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

Refractory Celiac Disease

Bri's mom

Recommended Posts

Bri's mom Apprentice
Bri's mom
Posted

Does anyone have refractory celiac disease? My daughter was diagnosed with this a few weeks ago. Her GI dr. has finally decided she needs to go to the Mayo Clinic in Jacksonville, FL. Is anyone familiar with the Mayo Clinic? She has been battling Crohn's Disease since June 1, 2007, Celiac Disease Dec. 27, 2006 and now Refractory Celiac Disease.

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

how did the doc decide that it was refractory celiac? she has only been gluten free for almost 6 months. if she is older, it could be several years before the intestines heal completely.

lovegrov Collaborator
lovegrov
Posted

I don't know how Crohn's can affect celiac healing, but true refractory sprue is very rare. Usually the patient is still eating gluten either on purpose or by mistake, or the patient also has bacterial overgrowth.

I didn't know there was a Mayo Clinic in Fla.

richard

care bear Newbie
care bear
Posted

Lyn's Mom here. First time user of any message board. My daughter was diagnosed in Dec. 06 with celiac sprue. She has lost 60 lbs. since last October and has been gluten free since Dec. 06, yet the cramping and diarrhea have not ceased, she continues to lose weight and now gets infections. The diagnosis is now refractory celiac sprue. We are considering a facility on a University level that specializes in treatment but do not know where to go.

Suggestions welcomed. Lyn is currently hospitalized (12 days now) Her blood cultures have grown bacteria (of the type found in the bowels) and yeast (not yet identified). She has had chills and fever, infections at the blood draw and intravenous sites. Being given a steroidal type infusion, antibiotics, diflucan. Her physicians have tested for any other things that could be the underlying cause to no avail. At 90 lbs., she is not that strong.

mouse Enthusiast
mouse
Posted

You could PM Canadian Karen as she also has refractory celiac sprue. She might have some suggestions. Hugs to both of you and your children.

happygirl Collaborator
happygirl
Posted
Lyn's Mom here. First time user of any message board. My daughter was diagnosed in Dec. 06 with celiac sprue. She has lost 60 lbs. since last October and has been gluten free since Dec. 06, yet the cramping and diarrhea have not ceased, she continues to lose weight and now gets infections. The diagnosis is now refractory celiac sprue. We are considering a facility on a University level that specializes in treatment but do not know where to go.

Suggestions welcomed. Lyn is currently hospitalized (12 days now) Her blood cultures have grown bacteria (of the type found in the bowels) and yeast (not yet identified). She has had chills and fever, infections at the blood draw and intravenous sites. Being given a steroidal type infusion, antibiotics, diflucan. Her physicians have tested for any other things that could be the underlying cause to no avail. At 90 lbs., she is not that strong.

Welcome to the board, carebear, but I'm sorry to hear that your daughter is having such difficulties.

How old is your daughter?

Has she had the bloodwork re-done, and a repeat biopsy?

Is she 100% gluten free (no eating out, checked medications, cross contamination, etc)?

Two of the best Celiac centers are at Columbia University (www.celiacdiseasecenter.columbia.edu) and University of Maryland (www.celiaccenter.org)

Also, there is one in Chicago that is good as well.

Best of luck, and please keep us updated. I'll be thinking of you and your daughter.

(lovegrov: there are three mayos: Jax, FL; Rochester, MN; and Phoenix/Scottsdale, AZ)

  • 5 weeks later...
Bri's mom Apprentice
Bri's mom
Posted
  • Author
how did the doc decide that it was refractory celiac? she has only been gluten free for almost 6 months. if she is older, it could be several years before the intestines heal completely.

My daughter is 22 and I thought the same thing about how her dr could know for sure she has refractory celiac. It is so hard to go completely gluten-free and she eats lots of McDonald's fries as she is a college student and does not always have the convenience of quick food. She says she has tried really hard to watch everthing she puts into her mouth. The gi dr. has but her on Imuran for treatment. Thanks for your help.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
My daughter is 22 and I thought the same thing about how her dr could know for sure she has refractory celiac. It is so hard to go completely gluten-free and she eats lots of McDonald's fries as she is a college student and does not always have the convenience of quick food. She says she has tried really hard to watch everthing she puts into her mouth. The gi dr. has but her on Imuran for treatment. Thanks for your help.

She really has to be totally gluten free to recover. Because celiac disease causes antibody formation even the smallest amount will make her just as ill as if she had a cheeseburger with those fries. She needs to be eating whole naturally gluten free foods. She needs to keep something for sure gluten free with her to prevent 'slip ups' that will keep her sick. I make sure I have some gluten-free nuts and dried fuits or a Gluten Free snack bar or an apple etc. in my car or purse. That can help.

bigapplekathleen Contributor
bigapplekathleen
Posted

Have you looked into the SCD diet? (Breaking the Vicious Cycle is the title of the book)

Kat

Bri's mom Apprentice
Bri's mom
Posted
  • Author
She really has to be totally gluten free to recover. Because celiac disease causes antibody formation even the smallest amount will make her just as ill as if she had a cheeseburger with those fries. She needs to be eating whole naturally gluten free foods. She needs to keep something for sure gluten free with her to prevent 'slip ups' that will keep her sick. I make sure I have some gluten-free nuts and dried fuits or a Gluten Free snack bar or an apple etc. in my car or purse. That can help.

I wish her diet was as simple as eating the foods you mentioned...she also has Crohn's Disease and cannot digest nuts, fruits and most snack bars. If she only had celiac d her diet would be easier to handle, but having Crohn's and Celiac it is so hard to find things you can eat. We just found out that you has bone loss in her spine and both hips...osteopenia. She has an appointment at the Mayo Clinic in Jax, FL Aug. 2. Thanks for your help.

ravenwoodglass Mentor
ravenwoodglass
Posted
I wish her diet was as simple as eating the foods you mentioned...she also has Crohn's Disease and cannot digest nuts, fruits and most snack bars. If she only had celiac d her diet would be easier to handle, but having Crohn's and Celiac it is so hard to find things you can eat. We just found out that you has bone loss in her spine and both hips...osteopenia. She has an appointment at the Mayo Clinic in Jax, FL Aug. 2. Thanks for your help.

It can be so hard, I know. I have diverticulosis and diabetes in addition to my celiac and I also can't eat many things. The things I mentioned are the most common ones for us to keep on hand but each of us needs to of course find the things to carry that we can consume. Dietitian are often clueless when it comes to celiac but not always. Perhaps a consultation with one may be able to shed some light on things she can eat that she can carry with her. I hope she gets some relief soon and that the clinic can help but it does take time to heal, much more than we often would like.

ArtGirl Enthusiast
ArtGirl
Posted

I'm sorry your daughter is going thru such a bad time.

I'd like to offer this in regard to the Crohn's. When I was still trying to find out what was wrong with me and having severe diarrhea I ran across this book. The title was intriguing. I found the book at the library and discovered that it is a very strict diet to help the intestines sort of "rest" and heal. One of the authors of the book was dying of Crohn's Disease at 19 yrs old (Rubin) and was able to heal it by diet and supplementation.

I thought it was worth a try, and it really did help me during the first few weeks. Of course, there was absolutely no grains. I ran into problems only after the introduction of yogurt, because of the dairy, which I'm sensitive to, but I didn't know that then. Even though I didn't stay with the diet longer than a month, I've always thought that it would probably be a very good way of treating Crohn's or any inflammatory bowel disease.

Here's the name of the book. You can find it on Amazon, but if it's in your library your daughter can read it over and decide if it's going to be something she can do.

Restoring Your Digestive Health: How the Guts and Glory Program Can Transform Your Life by Jordan Rubin. N.M.D. and Joseph Brasco Here's a review of Open Original Shared Link

I'm wondering that, given that your daughter is so very sick, if maybe it would be better for her to stay home and and work on getting well before tackling college with it's stresses and problems with special diets. Celiac is hard enough, but Crohn's must make it so much more difficult.

ptkds Community Regular
ptkds
Posted

I noticed that you said your dd eats McDonalds fries. Those fries have gluten in them according to some ppl. So she may need to lay off of them and see if that helps.

Good luck and keep us updated!!

ptkds

lovegrov Collaborator
lovegrov
Posted

I would also suggest that it might be best to take a break from college to heal. Stress can make any autoimmune disease worse.

richard

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.