Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Should I Bother With Getting A Bioposy

Demelza

Recommended Posts

Demelza Newbie
Demelza
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

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.

guest134 Apprentice
guest134
Posted

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.

Gemini Experienced
Gemini
Posted

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.

1desperateladysaved Proficient
1desperateladysaved
Posted

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.

GottaSki Mentor
GottaSki
Posted

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 :)

Demelza Newbie
Demelza
Posted
  • Author

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

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)

Open Original Shared Link

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 :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.