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

Insight Into Test Results

hawkgirl98

Recommended Posts

hawkgirl98 Newbie
hawkgirl98
Posted

I was diagnosed with Celiac via blood test about a month ago and went into today for an endoscopy. The notes when I left said it was "normal" but that a biopsy of my small intestine was done and my doctor will call me with those results sometime next week.

My blood test results were as follows:

Deamidated Gliadin Abs, IgA 51.3H (limit 0.0-10.0)

Deamidated Gliadin Abs, IgG 18.1H (limit 0.0-10.0)

T-Transglutaminase IgA >100H (limit 0-3)

T-Transglutaminase IgG 9H (limit 0-5)

Immunoglobin, Qn, Serum 198 mg/DL (limit 70-400)

What I take away from this is that my blood test results were pretty strongly indicating Celiac - is that a fair reading? Does it mean anything to say my endoscopy was "normal" without knowing how my biopsy results turn out?

THanks!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Your blood tests results are strongly positive. You don't need to wait for the biopsy results to start the diet. It is still possible for you to have biopsy results that are positive or even negative. False negatives are not uncommon. Go ahead and start the diet with the blood results you had you need to be on the diet no matter what the results of the biopsy are. You may already have seen some relief of symptoms before you even go back for the results.

Skylark Collaborator
Skylark
Posted

Celiac is a fair reading! The new anti-deamidated gliadin peptide test is very good for diagnosing celiac, and that combined with your very high anti-tTG leaves no question.

Normal endoscopy means they saw no inflammation, ulcers, and other GI problems. That's good news. Doctors cannot see celiac disease with the endoscope. They will have done biopsies, but celiac damage can be patchy so there is a chance it can be missed and your biopsy comes back negative. You still need to go on a gluten-free diet, as I'm sure your doctors will tell you if they haven't already.

hawkgirl98 Newbie
hawkgirl98
Posted
  • Author

Thanks. I got the blood test results a month ago and went gluten-free right away. Hard to say if I noticed a difference because I wasn't having serious or even daily symptoms. Celiac runs in my family (dad, aunt and cousin although none have been biopsy-confirmed) so I've been on the lookout for it and after experiencing a variety of minor issues the last couple months (bloating and other digestive issues, fatigue, migraines, mood swings, mild depression...), I asked my regular doctor to test me as part of my regular annual exam. I had been tested at a free screening at the U of C Celiac Center in 2008 and that was negative.

Because of the family history, I originally wasn't going to bother with the endoscopy, but everything I have read seemed to strongly recommend it. When I found a doctor who could get me in right away, that sealed it (some docs I contacted wouldn't be able to get me in until September). He did have me go back to eating gluten between scheduling the endoscopy (last Friday) and the test today, but now that it's done, I am definitely back to gluten-free.

hawkgirl98 Newbie
hawkgirl98
Posted
  • Author

So to my and my doctor's surprise, my biopsy came back totally normal. Any ideas why this could be??? He is going to have me come in for the genetic test now and see what that shows.

For now I am going to stay gluten free, although because I did not have bad or consistent symptoms, it's hard to tell if I am really feeling all that better. Plus, I was off for 2 weeks post-blood test, then back on for a week before the biopsy and now on again for a week.

It's stupid, but after the blood test, I told all my friends and family I had Celiac, everyone knows now and has been very good about trying to help me adjust, I'd feel pretty stupid if it turns out to be a false alarm and I am not really gluten-intolerant after all. My blood test seemed so strongly positive, though, I just don't get how my biopsy could be so normal!

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

So to my and my doctor's surprise, my biopsy came back totally normal. Any ideas why this could be??? He is going to have me come in for the genetic test now and see what that shows.

For now I am going to stay gluten free, although because I did not have bad or consistent symptoms, it's hard to tell if I am really feeling all that better. Plus, I was off for 2 weeks post-blood test, then back on for a week before the biopsy and now on again for a week.

It's stupid, but after the blood test, I told all my friends and family I had Celiac, everyone knows now and has been very good about trying to help me adjust, I'd feel pretty stupid if it turns out to be a false alarm and I am not really gluten-intolerant after all. My blood test seemed so strongly positive, though, I just don't get how my biopsy could be so normal!

As someone else mentioned above, they can't see the damage done by celiac with the endoscopy. They are just guessing at where to take tissue samples. They may have taken tissue samples of the healthy part of you intestines. OR since you had been of gluten for a month the damage may have healed. There may have not been very much damage to your intestines to begin with. If you caught the celiac fairly soon after your symptoms developed (and it sounds like you did) then you would not have very much damage to the intestine yet. Most people with celiacs suffer for years before they find someone to do tests. You are lucky that you have a family history of it and knew to get tested at the first sign. The blood tests are often false negatives, but very rarely false positive. You were diagnosed with a strongly positive blood test. There's no need to do anymore testing. Really there was no need to do an endoscopy at all. You have celiac disease.

I know it's hard. I went through a denial period myself. But if you keep eating gluten you will do more damage to your intestines leading to malnutriton and possibly cancer on down the road.

ravenwoodglass Mentor
ravenwoodglass
Posted

So to my and my doctor's surprise, my biopsy came back totally normal. Any ideas why this could be??? He is going to have me come in for the genetic test now and see what that shows.

For now I am going to stay gluten free, although because I did not have bad or consistent symptoms, it's hard to tell if I am really feeling all that better. Plus, I was off for 2 weeks post-blood test, then back on for a week before the biopsy and now on again for a week.

It's stupid, but after the blood test, I told all my friends and family I had Celiac, everyone knows now and has been very good about trying to help me adjust, I'd feel pretty stupid if it turns out to be a false alarm and I am not really gluten-intolerant after all. My blood test seemed so strongly positive, though, I just don't get how my biopsy could be so normal!

False negatives with both blood and biopsy are not uncommon at all. You have 22 ft of small intestine and the damage can be patchy and be missed. I would not bother with the gene testing as that could confuse things even more. Commonly only 2 of the 9 celiac associated genes are tested for and if you don't carry one of those 2 genes you will be told you don't have celiac.

Your blood tests were positive, accept the diagnosis and stay on the diet.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      132,141
    • Most Online (within 30 mins)
      7,748
    smkatin
    Newest Member
    smkatin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • 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.