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

Difficulty being diagnosed with celiac disease?

Sambozzi
 Share

Recommended Posts

Sambozzi Newbie
Sambozzi
Posted

I’ve had a bad relationship with gluten my entire life. I had terrible gastrointestinal issues as a child when not as much was known about celiac disease. After many tests and doctors scratching their heads, my mom finally took me to a natural doctor who suggested I stop eating wheat. My mom was perplexed when most of my symptoms went away fairly quickly when I was switched off wheat. But in high school I went back to pretty much eating what I wanted, but had no idea I was slowly getting sicker and sicker. 
 

Fast forward to college and I got cholera on a trip to Haiti and it completely destroyed my gut. Suddenly I was having reproductive issues, respiratory issues, gastrointestinal issues, thyroid issues. A doctor mentioned trying a gluten free diet and I was desperate to get better so I jumped right in. Well, most everything went right into remission, I lost 60 lbs, and I suddenly had a much better quality of life. However, I noticed that anytime I snuck anything with gluten my reaction would get worse and worse. 
 

Now to today, I now have a severe reaction to gluten (even from cross contamination) anytime I am exposed. My GP thinks I definitely have celiac disease, but because of how severe my reactions are, she doesn’t want to put me through eating gluten to be officially diagnosed because I would not be able to handle it. She basically said that the only solution is eating gluten free anyways, so just keep doing what I’m doing. 
 

My question is, how important is an official diagnosis? Should I put myself through the diagnosis process to know for sure that it is celiac disease when I know I’ll get severely ill? Is it okay to assume it is celiacs? Is there anything out there that is similar to celiacs that I should be tested for (that doesn’t involve eating gluten)? 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Listening to your symptoms and your symptomatic experience with being off and on with gluten, I have no doubt that you have celiac disease. You may also find that other foods like oats and dairy cause similar symptoms as these two non-gluten foods not infrequently cause similar gut inflammation as gluten in the celiac population.

knitty kitty Grand Master
knitty kitty
Posted

Welcome to the forum,@Sambozzi,

Have you discussed taking a genetic test with your doctor?  Testing positive for some of the most common genes related to Celiac and improved health on a gluten free diet is frequently accepted as a diagnosis for Celiac.  

Sambozzi Newbie
Sambozzi
Posted
  • Author
9 hours ago, knitty kitty said:

Welcome to the forum,@Sambozzi,

Have you discussed taking a genetic test with your doctor?  Testing positive for some of the most common genes related to Celiac and improved health on a gluten free diet is frequently accepted as a diagnosis for Celiac.  

I’ve never had the genetic testing done, and she never suggested it. Would it be better to go to a gastroenterologist? Rheumatologist? 

Sambozzi Newbie
Sambozzi
Posted
  • Author
10 hours ago, trents said:

Listening to your symptoms and your symptomatic experience with being off and on with gluten, I have no doubt that you have celiac disease. You may also find that other foods like oats and dairy cause similar symptoms as these two non-gluten foods not infrequently cause similar gut inflammation as gluten in the celiac population.

You are right on the money with that. I also react to dairy and oats (even certified gluten-free oats). My worst reactions happen when I’ve been exposed to gluten and dairy at the same time. 

trents Grand Master
trents
Posted
3 minutes ago, Sambozzi said:

I’ve never had the genetic testing done, and she never suggested it. Would it be better to go to a gastroenterologist? Rheumatologist? 

I would try the gastro doc first.

Scott Adams Grand Master
Scott Adams
Posted

There are drawbacks to getting a diagnosis, for example higher life (and possibly health) private insurance costs, and policies can be harder to get.

In your case, given your severe symptoms I agree with your doctor--even if the test were negative for celiac disease you still have gluten sensitivity, something they can yet test for, and the outcome is the same, a gluten-free diet.

I also agree that if you're curious you could get a genetic test to see if you have the genetic makeup for celiac disease. This would be important for your direct family members who may also have the genes, and possibly celiac disease. Many celiacs have not symptoms, but research shows that the health risks are still the same.

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

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748
    Betty t
    Newest Member
    Betty t
    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

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.