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

Diagnosis Without Positive Bloodwork? Fever?

kelly97

Recommended Posts

kelly97 Rookie
kelly97
Posted

Hi all, I was diagnosed 2 or 3 wks ago with Celiac's based on my biopsies and my symptoms.

The biopsies the doctor took showed duodenal mucosa with abnormal villous architecture and increased intraepithelial lymphocytes. And my colonic mucosa with crypt architectural distortion with no evidence of colitis. Essential, he says I meet the gold standard for celiac disease. And my symptoms are malabsorpsion, massive weight loss, etc.

However, I received the lab report in the mail from my doctor from the blood work that was taken after the biopsy. It says all my labs are normal, but I can contiue with a gluten-free diet to see if it helps. I realize now that I have "switched" to a gluten free diet, that my diet was already pretty much almost gluten free.

I don't meet with my GI doctor for a month. So...my question is - can I have a diagnosis of Celiac's without a positive blood test, but with positive biopsies? I'm not one of the ones that has IgA deficiency. Does anyone else fall into this category?

On a side note, does anyone else with Celiac's experience continuous intermitent fevers thru-out the day for months and months (I'm going on over a year now)?

Thanks,

Kelly

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

Celiac.com Sponsor (A8-M):


kelly97 Rookie
kelly97
Posted
  • Author

BTW, the blood tests that were ran were IgA, IgG, and tTG.

kelly97 Rookie
kelly97
Posted
  • Author

Sorry, one more thing - my Marsh Classification is 3b. Now I'm just worried with my blood work, then my GI doc is going to say I don't have Celiac's now after he diagnosed me with it. I can't help but think if I had been eating more of a gluten diet, then my bloodwork would be more positive.

shadowicewolf Proficient
shadowicewolf
Posted

That is not the full panel. I can't remember what all is in it though, someone else will probably post it.

MitziG Enthusiast
MitziG
Posted

You can get a dx without bloodwork...but it depends on the doctor. A few other things can cause villous atrophy: giardia, casein intolerance...seems like one more. But if your symptoms resolve on a gluten-free diet, and if damage heals on the diet, a celiac dx would be in order.

As for fevers...yep. sure did. Intermittent low grade fevers, particularly when I "overdid it"....which meant I left the house and did something fun, like a day of shopping. Had them for about 20 years. Was dx April2011. I don't have fevers anymore. :)

MitziG Enthusiast
MitziG
Posted

Also, the missing blood tests we're DGP and EMA..since it has only been a few weeks, you may still test positive if you get them done asap. My sons stayed positive almost a year after going gluten-free. Mine and my daughters were negative within 3 mos though.

GottaSki Mentor
GottaSki
Posted

You can have negative blood and positive biopsy. Given the positive Marsh 3B biopsies I'd imagine your GI will stick with Celiac Diagnosis.

The most important comment you made to me is that your diet was mostly gluten-free before diagnosis. This can effect your blood work. While I understand the doubt the negative blood work has caused, I can tell you my children have had all negative blood work, yet their symptoms all resolved on a gluten free diet. My own positive blood work was only slightly positive at age 43 with Marsh 3C/total atrophy biopsies along with severely low nutrient blood work. The celiac blood panel simply is not accurate enough yet. Positive is positive - in blood or biopsy.

Remove the rest of the gluten from your life and watch for symptom improvement.

Make sure your nutrients get tested along with any follow up blood work - if those go up after some time gluten free perhaps you and your doctor will feel more confident in the dx.

Also, I'm not clear what IgA and IgG blood tests you had, but your followup should be an entire panel - including DGP for both IgA and IgG - as this test is most specific to determine if you are getting any gluten in the system.

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

Celiac.com Sponsor (A8-M):


kelly97 Rookie
kelly97
Posted
  • Author

Thanks everyone for replying. I'll make sure to bring up to my doctor that my diet hasn't really changed that much now that I'm "gluten-free". Then, maybe he'll see that could have effected the results of the blood tests that I had for it.

They're also working me up for cancer, so I'm really not sure if it's Celiac's or cancer with regard to my constant intermittent fevers every day. But it is interesting to find out that others with Celiac's have fevers, too.

Now, if I could get my hips to stop hurting like crazy.....

Thanks again,

Kelly

guest134 Apprentice
guest134
Posted

Quick question for you, what relevance would colitis be? Is that something that comes with celiac or are they separate things? Like you either have celiac or colitis?

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks everyone for replying. I'll make sure to bring up to my doctor that my diet hasn't really changed that much now that I'm "gluten-free". Then, maybe he'll see that could have effected the results of the blood tests that I had for it.

They're also working me up for cancer, so I'm really not sure if it's Celiac's or cancer with regard to my constant intermittent fevers every day. But it is interesting to find out that others with Celiac's have fevers, too.

Now, if I could get my hips to stop hurting like crazy.....

Thanks again,

Kelly

Hi Kelly, With a Marsh 3 biopsy the likelyhood you have celiac is pretty high. I noticed you have been diagnosed with MS. How did they reach that diagnosis? Was it based on lesions found on a brain MRI and if it was did they follow up with a spinal tap to look for the debris that is found in MS patients? The reason I ask is because gluten ataxia causes lesions that are much like the lesions found with MS but the debris that is found with a spinal tap wouldn't show up if what you actually have is gluten ataxia. I was thought to have MS for a long time but without the findings on the spinal tap the doctors decided it wasn't actually MS but unfortunately my neuro knew nothing about gluten ataxia. If you actually have gluten ataxia you will likely be very sensitive to even small amounts of cross contamination but after a while on the gluten-free diet your symptoms may resolve. Also be sure they check your B12 levels. Many doctors are not up to date on the need for those levels to be over 500 so do get the actual results. My doctor considered 230 to be normal based on the old ranges but sublingual B12 while I was healing from celiac helped a great deal.

Lastly are you taking your temp when you are experiencing the intermittent fevers? Some of us can experience hot flashes due to our intolerance(s) but those would not show up when taking your temp.

I hope you are feeling better soon and do get on the diet strictly keeping in mind that healing, especially when gluten affects the brain can take some time.

Keep us posted on how your doing and ask any questions you need to.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,644
    • Most Online (within 30 mins)
      7,748
    jcardenn
    Newest Member
    jcardenn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • 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.