Possible Celiac disease

[[To...]]

Hi guys,

 

My last dose of Xanax was 11 months ago. Iv been deal with GI symptoms as the last lingering symptoms. Constant bloating and non stop burping after I eat. I finally had an endoscopy done a couple of weeks ago and they found inflammation in my small intestine. The doctor suspected celiac disease and ordered an antibody blood panel but it came back negative. He recommended going gluten free for six weeks to see if symptoms. 
If not it’s not celiac disease, what else could it be? Has anyone had positive biopsy but negative blood work. 
I have no idea what the heck is wrong with my stomach at this point. The constant ache and pressure is driving me crazy. 
 

 

Tony 

[[je...]]

Hi @[To...]

I have gone through this testing and process 6 months ago. The golden standard for diagnosing Celiac disease is an endoscopy. Your endoscopy should be enough for your doctor to determine whether or not you have Celiac disease. 

5 hours ago, [[T...] said:

I finally had an endoscopy done a couple of weeks ago and they found inflammation in my small intestine.

Celiac disease is not diagnosed based on inflammation in the small intestine but on the damage done to the villi. If there is damage to the villi it is Celiac disease, if you have no damage while you have been consuming enough gluten regularly, then you do not have Celiac disease. Here as an image of what the villi looks like:

5 hours ago, [[T...] said:

Has anyone had positive biopsy but negative blood work. 

A blood test cannot accurately diagnose Celiac disease as it can return a false negative. So yes, some people can have negative blood results but still test positive for Celiac disease in their endoscopy. Therefore it's only the endoscopy that can accurately determine Celiac disease. 

5 hours ago, [[T...] said:

If not it’s not celiac disease, what else could it be?

There could be many possibilities. In relation to gluten, it can be Non Celiac Gluten Sensitivity (NCGS). This is my diagnosis. My bloods and endoscopy were negative but I get very sick when ingesting gluten. NGCS means you are sensitive to gluten and you cannot tolerate it, but it does not damage the villi in your intestines. You follow a gluten free diet but often you don't need to worry about cross contamination and consuming one crumb of gluten like Celiacs. 

It could be that you have a wheat allergy - which is different to gluten intolerance. It could be something related to IBS. We are not doctors so we don't know all the possibilies related to the symptoms. 

I do however think it might be worth it to follow your doctor's suggestion and try to eliminate gluten if he thinks it's related to gluten. My doctor suspected my symptoms were gluten related and I am so glad I followed her advice as I am doing so much better since I'm on a gluten free diet. 

Difference between Celiac disease and NCGS

[[To...]]

Hello Jelly,

Thank you for your response. I will surely go gluten free. I already went grocery shopping and only bought items that are gluten free (pricey). How long did it take to see some of the symptoms go away? My big thing is the constant burping and pressure on my left side. When I say constant, it’s like back to back tiny burps for at least an hour throughout different time periods of the day. 
 

Yes so they didn’t actually find any damage to villious. 
These were his comments on the biopsy’s. Mildly increased intraepithelial lymphocytes are present within part A without associated villous blunting. The differential diagnosis would include early changes associated with celiac sprue, serologic testing may prove helpful if the clinical suspicion is high.

 

 

[[ns...]]

3 hours ago, [[T...] said:

Hello Jelly,

Thank you for your response. I will surely go gluten free. I already went grocery shopping and only bought items that are gluten free (pricey). How long did it take to see some of the symptoms go away? My big thing is the constant burping and pressure on my left side. When I say constant, it’s like back to back tiny burps for at least an hour throughout different time periods of the day. 
 

Yes so they didn’t actually find any damage to villious. 
These were his comments on the biopsy’s. Mildly increased intraepithelial lymphocytes are present within part A without associated villous blunting. The differential diagnosis would include early changes associated with celiac sprue, serologic testing may prove helpful if the clinical suspicion is high.

Ton888, hi!

It could be gluten sensitivity. Be careful with gluten free products on the market. 

Lots of sugar, msg in bread etc.

My daughter in law makes a lot of home made gluten free foods. High protein is good, potatoes, veg, almond flour fir pancakes and bread are good protein and no gluten. There are many recipes online and many gluten free flour alternatives.

Nut butters are goid too by the way.

Hope this helps!

Ns

[[je...]]

4 hours ago, [[T...] said:

How long did it take to see some of the symptoms go away?

It depended on the symptoms. I had gastro like symptoms and those went away within a week. The headaches and migraines took about 6 weeks and the brain fog and head pressure 3 months. But the problem is some of these symptoms are my withdrawal symptoms as well and they’re not completely gone. They got worse as a result of gluten and then better as a result of cutting out gluten. But I still struggle with some of the symptoms as a result of withdrawal. 

Eating gluten free is mainly about reading labels and understanding the ingredients. There are lots of stuff I had to cut out. But I also eat many of the same meals I used to by replacing flour with gluten free flour. I do eat gluten free bread which is very expensive. Luckily vegetables and fruits are naturally gluten free and so is all meat if not processed or marinated etc. by the butcher. I also replace pasta with gluten free pasta. But we don’t eat that much pasta we eat more rice and potatoes. Hope this helps.