Jump to content

  • 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):

Celiac, or simply gluten intolerance?

Love-Newt

Recommended Posts

Love-Newt Newbie
Love-Newt
Posted

Hi everyone, I'm new to this website and am confused as to my symptoms and some of my test results for celiac. Here's my story, sorry that it's kind of long. 

In May of 2014, , when I was 15 (I'm currently 17), I began having a really foggy brain. Unaware of my surroundings, getting confused easily, inability to focus, etc. This lasted for about a month, and after that I was having horrible respiratory problems. I'm a ballet dancer and I couldn't dance very much because of breathing problems and chest pain. This went on for a year with seeing different lung specialists, running lots of lung function tests, and taking all the asthma meds possible. Nothing ever worked, and after a lot of searching, I stumbled upon something suggesting going gluten free and seeing if that was causing my breathing problems. After 2 weeks of being gluten free, my symptoms were completely gone. I could breathe perfectly fine. I was gluten-free for a month when my Dr. suggested Celiac testing. I ate gluten for 2 weeks and did blood tests that came back negative. So I've been living as though I'm gluten intolerant since June/July 2015. I've become extremely sensitive to it. If my food touches too much gluten, and then I eat it, I have diarrhea, sometimes lasting up to a week of feeling sick. I've also had 2 stress fractures in my foot, and 1 fracture in my toe since June, and I think Celiac can lower bone density(?) Has anyone had similar symptoms? Should I get retested? I'd appreciate any advice I can get! Thanks :)

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

Celiac.com Sponsor (A8-M):


SLLRunner Enthusiast
SLLRunner
Posted

Welcome, Love-Newt!

First of all, since you are underage is/are your parent/parents involved in your health concerns? If you have not done so yet, please share your concerns with the adult(2) in your family.

Since you had been gluten free and then ate gluten for two weeks only prior to your blood test, you might have gotten a false negative. In order to have accurate blood tests for celiac, the guideline is to consume gluten for several weeks prior to the tests, and plenty of it.

My situation is a lot like yours, in that eating gluten for one month made me feel a whole lot better. My fatigue, bloated feeling, gas, gurling in my tummy, itching, and fatigue. I talked to my doctor about this and we decided that it would indeed be a good idea to test for celiac. She told me to eat plenty of gluten for a month prior to the blood testing, so I am now doing a gluten challenge. This means I eat my homemade bread, wheat cereal for breakfast, any no processed food that is gluten free.  My decision is that whether the tests come back negative or positive I will be eating gluten free after all testing is complete because of how much better I feel. 

As for you--are you willing to do a gluten challenge prior to blood testing and to eat plenty of gluten until all testing is complete? 

Also, do you have other food intolerance? It is common with those who have celiac to be intolerant to other foods, often lactose. About 15 years ago, I discovered lactose intolerance, and about five or six years ago, soy sensitivity.

 

Irene Joanne Explorer
Irene Joanne
Posted

Getting retested sounds like a great idea- yes celiac can lower bone density. You should get check for some deficiencies too- calcium, iron, vitamin D and B12 for sure. 

 

Love-Newt Newbie
Love-Newt
Posted
  • Author
15 hours ago, SLLRunner said:

Welcome, Love-Newt!

First of all, since you are underage is/are your parent/parents involved in your health concerns? If you have not done so yet, please share your concerns with the adult(2) in your family.

Since you had been gluten free and then ate gluten for two weeks only prior to your blood test, you might have gotten a false negative. In order to have accurate blood tests for celiac, the guideline is to consume gluten for several weeks prior to the tests, and plenty of it.

My situation is a lot like yours, in that eating gluten for one month made me feel a whole lot better. My fatigue, bloated feeling, gas, gurling in my tummy, itching, and fatigue. I talked to my doctor about this and we decided that it would indeed be a good idea to test for celiac. She told me to eat plenty of gluten for a month prior to the blood testing, so I am now doing a gluten challenge. This means I eat my homemade bread, wheat cereal for breakfast, any no processed food that is gluten free.  My decision is that whether the tests come back negative or positive I will be eating gluten free after all testing is complete because of how much better I feel. 

As for you--are you willing to do a gluten challenge prior to blood testing and to eat plenty of gluten until all testing is complete? 

Also, do you have other food intolerance? It is common with those who have celiac to be intolerant to other foods, often lactose. About 15 years ago, I discovered lactose intolerance, and about five or six years ago, soy sensitivity.

 

So my parents are involved in my health concerns. My mom more so than my dad. She's wanting me to start taking charge and talk to my doctor about my Celiac concerns myself, which is totally fair, since I know what I'm worried about more so than she does. I don't have any other food intolerances, as far as I know. 

I've been thinking about doing a gluten challenge, but I'm very busy right now with prepping for a dance show, school work, and working, that I don't really have time to feel sick while eating gluten for a month. I'm considering doing a gluten challenge this summer. I was just looking for opinions from other people who might've had a similar experience as me, and it seems like you have! Thank you for your tips and advice!!

Love-Newt Newbie
Love-Newt
Posted
  • Author
14 hours ago, Irene Joanne said:

Getting retested sounds like a great idea- yes celiac can lower bone density. You should get check for some deficiencies too- calcium, iron, vitamin D and B12 for sure. 

 

Thank you for your advice! I've been tested for vitamin D deficiency, and I'm not definciant, but my counts were on the very low end of the "normal" scale. 

SLLRunner Enthusiast
SLLRunner
Posted

Newt,

So glad you have the support of your mom in this, and that she is encouraging you to talk with the doctor! Believe me, a gluten challenge is no fun and a lot of people who have lived gluten free won't do it. I am just about ready to throw in the towel but will carry on. This is after being gluten free for only four weeks!

I am also considering food allergy testing as well, and have asked my doctor for a referral to an allergist. 

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...