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PhoebeC

Lack of appetite after starting gluten-free diet

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My 10 year old daughter has been on the gluten-free diet for 6 weeks, and she's feeling worse than before the diagnosis. She has very little appetite, has frequent nausea in the evening, and has lost a pound or two that she really can't afford to lose. Our whole household is gluten free except for a few prepackaged items kept in a different room, so I think there's very little chance of cross-contact. She has been put on cyproheptadine to increase appetite and is trying valiantly to eat more, but she's just not hungry and it's very stressful for her, and all of us. She's eating peanut butter, pediasure, avocado, cheese, meat, and all the other calorie-dense foods we can think of.  No oats, not too much processed food. Can anyone give us suggestions or hope that this will turn around? 

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It will turn around, but it probably is going to take more time.  Yes, adhering to the gluten-free diet is critical,  but what doctors fail to tell you is that is can take time for antibodies to decrease.  For some it is a few weeks and for others months to years.  

It sounds like you are doing everything right.  Remember, her gut is damaged and eating anything can hurt to digest.  You might consider taking her off dairy for a few weeks until you see improvement.  Then add back in starting with products with the least amount of lactose (e.g. yogurt). Many celiacs are temporarily lactose intolerant.  It might help with the nausea.   When I accidentally get exposed to gluten, I stick with soups and stews, even cooked fruit, like applesauce because it hurts to eat!  

Are you sure the medication she is taking is gluten free?  Did you call and confirm with the manufacturer?  Did she have nausea befor she was diagnised?  The side effect of this medication is nausea.  Did the GI prescribe?  

Hang in there!  

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Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it.

She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on glutenfreedrugs.com (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was. 

 

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Dairy is a major issue with celiac, due to the enzymes to break it down being produced by the villi tips being mostly destroyed or damaged first. Eliminating for a few months may be critical. I might suggest digestive enzymes, I am taking Jarrow Enzymes at 2x the dose, Jarrow Bromelain, and sometimes some extra papaya enzymes. I have issues breaking down the large amounts of foods I consume otherwise (I am trying to body build bulk). I also would look at some protein powders if I was you. Vegan protein powders are easy to digest most times an can be great. Pumpkin Seed protein is the easiest on the stomach, being a balanced PH, high in zinc, iron, magnesium, it is very good for recovery and putting on weight in addition to others. Might also consider blends, try not to get anything with too much gums in it. I like NutraKey V-Pro and MRM Veggie Elite. I also buy a whole list of others.

On her food, veggies, and meats should be cooked to almost mush, try using a crockpot and stewing them. This will make them easier to digest and break down.
Is she having any other issues? Like Bowl issues? I find I can loose hunger if I back up, and I have to take magnesium like crazy and eat a whole lot of fiber to keep it moving.

Take it you already read the newbie 101 section about getting all new cookware, and deconing the house? Bit of a extra tip I swear by to everyone, Freezer Paper/Butcher Paper. Makes a nice clean prep surface and easy clean up.

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Wow!  Good for your daughter asking if the medication was  gluten free.  

She might not be lactose intolerant at all.  It is the one intolerance that is most common among celiacs.  Just stay the course.  It just takes time.  Each individual is different as to how they heal.  Kids are supposed to heal faster.  

Will the GI recheck her antibodies at three months or six?  Follow-up Care is important. 

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

 Soon, she will be just fine!  

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I had hardly any appetite when I went gluten-free, for about 6 months to a year. I lost about 40 pounds. I saw food as a danger and in turn, it was nauseating to me. The less I ate the more nauseous the food made me. One day I remember food just tasted good again and then I was able to put back on some weight. These days I don't eat half of what I used to pre- gluten-free, but my body is at a healthy weight. At least the doc thinks so. But food just isn't as attractive as it used to be. I learned to eat to live. Every bite counts towards nutrition.

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Hi Phoebe-

We're paddling up stream in the same boat.  I have a 12 year old daughter who was diagnosed with celiac disease 6 weeks ago.  She struggles with a lack of appetite, abdominal pain- often worse than pre-diagnosis, and increased pain after eating.  The evenings are the worst!  I call it the celiac witching hour.  After a few bites of dinner she often starts moaning and ends up on the couch. She is TINY, 10% on the growth chart for her age, skin and bones, and has lost 3 pounds over the 4 weeks.  I know how you feel, exhausted, discouraged, and terrified that trace gluten is contaminating your girl.

Over this past week and a half I feel we are turning a corner. Here is what has helped: 

1. Our GI rechecked her TTG's, they are coming down nicely, so I know she is not getting trace gluten.  Depending on your daughter's case, your GI may do the same. It was helpful to decrease my anxiety and rule that out.

2. Our GI took her off dairy a few weeks ago, I KNOW it's an awful thought and exhausting to contend with removing more from the diet, but it's not so bad. The good news is you will know quickly, in about a week if dairy is making a difference after removing it.  The problem is lactose in milk products. When healing from celiac, compromised intestines often don't successfully communicate with our other organs to emit digestive enzymes (including lactase, the enzyme needed to digest lactose in milk based products). Also, you can simply give your girl a lactase chewable enzyme for kids with a dairy containing meal is she really loves a certain foods that you'd rather not take away right now. Fairway Milk is lactose free, it's ultra filtered, so very high in protein, low sugar, and delicious (my kids like it better than regular milk). Truly, I found dairy is relatively easy to substitute. I will say however, taking our daughter off of dairy for two weeks did not make a difference, but maybe something that will help your situation.

3. When my daughter wasn't eating a substantial meal, she would still take her multivitamins. These can be tough on the stomach lining and cause stomach upset and nausea. I started to make sure she had a good meal before taking her MVI.

4. We were given the thumbs up on probiotics. My daughter took children's culturelle daily for a few months: prior to and after diagnosis. I pulled it 2 weeks ago just thinking maybe it's too much right now for her system. Maybe something to consider.

5. My daughter improved consistently (much less abdominal pain, formed BM's, and began eating much better) after adding childrens digestive enzymes with each meal. What I mentioned in #2, the lack of digestive enzymes with celiac disease, may include other enzymes in addition to lactase. Maybe it was timing, that she was naturally turning a bit of a corner, but it also coincided with starting "Tummy Zyme" kids digestive enzymes by Animal Parade. I read about the lack of digestive enzymes in the book "Celiac Disease-a Hidden Epidemic." I then researched kids digestive enzymes and these were rated well.

6. I found by talking to my daughter she could pinpoint what didn't upset her stomach, foods that she seemed to always tolerate well. Maybe due to simple ingredients, or maybe psychological, she could always tolerate skinny pop (popcorn, salt, and sunflower oil) and Milagro corn tortilla chips w/ Goodfoods chunky guacamole.  I add extras in her school bag, in the car, and on the go for snacks. I'd let her choose these over other healthy snacks or foods I had in mind if it meant calories and her actually eating. Maybe there are foods your daughter can pinpoint helping?

I recently talked to a few celiac disease moms and they said it took up to 3 months for their child to feel better and eat well consistently. I've also heard it's not uncommon for your child to have good/better days and then bad days during the healing process. 

I hope you're daughter begins to feel better soon and is able to take in more calories!

 

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On 10/23/2017 at 6:04 PM, desirun said:

Hi Phoebe-

We're paddling up stream in the same boat.  I have a 12 year old daughter who was diagnosed with celiac disease 6 weeks ago.  She struggles with a lack of appetite, abdominal pain- often worse than pre-diagnosis, and increased pain after eating.  The evenings are the worst!  I call it the celiac witching hour.  After a few bites of dinner she often starts moaning and ends up on the couch. She is TINY, 10% on the growth chart for her age, skin and bones, and has lost 3 pounds over the 4 weeks.  I know how you feel, exhausted, discouraged, and terrified that trace gluten is contaminating your girl.

Over this past week and a half I feel we are turning a corner. Here is what has helped: 

1. Our GI rechecked her TTG's, they are coming down nicely, so I know she is not getting trace gluten.  Depending on your daughter's case, your GI may do the same. It was helpful to decrease my anxiety and rule that out.

2. Our GI took her off dairy a few weeks ago, I KNOW it's an awful thought and exhausting to contend with removing more from the diet, but it's not so bad. The good news is you will know quickly, in about a week if dairy is making a difference after removing it.  The problem is lactose in milk products. When healing from celiac, compromised intestines often don't successfully communicate with our other organs to emit digestive enzymes (including lactase, the enzyme needed to digest lactose in milk based products). Also, you can simply give your girl a lactase chewable enzyme for kids with a dairy containing meal is she really loves a certain foods that you'd rather not take away right now. Fairway Milk is lactose free, it's ultra filtered, so very high in protein, low sugar, and delicious (my kids like it better than regular milk). Truly, I found dairy is relatively easy to substitute. I will say however, taking our daughter off of dairy for two weeks did not make a difference, but maybe something that will help your situation.

3. When my daughter wasn't eating a substantial meal, she would still take her multivitamins. These can be tough on the stomach lining and cause stomach upset and nausea. I started to make sure she had a good meal before taking her MVI.

4. We were given the thumbs up on probiotics. My daughter took children's culturelle daily for a few months: prior to and after diagnosis. I pulled it 2 weeks ago just thinking maybe it's too much right now for her system. Maybe something to consider.

5. My daughter improved consistently (much less abdominal pain, formed BM's, and began eating much better) after adding childrens digestive enzymes with each meal. What I mentioned in #2, the lack of digestive enzymes with celiac disease, may include other enzymes in addition to lactase. Maybe it was timing, that she was naturally turning a bit of a corner, but it also coincided with starting "Tummy Zyme" kids digestive enzymes by Animal Parade. I read about the lack of digestive enzymes in the book "Celiac Disease-a Hidden Epidemic." I then researched kids digestive enzymes and these were rated well.

6. I found by talking to my daughter she could pinpoint what didn't upset her stomach, foods that she seemed to always tolerate well. Maybe due to simple ingredients, or maybe psychological, she could always tolerate skinny pop (popcorn, salt, and sunflower oil) and Milagro corn tortilla chips w/ Goodfoods chunky guacamole.  I add extras in her school bag, in the car, and on the go for snacks. I'd let her choose these over other healthy snacks or foods I had in mind if it meant calories and her actually eating. Maybe there are foods your daughter can pinpoint helping?

I recently talked to a few celiac disease moms and they said it took up to 3 months for their child to feel better and eat well consistently. I've also heard it's not uncommon for your child to have good/better days and then bad days during the healing process. 

I hope you're daughter begins to feel better soon and is able to take in more calories!

 

Thanks for sharing your story. It does sound very similar to my daughter, especially the "witching hour."  Please post again if you find anything that turns out to be successful! It's helpful to hear others' experiences.

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Just wanted to revive this thread with an update. My daughter's appetite/calorie intake is slightly better these days, especially in the morning--though overall I'd say that she usually still has to eat deliberately rather than out of true hunger. The main problem is that she still feels terrible most evenings. She often can barely tolerate dinner some nights (we don't force it, and she eats enough at breakfast/lunch/snack that she can do without major evening calories). She describes it as a general malaise, "like when you have a fever and you feel a little nauseous and bad all over, not really hurting in one specific place." No diarrhea, cramping, or other specific GI symptoms.

It seems much more related to time of day than to anything in particular that she's eating. She's still eating no oats. She has a relatively low-lactose diet--a little milk in her morning smoothie (that doesn't seem to affect her at all), doesn't like yogurt, occasional hard cheese that would be low in lactose already. Her diet doesn't vary a lot right now. She uses ginger chews and ginger tea. We're exploring probiotics and did take them a few times, but her celiac specialist warned that some probiotics are grown on a gluten-containing medium and we are awaiting a list of approved probiotics from her nurse. 

We are aware that there is probably an anxiety component--she's definitely anxious--but we also don't want to discount her symptoms after all those years of thinking she had a "nervous tummy" when it was really celiac. Does anyone have other insights or suggestions to help with evenings?

thanks!

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Hi, sorry to suggest removing yet another thing from the poor girl, but have you tried going completely milk free. So not just limiting lactose, but trialling a period with absolutely no dairy whatsoever? 

Reason being, lactose intolerance is only one of the two possible milk issues, the other is casein intolerance. I spent a long time allowing myself small amounts if milk on basis that my stomach was ok, only to realise my issue was the casein not the lactose. That means complete avoidance. 

May not be that, but a trial of completely avoiding it (substituting soya or almond based alternatives) would at least exclude it? 

Best of luck to you both from all the way across the Atlantic :)

matt

 

 

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6 hours ago, PhoebeC said:

Just wanted to revive this thread with an update. My daughter's appetite/calorie intake is slightly better these days, especially in the morning--though overall I'd say that she usually still has to eat deliberately rather than out of true hunger. The main problem is that she still feels terrible most evenings. She often can barely tolerate dinner some nights (we don't force it, and she eats enough at breakfast/lunch/snack that she can do without major evening calories). She describes it as a general malaise, "like when you have a fever and you feel a little nauseous and bad all over, not really hurting in one specific place." No diarrhea, cramping, or other specific GI symptoms.

It seems much more related to time of day than to anything in particular that she's eating. She's still eating no oats. She has a relatively low-lactose diet--a little milk in her morning smoothie (that doesn't seem to affect her at all), doesn't like yogurt, occasional hard cheese that would be low in lactose already. Her diet doesn't vary a lot right now. She uses ginger chews and ginger tea. We're exploring probiotics and did take them a few times, but her celiac specialist warned that some probiotics are grown on a gluten-containing medium and we are awaiting a list of approved probiotics from her nurse. 

We are aware that there is probably an anxiety component--she's definitely anxious--but we also don't want to discount her symptoms after all those years of thinking she had a "nervous tummy" when it was really celiac. Does anyone have other insights or suggestions to help with evenings?

thanks!

I still vote on removing dairy completely for 60 days. This could help in many ways Probiotics are helpful normally later on, but initially if she has damaged or leaky gut it could make the issues much worse. It works for some makes stuff worse for others. I keep going back to the dairy as it is common to cause a feeling of bloat, fullness, inflammation, leaky gut issues, etc. Try making or using nut based milks, heck one of my favorites and simplest ways is to blend a few tbsp of nut butter into water to make a nu milk drink. Your doing smoothies? Try adding 1/4-1/2 cup of almond butter to a water base blend  it first to get your starter base milk.  Adds a ton of good easy to digest calories if you use a nut butter, I love doing this with walnut butter, try it with her favorite nut butters.  Kite Hill makes some good heavy almond based cheeses you can find in most stores. I have some coconut milk blended soup recipes if you wish make something easy to drink and get in some good fats. Have a butternut curry, pumpkin curry, and one tI even made that taste like pumpkin pie.

I posted a recipe the other day for a avocado icing, >.> You could make something up like this and she can just eat it by the spoon.

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My only symptom was slight nausea that lasted all day. I had a lot of mashed potato soup as it was easy on my insides (the mashed potatoes dissolve in the chicken broth). And I had smaller meals 6x per day. Easier on my insides to avoid very solid food. The nausea lessened and went mostly away in the first six months.

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Hi many posters gave you excellent info. I thought I would chime in a welcome to. I spent months blending my foods after my gluten challenge. I had 13 food intolerances (I am down to 3) and reacted to even the simplest additives so  I began to react to even store bought almond milk and coconut milk-whole foods was the only way as they say. I had to make my own milk from almonds I still do. I lost corn and milk which I ate prior to the challenge. In hindsight corn was likely a problem before I missed it as my immune system revolted even worse to it after the challenge. I was shocked to lose milk and like JMG it was casein-my joints in particular communicated they were being attacked immunologically when I ate a trigger food. I found this out by food diary and using a non diary cheese that had no lactose but had casein from milk added. My GI was always messed up and has been since youth so I could not use it as my gauge to determine my other intolerances. The Celiac team suspected I had them and told me how to remove all the foods aka white noise to find them.  I am pretty sure I finally figured them out now. 

Besides my intestines issues, my endoscope pictures my stomach and esophagus looked horrendous to the naked eye, my gallbladder and enzymes struggled as well. So digesting fats and proteins was hard for quite sometime. Small amounts super small bites, tons of chewing etc. An acupuncturist through treatment helped to turn my gallbladder back on I remember vividly the night it fired back on! While she is young she may have some organ function/impacted/ functioning sub par although youth is on her side.

I am glad she got into ginger it helped me immensely. I did fresh ginger mined in hot water often or if desperate took right off spoon.

I lost my beloved probiotic I took for years it was gluten-free, but my other intolerance corn was in it.  Out it went. I began to make water keifer instead. My science side though ok Kitchen microbiology- a bit unorthodox for a past lab person but ok. So I play kitchen microbiologist brew it up (you feed them sugar and filtered water-they consume the sugar the end product does not contain it). In my second ferment I add 2- 1" inch pieces of ginger and it is delicious. A bit like ginger ale which is great since I can't drink it anymore due to every ginger ale having HFCS. (just another option to consider if she continues to have problems with probiotics.)

Good luck

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Hi everyone,

I thought it might be helpful to check in with an update. My daughter is doing better--not perfect, not amazing, but better. Her bloodwork is improving (TTG-IGA from 112 to 43 in 3 months, CBC normal). She's less nauseated in the evening and is able to get enough calories most days. We've figured out some of her anxiety triggers and realized that she does much better if she sticks to a predictable schedule of eating ("relaxed" weekends where there could be unplanned eating--previously considered "fun!"--are really hard for her). She hasn't really started gaining weight, but she hasn't lost any more, and days are much more consistent. We started seeing a psychologist with her and she started yoga class, both of which she likes and seem very helpful with the mind-body connection. The biggest challenge has been knowing which of her symptoms are anxiety related and which of her symptoms are physical signs of celiac, since vague nausea and lack of hunger could really be either/both.

I truly appreciate all the advice on this forum. Hearing your experiences and what has worked for you has been so, so helpful.

For other newly diagnosed families, I also wanted to share that sometimes spending TOO much time this forum has been a little overwhelming and anxiety provoking for me. Not because there's bad advice but because the "informed brainstorming" model of the forum produces so much advice! I think it's good to remember that you shouldn't take all the advice at once, and that it's important to have doctors you can trust to go over everything with you personally.  I think many (not all but many) of my daughter's current symptoms are anxiety related. I'm glad we decided to work on just good mental health + very strict gluten-free diet first, because if we had also cut out casein, lactose, corn, etc. at the same time, we wouldn't have been able to determine exactly why she was feeling better, and we might have unnecessarily restricted her diet. I am keeping open the possibility of cutting more things out of her diet in the coming months if she doesn't improve more--and I'm glad to know about all the possible reactions to other foods--but for now it seems like working on anxiety has been the most important piece.

Thank you all! best wishes for a healthy gluten-free holiday.

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Has your daughter been checked for nutritional deficiencies?  Many newly diagnosed people have vitamin and mineral deficiencies.  

Iron deficiency can cause a loss of appetite as can deficiencies of B12 and vitamin D.  Additionally, anxiety can be a symptom of vitamin D deficiency.  If deficient, more than a multivitamin might be necessary to replenish the missing nutrients.  

Hope this helps.

 

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23 hours ago, knitty kitty said:

Has your daughter been checked for nutritional deficiencies?  Many newly diagnosed people have vitamin and mineral deficiencies.  

Iron deficiency can cause a loss of appetite as can deficiencies of B12 and vitamin D.  Additionally, anxiety can be a symptom of vitamin D deficiency.  If deficient, more than a multivitamin might be necessary to replenish the missing nutrients.  

Hope this helps.

 

Thanks. She has normal B12 and zinc levels and from her blood work she does not appear anemic.

Although she was not tested for vitamin D recently, she almost certainly has low vitamin D since it's winter and we live in the north. She was on supplements last year (before diagnosis) at the suggestion of her allergist, but she went off them because they were not gluten-free. I will ask her doctor about adding gluten-free vitamin D supplements back into her diet. Thank you for the suggestion.

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    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.