Partner in pain over 3 years with no relief. Gluten free diet has been followed.

[jhand]

Hello, 

The woman who I am very in love with has been in constant pain since the day we met, due to celiac complications. She has been gluten free for over 3 years, and her endoscopy is showing no improvement along the intestinal tract or duodenum. (No marsh score provided, GI professionals in MT are a joke.)

As a backstory, she went potentially years being undiagnosed celiac as her parents just called her lazy and never stopped to consider she was sick. She ran track and dud ranch work during this time, so I imagine considerable damage was done. 

She is in constant pain from any food she consumes, even liquid form protein that is certified gluten free. I have her on a mass gainer that adds 1200 calories a day, as well as extra food throughout the day and of course meals, but within 5 minutes of eating she is doubled over or running to the bathroom. 

I believe we have eliminated all forms of gluten from the home, including myself going gluten free. (Bought new appliances, pots, pans, replaced condiments, eliminated gluten makeup and shower products.) Please tell me if there is anything we have missed. 

I came across SIBO and after she was treated for that condition, she did feel improvement for a short time before falling back into the pain. 

I believe she may now be going through vasovagal syncope, which is of course truly throwing her off. She is shaky, has total brain fog, cold feet, and feels extremely weak and nauseous. It seems to me that when she gets stressed this part of her condition worsens, but I am no doctor. Is there anyone out there that has been treated for this condition successfully and if so, what was the regime you were put on? 

We are desperate for answers, as I can't stand to see her go through the pain anymore. How can we put her on the path to healing? Is there something that I've missed? 

 

Thank you for your time and consideration. 

[trents]

Welcome to the forum community, @jhand!

I'm wondering if your lady is cross reacting to another food with a protein whose structure closely resembles gluten. We know, for instance, that some celiacs react in the same way to dairy and oats (gluten free oats) that they do to gluten. Corn, eggs and soy are other common offenders. Some medications can also damage the villous membrane of the small bowel in a similar way to gluten. NSAIDS and Proton Pump Inhibitors are chief among them but there is also a certain blood pressure med that can do this. So I'm thinking there's another layer to this problem that lies beneath the obvious one of gluten. I would suggest you consider eliminating dairy and oats for a time and see if there is improvement.

Kudos to you for going the extra mile to protect the one you love.

Where in MT are you? My wife and I lived in western MT during the decade of the 80's.

[jhand]

That's very interesting, as she enjoys many treats with gluten free oats. Appreciate the help. Eggs are a good go to for her, but I'm not so sure on the soy. Will have to check. Thank you so much for the ideas though! It's great to not be so stuck. 

 

We did cut lactose out of her diet, but she said it didn't help. Perhaps going all the way with a full dairy free diet would work wonders. Appreciate the tip! 

We will also do a deep dive on medications to see if that is the culprit. 

We used to be in the Missoula area but just moved into the Kalispell area and are loving it!!

[trents]

We were in Frenchtown/Alberton for three years and then in and around Libby for 5. Kalispel is a gem of a city. Absolutely gorgeous area.

Lactose (the sugar component of milk) is a problem for many celiacs but for some it is the protein, casein, in dairy that actually causes villi blunting like gluten.

Edited April 25, 2024 by trents

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[jhand]

Thank you for the information Mark! Will be looking into this and hopefully a stricter diet for a short while can get her turned around. Appreciate you taking time out of your day to help us! 

[RMJ]

This celiac researcher found that some people with persistent symptoms and intestinal damage can improve following the strict diet they propose. 

Fasano diet paper

 

[Scott Adams]

I added the Fasano paper link within our article...thanks @RMJ!

[Beverage]

Great to hear a partner so understanding, caring, and supportive. 

Oats was a problem for me, even gluten free oats, until I found "purity protocol" oats. But for at least a few months, she should cut out all oats until feeling better, then try reintroducing a little bit to see if any reaction. 

You mention a ranch...is she currently around animals? Pets? Farm animals? I got badly glutened taking care of my neighbor's chickens from just filling up their feed, all the dust from the grain. Hay can contain grains that gets airborne. My pets are all on grain free food so I don't pet them and accidentally gluten myself. I'm still careful handling their food.

Any home projects? We have an old house and I get sick anytime cutting into the old plaster, I've read plaster and sheet rock can possibly contain wheat. I'm careful with anything with glue anyway.

Any grain grown near you? I had a friend that had to go on vacation whenever wheat was being harvested near him. Windy weather was also a problem at times depending on the growing stage of the crops.

 

[Leighton Porter]

Strict diet may improve conditions for certain celiac patients.

[Scott Adams]

I would say that a strict gluten-free diet should improve symptoms in most celiac disease patients, but some will need to eliminate more foods, as they may have additional food intolerance issues.