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 Tests- Half Positive, Half Negative


arkoflove

Recommended Posts

arkoflove Apprentice

Hi there,

I'm brand spankin new to all of this...I went to the Dr 3 weeks ago for tummy troubles that I have noticed since January, and then as I thought on it more, have had to some degree for the past 1.5 years.

My Dr decided to run a Celiac panel on me, to my suprise, and when the test results *finally* came back, they were half positive, half negative. :huh: The Gliadin IGA and IGG werre both positive. The other tests were negative. I've been suffering extreme consitpation that would turn into diarreah, massive bloating (looked 6 months pregnant by the end of every day) and very embarrasing constant gas. Also fatigue, depression, irritability...The Dr also found I had extremely low blood sugar even though I'd eaten that day...So in addition to the Gluten Intolerence/Celiacs, I seem to have reactive hypoglycemia where I crash after eating a simple carb/simple sugar food.

I went off gluten when I was waiting on the test results after reading so much info on it. One day I forgot and ate a half a piece of cake at church- up until then I had been improving, but that day was bad all over again. After that I stuck to it better, and now am at a full week off gluten. I am feeling 90% better, things are moving appropriately, bloating is gone, depression lifted, fatigue gone, irritability gone...it's amazing! (I am also eating every 2 hours for the blood sugar issue) I've gone down 5 lbs also.

My friend who is a nurse talked to the GI Dr at her work, and she really thinks I should proceede with the "Gold Standard" of testing by getting my biopsy done. My Dr's thoughts are why go through the extra testing if my tests indicate that I do have a gluten issue going on, and if the diet changes things? I'm feeling my Drs suggestion the most. It is hard though to live in a time where we can get a diagnosis confirmed and re-confirmed....I am an info-holic so I am tempted, but I in no way want to eat all that stuff again just to go get testing!

Here is the funny thing. I only started to have the extreme issues after I started dieting in January...I went low carb high protien, and then started the medditerranian diet (with lots of whole wheat). Whenever I broke my diet I always felt worse and immediately went up 5 lbs...One time I went and had pizza (after being 'good' for a week) and ended up in the bathroom all evening.

Anyways, I'm at the one week mark gluten free and see a great difference. Any thoughts to share with me? Thnaks for your time!!

-Megan


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Hi Megan,

Tissue transglutaminase and endomysial antibodies are more specific for celiac disease than anti-gliaden, but it's not "normal" to be making antibodies against gluten, so... at the very least, you're definitely intolerant to it. That's not uncommon in people with other autoimmune disorders like type I diabetes and Hashimoto's disease. If a positive biopsy would help you stick to a gluten-free diet then you might want to pursue that. However... if you're feeling better that might be incentive enough! It was for me. You could also think about doing a genetic test. When I found out that I have the DQ8 gene I felt like I made a really smart decision to stay on a strict gluten-free diet. The important thing is just to feel confident about your decision... you'll need it when you eat outside of your own home!

ps - Welcome to the group ;)

ravenwoodglass Mentor

I agree with your doctor. You eliminated gluten and felt better, you get sick when you eat it and you have positive blood work. You would need to go back on gluten for a couple months to get the biopsy done and even then it could be a false negative. Personally I would consider myself diagnosed and get on with healing.

Gemini Experienced

My Dr decided to run a Celiac panel on me, to my suprise, and when the test results *finally* came back, they were half positive, half negative. :huh: The Gliadin IGA and IGG werre both positive. The other tests were negative.

Megan...what your testing shows is you are reacting to gluten. These are the two tests that are used to monitor adherence to the gluten-free diet and these need to be as low as possible. The fact that the others were negative most likely means you have not accumulated enough damage to your intestines YET to show on the other tests. This would be the natural progression if you continued to eat gluten. If you decide to have the endo done to satisfy your mind, there is a very good chance that it will come back negative, which in no way means you do not have Celiac. You may have caught it very early, which is a good thing but be prepared that the endo may be negative. You never know but don't base your decision on whether to go gluten-free or not, for the rest of your life, on a negative biopsy. If you are symptomatic, then a dietary trial is as good as any endo in backing up your blood work.

tarnalberry Community Regular

If banging your head into a wall hurts, would you choose to continue banging your head, just because your doctor said you hadn't suffered any brain damage yet?

(I'm not a fan of the "well, you do better on the diet, obviously, but maybe you can still eat gluten" line. Why the heck would I, if it makes me feel bad?)

If it makes you feel any better, my tests were far more inconclusive than yours. The lab would not give me specific numbers (I called them, and said "they didn't know the actual numbers if the tests were negative"! WTF?!), and only my anti-reticulin antibodies were positive. (Not exactly classic diagnostic use here.) But gluten-free made me feel better, gluten made me feel worse. I've been gluten free for nearing six years now.

arkoflove Apprentice

Wow, thank you for all the responses!!!

Now for another little question- If I am feeding my kids, and have touched their food, and then eat something, would that cross contamination be enough to have a reaction? I gave my one year old some french bread, which she gave back to me half chewed, and then I ate some grapes (church potluck). That evening I had the bloat and gas again (although not as extreme as before) and the next day it lingered, feeling fine today. Is that really enough to cause a reaction? (Its those mind games, you know? As a woman (sorry guys) and being on my cycle IYKWIM...)

I was thinking in regards to my tests that we did perhaps catch it very early on, becasue my vitamins were great. Although I take a ton of vitamins that could make up for it. Oh, and I also suffered 2 miscarriages between my 2 children, and then infertility when trying to concieve again. I am currently wading through more infertility challenges, along with wierd cycles and messed up hormones. All perhaps tied to Celiacs possibly?? I had a thyroid problem after I had my son, but it went away after about 8 months. Ever since my tests have been normal but on the "high" end...

Thank you again for all your help and welcoming me!!!

-Megan

ravenwoodglass Mentor
Wow, thank you for all the responses!!!

Now for another little question- If I am feeding my kids, and have touched their food, and then eat something, would that cross contamination be enough to have a reaction? -Megan

Short and sweet, yes. Make sure you wash your hands immediately if you have to handle gluten .


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



Celiac.com Sponsor (A8-M):



dream77 Apprentice
My Dr decided to run a Celiac panel on me, to my suprise, and when the test results *finally* came back, they were half positive, half negative. :huh: The Gliadin IGA and IGG werre both positive. The other tests were negative.

Gemini,

Your lab results look exaclty like mine.

What are your symptoms ?

Mine are

neuropathy, parasthesias.. fatigue.

I have hashimotos as well.

My lab work only shows deficiency for Vit D and Ferritin but everything else looks great.

I decided to no do a biopsy but just start on a gluten free diet.

tarnalberry Community Regular

Yes, contamination is going to cause intestinal damage. Think of it as poison - you don't really want to get any in you.

And yes, celiac disease is connected in higher rates of infertility as well as other auto-immune conditions (some of which can affect the thyroid).

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,767
    • Most Online (within 30 mins)
      7,748

    Stacy77
    Newest Member
    Stacy77
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @Bebee, Yes, Celiac Disease has genetic commonalities with MS, hypothyroidism, arthritis, Reynaud, and rosacea.   Usually a gluten challenge is done before endoscopy with biopsies taken,  however I would not recommend a gluten challenge before endoscopy with biopsies for you since you have been gluten free for so long and have so many concurrent autoimmune diseases.   You can still have the endoscopy with biopsy samples taken now.  After several months with dietary changes, you can have another to compare results and check that intestinal health has improved.   You can get a genetic test for Celiac disease which shares genetics with other autoimmune diseases that you have.  Eating gluten is unnecessary for genetic tests. For the rosacea, get checked for SIBO (Small Intestinal Bacterial Overgrowth) that could be causing gastrointestinal symptoms as well as causing skin issues.  Our skin is a reflection of our gastrointestinal health.     Following the Autoimmune Protocol Diet has been helpful in keeping my own rosecea, eczema, and dermatitis herpetiformis and other autoimmune diseases in check.   Be sure to be checked for nutritional deficiencies that occur easily in gluten free and dairy free diets. Keep us posted on your progress! References: Clustering of autoimmune diseases in patients with rosacea https://pubmed.ncbi.nlm.nih.gov/26830864/ And... Celiac disease and risk of microscopic colitis: A nationwide population-based matched cohort study https://pubmed.ncbi.nlm.nih.gov/36939488/
    • Bebee
      I am new here, I have been diagnosed with Microscopic Colitis (Lymphatic) years ago and have been gluten-free, DF since, but I still can have occasional bouts of diarrhea (still trying to figure that out).  I also have MS, Hypothyroid, Arthritis, Reynaud's and my rosacea has been acting up lately.  What treatment is suggested to help with rosacea?  I would like to know too if there is a test for celiac if you have been gluten-free?   Thank you, Barb    
    • bluebird2032
      Gluten free/ non dairy , low calorie pudding ideas please?
    • K6315
      Well, that's interesting. I am lactose intolerant and have been managing that for years. I'd be interested in seeing if that changes once I feel better from not eating gluten (one thing at a time for now, though). Helpful to hear about the avenin. I will do some digging and pose that to the dietitian. Grateful for your feedback.
    • kate g
      Recently my daughter ate in nandos harlow I rang in advance to speak about the celiac protocals and learned that childs portion chicken nandinos is cooked on the same grill as garlic bread even if they are celiac! Even if you clean it this is not good practise and will be making many children ill. I learnt adults butterfly chicken cooked on a grill purely for chicken.  This is fine and what we ordered however nandos need to take note of your practises for the safety of celiac children. my daughter has been ill from their nandinos chicken before and i emailed head office and they wouldnt accept responsibility 
×
×
  • Create New...