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

Emma Update

Guest tracey and emma

By Guest tracey and emma
in Parents, Friends and Loved Ones of Celiacs

Recommended Posts

Guest tracey and emma
Guest tracey and emma
Posted

Hi everyone i am sorry i do not seem to have a lot of time so do not come on line very oftern!

Since christmas emma has been completely Gluten free. so for about 10-11weeks now. She had no significant signs of celiac on her endoscopy that they could see to the eye, except for the biopsys that came back with limphodes being a small problem in her intestene, which lead them to belive she possibly had the beginings of celiac disease.

did a blood test to prove negetive but our consultan says that the test is 100% correct even for the beginings of celiac disease.

But ........after being on this diet for 6weeks no change at all and then a few weeks ago she starts to tolerate milk at a higher volume through the G-tube, and at an increased rate per-hour. which is amasing.

and now she is putting on weigh faster than she has ever done. and looking really good.

diohrea that she had, has stopped and except for one server episoded of retching 3 weeks ago where she blacked out, and went blue she is a differanct child.

but like i said bloods were negative. have any of you guys come across a simular thing and course of events? or is this unusual???? and does it have to be celiac disease or could she just have a wheat allergie or are they the same thing?

thanks for your help

tracey

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

i am assuming you mean lymphocytes? that is all that showed in one of my girls biopsies---but she had positive blood work.

christine

lovemyboy Rookie
lovemyboy
Posted
Hi everyone i am sorry i do not seem to have a lot of time so do not come on line very oftern!

Since christmas emma has been completely Gluten free. so for about 10-11weeks now. She had no significant signs of celiac on her endoscopy that they could see to the eye, except for the biopsys that came back with limphodes being a small problem in her intestene, which lead them to belive she possibly had the beginings of celiac disease.

did a blood test to prove negetive but our consultan says that the test is 100% correct even for the beginings of celiac disease.

But ........after being on this diet for 6weeks no change at all and then a few weeks ago she starts to tolerate milk at a higher volume through the G-tube, and at an increased rate per-hour. which is amasing.

and now she is putting on weigh faster than she has ever done. and looking really good.

diohrea that she had, has stopped and except for one server episoded of retching 3 weeks ago where she blacked out, and went blue she is a differanct child.

but like i said bloods were negative. have any of you guys come across a simular thing and course of events? or is this unusual???? and does it have to be celiac disease or could she just have a wheat allergie or are they the same thing?

thanks for your help

tracey

Hi

Our blood work was negative and we took our son off anyway and he has put on lots of weight and seems to be eating alot better. Not sure which type he had though. Sounds like I would keep her on the diet if she has improved that much.

key Contributor
key
Posted

Blood work is not accurate in small children. My son had negative blood work and responded massively to the diet! So if she is doing great, don't listen to what they are telling you. LIsten and look with your own eyes at how well your Emma is doing! Isn't that proof. It was with our son!

Monica

Becky6 Enthusiast
Becky6
Posted

My daughters blood work was neg but she has turned around 100% from being gluten-free since dec 1st.

Nic Collaborator
Nic
Posted

My son also had positive blood work but only showed lymphcytes in biopsy. He has been gluten free for 10 months. I just got done telling my sister on the phone that I think he is getting a bit chubby. Big turn around from last year .

taweavmo3 Enthusiast
taweavmo3
Posted

My two boys (2 and 7) both tested negative, but have responded well to the diet. My youngest was very lactose intolerant before, if he had even traces of dairy he would have diarrhea and awful diaper rashes. Now he's been gluten free for around 6 weeks, and can tolerate all the diary he can eat! I do have a daughter also, 4, who did test positive on both blood work and biopsy.....but now that I've seen the positive results in my boys who tested negative, I don't really put much stock in the current testing for now.

If Emma is thriving.......just keep her on the diet. Don't let doctors tell you to do anything different. I've heard our ped ask why I would "put my kids through that" if they weren't really sick, like it's some sort of cruel punishment. Alot of doctors don't really have a clue what it's like to live gluten-free, it's really not that bad. And there is still LOADS of gluten-free junk the kids can have, so they aren't really deprived of kid friendly food. My 7 year old actually made the choice himself to go on the diet, just based on how much better he felt. That spoke volumes to me!

Take care, and I hope Emma continues to thrive!

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

the blood tests are extremely unreliable in children and for the Dr. to tell you that a negative result was 100% accurate is a load of crap.

My daughter's blood test was negative, she did not have the biopsy, but had a miraculous turn around on the gluten-free diet. I am convinced she is Celiac and so was her pediatrician. Trust your instincts that she responds very well to the gluten-free diet and that is all you need to know. Don't listen to those Dr.s that tell you she can't have Celiac because of a blood test. They are just ignorant. Sorry, but it's true. There are sooooo many stories of the blood tests being innacurate in children (and even adults) they can only be 100% IF they are positive for it. Not if they are negative. They can miss the early stages, they aren't trained to look for the early stages. They are trained that Celiac is extremely rare, they will probably NEVER see it in their practice, and they are only trained to look for the final stages of the disease where so much damage has been done to the intestines that the body is not absorbing ANY nutrients. Also, a lot of Dr.s will refuse to even consider Celiac, especially if they already have it in their minds that there is either something else wrong that requires surgery or medication OR they are convinced it's all in the patient's head (or the parent's).

Glad to hear she is doing better. Give it time, keep her 100% gluten-free, and I'm sure you will see some miracles! My daughter is now a thriving happy and healthy soon to be six year old. She does not feel deprived of any goodies or yummy food.

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 RDLiberty's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Toothpaste question.

      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune r...
    2. Scott Adams
      - Scott Adams replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Probiotics

      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat...
    3. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Celiac attack confusion and anxiety

      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in...
    4. Scott Adams
      - Scott Adams replied to nanny marley's topic in Related Issues & Disorders
      2

      Manitol and mri

      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a...
    5. Scott Adams
      - Scott Adams replied to bombier's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      KATZ CINNAMON DONUTS

      I'm so sorry to hear you're feeling so unwell, and I hope you recover quickly. While your personal experience of getting sick is absolutely valid, there are a few key inaccuracies in the information you've shared that are important to clarify for anyone else reading. The central misunderstanding is about oats and gliadin. Oats do not contain gliadin...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,789
    • Most Online (within 30 mins)
      7,748
    klholt
    Newest Member
    klholt
    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
      Toothpaste question.

      By Scott Adams · Posted

      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune reaction in celiac disease. Hydrated silica and silicon dioxide are minerals, chemically inert compounds of silicon and oxygen, and are completely unrelated to gluten proteins. They are widely used as abrasives in toothpaste and anti-caking agents in food powders because they are stable and non-reactive. While any individual can have a unique sensitivity to any substance, there is no mechanism by which these silica compounds would mimic gluten or exacerbate celiac disease. Your diligence in using a certified gluten-free toothpaste is the correct and most important step, as it eliminates the risk of cross-contamination with wheat-derived ingredients like starch. Based on current scientific understanding, the hydrated silica in your toothpaste is not an issue for your celiac management.
    • Scott Adams
      Probiotics

      By Scott Adams · Posted

      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat-derived starches or are produced in facilities that handle gluten, posing a cross-contamination risk. Furthermore, the specific strains of bacteria can matter; some research suggests strains like Lactobacillus and Bifidobacterium may be beneficial, but individual responses vary greatly. Because the supplement industry is not tightly regulated, choosing a reputable brand that undergoes third-party testing for purity and potency is key. 
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in revolt. The severe pain, neuropathy, muscle and jaw tension, and intense anxiety and confusion are all potential manifestations of this body-wide inflammatory and autoimmune response. It's a well-documented phenomenon that a celiac attack can provoke a significant neurological and psychological component, including "brain fog," disorientation, and panic-level anxiety. While your first step should always be to meticulously re-check all foods, medications, and even cross-contamination sources, it's also possible that a previously safe product has changed its formula or that you encountered a hidden source. 
    • Scott Adams
      Manitol and mri

      By Scott Adams · Posted

      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a clear image by distending the bowel and stimulating a bowel movement. While the names sound similar, the function and formulation are very different from a small-quantity sweetener. That said, your concern is valid and should be addressed with your healthcare team. The most important step you can take is to call the MRI department or your referring doctor directly. Explain your specific reaction to sweeteners in detail—mentioning the throat and ear sensations is crucial as it could indicate a more significant sensitivity. They can confirm the exact drink they use, check its full ingredient list for you, and determine if an alternative prep is available or if pre-medication is recommended to ensure your safety and comfort during the procedure.
    • Scott Adams
      KATZ CINNAMON DONUTS

      By Scott Adams · Posted

      I'm so sorry to hear you're feeling so unwell, and I hope you recover quickly. While your personal experience of getting sick is absolutely valid, there are a few key inaccuracies in the information you've shared that are important to clarify for anyone else reading. The central misunderstanding is about oats and gliadin. Oats do not contain gliadin; gliadin is a specific protein found exclusively in wheat. The protein in oats is called avenin, which is similar in structure but is a completely different compound. For the vast majority of people with celiac disease or gluten sensitivity, pure, uncontaminated oats are safe. The reason "gluten-free" oats are necessary is because regular oats are frequently cross-contaminated with wheat, barley, or rye during growing and processing. Certified gluten-free oats are tested to ensure they are free from this cross-contamination. It's possible you may have a separate and less common sensitivity to avenin in oats themselves, or the illness could have been caused by another ingredient or even an unrelated virus. Given your expertise and severe reaction, it would be a good idea to discuss this with a doctor to pinpoint the exact cause. This article, and the comments below it, may be helpful:    
×
×
  • 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.