Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

jhand
 Share

Recommended Posts

jhand Newbie
jhand
Posted

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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

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 Newbie
jhand
Posted
  • Author

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 Grand Master
trents
Posted
(edited)

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 by trents
Scott Adams Grand Master
Scott Adams
Posted

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 Newbie
jhand
Posted
  • Author

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 Mentor
RMJ
Posted

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

Fasano diet paper

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

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

Beverage Proficient
Beverage
Posted

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.

 

  • 2 months later...
Leighton Porter Newbie
Leighton Porter
Posted

Strict diet may improve conditions for certain celiac patients.

Scott Adams Grand Master
Scott Adams
Posted

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.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,995
    • Most Online (within 30 mins)
      7,748
    Naner4
    Newest Member
    Naner4
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
    • Scott Adams
      Gluten free nuts

      By Scott Adams · Posted

      They are a sponsor here, and I did noticed a free shipping coupon: GFships
    • Scott Adams
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By Scott Adams · Posted

      In general if it is labelled gluten-free then it should be ok for most celiacs, however, those who are super sensitive (which is most who have dermatitis herpetiformis) may want to eat only certified gluten-free items, which are supposed to test down to 10ppm (but don't always!).
    • Wheatwacked
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Wheatwacked · Posted

      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.