Mixed Thoughts from Doctors- Looking for Advice

[annmarie8721]

Hi all!

This is going to be a long post but I would LOVE some opinions!

I am still trying to confirm my diagnosis and having a difficult time. My current primary doctor is wonderful. I started going to her a few years ago after I finally was frustrated enough to leave the community office I had been going to with incredibly high turnover. This doctor has listened, sent me for testing and referrals, and most importantly, been CONSISTENT! I only mention this part because I think it is important to my story with sucky doctors. We discussed my family history of high blood pressure, gluten intolerance, PCOS, and Hashimotos disease. 

Over the years I have had a lot of symptoms that I assumed were all unrelated and simply due to poor college kid habits. I was an athlete in high school and college with Italian parents, so pasta and bread were staples in my life. While I was in probably the best shape of my life, I was told my blood pressure was still too high and at age 22, put on medication to combat it. I had irregular stomach pain and heart burn, and was told by one doctor that I spoke to for 10 minutes that it was likely diverticulitis. 🙄 I also had a decent amount of anxiety. 

Around age 25, my stomach problems had gotten a lot worse. I had incredible heart burn, diarrhea, and a sharp (very localized) pain to the right of my belly button. I went to the doctor I have now and she referred me to a new She also referred me to GI, and I went in for an endoscopy and colonoscopy. They took biopsies and everything came back normal, so I assumed my stomach problems were a result of a Trulys summer, and high stress at work.

After this I started to be really aware of what I was eating and stuck primarily to chicken, rice, and vegetables (and ultimately ended up avoiding a lot of gluten because of it.) My doctor recommended reducing stress, so I actually changed jobs and left the clinical day school I worked at for more of an office setting. My stomach started feeling better, but I would occasionally still have times where it would still be really off. For the next few years, I gradually began to get different symptoms, especially around the holidays where I would indulge more. I began swelling/bloating substantially, my stomach, face, and hands were the worst. I got tingling in my hands and feet, and at times began experiencing  numbness down my arms and legs. My anxiety was the worst it had ever been, and I had still had frequent bouts of depression. I started rapidly losing my hair, and I had days where I was so exhausted, and was worried about falling asleep at the wheel. In addition to all of this, I had stopped my DEPO shot that I had been on for years, and went for about a year and a half with only 1 period. I went back to my doctor and explained what was happening. She referred me to a new OBGYN, and this doctor determined that I have PCOS. However, the PCOS did not explain all of the symptoms I was experiencing. 

After a ton more tests, my doctor did a “Celiac Disease Diagnostic Panel.”. I explained to her that I did (at the time) consume some gluten, but I was purposely working on eating less because of the PCOS diagnosis. I took the test and bloodwork showed that my “Gliadin (Deamidated) AB (IGA)” was elevated at 19.7 U/mL. My doctor said that it is likely Celiacs, and to stop eating gluten. She then said I would need to go to GI to confirm. 

Fast forward a few months, I stopped eating gluten and feel INCREDIBLE! My Period started just 3 weeks after going gluten free. My anxiety has decreased substantially. My hair has stopped falling out in clumps, my joints feel better, and the numbness and tingling has gone away. I am less bloated and swollen and have SO much more energy. Not to mention my stomach pain is gone!

The other day I  followed up and went to the GI to confirm the diagnosis. This doctor was short, rude, and dismissive. She told me she had not yet received my bloodwork, but that I didnt have celiac because the biopsy they had taken years back (I am now 28) showed no signs. She then said that she wanted to re-run the bloodwork. I said that I am currently completely gluten free, and she said that this wouldnt affect my blood test. However, my primary doctor had told me that you need to be actively consuming gluten for it to show up in a blood result….

So I guess I am looking for advice on how to proceed. Should I continue with this GI? I know not all doctors graduate top of their class… but she is the specialist? I already know that stopping gluten has helped me, and I do NOT want to go back… I also know placebo is a real thing. Could that be what is happening? Can celiac be missed in a biopsy? Is the elevated IGA enough to confirm? Or could it just be a gluten intolerance? 

Looking for any guidance and craving learning more about wth is going on with me! 

Thanks in advance. 

 

[Scott Adams]

To me it sounds like you are done with doctors, at least as far as diagnosing celiac disease goes. It does not sound like you are willing to eat at least two slices of wheat bread daily for 6-8 weeks to get your blood work re-done (yes, this is necessary and your GI doctor is incorrect about this).

It takes only one positive blood test like the one you had to indicate that celiac disease is likely. It's unclear what the exact results were of your original biopsy, but at this point it may not matter--you are gluten-free and feeling great--your symptoms have gone away, and this is further evidence that you likely have celiac disease, or at the very least non-celiac gluten sensitivity (approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS).

Given what you've shared here, it makes sense for you to stay 100% gluten-free and fully recover.

 

 

 

[trents]

I agree with Scott. You have your answer from the fact that your symptoms all scream of celiac disease as well as the one positive blood test that was done while consuming enough gluten to produce a valid test result, combined with the fact that your symptoms dramatically improved when you stopped eating gluten! If it looks like a duck and quacks like a duck it is a duck. This is not due to a placebo effect of the power of suggestion. It is real celiac disease.

Let me correct one small confusion in your terminology. The term "intolerance" refers to celiac disease. The term "sensitivity" refers to NCGS (Non Celiac Gluten Sensitivity). Both require strict life long adherence to a gluten free diet and share many of the same symptoms. The difference is that NCGS doesn't damage the lining of the small bowel as does celiac disease. But NCGS can cause other body system damage, particularly in the area of neurology.

[Russ H]

I agree with Scott and Trents. It is concerning that your GI specialist is totally wrong regarding the necessity to keep eating gluten prior to the blood test - this is basic stuff.