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loose diagnosis, pls check out my labs


mirror~pool

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mirror~pool Newbie

First post!  I received my “diagnosis” a couple days ago after feeling horrible everyday for the past 20 years.  I don’t really have any digestive issues, so everyone (including drs) have acted like it is all in my head.  I so badly want to list all my symptoms because I think I would have an understanding audience here, but I’m sure you all get that all the time.

I went to a new doctor last week thinking it was probably lupus (I have all the symptoms plus the butterfly rash) or at the worst MS.  I wasn’t going to let them dismiss me this time.  I finally had someone who really listened to me, took the printout I made of the long list symptoms seriously (I did omit the fact that I have anxiety as I have felt like that has led to the dismissal of my concerns in the past).  

Despite the lack of digestive issues she threw in a celiac panel.  She thinks it is “highly suspicious” that I have it but does not think I need the biopsy, just gluten free from now on.  With what many think is the “trendiness” of gluten free now, I would like to be able to counter the eye rolls with being able to honestly say that I have Celiac Disease.   I get a lot of conflicting info online.  Biopsy being the only way to diagnose vs blood tests have come a long way and biopsy may not be necessary.  

I can’t find any info online as to what is considered a near absolute (or super high levels) when it comes to blood work, can you guys take a look at my labs and give me your opinion?  I feel like establishing a relationship with a gastroenterologist before I go off of gluten might be a good idea, but a biopsy will cost me $700 at minimum (potentially thousands more) with my lousy insurance.   

Do I definitely have it or should I get a biopsy? 

 

                                             Value           Std Range

IGA Serum                            397             70-310

 

Anti Gliandin

Ab, IgA                                  77                  0-19

 

Tissue

Transglutaminase

IgA                                         95                  0-19

 

Anti Gliadin

Ab, IgG                                  83                  0-19

 

Tissue 

Transglutaminase

IgG                                        22                   0-19

 

(Also, I see TTG referenced a lot.  Does that refer to any of these tests?)


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ravenwoodglass Mentor

Welcome to the board. With numbers that high and positive in all tests there really is no doubt you have celiac.

Do read the Newbie thread at the top of the coping section as it will have lots of good info for you. I hope you heal quickly but do know that with nervous system impact (your MS type symptoms) healing can take some time..

squirmingitch Veteran

Is your doctor willing to give you an official dx of celiac based on your labs without getting an endoscopy? If so, then by all means, forget the biopsies.

I agree that you are celiac. Geez, any idiot could see that with your blood panel results.

GFinDC Veteran

Hi,

ttg is just an abbreviation for Tissue Transglutaminase IgG or IgA.

Irene Joanne Explorer

I'm from Canada and whenever I see a doctor I'm asked if I had the biopsy. It seems it's not believed a person really has celiac with just blood work. It makes me thankful I had the biopsy- but every situation is different. 

Long term with all the other health problems I've been having and the specialists I've had to see- I'm grateful my diagnose isn't constantly questioned 

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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