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

Lab Test For Celiac

pixiegirl

Recommended Posts

pixiegirl Enthusiast
pixiegirl
Posted

I've been on this list a few years, I have celiac disease. My mom has felt for some time now that she has it too (or some sort of issue with gluten). However she is still having GI issues and has been going to her doctor. He ran blood tests for Celiac (I think 4 of them) and they all came back negative. HOWEVER, my mom has not eaten any gluten for at least a year. I told her that the tests are not even close to accurate if she has not been eating any gluten and she asked her doctor about this. His answer was you can NOT have celiac disease, the results of these tests say so.

She told him that I told her that she has to be eating gluten for the tests to be accurate and he said hogwash. She said, my daughter is sure of it, that I had read it on the internet. He made a comment about how not much on the internet is true. Sigh. But he did say show me where, on a reliable web site it says that.

So my question is, does anyone know of a place on the internet that I CAN show him that the tests won't be accurate unless she is eating gluten? I've been searching but most of what I've found is written by regular people not on medical web sites.

Any help would be greatly appreciated.

Susan

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

Celiac.com Sponsor (A8-M):


dally099 Contributor
dally099
Posted

hi there, i would say hogwash to the doctor, absolutley if shes been gluten free for a year blood work is going to come back negative. anyone here will tell you the same thing.

pixiegirl Enthusiast
pixiegirl
Posted
  • Author

Yes I understand that but my mother is 80 and was brought up to believe in her doctors, so what I am looking for is something from a website that says you have to be eating gluten for the test to be accurate so I can show her and her stupid doctor.

Susan

jerseyangel Proficient
jerseyangel
Posted

Hi Susan :)

Your mom's doctor is woefully ill informed.

Can you get your hands on a copy of Dr. Green's book--"Celiac Disease--A Hidden Epidemic"?

On page 52, he states:

"A key consideration for all of the tests described is whether the patient has been consuming gluten before being tested. Results of all the tests will return to normal on a gluten free diet."

He then goes on to describe the gluten challenge, which he states "involves a biopsy, not blood tests, after a period of eating gluten".

Phyllis28 Apprentice
Phyllis28
Posted

I found to following:

Open Original Shared Link

It might help.

Calle Rookie
Calle
Posted
Hi Susan :)

Your mom's doctor is woefully ill informed.

Can you get your hands on a copy of Dr. Green's book--"Celiac Disease--A Hidden Epidemic"?

On page 52, he states:

"A key consideration for all of the tests described is whether the patient has been consuming gluten before being tested. Results of all the tests will return to normal on a gluten free diet."

He then goes on to describe the gluten challenge, which he states "involves a biopsy, not blood tests, after a period of eating gluten".

I am reading Dr. Green's book now and have read other books besides doing research on the internet. I was diagnosed through Enterolab like several others on this board. I have fired many GI's in my area and was not going to do anymore invasive tests like the biopsy. I've been through enough over the past 25 years! The way I understand it is if you take the blood tests they are not accurate because if you do not have any damage in the small intestine, which some Celiac people do not, then the tests are a false negative. Not all Celiac's have damage in the small intestine, but that doesn't mean they don't have the disease. Also, on the biopsy's, if the doctor doesn't get the biopsy of the tissue where the damage is at then that will also come back negative and once again it doesn't necessarily mean that you don't have it. This is how I understand it and I don't know if that is correct or not.

Calle

Phyllis28 Apprentice
Phyllis28
Posted

I did a little more research. The New England Journal of Medicine has articles of Celiac but access is limited to a list or table of contents unless you are willing to pay for the article. I assume other promanent medical journals do the same thing. You might consider getting the list of articles and heading for the nearest library that carries medical journals.

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

Celiac.com Sponsor (A8-M):


aikiducky Apprentice
aikiducky
Posted

Open Original Shared Link

I hope the link works, this is the NIH consensus statement on Celiac disease, you can't get much more official than that, and it clearly states that all testing should be done while the patient is still consuming gluten. Hope this helps.

Pauliina

happygirl Collaborator
happygirl
Posted

Wow, it amazes me that drs are so misinformed.

Amazing because the tests measure an antibody response to gluten, and those who are Celiacs, once on a strict/maintained diet, return to "normal" levels (i.e., don't look like a Celiac anymore) because there is no gluten to react to.

"A gluten-free diet should not be started until all diagnostic tests are completed, as the withdrawal of gluten can change test results." Open Original Shared Link (again, Dr. Green)

Susan, good to see you on here again :)

pixiegirl Enthusiast
pixiegirl
Posted
  • Author

Thanks so much! Yeah this doctor use to be MY doctor but I changed after fighting with him for years about what was wrong with me. But my mom thinks he's the best - ugh!

Also thanks Happy girl for remembering me, I've been so busy lately I haven't posted but I do come back and read posts now and then!

Susan

sneezydiva Apprentice
sneezydiva
Posted

The Mayo Clinic info on Celiac says a gluten-free diet can cause blood tests and biopsies to appear normal. That is a site that most doctors would consider reliable.

Open Original Shared Link

Under Screening and Diagnosis--last paragraph.

Archived

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

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


  • Member Statistics

    • Total Members
      132,142
    • Most Online (within 30 mins)
      7,748
    Jeaneneve
    Newest Member
    Jeaneneve
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.