Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Should I Bother With Getting A Bioposy
0

8 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

3

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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 :)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,644
    • Total Posts
      921,583
  • Topics

  • Posts

    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
    • Three years ago I lost about 40kgs (Aussie lol) by better diet & exercise. All was going great til I stopped losing. I upped my exercise but bizarrely started gaining weight. One night a week of not being able to sleep soon became two, then virtually every night with either 1-2hrs tops or none at all. These weird symptoms started about two years ago, becoming worse in say, the last 9mnths. Then I started to get diarrhea. Occasionally then weirdly 2-3 days with multiple occurences then a day or two with nothing, then back to loose & offensive. My GP ran tests, including the TTga (hope that's  right) antibody blood test. Negative so he tells me that's not it. After 9mnths of this he shrugs and says, "I don't know what it is I've run out of ideas what ideas do you have?" Finally refers me to a gastrointerogist.  Private, of course and can't really afford it but we (my fiance and I) go. Stools and blood samples are ordered, basically bye, see you in a month. I have looked my symptoms up and they seem to point to Celiac. Today we went back. I have been having bloated stomach, sore back and limbs,  lovely burps, constant urination and crushing anxiety attacks folowed by depression (which I have never had before in my life). Admitted over the last weekend I didn't sleep for two and a half days and found myself hallucinating and crying to just be able to sleep. Mr fancy pants gastrointerogist says," Hey great news, the stools samples rule out parasites and Crohns!" I tell him how excrutiating the last month has been to which he replies, "It's not Celiac disease, (points at negative blood test results). Celiac doesnt present with diarrhea, anxiety and frquent urination all together." I also had a fecal occult blood test which showed positive & notes say are maybe due to a lower gi bleed, and a ct scan that says shows some damage which, in their words, could be due to a condition such as Celiac disease. He has booked me for a double scope as the next step, has a few ideas what it could be (won't tell me because he doesn't want me to be 'anxious'). Told me to consider that all these symptoms could be me just worrying and being anxious. Told him when this started I was not worried about anything, shrugged and said, It could stil have happened, hey, sometimes we never find out what causes it and your just stuck with diarrhea forever." Then as I was leaving he slapped me on the back and said, "Don't worry so much, see you soon." I need to have the scopes done but is it me or are the things I was told today not true?  I would honestly love it not to be Celiac disease but could he be wrong?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,651
    • Most Online
      3,093

    Newest Member
    Kricket73
    Joined