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Inconclusive Blood Tests, Highly Suggestive Biopsy

PepperandDaisysMommy

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PepperandDaisysMommy Newbie
PepperandDaisysMommy
Posted

I am a 32 year old woman with no children. For about a year now, I have been suffering from digestive issues that have almost become normal to me. I regularly head straight to the bathroom after eating. I have battled with stomach cramping, bloating, diarrhea, hemhorroids, and mild acid reflux. I finally started seeing a GI specialist, who scheduled a colonoscopy and endoscopy. This was his first route because of my family history. My father suffers from severe acid reflux, my grandfather passed away from stomach cancer, and my aunt is a colon cancer survivor. After getting the biopsy results from my endoscopy, my dr. ordered 3 blood tests to check for Celiac. One test came back positive, one came back negative. The third was mildly positive. The biopsy was "highly suggestive" of Celiac. The dr. has ordered two more blood tests, but has said that he will probably give a formal diagnosis of Celiac at my next appt in January. Truthfully, I can't wait that long! Is it possible to be a Celiac with inconclusive blood tests and a positive biopsy?? This is all so new to me and any help would be appreciated.

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Ahorsesoul Enthusiast
Ahorsesoul
Posted

You can have celiac disease or be gluten intolerant with all tests even showing negative results.

You can go gluten free at anytime. The sooner you do the sooner you will feel better.

Isn't it nice to know that it's not all in your head?!

Welcome to the gluten free world.

happygirl Collaborator
happygirl
Posted

A positive biopsy is the gold standard for a Celiac diagnosis, so that is technically the "only" way to have a "true" confirmed case of Celiac. Many doctors are starting to diagnose on bloodwork alone. You don't have to have + bloodwork AND + biopsy to be diagnosed as a Celiac.

Continue to eat gluten until your next appointment so that you can finish any testing they request. However, if you are concerned about waiting until your next appointment, it may be worth it to call them and discuss your concerns - maybe they can get you in sooner, or run the bloodwork before your appointment.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you have had the biopsy and blood tests you are done with celiac testing. You can start the diet. Your body may give you the answer before you go back to the doctor.

nora-n Rookie
nora-n
Posted

Yes, even the best blood tests will normally only be positive in about 80% of cases!!

That means that people have symptoms, and a positiv e biopsy, and still the blood tests will miss about 20%.

And what about partial celiac, where celiac is only patchy? The blood tests then are even more inconclusive.

(yes, the biopsy is the test that really counts)

nora

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      how much gluten do I need to eat before blood tests?

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      how much gluten do I need to eat before blood tests?

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
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