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

Biopsy Results "normal"

kathy1

Recommended Posts

kathy1 Contributor
kathy1
Posted

My husb was dx in dec via a blood test.He has never had any symptoms of celiac disease. He had a biopsy last week and the Dr called today stating that the biopsy came back normal. the Dr then said that a gluten-free free diet was not necessary.The Dr stated that some people can carry the gene but never get the disease.

Any advise???

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

was he being tested to see if he carried the gene, or was he being tested to see if he actually had celiac disease?

christine

Guest nini
Guest nini
Posted

In my opinion if he has a positive blood test, he has it, Period. The biopsy can ONLY rule it in IF they happen to find damage, but it cannot ever rule it out. NEVER.

Since he's already had the tests, Definitely he needs to go on the diet and stick to it 100% for life. The Dr. that told him he doesn't need to be on it is silly. Sorry. You have symptoms, your blood test shows you have it, but we haven't found any damage YET so you don't need to be on the diet. PHOOEY.

Get him on the diet ASAP. SO WHAT He didn't have any of the "typical" Celiac symptoms BUT why was he tested in the first place? Celiac can manifest in so many ways that are atypical, and even the experts are continuing to be surprised with asymptomatic people that have this. Consider it a blessing that he found out BEFORE getting significant damage and getting seriously ill...

Read Dangerous Grains... this book will explain a lot...

kathy1 Contributor
kathy1
Posted
  • Author
was he being tested to see if he carried the gene, or was he being tested to see if he actually had celiac disease?

christine

I am not sure what blood tests my husb had in dec. Only that the Dr called and said he had celiac disease. Now he has had a normal biopsy.

He was tested only because his mother has it and since he was at the Gi for another issue, the Gi said lets rule it out.

Can I guess now that he does carry the gene only?

Guest nini
Guest nini
Posted
I am not sure what blood tests my husb had in dec. Only that the Dr called and said he had celiac disease. Now he has had a normal biopsy.

He was tested only because his mother has it and since he was at the Gi for another issue, the Gi said lets rule it out.

Can I guess now that he does carry the gene only?

His mother has it and his bloodwork was positive... hmmmmmm

he has it.

Find out specifically what tests were done, and which tests were positive.

I have it, my daughter has it even though her blood tests were inconclusive...

Yes, I do believe that especially if he is genetically predisposed to it (which he is) that he does not need to be eating gluten.

Rachel--24 Collaborator
Rachel--24
Posted

Find out what bloodtests were done and what the numbers were. In my opinion if the bloodtest was positive he's got Celiac. Especially if he's got positive bloodwork and family history. The biopsy is a "hit or miss"...it can only rule Celiac in but cannot rule it out. There are many reasons why a biopsy can come back negative even if he has Celiac. The damage could have been missed...they only pull out a few samples but there could be damage in other areas which were not biopsied. He may have Celiac with no intestinal damage YET....early stage of the disease. The person looking at the samples could have made an error. The point is taht a negative biopsy doesnt mean he does not have Celiac. I've heard of people in the same situation...positive bloodwork and negative biopsy. Doctor tells them they dont have it and a few years later they have a positive biopsy. What that means is that because they took the doctors advice the first time....they ended up with damage...which is not a good thing.

Guest nini
Guest nini
Posted

you said it better than I could Rachel...

exactly my point, people got a positive blood test but negative biopsy and on advice of Dr. continued to eat gluten and then several years later when they were much sicker, biopsy is then positive.

Do you want to stop it now in the early stages before your husband and your son get ill, or do you want to wait until they are so sick that there is visible damage? I would rather be proactive and stop the vicious cycle now.

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

kathy, tell your doctor that you would like a copy of his and your (was it son?) anyway, that you want a copy of the blood test results to have in a file at home. if he isn't exactly good at explaining things, post the results on here and i am sure someone can tell you what the tests and the numbers mean.

christine

kathy1 Contributor
kathy1
Posted
  • Author

Thanks for the info. I am trying to comprehend so much in a short time, I am finding it overwhelming! We are trying make educated decisions for both my husb and my son. That is why I have so many questions.

I have to fully understand it before I can accept it and for me that means ruling out the other options.

I have already requested a copy of my sons test results. I will call my husb Dr and ask for his as well.

Is it "possible" to have the gene, and no symptoms of celiac disease, eat gluten food and never get any intestinal damage?

Thanks

Rachel--24 Collaborator
Rachel--24
Posted
Is it "possible" to have the gene, and no symptoms of celiac disease, eat gluten food and never get any intestinal damage?

A large amount of the population carries the gene but obviously not everyone with the gene gets Celiac. A person with a family member with Celiac has a higher chance of also getting Celiac. A person who has a family member w/ celiac and also has had a postive blood test themselves has a high probabilty of having Celiac. Not having symptoms doesnt really mean anything. There are plenty of people who have completely flattened villi seen on biopsy but can eat gluten all day long w/out feeling sick. My doctor told me these people will eventually become symptomatic....its only a matter of time.

Guest nini
Guest nini
Posted

is it possible? well, theoretically yes, but given how little the medical community really knows (or agrees on) about Celiac, do you want to take a chance that the gluten is not doing damage, especially with positive results and genetic predisposition? Not me...

but I'm coming from a different place than you. I know what it's like to be sick all my life and not have an answer why until I was so sick I almost died. And watch my little baby fail to thrive and have the so called "experts" tell me that she did NOT have celiac but IBS and to give her more wheat... same idiotic thing my dr.s told me several years earlier...

julie5914 Contributor
julie5914
Posted

Yes, you can have the gene and not have the disease. Usually the disease is activated at some point, usually a stressful time for the body, if it is activated at all. It is the same gene I believe that causes diabetes, but not everyone with celiac has diabetes and vice versa.

Usually, however, the celiac blood test is a panel that tests for anitbodies to gluten and a specific one (either the EMA or the tTG) that causes damage to the instestine. If these are positive, celiac is 98-99% there, symptoms or not. Some people have inconclusive blood tests, where part of the panel is positive and part is negative. This is sometimes called gluten intolerance but not celiac disease. Either way, most people will on this board will tell you that if any part of this blood test is positive, it is best to stay away from gluten.

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.