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

Considering Testing

nicole0392

By nicole0392
in Coping with Celiac Disease

Recommended Posts

nicole0392 Newbie
nicole0392
Posted

I have been dealing with stomach issues for 15 years. I have had every test imaginable done and have received no answers as to why I am sick every single day. With the love and support of my wonderful fiancee who doesn't want to see me sick daily he has spent hours on the internet trying to come up with answers. We are considering celiac disease. I eat a lot of gluten everyday and i am not getting any better. My only problem with this disease is that I do have random days where i feel ok and still eat gluten. is that common? also do I have to get tested or can i just go gluten free? my symptoms are bloating, stomach pain, loss of appetite, headaches, light headed feeling, nausea, vomiting, constipation and sometimes diarrhea, gas, FATIGUE. any suggestions or advice would be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

Welcome!

All those sympotms could be celiac symptoms.

No, you don't have to do testing, but it might be to your benefit to so. It is just a simple blood test. At the very least I think you should get your vitamin levels checked and your thyroid.

If you do decide to go gluten free, make sure you get all your testing done first.

Skylark Collaborator
Skylark
Posted

Random days when you feel what you currently think is OK are common. Many celiacs feel so much better off gluten that they realize their OK days were actually still sort of sick. Yes, celiac could easily explain your symptoms.

Do get tested. It's good to know whether you are celiac, or just one of the millions of people who gets sick from gluten. The first stage is just blood tests and can ordered by your GP. You can make the decision about whether to go on with an endoscopy with your doctor's help depending on what the tests show.

nicole0392 Newbie
nicole0392
Posted
  • Author

Thank you for the replies. I think I will get my blood drawn. Although this is not an easy task for me because i have small veins that move around. In the past month i have had blood drawn 5 times. do they run specific blood tests for celiac disease? also i had an endoscopy done about a year ago. do they have to specifically look for something or would they have seen the signs with that test? I am so ready to start feeling better. I never have an energy and the constant headaches and stomach pains are getting old but I am terrified to give up my bread, pasta and candy. I tried gluten free bread once and it was terrible. how do you guys do it? should i have my son tested as well?

mushroom Proficient
mushroom
Posted

Yes, there are several different blood tests that they run looking for antibodies. They would not find these unless they were specifically looking. Much the same is the case of endoscopic biopsies. Sometimes the celiac damage is visible to the naked eye, but it is usually detected by microscopic examination of the biopsy samples. Normally five or six samples are taken because the damage is not uniform throughout the small intestine and is easily missed.

You do not have to give up bread, pasta and candy when you give up gluten, nor cookies and cake. There is some very tasty gluten free pasta around, Udi's makes very good bread, and there are lots of gluten free candies. Now admittedly some gluten free products are nasty (there is a thread running on the forum on our least favorites) but there are many very fine gluten free processed products out there, and a zillion recipes on the internet for making your own delicious treats.

If I were you I would definitely ask them to try and find one of your elusive veins and get the testing done. It may be negative, and it may even be a false negative :unsure: , but if it is positive you KNOW.

nicole0392 Newbie
nicole0392
Posted
  • Author

any tips on what to look for when reading labels? i am scared i will eat "hidden gluten." also how long was it before you noticed a difference?

mushroom Proficient
mushroom
Posted

Here is a link to a previous thread on detecting hidden gluten:

If you eliminate lactose as well as gluten initially, you should see a difference almost right away, fewer GI symptoms - bloating, cramping, diarrhea, etc.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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
      New (possible) celiac diagnosis

      By Scott Adams · Posted

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • 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.
×
×
  • 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.