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

Needing Some Clarity

ms-issippi

Recommended Posts

ms-issippi Newbie
ms-issippi
Posted

Hello, all. I'm very new but wanted to jump in with a question that's a little time-sensitive.

 

My 6-year-old son has been officially diagnosed with "short stature" since he was three years old. Basically, he was of average height and weight until he was about 18 months old and then just stopped growing. I took him to an endocrinologist in 2011 and all of his bloodwork came back normal, including a celiac panel. He's been going back for follow-up appointments since then, and because he was hitting the minimal-required-growth rate of 2.5" a year and clinging to his spot on the percentile chart (2.5th), his doctor was content. And really, so was I, despite the fact that his father and I are of average size (5'11" and 5'5").  

 

Then last October, after more than 20 years of thinking I just had a nervous stomach, I was biopsy-diagnosed with celiac disease. With this information, I'm looking at my son's lack of growth in a new light, and at his annual endocrinologist follow-up, I mentioned this change. They ran the celiac panel and other tests, and the doctor feels everything came back normal, but I'm not as convinced. HIs vitamin was just below normal, which seems odd for a kid who drinks milk all day and has been outside all summer. He was also just below the low end of normal prealbumin. His thyroid function was iffy as well (edge of normal; she wants to retest in 4 months). 

 

So my simplest question is: now what do I do? I'm sure the most logical answer is to put him on a gluten-free diet, but there are a couple complicating factors:

1) His father and I share custody, so his dad would have to be totally on-board and able to maintain the requirements.

2) I live in a house with 8 other people (2 other adults and 5 other kids), so it would be really hard to keep him away from "bad" food.

 

In light of these, I feel like I really need to know FOR SURE if he has celiac, even though I know not everyone even gets that answer. Is there any intermediate step between here and endoscopy, other than a gluten-free diet?

 

 

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Hi, and welcome.

If you are planning to have the endoscopy with biopsy for diagnosis, DO NOT go on the gluten-free diet yet. You must be eating gluten on a regular basis for the test to be accurate. If you have been gluten-free for any significant time, there is a high likelihood of a false negative.

In the meantime, I don't know of any intermediate step. Others may disagree, but cutting back to "just" one slice of bread a day won't make any difference. That one slice still has massive gluten content.

Link to comment
Share on other sites
ms-issippi Newbie
ms-issippi
  • Author
Posted

Thanks, Peter, I appreciate the welcome and input.

 

I forgot to mention that at this last check-up my son's weight had dropped down the charts, from about the 15th percentile to the 5th, despite no major diet or appetite changes. So that's another red flag for me. 

Link to comment
Share on other sites
tommysmommy Newbie
tommysmommy
Posted

Sure sounds like you are on to your answer. I'd seek a second opinion with a pediatric gastroenterologist. Like many others, my family's experience with diagnosis was not an easy one. Once you've exhausted the medical route, you may want to try an elimination diet and see if it makes a difference...Keep in mind, even if celiac is negative, gluten-intolerance can have many of the same symptoms as celiac. It's really challenging at first, especially when coordinating households but the benefits outweigh the challenges if it makes him healthier.

Link to comment
Share on other sites
frieze Community Regular
frieze
Posted

Post his lab work here...perhaps we can help.

Thanks, Peter, I appreciate the welcome and input.

 

I forgot to mention that at this last check-up my son's weight had dropped down the charts, from about the 15th percentile to the 5th, despite no major diet or appetite changes. So that's another red flag for me. 

Link to comment
Share on other sites
ms-issippi Newbie
ms-issippi
  • Author
Posted

Flickr won't give me a direct .webp link, so I hope embedding the image links will work ...

 

This is his celiac panel: 

 

Open Original Shared Link
Open Original Shared Link by Open Original Shared Link, on Flickr

 

 

This is his whole workup:

 

Open Original Shared Link
Open Original Shared Link by Open Original Shared Link, on Flickr

 

Open Original Shared Link
Open Original Shared Link by Open Original Shared Link, on Flickr

 

 

Because I was biopsy-diagnosed, I'm not as familiar with the bloodwork idiosyncrasies. The only oddity that ever showed up on mine was that I was anemic. 

Link to comment
Share on other sites

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

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

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

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

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

      Waiting for urgent referral.

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

      Waiting for urgent referral.

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

      Joint swelling when ill even on gluten-free diet

      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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,066
    • Most Online (within 30 mins)
      7,748
    Danyelhack
    Newest Member
    Danyelhack
    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
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

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

      By Nacina · Posted

      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
      Waiting for urgent referral.

      By trents · Posted

      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
      Waiting for urgent referral.

      By Fluka66 · Posted

      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
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      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...