Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Negative Blood Test Results & Negative Biopsies


julzzz

Recommended Posts

julzzz Newbie

Hi

I wonder if others have experienced this situation - my partner has had both negative blood test & biopsy results, but he feels better having a dairy & gluten free diet. His biopsy showed lactose intolerance, but avoiding dairy didn't stop his gastro issues, so he went gluten free.

Is there a chance something else might be wrong? I have suggested depression - hmm he's not real happy with me at the moment - because of other symptoms.

He also suffers from an upset tummy the day after physical work,

any comments appreciated.

Julie


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hi Julie, and welcome.

Yes, it happens often. There is celiac disease, and then there is gluten intolerance. Those who are classified as gluten intolerant test negative on the celiac blood test and biopsy, but react to gluten the same way celiacs do in most respects. It is frustrating for them because they have all the symptoms but can't get the diagnosis. Some believe that if they kept eating gluten long enough these people would become full-blown celiacs. But regardless of the test results, if gluten and dairy bother you you should not eat them. Some people are not fully dairy inolerant but only lactose intolerant. These people can often still eat yogurt, hard cheeses, dairy products that have been cultured and had most of the lactose removed from them, even butter. You just have to experiment and see. For me, the things I could not have were milk, cream, ice cream and frozen yogurt. And I still need a bit of Lactaid to digest cream which I am eating right this minute with some raspberries.

I would give the gluten free and lactose/dairy free diet a good trial before suspecting something else might be wrong.

julzzz Newbie
Hi Julie, and welcome.

Yes, it happens often. There is celiac disease, and then there is gluten intolerance. Those who are classified as gluten intolerant test negative on the celiac blood test and biopsy, but react to gluten the same way celiacs do in most respects. It is frustrating for them because they have all the symptoms but can't get the diagnosis. Some believe that if they kept eating gluten long enough these people would become full-blown celiacs. But regardless of the test results, if gluten and dairy bother you you should not eat them. Some people are not fully dairy inolerant but only lactose intolerant. These people can often still eat yogurt, hard cheeses, dairy products that have been cultured and had most of the lactose removed from them, even butter. You just have to experiment and see. For me, the things I could not have were milk, cream, ice cream and frozen yogurt. And I still need a bit of Lactaid to digest cream which I am eating right this minute with some raspberries.

I would give the gluten free and lactose/dairy free diet a good trial before suspecting something else might be wrong.

Thank you!

I have now done some reading and see the difference between celiac & gi intolerance, and while both manifest the same symptoms their physiological effects can be quite different and I can see how my partner can have negative test results - actually I think it could be a bonus for him, ie hopefully no intestinal damage.

It's similar to the difference between lactose intolerant and a milk allergy - and he's not sure which of these he has, first he has to be free of all symptoms.

Thanks for your time, however I would be interested in knowing about depression and celiac/gi intolerance correlations.

Julie

mushroom Proficient
Thank you!

I have now done some reading and see the difference between celiac & gi intolerance, and while both manifest the same symptoms their physiological effects can be quite different and I can see how my partner can have negative test results - actually I think it could be a bonus for him, ie hopefully no intestinal damage.

It's similar to the difference between lactose intolerant and a milk allergy - and he's not sure which of these he has, first he has to be free of all symptoms.

Thanks for your time, however I would be interested in knowing about depression and celiac/gi intolerance correlations.

Julie

If he is lactose intolerant, then it would indicate to me that he has done damage to the villi in his small intestine, because it is at the tips of the villi that the lactase is produced to digest milk. That being said, if he *has* done damage to his villi he has probably not been absorbing all the necessary nutrients and may well be deficient in such things as calcium, iron, Vitamins D, B12 and other B vitamins like folate. It would be good to have these nutrient levels checked as I believe if he is lactose intolerant he probably does have some intestinal damage. Since I do not know which I have (celiac or GI), having never been tested, I am just going by my own experience. I went through a period for about a year after quitting gluten when I was very depressed, felt like I could cry at the drop of a hat. I insisted that my PCP check my nutrient levels and my iron was fine but my D, B12 and folate were very low--still within normal limits but at the very low end of the scale. I started supplementation and it was like night and day. My depression went away and I had a lot more energy and interest in things. By the way, the first indication I had that things were not right was that I became lactose intolerant, long before I cottoned on to the gluten part (I am a slow learner :rolleyes: )

julzzz Newbie
If he is lactose intolerant, then it would indicate to me that he has done damage to the villi in his small intestine, because it is at the tips of the villi that the lactase is produced to digest milk. That being said, if he *has* done damage to his villi he has probably not been absorbing all the necessary nutrients and may well be deficient in such things as calcium, iron, Vitamins D, B12 and other B vitamins like folate. It would be good to have these nutrient levels checked as I believe if he is lactose intolerant he probably does have some intestinal damage. Since I do not know which I have (celiac or GI), having never been tested, I am just going by my own experience. I went through a period for about a year after quitting gluten when I was very depressed, felt like I could cry at the drop of a hat. I insisted that my PCP check my nutrient levels and my iron was fine but my D, B12 and folate were very low--still within normal limits but at the very low end of the scale. I started supplementation and it was like night and day. My depression went away and I had a lot more energy and interest in things. By the way, the first indication I had that things were not right was that I became lactose intolerant, long before I cottoned on to the gluten part (I am a slow learner :rolleyes: )

Geoff has been lactose intolerant since a small child - many years ago (!) here in australia they used to give each primary school aged child a small bottle of milk daily and because Geoff couldn't drink the free milk he had to go and collect the crate for the rest of the class - this was seen as a positive, maybe getting out of class early! So whereas maybe there has been damage to his villi (but not indicated in his gi biopsies) because of gluten intolerance this wouldn't account wholly for his lactose intolerance because of his history.

He's now thinking about having a soy intolerance, how did you realise you had a soy intolerance?

thanks for your time

mushroom Proficient

Oh how I remember those crates of milk delivered by the milkman in the wee hours of the morning and then sitting out in the hot sun until morning break :blink: . Blech :P They used to make me sick!!! I got a note from my mother that I didn't have to drink them. And no, I was not lactose intolerant then. Straight off the farm where we used to milk our own cows, so unpasteurized...I knew what milk was supposed to taste like.

I became lactose intolerant in the '90's after: (take your pick) quitting smoking; head-on car accident; severe mycoplasma infection. But thinking back, I first got the bloating symptoms after quitting smoking. Maybe Irish Daveyboy is right. But I thought it was corn that was the problem.

After I quit gluten I developed extreme itching and hives. The good folks here on the forum suggested it could be from soy, and when I looked at what I had been doing, the gluten free foods I had been buying were laden with soy. So I cut that out and most of the itching went away. The residual itching was due to potatoes., which I discovered later. By the way, corn still bloats me.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,129
    • Most Online (within 30 mins)
      7,748

    hafa1991
    Newest Member
    hafa1991
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Aussie Celiac
      Sometimes celiacs can also have other things like lactose intolerance which is fairly common. Also research fodmap foods, it's quite complicated but there are some other foods which can cause digestive issues. For me it's too many onions and garlic.
    • Wheatwacked
      You may be reacting to some of the ingredients used to imitate gluten products. I eat Amy's Chilli quite often with no problems. When I eat Bush's chilli beans or Hormel Chilli with the same ingredient list, I get heartburn.  Break out the alka seltzer.   Barillo spaghetti has CORN FLOUR, RICE FLOUR, MONO AND DIGLYCERIDES. Udi's White bread Ingredients - water, tapioca starch, brown rice flour, canola oil, dried egg whites, sugar, tapioca maltodextrin, tapioca syrup, sorghum flour, less than 2% of: rice starch, sorghum grain, flaxseed meal,  gum blend (xanthan gum, sodium alginate, guar gum), apple cider vinegar, apple fiber, molasses, salt, amaranth flour, teff flour, yeast, cultured brown rice, locust bean gum, enzymes Chobani Greek Yogurt Cultured nonfat milk, cane sugar, water, natural flavors, fruit pectin, guar gum, locust bean gum, vanilla extract, lemon juice concentrate.
    • Soleihey
      My TTG was 167 one year ago. Recently had it retested one month ago and it went down to 16. I only recently had an endoscopy done as I was pregnant within the last year. I did not eat gluten prior to this endoscopy as I get very sick. Prior to obtaining the biopsies, the endoscopy said “ diffuse moderately erythematous mucosa to the second part of the duodenum without bleeding.” However, the biopsy came back negative. I assume it’s a false negative as I have also had genetic testing to confirm celiac. However, what would cause the inflammation to the second part of the duodenum and continued positive blood markers if the intestines have healed?
    • TerryinCO
      Thank you for direction.  Eating out is a concern though we rarely do, but I'm prepared now.
    • trents
      This might be helpful to you at this point:   
×
×
  • Create New...