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

Finallyn Got My Results From Prometheus

ANDOBEAR

Recommended Posts

ANDOBEAR Apprentice
ANDOBEAR
Posted

Ok so here are the results

Serological markers for celiac are NOT detected.

AGA IgG 0.6U/ml reference <10.0 U/ml

AGA IgA 0.5 U/ml reference <5.0 U/ml

TTG IgA 0.1 U/ml reference <4.0 U/ml

EMA IgA negative reference negative

Total IgA 117 mg/dl reference 44-441 mg/dl

Alleles Detected DQ2 heterodimer

Category 4 DQ2 heterozygous /10x risk over general population/ relative risk high

Summary Interpretation: Results DO NOT exclude a diagnosis of celiac disease.

So, if the serological markers are not detected, why can't celiac be excluded? Is this just because I have the gene, or am I missing something in the numbers? The nurse at the GI says I DON"T have it based on this test and the biopsy of my duodenum, which showed increased intraepithelial lymphocytes at the vilous tips, which the pathologist noted is suggestive of celiac. I'm not sure how she came to that conclusion since the biopsy is suggestive and the blood can't rule it out. I'm seeing a specialist tomorrow so maybe he can help explain it to me but if someone here can get me started on understanding these results, that would be great.

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

I know there are a lot of false negative with blood work. With what they told you about the biopsy and having the DQ2 gene, if I were you, I would go Gluten Free and let the diet speak for itself. I might even go on the diet even if I had NO symptoms. Based on that biopsy and having the gene. Life is too short to worry about eating one food. There is so much more food to enjoy and you could prevent cancers that are related to Celiac. Just my 2 cents.

ANDOBEAR Apprentice
ANDOBEAR
Posted
  • Author
I know there are a lot of false negative with blood work. With what they told you about the biopsy and having the DQ2 gene, if I were you, I would go Gluten Free and let the diet speak for itself. I might even go on the diet even if I had NO symptoms. Based on that biopsy and having the gene. Life is too short to worry about eating one food. There is so much more food to enjoy and you could prevent cancers that are related to Celiac. Just my 2 cents.

I'm interested to see what the GI specialist says. If he suggests going gluten free, I will. I want to get to the root of the problem.

aikiducky Apprentice
aikiducky
Posted
So, if the serological markers are not detected, why can't celiac be excluded?
Because the blood tests have a lot of false negatives.

Pauliina

nora-n Rookie
nora-n
Posted

Because the blood tests are calibrated to first be positive when almost all, or all, biopsies are positive. They have a very high cutoff. They could have set a lower one, but then they woud over and over have to explain why the biopsies do not show villous atrophy then.

Here in europe in many places we get lots of money from the health insurance (state) if diagnosed celiac, so the tests are so strict. They have to use the same criteriae over in the U.S. , probably because they want to keep the same standards.

And there was an asrticle here in celiac.com where scientists sent blood from diagnosed celiacs (by biopsy) to lots of different labs and many labs only found half of the celiacs, and others found almost all. They did not disse which labs they were.

This is becasue they set different cutoffs.

But my daughter was diagnosed with negative biopsies and negative blood tests, just based on clear symptoms off and on gluten.

They can do that with you too.

Just get the DH biopsied, and that will settle the whole issue.

It has to be biopsied during and outbreak and not the rash itself, becasue the IgA there is used up. Should be healthy skin next to a rash, and during an outbreak. Mine was negative because it was not during an outbreak.

nora

ANDOBEAR Apprentice
ANDOBEAR
Posted
  • Author
Because the blood tests are calibrated to first be positive when almost all, or all, biopsies are positive. They have a very high cutoff. They could have set a lower one, but then they woud over and over have to explain why the biopsies do not show villous atrophy then.

Here in europe in many places we get lots of money from the health insurance (state) if diagnosed celiac, so the tests are so strict. They have to use the same criteriae over in the U.S. , probably because they want to keep the same standards.

And there was an asrticle here in celiac.com where scientists sent blood from diagnosed celiacs (by biopsy) to lots of different labs and many labs only found half of the celiacs, and others found almost all. They did not disse which labs they were.

This is becasue they set different cutoffs.

But my daughter was diagnosed with negative biopsies and negative blood tests, just based on clear symptoms off and on gluten.

They can do that with you too.

Just get the DH biopsied, and that will settle the whole issue.

It has to be biopsied during and outbreak and not the rash itself, becasue the IgA there is used up. Should be healthy skin next to a rash, and during an outbreak. Mine was negative because it was not during an outbreak.

nora

The rash I get looks nothing like the pictures of DH I see online. Its more like a cross between hives and eczema. It has been diagnosed as eczema by my old PCP. I will ask the specialist if he feels its worthy of a biopsy.

Archived

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

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


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      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: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.