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Diagnosis Without Positive Bloodwork? Fever?


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9 replies to this topic

#1 kelly97

 
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Posted 19 September 2012 - 04:13 PM

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
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Diagnosed Celiac Disease 8/26/2012
Diagnosed Multiple Sclerosis July 2010
Currently seeing an Oncologist since May 2012

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#2 kelly97

 
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Posted 19 September 2012 - 06:19 PM

BTW, the blood tests that were ran were IgA, IgG, and tTG.
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Diagnosed Celiac Disease 8/26/2012
Diagnosed Multiple Sclerosis July 2010
Currently seeing an Oncologist since May 2012

#3 kelly97

 
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Posted 19 September 2012 - 06:47 PM

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.
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Diagnosed Celiac Disease 8/26/2012
Diagnosed Multiple Sclerosis July 2010
Currently seeing an Oncologist since May 2012

#4 shadowicewolf

 
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Posted 19 September 2012 - 07:20 PM

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

 
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Posted 20 September 2012 - 09:07 AM

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. :)
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#6 MitziG

 
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Posted 20 September 2012 - 09:09 AM

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.
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#7 GottaSki

 
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Posted 20 September 2012 - 09:29 AM

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.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 kelly97

 
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Posted 23 September 2012 - 11:02 AM

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
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Diagnosed Celiac Disease 8/26/2012
Diagnosed Multiple Sclerosis July 2010
Currently seeing an Oncologist since May 2012

#9 guest134

 
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Posted 23 September 2012 - 05:07 PM

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?
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#10 ravenwoodglass

 
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Posted 24 September 2012 - 03:30 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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