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

How Important Is The Biopsy?

kaysol

Recommended Posts

kaysol Rookie
kaysol
Posted

I am FINALLY meeting with a GI Dr. on Tues after waiting over a month to get in.

all 3 of my blood tests came back positive for celiac. My meeting Tuesday is just a consultation - they wouldnt even let me schedule the biopsy until I meet with him. I am so worried that it might take another month to get the biopsy done and I am getting sicker by the day. The past 3 weeks have been terrible, my stomach keeps gettting bigger and bigger (I actually look pregnant), I go between terrible consipation and then to diarehha and wake up at night with horrible pains in lower intestines. I guess my question is, if they can't get me in any time soon should I just say forget the biopsy and go with the blood test diagnosis? Could anything else make the the labs posative other than celiac? I am hating that I have to eat gluten and knowing that I could feel so much better. I feel like my life is on hold and I am so scared that something else could be wrong due to the disstention and horrible pains. My numbers on the blood work were all very high (IGA was 144 and my IGG was 111 and the other one was positive although I don't know the #'s also my cholesteral and iron were very low - 150 and 8). I am trying to prepare myself for the possibility that I might be told I have to eat gluten for another month or longer and I am wondereing if I would be safe saying forget it. Can these numbers mean anything else? I am so depressed and scared right now. I didnt really have many syptoms until recently but I feel like I keep gettting sicker by the day. Any advice would be much appreciated!

Thanks!

Stephanie

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

Celiac.com Sponsor (A8-M):


Guest jhmom
Guest jhmom
Posted

Hi Stephanie, I am sorry you feel bad and are still going through the diagnosis process. It can be hard to make decisions about our health especially when we feel bad and just want to feel better. We trust our doctors and what they recommend but if it were me and my blood tests came back positive I would not go through with the biopsy, I would immediately begin the gluten-free diet. One thing to think about is sometimes blood test can be positive and biopsies can be negative and vice versa, so just keep that in mind.

Feel better soon :rolleyes: Take care

tarnalberry Community Regular
tarnalberry
Posted

It's a personal decision. I am not biopsy diagnosed, but my doctor was willing to go on inconclusive blood tests and positive dietary challenge. But it's really a personal decision. You might have very little intestinal damage (though I'd doubt it from the low iron count), but at the least the blood tests say your immune system reacts to gluten.

SteveW Rookie
SteveW
Posted

Going through the diagnosis process is not fun. It took me around 3 1/2 months of hell before I was confirmed to have Celiac Disease. But I also had a colonoscopy and was told I had some irritation in my colon and that I might have Crohns as well as Celiac. Turns out that I do have a mild case of Crohns. So I guess I'm saying in my case it was worth to get the biopsy. If you choose to go with a biopsy make sure that you get a colonoscopy at the same time. All these intestinal disorders have similar symptoms so the best way is to go in and check them all out.

CarolynM Newbie
CarolynM
Posted

Weighing in on the "skip the biopsy" side! With only positive antigliadin, we reluctantly went with the doc's recommendation and did the biopsy. ( I was ready to try gluten-free seeing obvious reactions to pastas, pancakes) It postponed getting by daughter healthy by nearly 3 months.

After waiting for an appointment then the biopsy. We were told everything was completely within normal range after the biopsy. She got worse and I decided to go gluten-free without the doc. It took only 3 days to see improvement - solid stools and sleeping much better. Now a month later, I wish I had skipped the anxiety of the biopsy and the $6000+, and still coming, in medical bills that thankfully, our insurance is paying 80%.

I say try your own test with a gluten-free diet. You can always go back to the doc for tests if you don't improve.

ryeanddiet Rookie
ryeanddiet
Posted

Hi Stephanie

I'd vote for 'get the diagnosis'. Several on the board have gotten relatively quick tests from enterolab and had the results accepted by their GI/GP, if your Dr won't confirm the diagnosis just with the blood test, ask if he/she would accept this.

I don't have that option living in Canada. I had positive blood so went gluten-free only (I felt better than I ever have in my life, all symptoms disappeared, all anemias turned around) to have the GI tell me 8 months later they wouldn't confirm celiac without the biopsy. I want the formal, medical diagnosis so Dr's will keep an eye out for associated illness, my children will get tested, etc.

I'm now back on gluten in preparation for the biopsy and am more sick than I was before. I know it's not fun but my opinion would be to get the diagnosis (unless you don't care and it's unbareable, in which case try to find a more sympathetic Dr and go gluten-free).

If your GI insists on a scope, there may be options. I'm paying to go to a higher end private clinic just so I don't have to wait the 9 months for the appt (I'm in Canada, public health care takes longer).

Best of luck. Fingers crossed.

jen

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.