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
      129,994
    • Most Online (within 30 mins)
      7,748

    Gma4anna
    Newest Member
    Gma4anna
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • The Logician
      To Trent’s, yes, from what i’ve read it is not uncommon for digestive systems to become less tolerant to gluten over time. Many types of sensitivity or allergies arise in older people who never had a problem. I don’t see why you are focusing on anything but the fact that after years of my sensitivity to gluten, for whatever reason , it has disappeared after a bout of antibiotics. What i’ve read is antibiotics can make gluten sensitivity worse. In any event, in my case, if I can still eat all the wheat products I want with no reaction after a month or more since my hospital stay this is something that should be investigated. Time will tell.
    • The Logician
      I had a UTI, blood cultures are standard to insure that the infection does not get in the bloodstream which can lead to sepsis and death. In my case there was bacteria in my blood which necessitated 48 hours of antibiotic IV
    • Wends
      Hi Cameo674. just read your post. Well wishes to a correct diagnosis so that you can get on track to healing and feeling better. Personally I know it’s good to have the eosinophilic disorder ruled out too, as this can show anti-ttg igA antibodies too. But usually without the anti-gliadin antibodies unless gliadin is an allergen for you. Thanks for posting the link to look up SNPs rs… numbers on another post. Was useful. Looking at your result, ”Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies?” To me it reads.that you carry the high risk HLADQ2.5 haplotype.      
    • AnnaNZ
      Hello. Do you mind saying what symptoms led the doctors to test for bacteria in your blood?
    • trents
      So you you ate wheat products every single day for 50 years without a problem but then in the 90's you discovered that wheat was your problem. That's confusing to me. It seems contradictory. Did you have a problem or not?
×
×
  • Create New...