Negative blood test?

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Lannister
New Member


Date Joined Jun 2014
Total Posts : 6
   Posted 6/26/2014 4:40 PM (GMT -7)   
In January, I finally went to see a gastroenterologist after years of horrible digestive issues (extremely painful bloating, constipation, etc. etc.). I did my research beforehand and I thought I might have celiac's disease, because once I paid attention to my diet I realized that I got sick after any meal that included bread or pasta. My doctor agreed that my symptoms fit a Celiac diagnosis, and I had the IgA blood test done. The test came back negative. After that, the doctor seemed convinced it wasn't gluten. She told me I had IBS and prescribed me a laxative. The laxative helped me feel a bit better in general, but I still felt sick after almost every meal. So I decided to trust my instincts, and about two months ago I stopped eating gluten completely. I feel SO much better, I have almost no stomach issues, I've stopped getting weird rashes after exercising, I have more energy, less soreness...It's great.

The other week, I got ice cream that had an extremely small amount of flour in it (probably less than a teaspoon). Within two hours I was on the ground crying, the bloating was so painful and I was constipated for several days afterwards. I sent a picture of my swollen stomach to my mom, who was completely shocked, because she thought I was exaggerating my digestive issues. Now she's convinced I have CD and wants me to undergo further testing. She ordered a DNA testing kit for me. I know the DNA tests can only rule CD out, and if they come back positive you need further testing (probably an endoscopy at this point). Am I going to have to go back on gluten for the endoscopy results to be accurate? Is it even worth it to get the diagnosis if it means having to eat gluten for several weeks? Just that small amount of flour was completely intolerable. :( Also, is it likely that if my IgA test was negative, I have CD?

One more random question: can undiagnosed CD cause hair loss?

aliroseb
New Member


Date Joined Jun 2014
Total Posts : 9
   Posted 6/27/2014 8:07 PM (GMT -7)   
I did have an endiscopy and was told that the swelling in duodenum was an indication of cd but the test was negative but after going gf I got better. I have only been gf 7 months. The digestive doctor said I could have cd but would have to back on gluten for weeks. Although I really want to know for sure, I just can't bring myself to purposely eat a bite of something that makes me so sick. Only one P.A. i have been to has taken me seriously. So the only question I can answer is that yes you would have to go back on gluten. Hope I helped a little.

Lannister
New Member


Date Joined Jun 2014
Total Posts : 6
   Posted 6/27/2014 8:45 PM (GMT -7)   
Do you happen to know how much gluten you have to eat, and for how long before the test? I mean could I eat a piece of bread a day and that would be enough, or do you have to like binge on gluten? It'll be difficult to do this because I'm in college, so I obviously can't do it any time during the academic year because I literally can't stand after eating gluten, and I can't miss classes. I'm hoping 2 or 3 weeks would be enough time so I could start after Christmas and have the endoscopy done in mid January right before returning to school.

I'm realizing that not having a diagnosis is an inconvenience. I'm studying abroad this semester but I can't get dietary accommodations because there's technically nothing wrong with me, since, you know, non-celiac's gluten intolerance isn't a real thing :P So I really hope my Chilean family is understanding of why I can't eat anything with flour in it.

aliroseb
New Member


Date Joined Jun 2014
Total Posts : 9
   Posted 6/28/2014 9:14 AM (GMT -7)   
Oh gosh you will have a time with that being away but yes hopefully they will understand your needs. Honestly I don't eat anything unless I made it, read the label or goigled it. It's in so many hidden places. It has taken months for even my husband to understand how important this is and that I am not trying to be difficult. I just don't eat out anymore or am extremely cateful.
And unfortunately from what my doctor said I would need to be back on gluten, eating it daily for 3-4 weeks to be retested. I want to know but I am feeling too good right now to purposely feel that bad. If I accidentally eat some just one time now I get suck immediately and symptoms last for 3 weeks.
I really feel for you being a student with so much going on. Fortunately I am self employed and can work around it easier.
I am pretty new to all this but will help you in whatever way I can.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/28/2014 11:23 AM (GMT -7)   
If you have IgA deficiency, the Celiac blood test will be falsely negative.

Consider EnteroLab.com for stool & genetic testing...don't have to be eating gluten to do the test, as long as you've eaten it within the last 12 months.
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube; TPN-dependent
Meds: Flagyl, Zofran, Essential Oils, etc.

Lannister
New Member


Date Joined Jun 2014
Total Posts : 6
   Posted 6/28/2014 11:29 AM (GMT -7)   
Aliroseb: Thank you for all your help, it's nice to hear from someone who's in a similar situation. I guess I'll have to wait and see the results of the genetic testing. Of course it would be nice if it came back negative because I'm sure having CD is not fun at all. But on the other hand if it does come back negative, then I still don't know why I react so badly to some foods. I guess time will tell.

Razzle: Thank you, I will check EnteroLab.com out, and maybe I will do the stool testing if the genetic test comes back positive. What exactly does it mean to be "IgA deficient"?

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/28/2014 11:47 AM (GMT -7)   
IgA is one of the types of antibodies the immune system makes. Some people have an error that causes them to be unable to make enough IgA. So when these people are tested for IgA antibodies to something specific, such as gluten or gliadin, the test comes back negative because their body is unable to make enough antibodies to the gluten/gliadin to show up on the test even if they do have Celiac.

To make sure this isn't an issue, ask your doctor for a Total IgA test.

For more info, check out neurotalk.psychcentral.com/archive/index.php/t-105601.html - excellent discussion of testing for Celiac in light of selective or total IgA deficiency...
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube; TPN-dependent
Meds: Flagyl, Zofran, Essential Oils, etc.
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