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

Gluten Free Diet Before Endoscopy


owlettkh

Recommended Posts

owlettkh Newbie

Im a newbie. I had my gallbladder removed in Jan 07. In the months that followed I started to have a return of abdominal pain along with bloating, loose BMs, gas, weight loss, felt hungry despite eating, numbness and pins and needles tingling in my feet/legs and hands/arms, easy bruising etc. I followed up with my PCP after months of this getting increasingly worse. He intially thought that this may be due to scar tissue constricting my bile duct, but when I went to see him at the end of May 07 he told me he thought it might be Celiac Disease and to test his theory he put me on a gluten free diet. I was on the diet for a month and the symptoms started to improve (except for the numbness/tingling). On July 24th 07, I finally went to see a GI. He scheduled me for blood panels that day and then for and EGD two days later. When I expressed my concern about my gluten free diet for the past nearly 2 months he said to load up on gluten for the 2 days before and I should be fine. Today I had the EGD, but I am still unsure about whether I had enough gluten (i ate 6 slices of bread both days) to get accurately results. The endoscope pics look normal and I am still waiting on biopsy and blood test results. Is it even possible to get accurate results? What should my next step be? my GI told me to go back to the gluten free diet, but I am wondering if i should continue to eat gluten and schedule another EGD? I know that I feel better on the gluten free diet (though it seemed that I was starting to develop a lactose intolerance) but I would like to get an answer to what exactly is wrong even if it means continuing to eat gluten.

Thanks for any help and advice you can offer!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Guest j_mommy

Personally I would not trust the results of either the biopsy or blood tests. Especially if you've been gluten-free for 2 months.

Alot of people have problems with lactose before and some once they go gluten-free.

If it were me and this is personal choice, if they come back negative, then I would do a gluten diet and redo blood tests in a couple of weeks. I wouldn't want to go through two endo's so close and the cost is expensive. I would wait to decide on another endo until you get blood work redone once you eat gluten for awhile. The jury is out on how long you should eat gluten, safe bet is atleast two weeks...some say two months.

But I do not truly believe two days of eating gluten is enough after being gluten-free for two months! But who knows....you could still get a positive read!

Let us know what the results are!

Link to comment
Share on other sites
cruelshoes Enthusiast

After 2 months gluten-free, there is no way that 2 days of gluten would be a long enough challenge. Here is some information you might find helpful. I hilighted the portion in red that seems to most closely apply to your situation. If I were in your shoes, I would be asking myself how important the diagnosis was to me. Would you be willing to remain 100% gluten-free for the rest of your life without the bloodwork/biopsy if that's what your trial gluten-free diet seemed to indicate? If the answer is no, then do the gluten challenge and repeat the biopsy at a later time. If you can commit yourself without looking back without the official diagnosis, then go for it. I know myself well enough to know that I need to see things in black and white before committing, so I did do the bloodwork and biopsy.

Open Original Shared Link

How long do I need to be eating gluten before I am tested for celiac disease?

This is not an easy question to answer. Most people believe, or are told that they need to eat gluten for a few days (or up to a week) before a blood test or a biopsy, and this is incorrect. The true answer depends on how long the individual has been avoiding gluten. How much gluten to eat depends on the age of the individual who is being tested. The information provided here is a general rule, there are many specifics that come into play, so its best to talk with a knowledgable physician about your particular situation.

First: If a patient has avoided gluten for six to 12 months (or more) it is advisable to consider an HLA gene test before a gluten challenge. The HLA gene test will help determine if the patient is even in the risk group for celiac disease. (Only 1/3 of the US population have the genes for celiac disease.) After 6-12 months, it can be difficult to obtain a diagnosis of celiac disease after a gluten challenge, which is why this step is advisable.

Patients who have been on a gluten free diet for less than six months can consider a gluten challenge under a physician's supervision. A challenge would typically require an adult or a child to eat some gluten for four to eight weeks. For some, a twelve week challenge could be required but no challenge should last more than 12 weeks in children. The patient would eat a specified amount of gluten every day.

Many patients are concerned about participating in a challenge. Medical research shows that a limited challenge of this sort provides a greater medical benefit when it leads to a correct diagnosis of celiac disease. The challenge would need to be maintained if a positive antibody test result is received, because the biopsy procedure also depends on the presence of an autoimmune response.

For children, eating a saltine cracker each day would be enough gluten to conduct a challenge and for adults, a slice of bread a day would be adequate. The challenge would need to occur for six to eight weeks before the test in order for it to be accurate. Accordingly, we will not be able to register individuals for the screening who cannot meet this criteria, should they wish to be tested after following the diet.

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...