Refractory Celiac Disease

[Bri's mom]

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.

[chrissy]

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]

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]

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]

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]

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)

[Bri's mom]

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.

[ravenwoodglass]

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]

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

Kat

[Bri's mom]

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]

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]

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]

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]

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