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

Do I Care If I Have A Diagnosis?

ErinP

Recommended Posts

ErinP Newbie
ErinP
Posted

So here's the thing--

I landed in the hospital about two months ago for four days.

I had a severe bacterial infection (actually, three) as well as serious inflammation of both my ilium and colon. The doc was positive it was Crohn's disease based on the CT scan, bacterial infections and my history.

What struck me odd from the very beginning though is the fact that I could directly link the flare that landed me in the hospital to having cheated on the low-carb diet I'd been following for the better part of two years. Donuts, muffins, brownies... It was the week before Easter and I was celebrating! :D

So, obviously once I was out of the hospital and off their bland, starchy diet, I went back on my low-carb diet (no grains, no sugar) with the additional modification of both Specific Carb and Paleo. (Ie, no dairy, no nuts, no artificial sweeteners etc. either) Afterall, I now new I had Crohn's disease!!

I went in for my colonoscopy two weeks ago and it looked fabulous. In fact, my doc was mumbling as he went along that maybe it was just infectious colitis... I said that might explain the infections this spring, but what about my history??

He said it quite possibly might be nontropical sprue. I didn't realize that was just another name for celiac, so I mentioned that I think grains cause me some real problems... He nodded and gave me suggestions for dealing with gluten intolerance and said we could start testing for it.

But here's the thing: Do I care? I already KNOW grains cause me problems. I already know I need to dump them from my diet. I also know that testing for celiac is no guarantee of an accurate diagnosis.

I'm already operating from the standpoint that I have celiac disease so does it matter if I have a diagnosis in my chart??

Thanks in advance for any thoughts for a newbie! :)

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

Celiac.com Sponsor (A8-M):


Poppi Enthusiast
Poppi
Posted

I don't care.

I have a family history of Celiac and I get so violently ill with the slightest cross contamination that doing a 3-4 month gluten challenge is out of the question. I will never have an official diagnosis because I just cannot imagine making myself ill to the point of not being able to care for my own children for that length of time. Plus I worry about the recovery from the gluten challenge? What if it took several months or even years to recover? What if I did so much damage that I developed refractory celiac? Not worth it.

Based on my symptoms, my sensitivity and my family history I am 100% certain I have Celiac disease. That's all the diagnosis I will ever have.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

I'm wondering that myself. For me, I've had a lot of diagnoses-by-exclusion and not a lot of confirmation of anything. Or even acknowledgment of suffering. I'd really like the confirmation of a diagnosis at this point in my journey through medical hell.

In your case? Seems awful cut and dry--gluten is bad for you!! Screw the test.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Since you have been low carb for 2 years any testing you do is highly likely to show up as negative regardless of whether you have it or not. You would have to make yourself sick again by consuming the equivalent of 3-4 slices of bread for around 3 months prior to blood testing. And even then there is about a 30% false negative rate. Why make yourself sick for a label? As long as you are committed to staying stictly gluten-free it's no big deal to self diagnose, IMO. I think one concern SOME people have is whether they will be able to stick with it for the rest of their life without a diagnosis. Some people also persue diagnosis so they can get the support of their family members or make sure their immediate family knows to be tested. Without a diagnosis, however, you can still ask your dr to test for other things that are common such as low vitamin and mineral levels and other auto-immune diseases like hashimotos or RA.

Jestgar Rising Star
Jestgar
Posted

I also don't care.

What I choose to eat is my business and an MDs opinion about that is pretty irrelevant.

ErinP Newbie
ErinP
Posted
  • Author

Thanks for the opinions. Yeah, that's pretty much the way I was thinking. I tend to think almost EVERYONE gets entirely too many grains in their diet (part of why I've been low-carb for a couple of years) so to me it's not much of a shift to go from saying, "I don't eat grains" to "I can't eat grains." ;)

And if I'm not official, so be it.

Kate79 Apprentice
Kate79
Posted

I think you've got the right attitude, Erin. The only reason to try for an 'official' diagnosis is if you'd get some benefit from it (which you won't - it's not like there's drugs for celiacs!) or if you think you'll cheat without it. I went gluten free, as suggested by my doc and nutritionist, before being fully diagnosed - blood test, but no endoscopy. The proof was really in how much better I felt - and any time I happen to get a bit of contamination it's re-confirmed. I've thought about doing the gluten challenge for the endoscopy, but since even a little cross contamination wipes me out for days so I really don't want to know what eating bread for three months would do to me. I think you've already got your answer :)

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
      131,904
    • Most Online (within 30 mins)
      7,748
    AnneSN
    Newest Member
    AnneSN
    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.