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. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...
    2. knitty kitty
      - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs...
    3. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748
    Tdodge
    Newest Member
    Tdodge
    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

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.