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Blood Test For Celiac Came Back Normal-Or Did It?

Not2sure

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Not2sure Rookie
Not2sure
Posted

Hello All,

I'm 'not2sure' and I am posting because I wanted to know what you all think. I have read lots and lots about Celiac and I think that my symptoms correlate, but on the other hand I'm beginning to think I might be wanting to test positive for Celiac as I don't want any other diagnosis, such as pancreatic cancer or something more severe.

I had no previous symptoms before having my colonoscopy, but since 3-26-10....I've had irregular bowels, diarrhea, orange oil droplets in toilet, movements several times a day and at some point needing to be very close to a bathroom at all times.

I finally gave in and called the colon Doctor after getting concerned. Loosing weight was the big factor as I only weighed 100 lbs anyway. They got me in pretty quick and ordered a fecal sample to run test on and we set another appointment about a month away. Meanwhile, I googled orange oily stool and found so many different reasons for that symptom. I ruled out the others mostly because I didn't want to have those diseases, and I was kinda hoping it might be Celiac, because Celiac might be easier than anything else more severe. Sounds crazy huh?

I decided to remove wheat AND dairy from my diet and when I did, things improved. When the Doctor's office called to tell me my stool sample was normal I asked them to test me for celiac and asked that it be done before my next appointment to save time. I'd been off of gluten for 2 weeks at the time and they told me that it wouldn't matter. After all I'd read, I questioned that but did the blood test anyway. By the way the day before I had my blood drawn I decided that if I must ad gluten back in then I would. Oh my goodness.....I had severe cramping and couldn't get away from the bathroom all day and night. I could clearly see that I was having a reaction, but I didn't know if it was from wheat or dairy or both, because I didn't think about the dairy and pizza with cheese and a bagel with cream cheese. All I know is that I didn't continue to eat either at that point and I went and had the blood test done the next day and decided not to eat any more gluten or dairy if I could help it.

They called today to let me know the results were back and that it did not show celiac. I expected that it might be negative because of all that I'd read and since my symptoms hadn't been around too long, but I also expected that I might have a gene, since I'm a type 1 Diabetic AND having these symptoms. So when I asked about the Gene she told me that it didn't show a Gene for celiac either. I was puzzled, so I went and picked up a copy of the results and will paste it below.

Now What? I did go ahead and order the Enterolab kit and have sent off my sample. Just waiting for those tests results as well.

It appears to me that I do have a gene for celiac, or am I misinterpreting this info? Being Type 1 Diabetic with this gene and also having the symptoms, I'd like to know what you all think? Homozygous DQ2.5 (DQA1*05:DQB1*0201)

Thank you all so very much for taking the time to read this lengthy introduction!!!! :)

Not2sure

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ravenwoodglass Mentor
ravenwoodglass
Posted

I can't say that you are for sure celiac or not. If you are planning on having the endoscopy then do keep eating gluten. If you are not then go ahead and drop both the dairy and the gluten for a couple of months and then you could add them back in one at a time for a couple of weeks and see if you react. Being gluten free will not effect the results of testing for anything other than celiac so if something else is going on they can still look for it even if you are off gluten.

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Skylark Collaborator
Skylark
Posted

You are not misinterpreting the info. You have the highest possible risk genotype for celiac, homozygous DQ2.5. I can't imagine why they told you that you didn't have the gene, as you have not one but two of them.

When I saw a lecture by Markku Maki, the Finnish celiac expert, he said that in his clinical practice a lot of people with DQ2.5 feel better off gluten, whether or not they have developed serologic markers for celiac disease or villous damage. He also considers it wise for people with DQ2.5 who have a reaction to gluten to go off it permanently, as so many people with your genotype eventually do seroconvert.

I agree with your idea that you might not have serum antibodies because the symptoms are so recent.

I imagine Enterolab will find something, as their tests seem to have a rather high positive rate in general. Make of that what you will. :P

If I were you, I'd make sure your doctors have ruled out anything else that requires immediate care and see how I felt gluten-free for a while.

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Not2sure Rookie
Not2sure
  • Author
Posted

Thanks for your comments Ravenwoodglass and Skylark. I appreciate your input. :) Skylark, what do you mean I have not one but two genes?

Not2sure

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WheatChef Apprentice
WheatChef
Posted

As part of a sexually reproducing organism we inherit a set of genes from both our father and mother for a total of two gene sets. Since our father and mother hopefully don't share the exact same genes (small family reunions?) we end up normally with two different genes at most of the places where specific proteins are encoded. The choices here are homozygous (both are the same) or heterozygous (two different). When it comes to the immune system each of these genes encodes for a specific marker protein that goes out and tries to mark invading compounds for our body to attack. Unfortunately you have the most "lethal" to gluten form (2.5) and you have two copies of it, meaning you produce more of these super effective marker proteins than someone who would just have one copy of the 2.5 gene and so your body will have a higher rate of response to gluten.

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Not2sure Rookie
Not2sure
  • Author
Posted

Wow Wheatchef, it sounds like you know what you're talking about. I guess the confusion for me is how do you know I have two genes that are the same? Is it the word homozygous?

Not2sure

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ravenwoodglass Mentor
ravenwoodglass
Posted

Wow Wheatchef, it sounds like you know what you're talking about. I guess the confusion for me is how do you know I have two genes that are the same? Is it the word homozygous?

Not2sure

Yes.

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      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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