Positive Calprotectin,steatorhhea and more...

[Binan]

Hello everyone, I am a 28 year old female.  English is not my native language so I apologize in advance.  Frankly, I don't know where to start.  For years (10-15 years) I had complaints of bad smelling stool, bloating, gas and not being able to gain weight, but the doctors I went to had routine blood tests and stool tests done and said 'no problem'.  Last year I went to a research hospital for other problems and was diagnosed with sjögren's syndrome.  I went to gastroenterology at the same hospital to reconsider my digestive issues.  Calprotectin and fecal fat were positive in the initial tests.  pancreas and IBD were eliminated (fecal elastase, abdominal mr, abdominal tomography, abdominal ultrasound, mr enteroclysis, colonoscopy).  After Sjögren's syndrome, I changed my diet and consciously reduced gluten in my diet.  but I still eat gluten sometimes.  The initial celiac antibody test was negative for tissue transglutaminase.  Iga deficiency tested, no deficiency.  In the follow-up, Calprotectin test was performed again and it was positive again.  Celiac antibodies were requested again (anti endomysium, anti gliadin iga and tissue transglutaminase were negative again. However, endoscopy was planned according to my complaints. I consumed gluten for 3 weeks before endoscopy. Duodenum was normal after endoscopy. Biopsy result was written as 15 intraepithelial lymphocytes and mild antral gastritis in 100 enterocytes. Normal duodenal mucosa As a result, the doctor said that I did not have celiac and started giving pancreatic enzymes, but I could not see a difference and stopped the enzyme Another doctor thought I may have celiac disease and I started a gluten-free diet and after the diet the oily, sticky and foul-smelling stools disappeared. At the end of the diet, the calprotectin test was negative again. Genetics I was asked to test and HLA dq2.5 is positive, by the way, I'm confused, I've been on a gluten-free diet for 5 months, bloating and gas continues, but it seems that there is no oily, thin stool. would like to hear if any  m.  Sorry for the long post.

[trents]

Have you considered NCGS (Non Celiac Gluten Sensitivity)? Shares many of the symptoms with celiac disease but will not throw antibodies or show small bowel mucosal damage.

And what about other food intolerances besides to those containing gluten?

[Binan]

Just now, trents said:

Ncgs'yi (Çölyak Dışı Gluten Duyarlılığı) düşündünüz mü? Çölyak hastalığının semptomlarının çoğunu paylaşır, ancak antikor atmaz veya ince bağırsak mukozal hasarı göstermez.

Peki ya glüten içerenler dışındaki diğer gıda intoleransları?

Thank you for your answer.  There is definitely a difference in steatorrhea, iron anemia, low vitamin d, difficulty gaining weight, and defecation after a gluten-free diet.  I haven't read an article that ncgs causes malabsorption, I keep going 🙏🏻

[trents]

The malabsorption caused by celiac disease is due to the damage it causes the villi that line the small bowel. But you say you have had an endoscopy and biopsy of the small bowel (duodenum) lining and it did not show damage.

[Binan]

4 minutes ago, trents said:

The malabsorption caused by celiac disease is due to the damage it causes the villi that line the small bowel. But you say you have had an endoscopy and biopsy of the small bowel (duodenum) lining and it did not show damage.

yes, you are right, my biopsy result says normal mucosa.  Is it possible to miss the damaged area during endoscopy?  When I gave my antibody tests, I was consuming very little gluten, maybe that's why it's negative 🤷🏻‍♀️ I also read that celiac can go hand in hand with sjogren's syndrome.  I have a very high risk with my dq2.5 gene which makes me afraid of malignancy.  because it may be a rather late diagnosis.  By the way, what do you think of calprotectin, I've read that it sometimes comes back positive for celiac.

[trents]

I know nothing about calprotectin. Your mention of it is the first time I have even heard of it. So, I looked it up and it is a fecal test that can help distinguish between IBS and IBD.

Yes, damage to the villi in duodenum can be patchy and can be missed if the doctor performing the biopsy is not experienced with celiac disease and fails to take samples from several areas.

The Mayo Clinic recommends consuming an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks before antibody testing and for two weeks before biopsy to ensure valid test results.

Edited February 23, 2022 by trents

[Binan]

My doctor said that my small intestine looked fine on endoscopy, but that I still had to wait for the biopsy results.  I'm looking at my result now. 3 biopsies were taken from the duodenal bulb.  I hope it wasn't missed 🤷🏻‍♀️

[trents]

I think many are recommending at least four biopsy samples be taken.

[Scott Adams]

Doctors can miss celiac disease when doing a biopsy, and @trents is correct that they recommend at least 4 samples. At this stage though, it might not make sense to eat gluten again for another celiac disease screening, which would not detect non-celiac gluten sensitivity anyway. Perhaps just try the gluten-free diet for several months.

Also, I noticed Turkish in one of your posts. Several years ago I was lucky enough to go to Istanbul, and one thing I quickly realized was their common practice of including either bulgur wheat, or broken up thin wheat noodles in rice. Just beware of hidden gluten:

 

[knitty kitty]

@Binan 

Have you considered Small Intestinal Bacterial Overgrowth (SIBO) for the continuing gas and bloating?

I hope you get your biopsy results soon.  Microscopic changes can be seen in Celiac Disease.  

Best wishes on your results.

[Binan]

9 hours ago, Scott Adams said:

Doktorlar biyopsi yaparken çölyak hastalığını kaçırabilirler ve @ trents en az 4 örnek önerdikleri doğrudur. Bununla birlikte, bu aşamada, çölyak dışı glüten duyarlılığını yine de tespit etmeyecek başka bir çölyak hastalığı taraması için tekrar glüten yemenin bir anlamı olmayabilir. Belki de sadece birkaç ay boyunca glutensiz diyeti deneyin.

Ayrıca yazılarınızdan birinde Türkçe fark ettim. Birkaç yıl önce İstanbul'a gidecek kadar şanslıydım ve çabucak fark ettiğim bir şey, bulgur buğdayını ya da pirinçte parçalanmış ince buğday eriştelerini dahil etme konusundaki yaygın uygulamalarıydı. Sadece gizli glutene dikkat edin: İstanbul'a gidecek kadar şanslılar ve çabucak fark ettiğim bir şey, bulgur buğdayını ya da pirinçte parçalanmış ince buğday eriştelerini dahil etme konusundaki yaygın uygulamalarıydı. Sadece gizli glütene dikkat et:

 

hello 🙋🏻‍♀️ yes I am in Turkey and very close to Istanbul.  What you are talking about is really common in our country.  I've been on a gluten-free diet for about 5 months, our house is mostly gluten-free now, and I don't eat out except at gluten-free restaurants.  I don't think I will ever eat gluten again.  thanks for your answer.

[Binan]

1 hour ago, knitty kitty said:

@Binan 

Devam eden gaz ve şişkinlik için İnce Bağırsak Bakteriyel Aşırı Büyümesini (SIBO) düşündünüz mü?

Umarım biyopsi sonuçlarını yakında alırsın. Çölyak Hastalığında mikroskobik değişiklikler görülebilir.

Sonuçlarınız için en iyi dileklerimle.

hello 🙋🏻‍♀️ yes, I researched sibo.  I will be seeing a functional doctor soon for this.  My biopsy results are already out.  I think you may have missed it because my post is long 🙈 thank you for your answer.

[knitty kitty]

Yes, I did miss it.  Thanks 

(Visually Impaired) 👓

Have you tried a Paleo diet like the Autoimmune Protocol diet (AIP)? 

 

[Binan]

15 minutes ago, knitty kitty said:

Evet, kaçırdım. Teşekkürler

(Görme Engelli) 👓

Otoimmün Protokol diyeti (AIP) gibi bir Paleo diyeti denediniz mi?

 

I haven't tried it but I guess I should give it a shot.  Thank you ☺️