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 Tests Vs Biopsy

heartofgold

By heartofgold
in Doctors

Recommended Posts

heartofgold Rookie
heartofgold
Posted
:D Hi I am new to the forum. I live on Ontario, Canada. This November I had pains and spasm in my abdomen and eventually a month ago I had a gastroscopy. Before the gastroscopy, I had blood tests which showed high levels in the blood that indicated celiac disease. I had the biopsy of course when i had the gastroscopy and it was negative yet the blood worki was positive. I was also told i had chronic gastritis. My question is .. has anyone else had the positive blood tests and negative biopsy? I had 3 different blood tests the usual i am sure. I am on a gluten-free diet .. learning all about it but I noticed my abdomen is pretty hard to the touch and bloated. I am watching everything for the hidden gluten. I would appreciate some advice on the blood tests and if anyone else has the hard abdomen and bloating and if you think that is more related to the gastritis or the celiac. Thanks for reading this .
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
:D Hi I am new to the forum. I live on Ontario, Canada. This November I had pains and spasm in my abdomen and eventually a month ago I had a gastroscopy. Before the gastroscopy, I had blood tests which showed high levels in the blood that indicated celiac disease. I had the biopsy of course when i had the gastroscopy and it was negative yet the blood worki was positive. I was also told i had chronic gastritis. My question is .. has anyone else had the positive blood tests and negative biopsy? I had 3 different blood tests the usual i am sure. I am on a gluten-free diet .. learning all about it but I noticed my abdomen is pretty hard to the touch and bloated. I am watching everything for the hidden gluten. I would appreciate some advice on the blood tests and if anyone else has the hard abdomen and bloating and if you think that is more related to the gastritis or the celiac. Thanks for reading this .

Hi, and welcome to the forum.

I have never had the testing myself, but I understand there are at least four tests that are usually performed. Perhaps you could post your test results and the ranges the lab gave so that the "experts" here could look at them. It is not unusual to have positive blood and negative biopsy; the biopsy is done as confirmation of the blood work. But the damage can be patchy in the gut and if they don't take enough samples, or even if they do, they can miss the damaged areas. Gastritis is inflammation and may or may not go away. At any rate, the symptoms from celiac do not resolve immediately. Depending on the degree of damage it may take months or years. Usually you will notice some improvement within a few months. But it is possible that you have some other food intolerances that were being disguised by the gluten. I would suggest going back to a very simple diet of chicken, fish, vegetables, fruit and rice, and if you stabilize on that then you can add other things back in, one at a time. For the moment I would suggest avoiding all milk products, corn, soy and the gluten-free grains (which can be hard to digest initially), and see how you manage with that. I would suggest you also take a probiotic capsule and some digestive enzymes which can be helpful to overcome the disorder in the gut and help things along.

Report back to us and let us know how you are doing.

mimommy Contributor
mimommy
Posted

I just wanted to say that many of the members here, including my daughter, have had pos. blood tests and neg. biopsies. As Mushroom said, it can be 'patchy' damage to the villi and a gamble as to whether or not your doctor took the biopsy in just the right spot, which is one of the reasons why this topic has been so deeply debated. You may need to take the test results to another doctor for a second opinion--I did and they were actually positive. It can greatly depend on who is looking at it, who's opinion you get. Don't be afraid to advocate on your own behalf, by taking the intiative to go completely gluten free and/or seeing another doctor if you feel it is needed. It's your body!

Also, when she first became symptomatic, my daughter's stomach was hard. But only for a short period of time.

Good luck!

Lisa Mentor
Lisa
Posted

Excellent advise from mushroom! Here is some information on blood testing:

Open Original Shared Link

heartofgold Rookie
heartofgold
Posted
  • Author

Thanks so far for the great info it is so discouraging at first when you don't know much about celiac plus the fact the stomach biopsy said chronic gastritis and I have never had a problem over the years with any stomach/bowel issues.

I am in ontario canada so i am not sure how to read these tests meaning i have seen some blood tests posted but I could not compare anything cause the labs may post differently here. LIke you said maybe someone can help me on it here .

Gliadin AB IgG 36 H (which is high i am sure ) then it says 20 KEU/L CMH

Gliadin Ab IgA 21 H 20 KEU/L CMH

tTransglut IgA 45 H 20 KEU?L CMH

Interpretation Positive findings of IgA Endomystal antibodies (IgA Transglutaminese) are essentially diagnostic of Celiac Disease or Dermatitis Herpatiformis. The IgA Endomystal antibodies should disappear with a strict adherence to a gluten free diet and can be used to monitor adherence to diet.

*** i know i dont have the D.H. skin disease.

Again i hope someone can interrupt this as it is a canadian hospital that did them.

Also what about corn chips gluten free do you think they are too hard on the system at first for snacks .. like is it better to just eat the fish chicken, rice, veggies, fruits .. salads type of thing at first. thanks again

mushroom Proficient
mushroom
Posted
Also what about corn chips gluten free do you think they are too hard on the system at first for snacks .. like is it better to just eat the fish chicken, rice, veggies, fruits .. salads type of thing at first. thanks again

I would do without the corn chips for a while since corn is also one of the top allergens. For snacks you could try a handful of almonds, perhaps some rice crackers with hummus dip, but I personally wouldn't go much further than that to start. You want things with low allergic potential and easy to digest.

heartofgold Rookie
heartofgold
Posted
  • Author

thanks mushroom. i was told to go easy on the dairy by a lady in the local health food store who has celiac. Shesaid it is hard on the immune system. what about fruits any i should stay away from since i have the gastritis too. i was thinking something like an orange would be very acidic. I have being eating lots of applesauce and thought maybe some peaches it their own juices? hope someone can help me with the blood tests. i just asked for a copy from the doctor's secretary so they are more in doctor's terminology . it was not like they sent me them which some doctors do in the emails. :)

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Peaches sound good, also pears, apricots, plums. For vegetables you can do purees of things like parsnips, sweet potatoes, carrots, potatoes, and in combinations that tickle your fancy; get your greens in from things like spinach and swiss chard; I would avoid cabbage for now. I know, it sounds a bit like baby food :P , but you will need to baby your tummy for a while to let it recover. Good luck with your healing.

heartofgold Rookie
heartofgold
Posted
  • Author
Peaches sound good, also pears, apricots, plums. For vegetables you can do purees of things like parsnips, sweet potatoes, carrots, potatoes, and in combinations that tickle your fancy; get your greens in from things like spinach and swiss chard; I would avoid cabbage for now. I know, it sounds a bit like baby food :P , but you will need to baby your tummy for a while to let it recover. Good luck with your healing.

mushroom do you know where else i can post the blood tests. I see no one has entered anything on here.thanks

mushroom Proficient
mushroom
Posted
mushroom do you know where else i can post the blood tests. I see no one has entered anything on here.thanks

Try posting them in " Celiac Disease - Pre-Diagnosis, Testing & Symptoms "

ravenwoodglass Mentor
ravenwoodglass
Posted
mushroom do you know where else i can post the blood tests. I see no one has entered anything on here.thanks

Hello and welcome. People may not be responding because Mushroom is putting it so well. :) I would add in some peas and green beans to the veggie suggestions. Your gastritis is likely a result of the celiac. After you have had a bit of time to heal then go ahead and add in some other fruits and veggies and see how they do. If you do not normally eat a lot of fruits and veggies go slow with adding them into your diet and make sure that they are cooked. If your not digesting well then try the puree but I never found it needed. Buckwheat is also a really good easy to digest protein and carb source. If you were a fan of cream of wheat then cream of buckwheat will be a good sub.

Welcome to the board and ask any questions you need to.

heartofgold Rookie
heartofgold
Posted
  • Author
Hello and welcome. People may not be responding because Mushroom is putting it so well. :) I would add in some peas and green beans to the veggie suggestions. Your gastritis is likely a result of the celiac. After you have had a bit of time to heal then go ahead and add in some other fruits and veggies and see how they do. If you do not normally eat a lot of fruits and veggies go slow with adding them into your diet and make sure that they are cooked. If your not digesting well then try the puree but I never found it needed. Buckwheat is also a really good easy to digest protein and carb source. If you were a fan of cream of wheat then cream of buckwheat will be a good sub.

Welcome to the board and ask any questions you need to.

Thanks Ravenwoodglass. My comment was regarding if anyone could understand my blood tests. You are right though Mushroom is helpful and you are too . i see you have been through a lot yourself and your family. i am trying to eat as plain as possible meaning natural foods like the veggies bananas pears in water applesauce i find is ok and chicken and fish. i introduced some rice bread both plain and raisin for breakfast. i am keeping the dairy intake lower too but did buy some soy milk. thanks again R.

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. 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...
    2. 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...
    3. 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...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      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...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,291
    • Most Online (within 30 mins)
      7,748
    DottieLyn
    Newest Member
    DottieLyn
    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

    • 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.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.