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

Blood Tests/Biopsy

mrsfunkway

Recommended Posts

mrsfunkway Rookie
mrsfunkway
Posted

Hello,

This is going off of this post below, but mine is a bit of a particular case. I just went to see a new doctor (internist) this afternoon about GI issues and treating my hypothyroidism. I had already thought the GI/thyroid issues might have something to do with gluten, especially since my GI problems took a turn for the worst after I ate an order of breadsticks at 3 in the afternoon and had it sit in my stomach undigested until sometime past 1am. I have multiple autoimmune problems and dysautonomia, which causes tachycardia.

Anywho, turns out the doctor and his sister have Celiac. And looking at my medical history and the brief histories i gave of my brother and mother (mother has had iron problems forever, brother has major digestive issues) he is pretty well convinced I have celiac. He ordered the full gambit of bloodwork to test for it. He also said something to the effect of "even if the tests come back negative, i still think you would benefit from a gluten free diet" and that he doesn't think a biopsy was really necessary. 

However, my friends with Celiac are urging me to press for a biopsy. Is it really necessary? I was planning on going gluten free regardless of the outcome anyways. My Celiac friends both recieved diagnoses prior to 2009. I don't have any children, but I would like at the very least for my brother to get tested eventually if the tests point towards a positive. And like I said, this doctor has Celiac himself. I see him again next Friday to go over the bloodwork results, but i would like to know if i should really be pushing for that biopsy.

Thanks!

 

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Hi, Honestly, it's better if you get the biopsy so you can always pull it out & stick it in some docs face when they don't believe you have celiac. You will also find more support from friends and family (& help to get your brother to get tested). That is if you are not afraid of the biopsy process.

In life, we never truly know when we might move to another area or heaven forbid, this savvy celiac doc should pass away. If you have the biopsy to back up the blood work then you shan't ever have problems with other docs or people taking you seriously.

Having said that, it's totally up to you. I don't know your age so don't know if you might have children someday. Emma on the thread you linked is I think 25?? but doesn't have kids. She's failed to consider that she is still young & didn't state that she never plans on having kids. Just try to consider what the future may bring in your life when you make your decision.

 

mrsfunkway Rookie
mrsfunkway
Posted
  • Author

Okay, thanks! I am 24 but my husband and I don't plan on having kids. However, the more I thought about it, the more I think I should get one for my brother's sake. Especially after my doctor's office called this evening to say my bloodwork tested positive for Celiac. Guess I will be on this forum longer than I thought! :)

squirmingitch Veteran
squirmingitch
Posted

Welcome to the club you never wanted to join!

The good thing about this club is that you don't have to take any pills, get radiation or chemo, or stick yourself with a needle every day. Things could be much worse than this.

Does your brother live close? If so he could go to your same savvy doc. That would be great! Also what about your mom?

Archived

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

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


  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748
    MLucia
    Newest Member
    MLucia
    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

    • 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.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.