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

Blood Test Result Show "unlikely For Celiac"

CrazyforCandles

Recommended Posts

CrazyforCandles Rookie
CrazyforCandles
Posted

My Blood Test Revealed

Immunoglobulins- IgA 271

I will get the full panel results tomorrow..this is all they had for me today. The lab lady said it showed that "Celiac Disease is Unlikely" Still waiting for the two Biopsy results to come in

Well....if that is true... then why is it that since I eliminated Gluten from my diet

*for the first time in my life

* I actually go to the bathroom each day :) Gross but YAY

* I sleep soundly

* No bloating after meals

* MOST IMPORTANTLY.. my HD is clearing up without antihistimines or steroids!

So if I am not Celiac then why is eliminating Gluten and reducing Salt helping soo much? I'd say it was all in my head but family/friends are quite impressed on how they see my skin clearing up and I'm not itching like a lunatic every minute.

Are Blood Test Results often wrong with this disease??? Confused in Indiana lol

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

Celiac.com Sponsor (A8-M):


quakenbake Rookie
quakenbake
Posted

I'm in the process of being tested myself, but from what I understand false negatives are not uncommon (at least 20-30% of negatives are false, I believe). If you're feeling so great going gluten free, then keep at it. You can even get false negatives on the biopsy, so if a diet change has really helped that much, why go back to eating the gluten and feeling miserable? I plan on just going gluten free myself after my biopsy next Thursday regardless of what my tests say

mushroom Proficient
mushroom
Posted

The celiac blood panel tests for, guess what, celiac disease!!! This is one of the manifestations of gluten intolerance. There are others that do not show up on the test because they do not meet the criteria for specifically celiac disease. Does not mean you do not have a problem with gluten - just means that you do not get to wear that little celiac badge (I always thought that piece of jewelry was rather ugly any way :lol: ) Now, as the pp said, it could be a false negative, or you could be a latent celiac - test you again in a few years and you will show up positive, or you could be a non-celiac gluten intolerant. They really know so little about this disease. All we know is that the test measures what it measures, and whatever it measures you don't appear to have it. But that "IT" is not gluten intolerance, it is the very specific celiac disease as defined by the medical profession and manifested by the test results. Got it?? It has nothing to do with whether or not you, specifically, feel better and improve on a gluten free diet.

CrazyforCandles Rookie
CrazyforCandles
Posted
  • Author

Thank you Mushroom. I was relieved to think my Dermatologist had given me a hope/ answer to this DH problem and in the process solved the rest of the (so I thought) unrelated problems I've had my entire life. When the test came up negative today I was so frustrated, thinking "NOW WHAT?!" Either way, yes, I do feel better gluten free with my IBS problems and sleeping issues so I shall continue, but hope there isn't something else wrong besides.

Not to seem like an idiot but.. So you can have a gluten allergy but not be a Celiac, that much I understand- but what exactly defines you as having Celiac Disease? Is it the extensive damage to the intestines, or a specific cell that makes you diagnosed as celiac disease? Sorry to be a pain.. I am an Optician, so I know about eyes...not this stuff lol

Will keep you posted when I get my biopsy results.

mushroom Proficient
mushroom
Posted

Yes, celiac disease specifically causes damage to the small intestine, to the villi which are the little finger-like projections on the sides. And at the tip of these villi are the cells which produce lactase to digest lactose, which is why if you have extensive celiac damage you are unable to digest lactose products. So the celiac blood tests test for the specific antibodies and the celiac biopsies test for the flattening of the villi (or sometimes erosion or sometimes just inflammation) in the gut. The testing for celiac disease often does not pick up those who suffer DH or neurological damage from gluten (and who knows what other manifestations of gluten intolerance). It is possible to have the so-called IBS-type symptoms from gluten and have a normal endoscopic biopsy.

cassP Contributor
cassP
Posted

Thank you Mushroom. I was relieved to think my Dermatologist had given me a hope/ answer to this DH problem and in the process solved the rest of the (so I thought) unrelated problems I've had my entire life. When the test came up negative today I was so frustrated, thinking "NOW WHAT?!" Either way, yes, I do feel better gluten free with my IBS problems and sleeping issues so I shall continue, but hope there isn't something else wrong besides.

Not to seem like an idiot but.. So you can have a gluten allergy but not be a Celiac, that much I understand- but what exactly defines you as having Celiac Disease? Is it the extensive damage to the intestines, or a specific cell that makes you diagnosed as celiac disease? Sorry to be a pain.. I am an Optician, so I know about eyes...not this stuff lol

Will keep you posted when I get my biopsy results.

wait wait wait a second... did u say u have DH ???? if yes- then you have Celiac...

blood tests run about 20% on the false negatives.

there is still so much the medical community is learning about Gluten Intolerance- they are really just at the tip of the iceberg. i read a medical article the other day- where they are testing children for a totally different antibody i had never heard of! i wanna say it was GLO antibodies- i'll have to go look for the article. but basically they said these gluten intolerant & celiac children had elevated antibodies for @ 2 years before their ttg or antigliadin became elevated.

good luck with your own answers- but as everyone on here will say- listen to your body- it knows best :)

cassP Contributor
cassP
Posted
Open Original Shared Link
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


CrazyforCandles Rookie
CrazyforCandles
Posted
  • Author

Thank you CassP. Not 100% positive that the rash I've had for 4 months is DH but my Derm def thinks it looks like it that's why he dismissed my GP's original diagnosis of Contact Dermititis and did immediate biopsys from two spots on my arms..( which are the worst of my body, next stomach and legs). Between my life long problems ( IBS symptoms, anemic, sleeplessness,trouble conceiving w/o any obvious reason, etc) and the rash he was pretty sure that I was on the right track guessing Celiac and HD. THANK GOD FOR THE INTERNET! If I had not done my own research I would still be on steroids, antihistimines, and hopelessly itching. I found an identical rash of HD after looking for hours online at images and thought "OMG THAT'S IT!".

My fear is that my father passed last year from Gall Bladder Cancer and suffered thyroid/ stomach issues for at least a decade before then and my Aunt (his sister) had 6 inches of her intestines removed for blockages...

Wouldn't their doctor's have tested them for celiac disease or is that not common to do? This is strictly a heriditary disease right?

My guess is that they both had/have it and never knew. My father was only 54 when he passed and my Aunt was 55 when she had her near-death experience. What is in store for me :( It is very worrying.

GFinDC Veteran
GFinDC
Posted

DH (dermatitis herpetformis) is a skin condition only celiacs get. End of story, if you got DH you gotz celiac too.

nora-n Rookie
nora-n
Posted

Yes, DH= celiac, end of story.

By the way, with DH you ahve ttg-3 antibodies and these do not show up on the ttg-2 blood tests.

With gluten ataxia, one has ttg-6 antibodies and they have no routine tests for that either.

the tests are not perfect.

The blood test you list here, total IgA, is NOT a celiac test. It is just a total IgA test. Nothing to do with celiac.

cassP Contributor
cassP
Posted

Thank you CassP. Not 100% positive that the rash I've had for 4 months is DH but my Derm def thinks it looks like it that's why he dismissed my GP's original diagnosis of Contact Dermititis and did immediate biopsys from two spots on my arms..( which are the worst of my body, next stomach and legs). Between my life long problems ( IBS symptoms, anemic, sleeplessness,trouble conceiving w/o any obvious reason, etc) and the rash he was pretty sure that I was on the right track guessing Celiac and HD. THANK GOD FOR THE INTERNET! If I had not done my own research I would still be on steroids, antihistimines, and hopelessly itching. I found an identical rash of HD after looking for hours online at images and thought "OMG THAT'S IT!".

My fear is that my father passed last year from Gall Bladder Cancer and suffered thyroid/ stomach issues for at least a decade before then and my Aunt (his sister) had 6 inches of her intestines removed for blockages...

Wouldn't their doctor's have tested them for celiac disease or is that not common to do? This is strictly a heriditary disease right?

My guess is that they both had/have it and never knew. My father was only 54 when he passed and my Aunt was 55 when she had her near-death experience. What is in store for me :( It is very worrying.

yes- it's very likely that your dad and aunt had Celiac or Gluten Intolerance... and no- it is not common for doctors to consider Celiac or test for it- :angry: it should ALWAYS be considered with those symptoms ALWAYSSSS

basically unless u live in Italy or Finland- you have to be your own investigator and test orderer

its beyond enraging to me how behind the medical community is- especially because i want family members tested- and they're stubborn.. why should they listen to me when they would have to fight their doctors for a test??!!!??

and YES- it's genetic. it does need an environmental or food trigger, but it is an inherited predisposition

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

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    2. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    4. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    5. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,298
    • Most Online (within 30 mins)
      7,748
    drewbee2294
    Newest Member
    drewbee2294
    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

    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
×
×
  • 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.