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

Confused!

clhsc

Recommended Posts

clhsc Apprentice
clhsc
Posted

I am so confused! I just got the results of my blood test and they came back normal. How can this be? I have proven to myself time and time again that I have some problems with digesting wheat and wheat products.

At my appointment, my doctor said that I have classic celiac symptoms and was obviously having some malabsorption problems. My response to the diet (when I did it before my exam and now) have been overwhelmingly positive. What's the deal? I am confused and frustrated because I feel like I am back to square one. Should I go through with the colonoscopy (scheduled for Dec. 4) and the scope (will talk about it on Dec. 4) or cancel? Should I stay on the gluten free diet? Is it possible to have celiac disease or gluten sensitivity without a positive blood test?

I know it's not all in my head because I try to convince myself that I feel better than I do. I need some advice - quick - before I completely lose it! Please help me!

Thank you!

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

It is not uncommon for blood tests to show nothing and a person has very obvious symptoms after ingesting gluten. I can not even try and count all the members on the board are self diagnosed, because of negative blood work and negative biopsy. If you still have other concerns, have the other testing done to be sure there are not other issues along with the "gluten intolerance". Stay on the gluten free diet and never have to get a label of "pre-existing condition" for health insurance or pay a higher premium for life insurance.

I know it is very frustrating , but it may the nicest gift not to have a paperwork diagnoses. ;)

L.

Guest nini
Guest nini
Posted

you do have your answer you know... positive dietary response is more valid than any diagnostic tool out there. The rate of false negatives with the blood tests is way higher than the medical community will publicly acknowledge. If you have already been gluten-free before testing that would skew your test results, and since you've already been playing around with the gluten-free diet, if you do the biopsy, the chances are you could easily get a false negative with that as well. My personal opinion is that how your body responds to the diet is a much clearer indication of what is going on then any tests... reason? The tests are only looking for specific markers which only show up in the latter (more final) stages of the disease, so you may have caught it early enough that your body is reacting, but you haven't yet produced enough of the antibodies to show up in conventional testing. You may be IgA deficient, which would also make your results appear negative...

More and more Dr's are starting to recognize dietary response as a valid diagnostic tool when the blood tests and even biopsies are inconclusive.The advantage of not having an "official" dx is that it does not appear on your permanent medical records and you can't be denied health insurance or life insurance coverage because of it.

I doubted my "self dx" for too long and I let an ignorant Dr. talk me into going back to eating gluten when I was pregnant with my daughter, and I ended up having a very complicated pregnancy, a premature baby, very nearly died, and it took another 3 years before I was OFFICIALLY dx'ed with Celiac, by that time I was VERY ill. Don't wait until you are extremely ill to change your diet and accept that you are gluten intolerant. You do not need a official dx from a Dr. in order to stay on the diet. It's all up to you.

mommida Enthusiast
mommida
Posted

Thanks Nini,

You said that way better than I did. :D

L.

clhsc Apprentice
clhsc
Posted
  • Author

Thanks for your help! I truly appreciate it. :)

What is an IgA deficiency?

Guest nini
Guest nini
Posted
Thanks for your help! I truly appreciate it. :)

What is an IgA deficiency?

Open Original Shared Link

here's a link that explains it... a lot of people that have had false negatives for Celiac have been found to have IgA deficiency, which puts you at risk for other autoimmune disorders as well. The bottom line is that it doesn't matter if it's Celiac or not, if your body is reacting to gluten, you need to avoid it. If you wish to be tested for other autoimmune disorders that is fine, but you don't have to be eating gluten for any of those tests... and a lot of the autoimmune disorders, like Lupus and Arthritis, have shown improvement of symptoms on a gluten free diet, so is it Celiac??? Maybe not, is it something else? Maybe. Is your body reacting to gluten? YES. Do you need to be gluten free? Yes. Can you still have other autoimmune disorders? Yes.

tarnalberry Community Regular
tarnalberry
Posted

I'd have a couple questions for more details before I could be helpful:

1) Which tests were run and what were the results?

2) Had you been gluten free prior to blood testing, and if so, for how long gluten-free and how long back on gluten?

In the end, however, a postive response on the dietary challenge is the most important - a blood test does not overrule your body's response.

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

Celiac.com Sponsor (A8-M):


clhsc Apprentice
clhsc
Posted
  • Author
I'd have a couple questions for more details before I could be helpful:

1) Which tests were run and what were the results?

2) Had you been gluten free prior to blood testing, and if so, for how long gluten-free and how long back on gluten?

In the end, however, a postive response on the dietary challenge is the most important - a blood test does not overrule your body's response.

1. They ran the Celiac Disease Andibody Screening with Reflex Profile, Sedimentation Rate-Westergren, and C-Reactive Protein (Quantative). The C-Reactive Protein was low (.80 mg/L) out of a range of 0.0 to 4.9. I couldn't read the others on the fax so I have called the office to find out the numbers.

2. I had been gluten-lite (very lite - like if I accidentally ate some, none on purpose) since July.

I am so glad I found this forum - it's nice to know there are others like me out there!

Ursa Major Collaborator
Ursa Major
Posted

Unfortunately, you have one of those ignorant doctors who doesn't know that being gluten-free for four months would result in a false negative, even if you would have tested positive in July. And it is very likely that the endoscopy will be negative for celiac disease as well, same reason.

However, if you want to really know and have an 'official' paper, try Open Original Shared Link. You don't have to be eating gluten for their test, which is way more sensitive than conventional testing.

Also, it doesn't look like your doctor ordered the right tests, anyway. Not that it would have mattered.

The bottom line is, that you feel terrible eating gluten, and feel much better without it. That is enough evidence of at least gluten intolerance, anyway. Stay off it (and don't be talked into a gluten challenge, either) and be happy you figured it out.

clhsc Apprentice
clhsc
Posted
  • Author
1. They ran the Celiac Disease Andibody Screening with Reflex Profile, Sedimentation Rate-Westergren, and C-Reactive Protein (Quantative). The C-Reactive Protein was low (.80 mg/L) out of a range of 0.0 to 4.9. I couldn't read the others on the fax so I have called the office to find out the numbers.

2. I had been gluten-lite (very lite - like if I accidentally ate some, none on purpose) since July.

I am so glad I found this forum - it's nice to know there are others like me out there!

Here are the results. Please advise as to what the heck this means...

Celiac Antibody Screening:

IgA: 1 with Negative being 0 - 4

TIgA: 1 with Negative being 0 - 3

Immunoglobin A: 86 with ranges of 70 - 400

Sedimentation Rate: 1 with ranges of 0 - 20 (Mom borderline Lupus)

C-Reactive Protein: 0.8 with ranges of 0 - 4.9 (Dad has colitis)

aikiducky Apprentice
aikiducky
Posted

What Ursula said - you have been gluten free for too long to get a positive test result. In order to have a positive test at this point you would need to go back on gluten, and not gluten lite but three four slices of bread every day, for several months. Personally I wouldn't do it, but it's your decision.

Pauliina

tarnalberry Community Regular
tarnalberry
Posted
1. They ran the Celiac Disease Andibody Screening with Reflex Profile, Sedimentation Rate-Westergren, and C-Reactive Protein (Quantative). The C-Reactive Protein was low (.80 mg/L) out of a range of 0.0 to 4.9. I couldn't read the others on the fax so I have called the office to find out the numbers.

2. I had been gluten-lite (very lite - like if I accidentally ate some, none on purpose) since July.

I am so glad I found this forum - it's nice to know there are others like me out there!

Well, what tests are in the celiac screening? It should have included, at least, antigliadin IgA, antigliadin IgG, tissue transglutamase (tTg) IgA, tTg IgG, and total IgA.

If you've been essentially gluten-free for five months, then there's a good chance that your tests would be negative, even if you had celiac disease. You can't show antibodies to something that isn't in your body, even if your body *would* react if that thing were to be there.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
×
×
  • 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.