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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,041
    • Most Online (within 30 mins)
      7,748
    Vfoley422
    Newest Member
    Vfoley422
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.