Need Help Reading Results Please

[N100A]

I was hoping someone could help me read these results. Had a biopsy Friday but the wait is killing me. And if one more person says they think its in my head ....

Celiac endomysial iga value negative

Celiac gliadin set iga value 3.9 ref range <2.9

celiac gliadin ser igg value 2.2 ref range <1.3

celiac ttg serum qn value .9 ref range <10.3

celiac total serum iga value 184 ref range >13 yes to adult: 44-441

Summary interpretation: results may support a diagnosis of celiac disease.

Serological markers for celiac disease detected.

Positive DGP"s may also occur in normal individuals as well as in other GI conditions.

[psawyer]

Two tests are positive for celiac antibody detection. Total serum iga is normal, but with positive results that is not relevant--that test is done to unsure that a negative on the other tests is not due to an overall immune deficiency.

Be aware that false negatives on the biopsy are not unusual. Damage to the villi can be spotty, and if a small number of samples are taken it is possible to miss the damage, especially in the early stages of the disease.

[N100A]

Thanks for the help bin hoping something shows on the biopsy. The doctor took 7. 1 more than the 6 he initially planned to take. I feel good about that as I've read some only take 2-3.

It's just really hard when everyone around u thinks ur not sick and just make yourself nervous. Especially when u know you dont feel right.

[kareng]

Perhaps you can be diagnosed based on the blood results being positive and a good response to the diet. That is, if the biopsies are negative.

[ravenwoodglass]

With positive blood work you need the diet no matter what the test results are from the biopsy. You can start the diet the day they do the biopsy you don't have to wait for the results. I hope you're feeling better soon.

[N100A]

I tried starting today by watching what I eat. Do you know of any good lists of what ingredients to avoid?

[Skylark]

Forbidden list:

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

Safe List:

https://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

There are lots of other articles on Open Original Shared Link right off the first page. Good luck with the diet. I really hope it helps you feel better.

[N100A]

So, its been 11 days since the biopsy and no call from the doctor. I called and left a message for the medical assistant and she returned my call. She said the Dr. Was out until Thursday and would get back to me then. She said, "I took a look at the results, and there's no cancer or anything showuing, so no need to worry." We weren't looking for cancer! We were looking for signs of celiacs. I thought to proble futher but was just so saddened by the response that I just couldn't. She asked if I was stll having an upset stomach, then asked if I was taking any meds. Then we hung up.

Part of me was hoping for an easy "Yes you have celiacs." Now I'm wondering, if the biospy is clean, what my next steps should be...

[Skylark]

Those nurses can be so annoying. They can't interpret the tests.

If the biopsy is clean, you try the diet anyway. The biopsy is not 100% reliable by any stretch, so you may still be celiac (no "s" at the end of the word) or gluten intolerant. Chances are good with the positive blood test that you will feel much better gluten-free. Besides, positive blood work and a positive response to the diet is plenty of common sense evidence for celiac.

[N100A]

So results are in - biopsies are negative. I was told to take Bentyl, Metamucil, and Immodium as needed. Do it for two weeks, and if your not better then we will do a colonoscopy....by the Medical Assistant - the doctor didnt even call. I'm so very frustrated. I dont want to live my life on a regiment of drugs that are just working against one another until I strike a balance. How do we even call that medicine.

I've been gluten free now since the 24th of June. Ive felt good. My anxiety has gone away a great deal, and while I'm still learning what to eat, I dont think Ive glutened myself much. July 4th weekend was bad (high stress at job too though - and traveling so I ate out a lot ). So was the other day. I couldnt identify any gluten the day before though the second time.

I'm feeling at a loss of what to do. I dont know why, but I really needed that confirmation of diagnosis to make me feel better. It's been 10 years of not knowing and I've just had enough.

Should I be staying gluten free? Part of me wants to go down a pizza/sandwich and just see what happens!

[Skylark]

I completely agree about the drugs. It's not a way to live and it's not good medicine.

I think all of us undiagnosed folks downed a pizza/sandwich at some point and regretted it. That's part of convincing yourself that gluten-free works.

The next step in seeking a convincing diagnosis is to go gluten-free for a few months, enjoy the lower anxiety, and then repeat the celiac panel. If the antibodies go away you know they were caused by eating gluten. That's pretty good evidence even with the negative biopsy.

Hang around here a while and you'll realize you are lucky to have a positive test of any sort. I'm undiagnosed (couldn't stand to poison myself for testing) and a lot of folks who were very sick from non-celiac gluten intolerance never did get positive bloodwork. You have to trust yourself and listen to your body.