1 Demelza

 
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Posted 11 October 2012 - 11:28 PM

I have been living with many many symptoms of celiacs for 3 years now since I had my son. I first went to my doctor about my symptoms 2.5 years ago and she brought up celiacs and did the blood test. My IgA levels were way low and she did a 2nd blood test and the results were the same. She said it was impossible that my symptoms were from celiacs and left it at that.

Now 2.5 years later and I was feeling worse then ever so I decided to cut out gluten and after a week felt way better. My bloating went down, I was less tired, and my burning rashes on varies parts of my body hurt a bit less, but then I had soy sauce and got sick all over again and went to see my new doctor. She did another blood test and my IgA levels are still low, but she said it is highly likely that celiacs is the culprit due to my stomach issues, iron levels, and burning rashes. She referred me to a GI doctor but they cannot even see me for a 1st visit until the end of January.

Now my question is should I bother with getting a biopsy or continue on being gluten free? I was also considering switching doctors again now that I live in Chicago for ones that are with UIC and their celiacs center.

Any input would be great. Thanks
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#2 nvsmom

 
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Posted 12 October 2012 - 05:53 AM

Is it ttg IgA or EMA IgA levels that are low? Doctors often run a serum IgA to make sure we have adequate levels of IgA in our bodies to properly test for ttg IgA or EMA (IgA). There is a small portion of the population (I *think* it was about 5% - can't quite remember) who are deficient in IgA and will test negative for celiac even when positive. If she just tested total IgA levels, she has not actually tested for celiac yet, but you would test negative for it (on the most common tests) in that situation. I don't know the other tests well (they were unavailable to me) but I think they are DMG Igg and ttg IGg; you could check those.

Plus if you are gluten-free or gluten-lite, that could cause negative tests too.

If you do decide to pursue a biopsy, and many around here were diagnosed on a biopsy alone, I believe you need to be eating gluten for 6-12 weeks. You would have to stat about now for a January appointment. I also heard it advised to ensure you get as many biopsied spots as possible; I think more than 6 is advised. Apparently that lessens the possibility of missing the damage. I never had a biopsy so I'm not as sure about all this.

If you can go gluten-free without a diagnosis, I would advise you to stay gluten-free and skip the biopsy. 2-3 months is a long time to eat gluten if it makes you unwell. I would have had a tough time staying gluten-free without my diagnosis though so I understand your problem.

Best wishes in whatever you decide to do. i hope you feel well soon.
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#3 guest134

 
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Posted 12 October 2012 - 06:17 AM

It depends on the type of person you are. I think I may have celiacs but there is no way I would diagnose it without a biopsy, for me I need to know beyond a doubt that it is what I have. How annoying would it be if you cut out gluten for years to find out there was another source of your problem? That is my opinion, there are people on this board that favour improvement of symptoms over medical diagnosis but that can be flawed as studies have shown most of the healthy population would improve on a gluten free diet.

There is no doubt that gluten is bad for everyone in general however not to the degree that you would be putting yourself at risk for continuing to eat it, unless you have celiacs of course.
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#4 Gemini

 
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Posted 12 October 2012 - 06:54 PM

It depends on the type of person you are. I think I may have celiacs but there is no way I would diagnose it without a biopsy, for me I need to know beyond a doubt that it is what I have. How annoying would it be if you cut out gluten for years to find out there was another source of your problem? That is my opinion, there are people on this board that favour improvement of symptoms over medical diagnosis but that can be flawed as studies have shown most of the healthy population would improve on a gluten free diet.

There is no doubt that gluten is bad for everyone in general however not to the degree that you would be putting yourself at risk for continuing to eat it, unless you have celiacs of course.


What studies have shown that most of the healthy, non-Celiac population would improve on a gluten-free diet? Anyone without Celiac Disease would not show any improvement on a gluten-free diet, unless they do indeed have Celiac. I'd be interested in seeing these studies.

While I was diagnosed through blood work and declined the biopsy, many people here have tried relentlessly to obtain a "medical" diagnosis, for all it's worth. They were not helped by the medical community except for those fortunate ones who had progressive doctors who didn't need to "see" it on a biopsy to figure it out. There are many other ways to diagnose Celiac besides a biopsy. Dietary trials, along with resolution of symptoms,
coupled with gene testing and blood work for deficiencies are extremely useful tools.
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#5 1desperateladysaved

 
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Posted 12 October 2012 - 07:15 PM

Is it ttg IgA or EMA IgA levels that are low? Doctors often run a serum IgA to make sure we have adequate levels of IgA in our bodies to properly test for ttg IgA or EMA (IgA). There is a small portion of the population (I *think* it was about 5% - can't quite remember) who are deficient in IgA and will test negative for celiac even when positive. If she just tested total IgA levels, she has not actually tested for celiac yet, but you would test negative for it (on the most common tests) in that situation. I don't know the other tests well (they were unavailable to me) but I think they are DMG Igg and ttg IGg; you could check those

Thanks. I need to do this.
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#6 GottaSki

 
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Posted 13 October 2012 - 12:56 PM

I was also considering switching doctors again now that I live in Chicago for ones that are with UIC and their celiacs center.

Being seen by UoC gets my vote if you are living in Chicago.

If you have only been gluten-free for a week, I suggest continuing to eat gluten until you can be seen. You don't need to overdo it - a slice of gluten containing bread a day is sufficient. If ingesting that much makes you extremely ill, you should consider cutting it out until you are sure that you want to move forward with testing.

Good luck to you :)
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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 :)


#7 Demelza

 
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Posted 15 October 2012 - 08:49 AM

thanks everyone. I have been gluten free for 7 weeks now and I'm not sure about the blood work, both doctors didn't really explain too much to me. I'm just call UIC medical center since my doctors through North Western are not treating this as I would like. I was also told it I have DH tha rash can be biopsied. I have what is believed to be that on my scalp and it is still clearing up too. My desire to eat a drop of gluten is zero but I will talk to the new doctors and see
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#8 GottaSki

 
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Posted 15 October 2012 - 09:09 AM

I'm just call UIC medical center since my doctors through North Western are not treating this as I would like.

Just wanted to clarify that I was recommending:

The University of Chicago's Celiac Center (UoC)
http://www.cureceliacdisease.org/

I don't know if The University of Illinois at Chicago (UIC) also has a good Celiac Center.

Good luck to you - I hope you are feeling better soon :)
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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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