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My 17-yr old was diagnosed a couple of weeks ago after finally getting an upper endoscopy. She's been in the hospital for over a month after intractable vomiting and weight loss. First she was in a regular pediatric ward, then they moved her to an eating disorders unit after misdiagnosing her with an eating disorder. Fortunately, they had ordered a Celiac antibody test, and when the blood work finally came back positive, they ordered an endoscopy. But she is still stuck in the eating disorders unit. She is still on an NG tube & they are still trying to re-feed her as though she has an eating disorder - a 'normal' diet [edit: a normal gluten-free ovo-lacto vegetarian diet]. Yes, 'we want all the macronutrients represented' (dietician's statement) - in her vomit. When throws up, she throws up the tube and it has to be replaced and they check the position with an X-ray - sometimes several to get the position correct.

I don't see what would be so bad about doing a limited diet in view that her gut is terribly damaged and needs time to recover [edit: due to possible malabsorption or additional sensitivities]. Maybe just rice for a day or two (she's still getting Osmolite for most of her calories, so no worries on nutrition), then add new items in slowly. Does that not make sense?

Any advice on diet or anti-nausea drugs* would be appreciated.

I seriously think she would be better off at home. We could substitute the NG tube feedings with a shot glass full of Ensure Plus every 30 min for 12-14 hrs, if necessary. No more X-rays. I gather it may take months for her gut to heal.

*she's already taking Zofran

Edited by Rhyo9

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So sorry you are having to deal with all this.  Talk to your doctor If she has been diagnosed she needs to be gluten free. If the hospital is not taking care of that of course she is still vomitting. This has to be torture for her and you. I would want to get my child out of that situation as soon as possible also. I hope this is over for you soon and she heals quickly.

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Sorry, I should have mentioned that she has been on a gluten-free diet since the blood work came back (I've lost track of time, but I think it's been over a week). What I meant to say is that other than being gluten-free, they have made no adjustments to take into account possible malabsorption or sensitivities (which I hope would be temporary) due to intestinal damage from Celiac.I have read this can happen, though I don't know how common these problems are. Complicating the picture is that she is ovo-lacto vegetarian and they don't approve. Good thing she's not vegan.  She seems to be having more acne now that she is given 2+ eggs a day, and excess prostaglandin production, IIRC, plays a role in both acne and gut inflammation.

This whole thing has been horrific. I fear if I try to get her released, they will attempt to remove her from our custody, as her weight is still very low - she has only just recently exceeded her initial admission weight. Since she is 17.5 yrs, I have considered getting her legally emancipated so they can't pull that BS. I'm sure that would take a few weeks, though.

Thank you for your kind words.

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With damaged intestines many can not digest dairy as the enzymes to break it down comes from the tips of the villi. So lactose intolerance is very common and dairy should be avoided til some healing. Meat can be tougher to digest unless stewed til super moist but eggs are much easier to digest so she should stay on those if she can. But my tip is to mix in almond milk or coconut milk beat in with eggs and cook over low heat so they are soft and easy to digest...bit like a custard in texture. I find stewed or blended veggies easier to digest, I often make green powder of dehydrated and powdered leafy greens then add to shakes or egg dishes to get my greens in easier to digest.
Digestive Enzymes are going to be really helpful, Realzymes makes one specific to your diets, you have to take them in ratios to what your eating to get nutrients from them.
Pioneer labs makes a Vegan Celiac Shake which is designed to be easy on the gut and help soothe it and give your nutrients. I might suggest mixing it with a nut butter or coconut milk to add in calories.
https://www.luckyvitamin.com/p-166491-pioneer-celiac-support-comprehensive-clear-meal-rice-protein-shake-natural-vanilla-flavor-17-78-oz
Many celiacs have issues with B-vitamins, Vitamin-D, Magnesium, Iron, etc. and need to supplement for awhile. Liquid Health Makes B-Mega Complex, Neurological Support and Multivitamins in liquid forms you can mix in. If they say she is low in Iron then taking a Iron Patch you put on the skin would be better then pills/liquid to avoid nausea. Magnesium Gycinate by Doctors Best or if she has constipation Magnesium Citrate by Natural Vitality could help, but wait til the vomiting stops before trying the latter.

-_- I would never trust a hospital to feed me a safe diet, But I developed a whole list of food allergies, sensitivities, and intolerance issues that cause me to vomit or feel sick. A elimination diet might be needed later down the road if she keeps vomiting on a true gluten free diet.

Wish you luck in this, I know how much of a living hell it was for me thinking I was dying before getting diagnosed. She is not alone and later when she is feeling better this group is great for support and advice.

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I agree, she should not be consuming dairy at this early point in the healing process.  I also agree she should be tested for food allergies asap.

A good diet for most of us starting to eat gluten-free is meats, eggs, veggies and nuts.  It may seem to be a little boring diet but the point is not to be a gourmet but to give the body a chance to heal.

It is helpful to avoid sugar and carbs at first also.  The damage to the gut lining can cause bacteria to multiply out of control and cause many symptoms.  The gut is part of a system that includes chemical signals to the liver/gall bladder to release enzymes to digest foods in the gut.  The gut damage can interrupt the proper functioning of that signaling system.

It is common enough that newly gluten-free people have negative reactions to many foods beyond just gluten (wheat, rye and barley).  A damaged gut can react to any food.

If her weight is dangerously low it makes sense to keep her in the hospital until she stabilizes.  But make sure the nutritionist understands the basics of celiac recovery.  The University of Chicago Celiac Center is a good resource for information.

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Rhy09,

Has her Gall Bladder been checked?  It can cause repeated vomiting.

Here is an article about it.  Espom salts can sometimes move a stone by relaxing the common bile duct....sometimes Lemon Juice is also used in combination with Epsom Salts to move a gall stone.

Here is a couple links on this topic.

https://www.healthline.com/health/gallbladder-problems-symptoms#symptoms 

https://www.livestrong.com/article/536262-does-lemon-juice-help-pass-gallstones/ 

I hope this is helpful but it is not medical advise.

Posterboy,

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Celiac disease may be linked to gallbladder disease.  I am sure your daughter was probably tested for gallstones (ultrasound or Ct scans).   That is easy to catch.  A diseased gallbladder can only be caught by a HIDA scan.  

My gallbladder was diseased.  It would not release bile causing me nausea and vomiting.  All this was before my celiac disease was diagnosed.  Surgery helped, but treating my celiac disease with a gluten free diet really solved my anemia and digestive issues like lactose intolerance.  I think that my gallbladder might have been saved if my celiac diagnosis had been made much earlier.  My gallbladder issues started when I was 16.  

I hope your daughter gets well fast.   Make sure her diet is well rounded.  My kid’s friend is vegan.  She is the least healthiest of her group.  Why?  Because she thinks that Skittles candy is a good because it is vegan (Oreo cookies too).   Not saying that your daughter is like this, but some kids who are vegetarian do not eat enough foods to take the place of meat or frankly they do not consume enough veggies.  

Not really knowing your situation, I would work with the hospital.  Get her weight up.  As long as you insure everything is actually gluten free (hospitals make errors), she should heal enough and then you can focus on identifying other intolerances.  However, dairy is a well known intolerance for most celiacs which often resolves with healing.  

Make sure all her meds are gluten free. Look them up on pill box (gov site) or talk to the hospital pharmacist.  

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I just wanted to add that my hubby had surgery for a congenital issue.  As a result he was in the cardiac ICU recovery ward.  Even though he does not have high blood pressure or cholesterol, they treated him as a cardiac patient. We just went with the flow.  Our main concern was insuring that his food was really and truly gluten free.  We had several discussions with the hospital dietician, doctors, nurses and pharmacists.  It was a good experience.  The hospital even let us have a mini refrigerator too.  I was able to bring him in food, but the hospital kitchen did a good job.  The nurses were great and let me look up each medication.  What stunned me was that the generics could change daily due to supplier changes.  His nurse had me check every medication until my hubby was able to do so himself.  Later, our doctors insisted on name brands just because we demanded it (less work and hassle for the pharmacies in the long run).  We also do not have to pay more for name brands because we have celiac disease.  

I am not a doctor, but focusing on healing from celiac disease should be the number one goal.  She could have concurrent issues, but those can be addressed later with the exception of dairy.  She may not be able to digest it now as it sounds like her damage was severe.  (Do you know the Marsh Stage of her biopsies....just curious?).  Try to stick with soft mushy and easy-to-digest foods for a few weeks. For example, try nut butters as  eating nuts might just hurt to digest if her villi is gone, but that can grow back!  Anything she eats, even gluten free can hurt to digest for a few weeks.  

As far as her diet, I realize that it is a personal choice.  She can remain as a vegetarian, but she will need to make sure she is eating really well.  Think of food as medicine.  The better the quality, the faster the healing, in my opinion.  It might be tough as she is a teen.  But healing from celiac disease can occur quickly if you master the diet.  

There is a steep learning curve, so feel free to ask questions!  

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Thanks to all for your suggestions; I'll be looking into them. I'll ask about possible gallbladder issues; she's had a CT scan and ultrasound, but I've not heard of a HIDA scan.

~

Her diet was pretty good before, even though her motivation to be vegetarian was primarily ethical, not for health reasons. I had been telling her in months prior to not overdo the wheat and cheese (pizza, mac and cheese) as they are generally considered to be inflammatory and we (her pediatrician & I) had thought she had endometriosis. But she would always get some fruit and veg at buffets in addition to mac and cheese - so she understands the need for balance. Her initial blood work showed her nutritional status to be rather good despite all the vomiting and weight loss, which I think led to them not ranking Celiac as a likely cause.

Last night no vomiting, though she did have diarrhea (unusual for her except as part of an adverse reaction to Reglan). From her food log, her oral diet yesterday was at least 60% fat. She doesn't seem to have problems with carbs, at least not starches or fructose - perhaps lactose is an issue. Even before restricting gluten she was able to tolerate plain white rice. I had E coli O157:H7 (tmi warning: I was pooping tar and blood) many years ago and was instructed by the doctor to follow the old flat soda, then BRAT diet (bananas, rice, applesauce and toast) thing; it worked - everything back to normal after a week or two.

~

I've been gathering a list of resources for her including in-person support groups as well as online; I hope she visits this forum or another for support when she is released. The eating disorders unit is a psychiatric unit which is highly restrictive, so no cell phones. Also, all patients are watched while using the bathroom and showering & she has to have a nursing assistant at her side all the time since she has an NG tube; apparently it is long and stringy enough to be considered a possible means to suicide. It has been frustrating to meet with her case manager and have them bring up 'body image issues' when she has never had any.  Networking with other people with Celiac will probably be more helpful to her than therapy for a non-existent eating disorder ...

~

Thanks again.

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Today she was served a grilled cheese sandwich at lunch and she ate a bite and realized they had used regular wheat bread. Now I'm wondering about the pasta earlier in the week... 

~

How quickly do you notice results of an incident like this?

 

 

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49 minutes ago, Rhyo9 said:

Today she was served a grilled cheese sandwich at lunch and she ate a bite and realized they had used regular wheat bread. Now I'm wondering about the pasta earlier in the week... 

~

How quickly do you notice results of an incident like this?

 

 

You may need to bring all her food.  But I would contact hospital admin and the legal dept and make a fuss.  

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I would very much like to bring her all her food, but I'm pretty sure we are not allowed to do so. I'm at my wit's end - I'm thinking about getting her transferred to a hospital with a celiac center.

 

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2 hours ago, Rhyo9 said:

I would very much like to bring her all her food, but I'm pretty sure we are not allowed to do so. I'm at my wit's end - I'm thinking about getting her transferred to a hospital with a celiac center.

 

At this point I would, I would also really want to talk to upper management about it, and threaten legal actions. This is border line food poisoning case, they know she is celiac but give her wheat bread? It is like they are trying to keep her sick, not to mention damaged villi do not produce the right amounts of enzymes to break down dairy and they throw cheese on it?

Get her transferred ASAP, and I pray you find someone to help you get legal help.

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Go Raise A Really Big Stink.

 

Compare what has happened with the grilled cheese sandwich, with a patient getting the wrong drug/wrong dose of a drug, and the liability and patient harm from that.

If your daughter has been diagnosed with Celiac disease, she was unequivocally caused harm by the hospital provided food. Just the same as if she'd been mistakenly been given a drug that was known to be contraindicated for her.

 

Make some noise about it. 

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I talked to the Dr (the resident coordinating her care)  just now on the phone and I think I stayed pretty reserved but told her to also call my husband. Angry women are often perceived (even by other women) as being 'hysterical' - even when their anger is justified. So I told her to talk to my husband as well. I think my husband's plan is to try to take her home (though release may be put on a 72 hour hold); if her condition worsens we may try to get her to a hospital with a Celiac center. That sounds like a plan, doesn't it? I'm so worried...

~

Dietician just called  - tried my best, but still managed to call her approach to recovery 'silly' a few times. She agrees that the wheat bread mistake was unacceptable - well, of course. I still have no confidence in her or the kitchen.

 

 

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Get her out of there ASAP, either home or to a hospital with a reputable celiac center - which ever is more achievable first. I’ve been in hospital a few times since my diagnosis and it’s been miserable every time- they cannot guarantee allergen free food. The only item the dietician could be sure was safe was a particular brand of chicken broth and the jello, so I basically starved while I was there.

i highly recommend further allergy testing; when you have celiac disease, you have leaky gut, and when you have leaky gut other foods are also leaking through, which triggers antibody formation against those other foods too. So multiple food allergies are very common. I’ve found Enterolabs.com to be very helpful in identifying additional food allergies mediated by IgA antibodies, which is the antibody class involved in celiac disease. They measure stool antibodies as they need to assess what is going on in the gut itself, and antibodies in your gut end up in the stool. The IgA antibodies stay in your organs (such as your gut) and don’t circulate much, so blood levels,and therefore blood tests are sometimes unpredictable. Skin alllergy tests measure a different class of antibodies so don’t have anything to do with celiac reactions, tho you may have additional allergies in other antibody classes. You can figure out all the allergies later; right now I’d focus on the IgA ones because they are the solders in the gut warfare going on in her body right now. 

Keep her diet very simple until she stops throwing up. You have to break things down into small steps to achieve the long term goal of getting her healthy.  If eggs are causing inflammation, no eggs for right now. One nut butter on a plain, salted rice cake is all I’d do til things calm down, then slowly add back others. Or perhaps even better, just a ripe avocado cut in half and lightly salted, then spoon it out like ice cream. While “rounded nutrition” is important long term, your immediate goal is to stop the vomiting and/or diarrhea, so keep it very simple until you achieve that. If 2-3 days go by on just those things and she is still vomiting, then she is reacting to one or both of those 2 things, so switch to something else equally simple. Nutrition only counts if you get it in and keep it down, so nutritionally speaking, finding something she can keep down is your ONLY goal right now. 

Good luck and I am sorry your daughter is going through this. 

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Thanks for the info on that and food sensitivites.

I just now got to look at some of her medical files - her Marsh score was IIIA, whatever that means. I think her anitbody titre was around 170.

She's home now. I was happy that she is now 82.5 lbs (5' tall), 2 lbs more than when she first went to hospital.

~

Thanks, again to all.

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22 minutes ago, Rhyo9 said:

Thanks for the info on that and food sensitivites.

I just now got to look at some of her medical files - her Marsh score was IIIA, whatever that means. I think her anitbody titre was around 170.

She's home now. I was happy that she is now 82.5 lbs (5' tall), 2 lbs more than when she first went to hospital.

~

Thanks, again to all.

I think they have a chart on this page explaining the Marsh levels to some degree https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/

 

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2 hours ago, Rhyo9 said:

Thanks for the info on that and food sensitivites.

I just now got to look at some of her medical files - her Marsh score was IIIA, whatever that means. I think her anitbody titre was around 170.

She's home now. I was happy that she is now 82.5 lbs (5' tall), 2 lbs more than when she first went to hospital.

~

Thanks, again to all.

It is such a relief to know she is now home. Be sure to get all of her first degree relatives checked now even if they don't seem to have symptoms. Do read over the Newbie thread at the top of the Coping section if you haven't already, as you will need to make sure that she is eating safely now that you have her home and under your loving care. I hope she heals soon and do ask any other questions you need.

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I am glad to hear she is home and gained a little weight! :)

She is going to have a tough time recovering from celiac damage if she stays completely vegetarian though.  The body needs protein to heal itself.  It also needs  a variety of vitamins and minerals and fats.  Maybe she would find it acceptable to eat fish?  Salmon, tuna, mackeral and sardines are a good source of vitamin D and omega 3 oils that are helpful.  Avocados were already mentioned and they are good.  Peanut butter has protein and calories she will need too.   There is a brand of gluten-free crackers called Blue Diamond Nut Thins she could try.  There is So Delicious brand coconut ice cream substitute also.

The human brain is over 90% fat cells.  So getting oils and fats in the diet is important.

Edited by GFinDC

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Well if she feels up for it later, I have list safe gluten free alternatives and vegan options. Might give a bit of light as stuff to look forward to. >.< I am not vegan but have issues with dairy and limited meat intake for other reasons. I eat Plant Based Califlour Foods Pizza with Miyoko Vegan Mozzarella as a treat once a month at least. Also have recipes for Vegan Cheesy Bread. If you find a noodle she can eat (I use no carb Miracle Noodles)  and a Vegan Cheese she likes you can see about blending the cheese with a bit of almond milk into a sauce and make Mac & Cheese or a type of Alfredo.

Companies like Spero Foods makes ScrambleIt and Egg Salt for a Vegan Egg Option along with Vegan Cheeses that taste like Goat Cheeses
Miyoko, Kite Hill, Leaf Cuisine, Tree Line, Seite Queso make some of my Favorite Cheeses, But there are others I can not have like Daiya, Pamalas Creamery, Vio Life that are gluten free and vegan.
Yogurts, Milks, and Cheeses also from Kite Hill, Coconut Secret, and Silk
I also enjoy healthy fats from avocados, almond butters, nut and seed based cheeses, Sunbutter.
There are plenty of vegan protein powders, I like buying bulk pure ones so  I can control what is in them. Naked Pea or Growing Naturals for pea protein, Jarrow Formulas for Pumpkin Seed Protein, Nature Plus for Sunflower Seed Protein. Just to name a few. I mix them with Almond, Cashew, Coconut, or Walnut Milk normally.
Safe Vegan Meats by Beyond Meat, Like Burgers, Sausages, Italian Sausages, Taco and Plain Ground Options for treats.
Another option is to use Jack Fruit from Naked Jackfruit and season it for BBQ, or Ground up for a sausage mix.


Few random thoughts in case she starts feeling cornered about a limited diet, But for now try to keep to a whole foods diet til she heals a bit, and stick to a few pure foods at a time cooked til super tender and easy to digest. with a food diary to see if she has any new food intolerance or sensitivities as they do seem to crop up after a exposure.

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