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

Response to gluten-free trial?

Liz33

Recommended Posts

Liz33 Newbie
Liz33
Posted

Hi all, 

I had blood tests done today (full coeliac panel) but am keen to hear your thoughts as I won't get the results back for a week.

I've been having a range of GI and other symptoms for 3 months now including mild diarrhoea each morning, bloating, excessive gas, churning tummy, loud stomach noises and general abdo discomfort. I've also had some spells of lightheadnness/vertigo plus have had my feet turn purple/red and burn uncomfortably each night. I had some bloods done in January for something unrelated and had unexplained high bilirubin, but everything else was fine.

I started to try a gluten free diet 7 days ago just to see what would happen and am interested in whether my response could still be fitting with coeliac. For the first 4 days I seemed to get immediate relief - I didn't have diarrhoea for the first time in 3 months and I had no discomfort whatsoever! But after day 5 I suffered a few of my old symptoms, albeit not as bad.

Today I resumed eating gluten and had 4 cookies + 2 slices of bread - but I still feel quite fine! There has been no reaction that I can glean so far.

So my questions are: 

1) could my responses to both removing and reintroducing gluten still be fitting with coeliac?

2) am I likely to get a false negative after only being gluten free for just 7 days?

Thanks all.

 

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

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted
22 hours ago, Liz33 said:

1) could my responses to both removing and reintroducing gluten still be fitting with coeliac?

2) am I likely to get a false negative after only being gluten free for just 7 days?

Hi Liz and welcome :)

1) Yes, although it's very difficult to generalise as people's reactions are so different

2) Impossible to say, see answer 1 :P

Sorry, it really is difficult to be sure. Even a negative test and biopsy doesn't categorically confirm gluten isn't an issue, that's what happened to me. I'd say 7 days would be very quick for the antibodies to disappear however so fingers crossed the test will be accurate. Just stay on gluten now till you know tests are finished. If you get an onward referral to a gastroenterologist you may be in for a wait.  You need to be on gluten for any testing to work.

Make sure you ask for a copy of your test results, some GPS won't, but they will read them to you so take a notepad. Also good idea to keep a food diary so you can spot any patterns between what you eat and how you feel. 

Check out more info here: 

https://www.celiac.com/forums/topic/115138-suggestion-faq-intro-post-for-the-diagnosis-board-input-requested/?do=findComment&comment=970127

On your symptoms, the lightheaded and vertigo I get, abdo yes. Burning feet new one on me, but a search of the forum:

https://www.celiac.com/gluten-free/search/?&q=burning feet

I wouldn't read too much into that. There's nothing gluten can't mess around with!

Best of luck! Hope you find your answers. 

Matt

Liz33 Newbie
Liz33
Posted
  • Author

Thanks so much for your reply Matt. 

Just an update:

I've been back to get my test results today. My bloodwork was negative, however I tested positive for the gene. My iron, haemoglobin, CRP and all my other bloods were good too. I'm disappointed as a positive blood test would have just explained all my symptoms so neatly....now I have to worry about other diagnoses. I was so sure that gluten was the root of my problem. 

I've now been referred for a colonoscopy and endoscopy, so hopefully the endoscopy should shed some further light. I'm really worried that it could be something else more sinister! I'm only 30 so it's unlikely, but still....

I'm hoping that my 7 days off gluten might be to blame for the negative bloodwork.

Victoria5289 Apprentice
Victoria5289
Posted
On 5/10/2017 at 8:04 AM, Liz33 said:

Hi all, 

I had blood tests done today (full coeliac panel) but am keen to hear your thoughts as I won't get the results back for a week.

I've been having a range of GI and other symptoms for 3 months now including mild diarrhoea each morning, bloating, excessive gas, churning tummy, loud stomach noises and general abdo discomfort. I've also had some spells of lightheadnness/vertigo plus have had my feet turn purple/red and burn uncomfortably each night. I had some bloods done in January for something unrelated and had unexplained high bilirubin, but everything else was fine.

I started to try a gluten free diet 7 days ago just to see what would happen and am interested in whether my response could still be fitting with coeliac. For the first 4 days I seemed to get immediate relief - I didn't have diarrhoea for the first time in 3 months and I had no discomfort whatsoever! But after day 5 I suffered a few of my old symptoms, albeit not as bad.

Today I resumed eating gluten and had 4 cookies + 2 slices of bread - but I still feel quite fine! There has been no reaction that I can glean so far.

So my questions are: 

1) could my responses to both removing and reintroducing gluten still be fitting with coeliac?

2) am I likely to get a false negative after only being gluten free for just 7 days?

Thanks all.

 

Check for a tumor then check for any gluten allergy like whey 

Archived

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

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


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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.