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

Blood Test Accuracy

angiegoo

Recommended Posts

angiegoo Newbie
angiegoo
Posted

Hi there,

I was wondering if anyone had any ideas as to how accurate blood tests for celiac are?

A couple of months ago I tested positive with:

Gliadin IgA Abs *59 (0-20)

tTG IgA/IgG *273 (0-20)

Yesterday I had the biopsy, and now have to wait another two weeks to find out the results. I have no typical symptoms of celiac disease, but the reason I was tested was because my mum was just diagnosed with it this year.

Does anyone know what I should be expecting from the biopsy?

Thanks

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

tTG IgA/IgG *273 (0-20) is a strong positive on a test that is rather specific. False positives are uncommon.

Even if your biopsy fails to find damage to your villi, you should seriously consider trying the gluten-free diet after the biopsy. You say you have no typical symptoms, but there are over 200 known symptoms. It was a year into the gluten-free diet that I read about migraine headaches as a symptom and realized that, after years of having them, I had not had one since going gluten-free. It is ten years now that I have not had one.

angiegoo Newbie
angiegoo
Posted
  • Author

tTG IgA/IgG *273 (0-20) is a strong positive on a test that is rather specific. False positives are uncommon.

Even if your biopsy fails to find damage to your villi, you should seriously consider trying the gluten-free diet after the biopsy. You say you have no typical symptoms, but there are over 200 known symptoms. It was a year into the gluten-free diet that I read about migraine headaches as a symptom and realized that, after years of having them, I had not had one since going gluten-free. It is ten years now that I have not had one.

Ok, thanks heaps.

Yes, the GI suggested that I try going gluten free even if I have a negative biopsy result, he said I could be gluten intolerant. I was still dozey at the time he told me that though, and I forgot to ask him what the difference is between celiac disease and just being gluten intolerant?!

nora-n Rookie
nora-n
Posted

There is some new research now into positive ttg antibodies and negative biopsies, and they did find the people that went gltuen free did improve.

Nowadays a lot of celiacs are diagnosed without any symptoms, that is because they now test close blood relatives of diagnosed celiacs.

Often they ahve severe villi damage but no symptoms. Old an young.

They found that 3% of old people have celiac when screening old people in Finland, but they did not have symptoms. The percentage of celiacs increase with age.

Skylark Collaborator
Skylark
Posted

A LOT of people with anti-tTG antibodies find that some subtle health problems go away when they don't consume gluten whether or not the biopsy is positive.

The connection between gluten intolerance and celiac is unclear. People like you with anti-tTG are probably in an early stage of celiac disease even if the biopsy is normal. There are other people with negative blood tests and biopsy who still get very sick if they eat gluten.

angiegoo Newbie
angiegoo
Posted
  • Author

A LOT of people with anti-tTG antibodies find that some subtle health problems go away when they don't consume gluten whether or not the biopsy is positive.

The connection between gluten intolerance and celiac is unclear. People like you with anti-tTG are probably in an early stage of celiac disease even if the biopsy is normal. There are other people with negative blood tests and biopsy who still get very sick if they eat gluten.

So if it comes back with a normal biopsy is it possible that after a few years the biopsy could come back positive? If so, then would it be a good idea to go and get another biopsy after a few years? Or just go off gluten once some more prevalent symptoms arise?

Thanks for all the input. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

So if it comes back with a normal biopsy is it possible that after a few years the biopsy could come back positive? If so, then would it be a good idea to go and get another biopsy after a few years? Or just go off gluten once some more prevalent symptoms arise?

Thanks for all the input. :)

You can still be celiac even with a negative biopsy and negative blood tests for that matter. As far as the biopsy goes damage can be patchy and it can be missed in the areas that they take the biopsy from. I would go gluten free after the biopsy and not even wait for the results. With a firmly diagnosed parent and the strong positive blood work you have had it would be the wise thing to do to prevent damage to your brain, liver, joints, gallbladder, etc. In some GI symptoms are one of the last things to so up and a lot of antibody damage can happen before that occurs.

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

People with positive blood tests have been followed in studies. Some people with anti-tTG convert to celiac and a LOT of people with anti-endomysial antibodies convert. You didn't mention getting anti-endomysial done.

If your biopsy comes back normal, you still might try gluten-free for a while. You might be really surprised at which nagging health problems vanish.

You also might think about whether you want to even give your body a chance to develop more autoimmunity. Basically, you can completely avoid the risk of developing a pretty troublesome disease by adopting the gluten-free diet. Remember, you can't "undo" celiac autoimmunity. Once your body learns to attack itself, you become at-risk for other problems like autoimmune thyroid disease and nerve damage.

angiegoo Newbie
angiegoo
Posted
  • Author

People with positive blood tests have been followed in studies. Some people with anti-tTG convert to celiac and a LOT of people with anti-endomysial antibodies convert. You didn't mention getting anti-endomysial done.

If your biopsy comes back normal, you still might try gluten-free for a while. You might be really surprised at which nagging health problems vanish.

You also might think about whether you want to even give your body a chance to develop more autoimmunity. Basically, you can completely avoid the risk of developing a pretty troublesome disease by adopting the gluten-free diet. Remember, you can't "undo" celiac autoimmunity. Once your body learns to attack itself, you become at-risk for other problems like autoimmune thyroid disease and nerve damage.

Ok, thanks. I guess it would be harder to go gluten free, if I haven't officially been diagnosed as celiac...people wouldn't really understand why I would make that choice if my results come back negative.

In a way I'm hoping the biopsy result come back showing signs of damage.

ravenwoodglass Mentor
ravenwoodglass
Posted

Ok, thanks. I guess it would be harder to go gluten free, if I haven't officially been diagnosed as celiac...people wouldn't really understand why I would make that choice if my results come back negative.

In a way I'm hoping the biopsy result come back showing signs of damage.

For your sake I hope it does also. Keep in mind that not all celiac symptoms are gut related. I do hope you do at least a dietary trial. You may discover that things you never dreamed could be related to celiac resolve. If your producing antibodies that are showing up in blood work damage is being done somewhere.

Skylark Collaborator
Skylark
Posted

Ok, thanks. I guess it would be harder to go gluten free, if I haven't officially been diagnosed as celiac...people wouldn't really understand why I would make that choice if my results come back negative.

In a way I'm hoping the biopsy result come back showing signs of damage.

I do hope you try the diet at least. If it turns you you feel better gluten-free, it's easy to justify. "No, I don't have celiac but I sure am happier without these minor health problems."

If it makes no difference, you probably don't need to be strictly gluten free. The celiac experts at the conference I saw think folks with "latent celiac" (this is what you would be with negative biopsy) or first-degree relatives with celiac are wisest to go light on the gluten. It's not a matter of the strict celiac diet, but rather doing things like cooking rice and potatoes at home instead of eating bread, and choosing different grains for your breakfast cereals. They think eating less gluten lowers your risk of becoming fully celiac.

angiegoo Newbie
angiegoo
Posted
  • Author

Great, thanks everyone for the helpful info. I think I'm going to wait for the results and consider limiting my gluten intake regardless of what happens.

  • 2 weeks later...
angiegoo Newbie
angiegoo
Posted
  • Author

Hi all,

I finally found out my biopsy results. I spoke with my doc over the phone and he told me there was 'some early stages of celiac disease found...' and given my history and bloodwork I probably should 'try going gluten free for a few months'.

Even though he didn't solidly say that I have celiac, I think that from what I've read here on the forum, I can safely say 'I am celiac.' I don't think any damage would appear on a biopsy if you weren't celiac, would it?

Anyways, a gluten free diet is now underway, which I intend to stick to beyond a few months...I'm hoping it won't be too hard to get used to!

Thanks everyone for your help :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi all,

I finally found out my biopsy results. I spoke with my doc over the phone and he told me there was 'some early stages of celiac disease found...' and given my history and bloodwork I probably should 'try going gluten free for a few months'.

Even though he didn't solidly say that I have celiac, I think that from what I've read here on the forum, I can safely say 'I am celiac.' I don't think any damage would appear on a biopsy if you weren't celiac, would it?

Anyways, a gluten free diet is now underway, which I intend to stick to beyond a few months...I'm hoping it won't be too hard to get used to!

Thanks everyone for your help :)

I know this sounds funny but I am relieved that the biopsy was positive. Yes you can now say you have celiac. I am very thankful for you that the damage is in the early stages. The lifestyle does take a bit of getting used to but you can do it. You may find a bit of withdrawl but not all do. Ask any questions you need to you. We are here for you.

Archived

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

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


  • Member Statistics

    • Total Members
      128,865
    • Most Online (within 30 mins)
      7,748
    Debbiebee
    Newest Member
    Debbiebee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Recent blood test results check in - TTG- IGA

      By Scott Adams · Posted

      Most likely cross-contamination I believe.
    • cristiana
      How long after being diagnosed with Celiac do you feel better?

      By cristiana · Posted

      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Inhaler problem

      By knitty kitty · Posted

      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
    • trents
      How long after being diagnosed with Celiac do you feel better?

      By trents · Posted

      Welcome to the forum, @jnstefan! She should start feeling better within a week or two if she is truly avoiding gluten and if she isn't also showing intolerance to other foods. It is quite common for celiacs to be dairy intolerant (not just the lactose but the protein casein in dairy) and to oats (protein is avenin). Casein and avenin have structures similar to gluten. We call this cross reactivity (not to be confused with cross contamination). So, you might look at pulling these two food items from her diet to see if there is improvement. But achieving a gluten free state is more challenging than people realize when the first start in. It is hidden in so many foods you would never expect to find it in like soy sauce and canned tomato soup, just to site two examples. This might help:  
    • jnstefan
      How long after being diagnosed with Celiac do you feel better?

      By jnstefan · Posted

      My 10 year old daughter was diagnosed with Celiac 2 weeks ago. We've been on gluten free diet now for 2 weeks. She still experiences abdominal pain at times , and is struggling with fatigue. What is everyone's experience with how long it takes for the body to heal and stabilize after starting the gluten free diet? Thanks for any feedback!
×
×
  • Create New...