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

Awaiting Tests But Can't Eat Gluten - Scared Of False Negative

Celiac Mindwarp

Recommended Posts

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Hi, I would love some input.

After 20+ years of symptoms you will all recognize, I finally realized I may have celiac disease. My problem is that I have been wheat free 9 years after doing Atkins and realizing how ill it made me (also gave up alcohol, coffee, tea and should give up sugar, corn).

I tried eating wheat, lasted 3 weeks and was so ill I had to stop. I had blood test 1 week in (too early, cheers doc) but the lab lost my results.

I was off wheat 10 days, back on 5, was so bad I nearly ended up in the emergency room, and was retested.

Surprise, it came back negative.

That was 6 weeks ago, I have a endoscopy in 3 weeks, so it will be a couple of months since gluten, plus 9 years wheat free.

I am pretty sure that will be negative too, but I am pretty convinced I am celiac.

Gluten ingestion not an option, way too ill and have kids to look after.

Do I just need to accept I wont get a diagnosis but will need to be gluten-free for life?

Thanks everyone x

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

Yes.

If you can't go back on gluten, there is no way to find out if your system is reacting to gluten.

Gene tests give you some information, but they cannot tell you if you are celiac or not.

tom Contributor
tom
Posted

Yes.

If you can't go back on gluten, there is no way to find out if your system is reacting to gluten.

...

Mindwarp sounds pretty convinced his/her system is reacting to gluten. (I know you're really referring to how an accurate antibody test needs that antibody's stimulus.)

The endoscopy/biopsy could show "damage consistent w/ celiac", leaving it up to individual Drs' whether to combine it w/ reactions including ER trips & DX celiac disease/NCGI, or go the opposite way & say "probably IBS, take a daily pill for the rest of your life & maybe see a shrink because it might be all in your head".

So make sure to get a copy of the endoscopy & biopsy reports. The summarized version might say Negative while little details could make you ask "well what *did* cause that then?"

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted
  • Author

Thanks for your replies

I didn't include 20 years of vomiting, weight gain despite healthy eating, recurrent miscarriage (9 counts as recurrent I think), migraines, ecxzema, anxiety, extreme fatigue, failure to heal from RSI etc. Plus grandmother with Barretts aesophogus who lives m toast and nutrition drinks, mother apparently had M.E for 30+ years (but I recognize some symptoms...) Aunts with diverticulitis and food intolerance. And a child with severe nut allergy, milk intolerance, asthma, eczema.

I'm going to call today to get copy of blood results before I get my biopsy.

I have no doubt I have a gluten reaction, I guess I'll stick gluten-free and wait for medical science to catch up with where the rest of us are.

Great community here, keeping me sane x

kittty Contributor
kittty
Posted

I also refuse to go back on gluten to get a positive test result - I'm out of sick time at work! My doctor suggested having the blood tests done anyway, even though I'd been off gluten for several months, and they came back negative. But there are other blood work results that can point to celiac. I've been going over old test results from the last three years, and even though none of those tests was directly for celiac, there were signs pointing to it. The doctor never thought these things were a concern, so I've studied them on my own.

A high white blood cell count may indicate celiac damage in the intestines

A low MVC count may indicate iron anemia

Low protein and albumin levels could indicate malabsorption, possibly due to celiac

A low A/G ratio may indicate an autoimmune disease like celiac

There are others too, but if you get a copy of your other blood work, go through and look for anything that is high, low, or borderline high or borderline low.

Next week I'm going to ask for a full panel of vitamin/mineral levels. Even though I'm feeling much better and gluten is gone from my life, I'm still not 100% great and my white blood cell count is still high. I'm hoping that will zone in on anything I'm lacking in (like Vitamin B6 or Iron), so I can target my supplements.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted
  • Author

Kitty

That's really helpful, thanks so much.

I'm collecting my last 3 sets of results tomorrow, and will ask doctor to go further back too.

We have to be our own detective it seems.

My DH is new in his job so time to look after the kids (or me on a bad day...) is impossible so sympathy.

I have repetitive strain injury, so I am used to having a condition few understand and many think is not significant (or even real in some cases, grr)

Good luck with improvements

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.