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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Diagnosis Without Positive Bloodwork? Fever?
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10 posts in this topic

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

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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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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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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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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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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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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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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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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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    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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