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

Doctors Tests?

streethawk

Recommended Posts

streethawk Newbie
streethawk
Posted

Hi

I went to my Docs today (GP) after the advise i have recieved on here. I explain to him that i had given up gluten and dairy for a month and a half and my life long diarreah had cleared up completly. He aksed me why my doctor in the past had never tested for a Gluten of Lactose allergy as I had already had a colonospy, endosocpy and a barium swallow. I said I was told no such test exisit and maybe at that time it didnt, it was many years ago now.

He was pretty postive about the whole affair and was a very good Doctor. He said he would give me the following tests.

blood and faeces

Biochemisty

U&E *

Liver Profile *

Glucose

Total T4

Cholestrol

B12

Folicacia

Haematology

Full Blood Count

ESR *

Ferritin

Coeliac Screen *

Immunolgy

Immunoglobulins *

Microbiology

MC&S *

I wonder if you guys can give me any more information about the tests I have put a star next to? Also my Doctor was adament that I should stay of gluten and dairy for the tests as if I had an allergy it would show up with the anti bodies regardless, is this right?

He also said regardless of the results it sounds like you should stay of gluten and dairy indefintly.

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

I wonder if you guys can give me any more information about the tests I have put a star next to? Also my Doctor was adament that I should stay of gluten and dairy for the tests as if I had an allergy it would show up with the anti bodies regardless, is this right?

No, this is not right. Celiac antibodies go away on the gluten-free diet. Six weeks is enough to get a false negative if your antibodies were borderline to begin with, particularly if you're now asymptomatic. If they were really high you'll still get a positive result. On the off chance you have a true allergy to wheat antibodies would show up but I don't see allergy testing on your list.

You should definitely stay off gluten and dairy for at least six months. Chances are you will never tolerate gluten, but some of us regain our tolerance for dairy after our intestines heal.

Celiac testing has existed since the '60s but doctors were only aware of the most severe presentation. If you weren't a super-thin child with a swollen belly they would have missed it.

streethawk Newbie
streethawk
Posted
  • Author

No, this is not right. Celiac antibodies go away on the gluten-free diet. Six weeks is enough to get a false negative if your antibodies were borderline to begin with, particularly if you're now asymptomatic. If they were really high you'll still get a positive result. On the off chance you have a true allergy to wheat antibodies would show up but I don't see allergy testing on your list.

Well My blood test will be a week away should I be eating gluten everyday, im pretty sure that my symptoms would return as my diarreah returned after I ate a sausage last week.

I thought the allergy test was the Immunoglobulins ones?

As much as I dont want to ever eat gluten again I want a diagnosis 100% for my kids more than anything. My wife thinks all this gluten stuff is in my head while my two year old walks around with a huge bloated belly, pale skin and dark circles. All my attempts to take him off gluten have been met with comtempt as he has no issues with his stools.

Skylark Collaborator
Skylark
Posted

Well My blood test will be a week away should I be eating gluten everyday, im pretty sure that my symptoms would return as my diarreah returned after I ate a sausage last week.

I thought the allergy test was the Immunoglobulins ones?

As much as I dont want to ever eat gluten again I want a diagnosis 100% for my kids more than anything. My wife thinks all this gluten stuff is in my head while my two year old walks around with a huge bloated belly, pale skin and dark circles. All my attempts to take him off gluten have been met with comtempt as he has no issues with his stools.

Is there any way to postpone the celiac panel and go back to gluten for a few weeks? I would personally go a month eating a full gluten diet after that six weeks gluten-free and yes, start eating 3-4 slices of bread worth of gluten a day. After the antibodies go away completely (usually 3-6 months) it can take 2-3 months eating gluten to get measurable antibodies again. I totally understand how miserable it is, but if you MUST have an accurate test you can't be off gluten at all. The really problematic thing is that the celiac blood tests still have a 20-30% false negative rate.

Make sure you're getting deamidated gliadin IgA and IgG as part of the panel. They are the newest and most sensitive celiac tests. There should also be anti-TTG IgA, total IgA, and possibly anti-EMA and anti-gliadin.

I don't know exactly what that immunoglobulins test is. For the celiac panel you do need total IgA to be sure it's valid plus IgA deficiency is a risk factor. I was guessing that's what the test is but maybe you should call the Dr.'s office and ask. Allergies are not related to celiac or genetic non-celiac gluten intolerance - it's a different part of the immune system. If you get a positive skin or blood wheat allergy test it can help explain your reactions but you wouldn't necessarily pass any particular allergy on to your son. You would just pass on the tendency to get allergies.

I'm very sorry to hear about your son. Bloating is a classic celiac symptom, especially if your son is underweight. So is anemia, which he might have if he's really pale. Is your pediatrician brushing you off too? He really needs to be tested! Unfortunately it can be hard to get antibodies to show up in little kids.

streethawk Newbie
streethawk
Posted
  • Author

Make sure you're getting deamidated gliadin IgA and IgG as part of the panel. They are the newest and most sensitive celiac tests. There should also be anti-TTG IgA, total IgA, and possibly anti-EMA and anti-gliadin.

I'm very sorry to hear about your son. Bloating is a classic celiac symptom, especially if your son is underweight. So is anemia, which he might have if he's really pale. Is your pediatrician brushing you off too? He really needs to be tested! Unfortunately it can be hard to get antibodies to show up in little kids.

I have eaten Mcdonalds today and am amazed at the speed of the return of the black depression I have suffered my whole life. Did I really live this way? Perhaps I will phone my doctor on monday and see if I can delay the tests. Im not sure this will be the lastest tests its all being done on the NHS.

Yeah I feel for my son all I get from my family is your pale and have dark circles he must get it from you, your ok. People just dont seem to understand?

Archived

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

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


  • Member Statistics

    • Total Members
      131,216
    • Most Online (within 30 mins)
      7,748
    billiam3some
    Newest Member
    billiam3some
    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

    • Scott Adams
      My mo,ther married a bread making when I was 4

      By Scott Adams · Posted

      Your story is a powerful and heartbreaking testament to the profound damage that can be caused by undiagnosed celiac disease and the profound pain of not being believed or supported by family. It is sadly a common narrative within the celiac community to have suffered for years, even decades, while autoimmune conditions stack up, all while being dismissed. To answer your core question: yes, living in a environment with significant, constant gluten exposure, especially from airborne flour in a home where milling and baking occurred, would have created a perpetual state of autoimmune activation for you, even beyond the direct ingestion. This chronic exposure is strongly linked to the development and exacerbation of the very autoimmune disorders you describe—Migraines, Meniere's, Hashimoto's, and more. Your body was under constant attack, and the lack of care and understanding from your family compound that trauma significantly. It is not your fault. Many in the community share similar stories of a cascade of illnesses finally explained by a celiac diagnosis, often coming too late to prevent irreversible damage. While I cannot speak to the legal aspects of your inheritance situation, your experience with the medical neglect and the lasting impact of your childhood environment is deeply valid and shared by others who understand this unique type of suffering. Thank you for having the courage to share your truth. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      7yo struggling!

      By Scott Adams · Posted

      It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out" to "empowered choice." Instead of "you can't have that," use language like "we choose these safe foods so your tummy feels happy and strong." Involve her directly in her own care; let her be the "Gluten-Free Detective" at the grocery store, picking out exciting new treats, or make her the head chef in baking a special dessert that everyone gets to enjoy. When eating out, empower her by having her call the restaurant ahead to ask about safe options (with your help), making her feel in control rather than a passive victim. Acknowledge her feelings—"It's okay to feel sad that you can't have the roll, I sometimes feel that way too"—and then immediately pivot to a positive action, like unwrapping the special brownie you brought just for her. This combination of validation, involvement, and reframing turns a limitation into a shared family challenge where she feels supported, capable, and loved.
    • Scott Adams
      Rice Flakes

      By Scott Adams · Posted

      I know that Shiloh Farms makes this product, but I don't think it is labeled gluten-free.
    • Scott Adams
      Food Allergies

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      Diagnosis and further testing Celiac

      By Scott Adams · Posted

      It's strange to see two very different results in what appears to be a single blood test--one is positive and one is negative for a celiac disease test. Are these results separated by time? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...