Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Negative Bloods

sunilrana09
 Share

Recommended Posts

sunilrana09 Newbie
sunilrana09
Posted

Hi all, I am from the UK and have had tummy trouble over the last few years. I sometimes get really bad constipation and diarrhea alongside vomiting. I also have a lot of bloating and stomach/addominal pain on a regular basis.

Anyway I recently got in touch with my doctor and suggested I take a blood test for celiac desease. It has come back negative and they said my results are fine including my iron levels etc. No further action is needed.

However after having bloods I thought i will try going gluten free. It's been just over a week of consuming hardly any gluten and my symptoms I have been feeling for years seem to be subsiding and I am feeling more energised and my tummy area no longer hurts.

Am not sure what to do now as my bloods came back negative? My doctor goes to introduce gluten back at a later date and see what happens? 

If I do have anything with gluten in it I start to feel a little bit of pain in my tummy. More along the lines of cramping and tightening. Bloating too.

I am lost what to do? Do I just go gluten free if it seems to be going fine? Doctor has even said I could have had a bout of really bad IBS. 

But I have this problem all the time when I consume gluten foods. 

If I do go gluten it is kind of self diagnosing myself as bloods came neg and my doc hasn't said anything else at the moment. 

Is It harmful or unhealthy to cut out gluten products? Should I still be having it? 

Thank you 

 

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

The doctor is right, you would need to eat gluten for 12 weeks for the blood antibody tests, or 2 weeks for the endoscopy test.  The result if you test positive is they tell you to go gluten-free.  if you are willing to skip that process and tell yourself to go gluten-free, then that is fine IMHO.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
(edited)

I went gluten free the first time and felt great after 2 weeks. I saw myself improve on many levels. We had a shared household back then, but I did my own toaster separate cabinets etc. 

3 years later I got badly glutened got very ill and went for testing. My testing went on for months trying to get in team of Dr s etc. I attempted a 2 week gluten challenge with endoscope and colonscopy. I joined this forum. I was very ill after that. I got an NCGS diagnosis and was told to have a gluten-free household. This forum help me realized what I did wrong the first time.

It is a personal decision as to weather to go gluten-free without official diagnosis, and sometimes even then you find yourself back at a Dr to confirm. If I had not gone through the gluten challenge I don't think I would have made our whole household to gluten-free. The challenge, testing , and illness showed my family why we had to go whole house gluten-free.

Out of desperation I tried gluten-free diet first time as I realized I had continued issues. One day I read scientific research article and said I don't have IBS  I am intolerant to gluten. I did not realize how strict I had to be for my health until I met my immunologist and team that properly diagnosed me and joined this forum.

Edited by Awol cast iron stomach
Autocorrect incorrect
sunilrana09 Newbie
sunilrana09
Posted
  • Author

I eat gluten foods everyday in my normal diet before the bloods. Consumed bread, gluten foods as per normal. The bloods came negative.

 

It was only after the blood test results I decided to try a gluten free diet. It has been nearly two weeks. I consumer a gluten free diet and was feeling must better.

 

I have today had gluten food and my pain even though minimal started again. I had it today to test to see if it would affect me and it did.

 

My doctor has said to try gluten free foods and then reintroduce it.

 

Not sure what the next step is. I can't ask for another blood test again so soon?

 

  • 3 weeks later...
Joshh Newbie
Joshh
Posted

Hi! 

I think we're in the same position, I have had bloods on a diet containing gluten and they came back negative. 

According to my GP, there are different antibody tests, and the NHS site says not all coeliacs will test positive for antibodies. One of the best ways to get a good diagnosis is the biopsy, but even then there is a false negative rate. 

My GP wants to conduct the other blood test, but I have just started my gluten free diet and would hate to have to spend another 6 weeks ill if I don't have to. 

I think what we're finding as well in the COVID situation is that making an accurate antibody test is very difficult as people produce different levels of antibodies, or the immune response may be mostly confined to T-cells. 

It is unfortunate how poor the screening is for this condition and I may end up joining the large group of people who have found themselves spending years uneccesarily ill because of mis-diagnosis. 

sunilrana09 Newbie
sunilrana09
Posted
  • Author
1 hour ago, Joshh said:

Hi! 

I think we're in the same position, I have had bloods on a diet containing gluten and they came back negative. 

According to my GP, there are different antibody tests, and the NHS site says not all coeliacs will test positive for antibodies. One of the best ways to get a good diagnosis is the biopsy, but even then there is a false negative rate. 

My GP wants to conduct the other blood test, but I have just started my gluten free diet and would hate to have to spend another 6 weeks ill if I don't have to. 

I think what we're finding as well in the COVID situation is that making an accurate antibody test is very difficult as people produce different levels of antibodies, or the immune response may be mostly confined to T-cells. 

It is unfortunate how poor the screening is for this condition and I may end up joining the large group of people who have found themselves spending years uneccesarily ill because of mis-diagnosis. 

Ive stuck to the gluten free diet in the end. GP wants me to try an introduce gluten foods back in. But I have accidentally consumed it on some days and get those symptoms again. Think I am just going to stick to gluten free since I am having no problems.

cyclinglady Grand Master
cyclinglady
Posted
49 minutes ago, sunilrana09 said:

Ive stuck to the gluten free diet in the end. GP wants me to try an introduce gluten foods back in. But I have accidentally consumed it on some days and get those symptoms again. Think I am just going to stick to gluten free since I am having no problems.

The most important thing is feeling good.  I am glad the diet has helped you.  My own hubby went gluten free over 20 years ago and never looked back.  No formal diagnosis.  We know that gluten makes him sick.  Years later I was diagnosed with celiac disease.  Both of us feel great.  
 

Take care.  

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

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,558
    • Most Online (within 30 mins)
      7,748
    Wamedh Taj-Aldeen
    Newest Member
    Wamedh Taj-Aldeen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Is "Shield" skincare products gluten-free?

      By trents · Posted

      @LynnM, when you say, "today, his numbers were high", what numbers do you refer to? Are you speaking of celiac antibody scores? Can you be more specific and can you post the test names, the numbers and the reference ranges for the tests? So, I am understanding you to say that topical exposure to gluten doesn't cause him GI reactions but ingestion of gluten does but at the same time you are attributing the "high numbers" to the topical exposure?
    • Ginger38
      Abnormal Labs, Should I Be Concerned?

      By Ginger38 · Posted

      So I recently had blood work and my hemoglobin, hematocrit, protein and alkaline phosphatase were all low. They have never been low in the past but since august of last year I have been on the in and off gluten rollercoaster as I mentioned in previous posts. Should I be concerned with these new findings? I am worried I have made myself really sick and done damage or something this past year 
    • LynnM
      Is "Shield" skincare products gluten-free?

      By LynnM · Posted

      Thank you Scott. My son doesn't have a reaction topically, only when ingested. Interestingly though, the doc told us the face cream getting gluten into his bloodstream doesn't do the damage akin to when gluten is ingested. He had no reaction when using the face cream, it only presented in blood-work. I'm hopeful from all the comments today and will wait for the GI doc to reply. If he is cleared to use it, I will encourage SHIELD to get a gluten-free certification 
    • Scott Adams
      Is "Shield" skincare products gluten-free?

      By Scott Adams · Posted

      It’s great that you’re taking the time to research products carefully for your son with celiac disease—especially since accidental gluten exposure through skincare can be a real concern for sensitive individuals. Based on the ingredient lists you’ve shared, none of the products appear to contain obvious sources of gluten like wheat, barley, or rye derivatives. Ingredients like glycerin and tocopherols (not listed here but often a concern) can sometimes be derived from wheat, but many manufacturers use plant-based or synthetic sources. SHIELD’s transparency and willingness to share their full ingredient list is a good sign, and their note about not intentionally adding gluten is reassuring. Still, because ingredient sourcing can vary and sensitivities differ from person to person, it’s wise that you’ve reached out to your GI specialist to be sure these products are safe for your son’s specific needs. In the meantime, if you do try any of the products, consider patch-testing them first and watching closely for any signs of skin irritation or reactions. PS - Most people with celiac disease won't react to skin products that may contain gluten, but I still recommend finding gluten-free products.
    • LynnM
      Is "Shield" skincare products gluten-free?

      By LynnM · Posted

      Greetings Trents and Scott. This is the first time I'm posting here so I apologize in advance if I'm not replying properly. My 13 YO was diagnosed at age 5 and once gluten was removed from his diet, he grew 3" in a year, skin became much better and dark circles around his eyes disappeared. Today his numbers were very high and our new dietician discovered his face cream (Clinique dramatically different lotion) contained gluten. My fault for not checking.    His acne really has only just started and he's using OCT gluten-free products but the SHIELD is nothing short of miraculous for my 16 YO son and the 13 YO is eager to start. I will await his dietician's reply or google each ingredient.    I don't want to put him on that Rx as it's not that bad and isn't painful either. Just a boy starting 8th grade and doesn't want bad acne.    When I hear back I will circle back. 
×
×
  • Create New...