Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Should I Bother With Getting A Bioposy


Demelza

Recommended Posts

Demelza Newbie

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

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

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.

Link to comment
Share on other sites
guest134 Apprentice

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.

Link to comment
Share on other sites
Gemini Experienced

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.

Link to comment
Share on other sites
1desperateladysaved Proficient

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.

Link to comment
Share on other sites
GottaSki Mentor

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 :)

Link to comment
Share on other sites
Demelza Newbie

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

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

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 :)

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    2. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,065
    • Most Online (within 30 mins)
      7,748

    Deebatger
    Newest Member
    Deebatger
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
×
×
  • Create New...