Best diet for Celiac recovery, aside from being gluten-free

Welcome to Connect @rhyo9,

I’m sorry to hear about your daughter’s symptoms - I can imagine your worry!
As a start, I’d encourage you to visit the Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/tab/newsfeed/ – a great resource for information, current therapies, clinical trials, etc; you can also browse through newsfeed posts from Mayo Clinic experts.
For instance, these videos with Mayo Clinic gastroenterologist and celiac disease expert, Dr. Joseph Murray:

– Does Healing Occur After Diagnosis of Celiac Disease? https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/does-healing-occur-after-diagnosis-of-celiac-disease-1/
– Mayo Clinic Dietitian Weighs in on Diet and the Celiac Patient https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/mayo-clinic-dietitian-weighs-in-on-diet-and-the-celiac-patient-1/
– Tips to Avoid Cross-Contamination in Gluten-Free Foods https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/tips-to-avoid-cross-contamination-in-gluten-free-foods/

Here are some published articles/studies that might interest you as well:
Celiac Disease: Ten Things That Every Gastroenterologist Should Know https://www.cghjournal.org/article/S1542-3565(14)01053-2/pdf
Celiac disease: Alternatives to a gluten free die thttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3091139/
Emerging Therapeutic Options for Celiac Disease - Potential Alternatives to a Gluten-Free Diet https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3594957/

I’d also like to introduce you to a few members who might be able to share their insights and provide more information to help your daughter. Please meet @astaingegerdm @oakbourne @jenniferhunter @bentley33 @lighthouseceliac @reny @sue225 @jjren @airey2 @guthealth @emyliander @peabody88

May I ask if you’ve considered getting a second opinion for your daughter, @rhyo9?

Hi @rhyo9,
I don’t mean to inundate you with websites and reading material, but I think you might wish to view:
What to do When A Gluten Free Diet Doesn't Work https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/what-to-do-when-a-gluten-free-diet-doesnt-work-1/
Gluten may not be culprit.. https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/gluten-may-not-be-culprit-in-nonresponsive-celiac-disease/mac-20430035

Sorry for the rather long response. I have a very strong possibility of being Celiac. Originally I went gluten free for another condition and was desperate to try anything to stop it. I (and others) noticed I started gaining weight (I've been underweight all my life) and my energy returned. After being gluten free for 2 years, I decided I wanted to be tested for Celiac. However, a person must be on gluten for an accurate test, and I was not on gluten, but got tested anyway. I had at least 2 strikes against me: (1) I have the genes (2) I have the blood line. My Dr. told me he had noticed the Irish tend to get it more, and I'm 3/4 Irish. Not to mention all of the GI symptoms that had gone undiagnosed since my teens.
This past spring I decided I wanted an accurate Celiac test, and with dr. approval, was told to go back on gluten for 2 weeks. After 1 1/2 days I lost all my energy and by day 3 the pain returned. So I decided it was not worth it and went back on gluten free. I consider myself Celiac, although I will never know for sure. But I have most/all of the signs. Gluten definitely bothers me.

I also discovered a few years ago that oats bother me, even those labeled gluten free.They are often processed on equipment that handles wheat items too (cross-contamination). My gluten free magazine ("Simply Gluten Free"), recommended I try Purity Protocol oats. They are organic (no pesticides) and grown in fields reserved only for oats and processed on equipment only for oats.
I've tried the enzymatic peptides that are supposed to help if you get accidentally glutened, but it did not work at all.

Gluten can hide in many places (soy sauce, soups, gravies, medicines, even candy). If your daughter is eating cross-contaminated foods (using shared equipment or shared cooking utensils), or eating hidden gluten, it could cause problems. Also there is something called FODMAP. I don't know what it is, but certain foods (like apples) contain items that can cause problems. I have been told by 2 doctors to eat my fruits and veggies cooked. They contain natural estrogen in varying degrees, and I cannot have estrogen. Cooking them kills the estrogen.

Thanks so much for your reply and all the resources you linked.

They ran an acylcarnitine profile and all was normal, so I'm not worried about the MCAD / MCT thing anymore, but her oral diet is still an issue. Wednesday she was served eggs twice as well as a grilled cheese sandwich. She then had yellow diarrhea and vomited twice the next day and threw up her NG tube both times. Since she's on an acid blocker, they have to x-ray to confirm NG tube placement; they decided not to re-insert the tube because of this. Aside form fat malabsorption being an issue, her arachidonic acid intake is incredibly high and I don't think Osmolite has DHA. I suspect excess prostaglandin (E2 or F2a) is involved in her nausea/vomiting; her symptoms are usually worse in the late luteal phase of her menstrual cycle - which she is now in. Monday and Tuesday last week were good days; she had been served what i would consider to be a healthful vegetarian diet - black beans, sweet potatoes, tofu (though rather high fiber for someone with intestinal damage). She did not vomit those days.

I finally consented to Remeron being added to her already long list of meds. I am scared, but I don't think there are any alternatives. You can't get medical marijuana in this state except for epilepsy, and even then, I don't think any hospital in the US can offer it.

I would love a 2nd opinion (and a different dietician!). I believe her Celiac diagnosis is correct and I'm certain that her eating disorder diagnosis is wrong. I suspect there may be some other factor that causes her Celiac symtoms to be atypical (though I understand that Celiac symptoms are highly variable). I don't know how to go about getting a second opinion, though.

Hi @rhyo9,

Mayo Clinic in Rochester, Minnesota, has been recognized as the best gastroenterology and GI surgery hospital in the nation by U.S. News & World Report

If you’d like a second opinion from Mayo Clinic, please call one of our appointment offices – you can also request an appointment online. The contact information for all 3 Mayo Clinic locations (Minnesota, Arizona, Florida) can be found here: http://mayocl.in/1mtmR63
The Clinic’s representatives/schedulers will ask questions to help direct you to the best specialist, either at Mayo or closer to home.

At Mayo Clinic's campus in Minnesota, children and adolescents with digestive disorders receive care through the Children's Center. Pediatric gastroenterologists work in close collaboration with other pediatric specialists to provide comprehensive care for children.
In addition, the Mayo Clinic Inflammatory Bowel Disease Center for Children is committed to a compassionate, integrated approach to managing inflammatory bowel disease (IBD), including growth and bone development as well as psychosocial issues unique to children with IBD. https://www.mayoclinic.org/departments-centers/gastroenterology-hepatology-digestive-care/sections/overview/ovc-20348241

@rhyo9, I’m so glad that you’ve reached out to the Connect community, so please keep us updated and continue to post any questions or concerns you might have. I wish you the best of luck.

Before I found out about being possible Celiac, I found out I had endometriosis. I had had symptoms all my life (heavy cycles, severe abdominal pain and both got worse as I got older). After 20+ years I was diagnosed. but until then it was pure agony. My cycles were out of control. I would be starving hungry, but after a few bites I would get nauseated and start hurting. Turned out I had a large ovarian cyst consisting of endometriosis. It took years to find out, in part because diagnosing endometriosis involves surgery. Endometriosis causes estrogen dominance, because it feeds off of estrogen and often produces its own supply, plus the body makes its own also. So the body is getting a double dose of estrogen. Perhaps your daughter should see a gynecologist.
I have heard, but don't know if it is true or not, that people with Celiac Disease (which is autoimmune) tend to have other autoimmune diseases. I know 3 celiac friends and two also have endometriosis, but the other has only Celiac. So perhaps someone who specializes in autoimmune diseases would help.