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Feeling Discouraged


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#1 Denine

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Posted 27 January 2013 - 10:31 AM

My 10 yo daughter was diagnosed a week ago. She has been on the gluten-free diet since that time. I have been extremely careful about cross contamination. She has been eating mostly whole foods. I have read every label and checked websites for gluten-free confirmation. She is either drinking lactose free milk or using lactase.

All that being said, she is in as much pain as she was before the diet started. There has been no difference. Her abdominal pain has consistently been a 9 out of 10 for 8 weeks. She cries all the time because it hurts so much. Nothing helps with the pain. She never had stomach aches prior to this. She never had any problem with any foods. She was just a healthy, happy kid doing the things healthy, happy kids do.

I feel like I am never going to get my little girl back, that this pain is never going away. I plan on calling the doctor in the morning to see if they have any suggestions.

I don't know how much damage there has been to her small intestine. The endoscopy showed the scalloping and the biopsy confirmed celiac disease. I hear so many different ideas as to how long it takes to get better. Her only symptom has been this abdominal pain. The doctor still has her on Protonix and said she needs to be on it for another month or so.

I just don't know what to do anymore. I just want her better so she can play softball like she is capable of and to be vice president in her 4-H club which will be starting up again soon. She cries through softball practice. But she still wants to and needs to practice. It is a travel team.

Thanks for listening.
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#2 shadowicewolf

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Posted 27 January 2013 - 11:24 AM

Its only been a week sense the diet started. It takes time :( In some causes it can take up to two years before all damage is healed.

Honestly, I think she might need to take a break from anything that requires a lot of exercise.
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#3 Denine

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Posted 27 January 2013 - 02:06 PM

Right now I am just looking for the pain to ease up, and be more doable. Practice is only once a week right now and it would kill her to say she can't go. It is all she has left. I know it take a long time to heal completely. I just want some semblance of a life for her an us.
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#4 kareng

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Posted 27 January 2013 - 02:17 PM

Maybe try cutting all the dairy out for a few weeks? Even with Lactaid. My SIL is extremely sensitive to lactose and sometimes the Lactaid doesn't help.
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#5 Takala

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Posted 27 January 2013 - 02:35 PM

Ditch the dairy. :rolleyes:

Re- introduce, cautiously and just the lactose- free versions, such as yogurt, butter, or aged hard cheeses, after about 2 months. If that doesn't work, wait another month or 2, then try again. No cheating.

Really, you can't just take a pill and expect this auto immune reaction and gut lining destruction to go away, it takes months.

Don't use Rice Dream brand "milk" drinks, they are processed with barley enzymes.

Also suggest getting rid of soy proteins such as soy flours in gluten free foods, at least for now. Best to lay off the wheat free, gluten free soy sauce, also, until you get rid of the symptoms. Soy is another common problem for many celiacs. Soy lecithin and small traces of soy oil may be okay, as technically, they are highly processed and don't contain the proteins.

And this is a long shot, but you may want to skip the "Protonix" for 24 hours and see if that makes any difference.

this is a travel team


Sorry, mom, the kid's health is more important than missing a few practices or a single season while you get this sorted out. She is going to have to be packing safe food and safe snacks with her on these ventures because even cautious and and careful restaurants will have an ongoing risk of gluten cross contamination. Perhaps a healed up person can risk taking a gluten hit and not be down for weeks, but you can't heal in the first place if you're continuously ingesting gluten.

You also said 4- H.... assuming you may have pets and animals, with a sensitive person, you may want to re-visit ALL the possible ways gluten can be coming into your environment. I will give you one example, my older, largest dog is horribly allergic to wheat, and to keep him from puking all over the house or scratching himself silly, I have to get rid of all wheat and barley pet and livestock feeds on the property, because the cat was repeatedly cross contaminating him, and if he ate some horse poop, same result. And dogs will try to sneak chicken feed and bird seed, which can also have it, meaning my pet chicken lives on an unusual homemade diet. I can train him to stay out of the barn - but he's a dog and dog's don't think about what they're allergic to, or whether or not to drink out of a stock tank - and we've also had dogs eating regular dog food, in the past, drinking out of the horse's water bucket and setting off his (the horse's) soy allergy. I change clothes when I come in from outside chores, and put them in the mud room, because I still react to some types of hay, and I don't want to be spreading the dust around. Othertimes my spouse just won't let me near it and he will be the feeder, and he also changes clothes afterwards. This is a nuisance, but it beats being sick all the time. It is not just ONE thing, but the cumulative affect of all these different small exposures to gluten, that can overwhelm a sensitive person.
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#6 nvsmom

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Posted 27 January 2013 - 02:36 PM

Poor girl. :(

I get the same stomach pain from dairy as I do from gluten (minus the bloat and headache) so I agree with Karen's suggestion to cut all milk consumption. It can't hurt; drinking a cow's breast milk probably isn't really a natural thing for humans to do anyway. If you are worried about calcium, just add a supplement; calcium isn't easily absorbed from dairy in humans so I doubt it would affect her calcium levels much if at all.

I hope she feels better soon.
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#7 Deliciousalternatives

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Posted 27 January 2013 - 02:43 PM

She needs to be off dairy and soy as well as gluten and anything else that causes inflammation. Her gut is inflammed. She needs to heal her gut. There is a great website out there about healing bone broths. I am not sure if I can post it or not as I got a warning from someone when I mentioned my cookbook, so I am not sure how much info I can give you. I am a nutritionist who helps people with diet, but again I am not looking for clients, I can just give you some helping ideas if you like.
You will get your little girl back, it will just take time. Thank goodness you figured it out, or it might have been much worse,
For the next little while can you make her some healing chicken or both broths with just some vegetables in it. She can eat that for breakfast lunch and dinner. Mashed avocadoes with a little olive oil, sea salt and lemon juice. maybe a fruit smoothie with coconut milk or almond milk. Lightly cooked vegetables, cooked spinach, green beans, with fresh fish or oranic meats, cooked squash or sweet potato? Let me know if I can help anymore..
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#8 1desperateladysaved

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Posted 28 January 2013 - 05:12 AM

Thanks for trying to do the best for your daughter and having compassion also. You have taken a step on a journey- and now keep walking. Good health for your daughter is ahead. Keep making progress. There are several things that help heal. The whole foods, you have already started.will help. You will want to stay engaged in learing about it. You never know exactly which combo will realease her from her pain. Sometimes one feels a little worse right before a new higher level.

This forum is a good place to learn.

Diana
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#9 gancan

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Posted 28 January 2013 - 05:27 AM


Also suggest getting rid of soy proteins such as soy flours in gluten free foods, at least for now. Best to lay off the wheat free, gluten free soy sauce, also, until you get rid of the symptoms. Soy is another common problem for many celiacs. Soy lecithin and small traces of soy oil may be okay, as technically, they are highly processed and don't contain the proteins.


I found this really interesting.. When I was diagnosed with colitis in 2004 they told me to avoid soy because I had blood tests that showed an allergy (among other things!) and I was young and basically had to figure out on my own what bothered me and what didn't.. I was always able to eat soy lecithin without any issues but other things like the soy protein and flours REALLY hurt me and I could never understand why.. that must be why it never bothered me, because it is so highly processed! Since being gluten free I have dared to eat the gluten free soy sauce (which I read is made with pure soybeans) I was nervous and tried a little bit and it doesn't bother me at all... not sure why.. ( I am still not going to eat any of the flour or protein - not brave enough for that!)

back on THIS subject - I hope your daughter starts getting better soon.. it is so difficult to be in so much pain at a young age that limits you from doing everything everyone else is doing. I have been dealing with stomach issues since I was very young and can understand how upsetting it is. Best wishes for her!!
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#10 Denine

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Posted 28 January 2013 - 05:38 AM

Thank you for your replies. I think I am going to have to take dairy away completely. I am going to call the doctor today. They ran allergy tests for soy, eggs and dairy that should be back by now.
The traveling part of her softball team doesn't start until spring. I am hoping she is better by then and I know I will need to take special foods for her. Right now is just practice once a week. This is her 1st year on the team.
We only have cats as animals and I started today to change them to a gluten free cat food. It will take a few days since I don't want to upset their tummies.
Would she have problems with soy even if she never had problems before? Or is it another problem because of the celiac disease causing problems with the small intestine?
I cook with very few processed foods, so the diet itself isn't really a problem. She likes the foods she is allowed to eat. She never cared for the carbs, so doesn't miss them.
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#11 kareng

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Posted 28 January 2013 - 06:07 AM

Lactose intolerance isn't an allergy so it wouldn't show on an allergy test. celiac damages the part of your intestines that digest lactose ( dairy).
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#12 shadowicewolf

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Posted 28 January 2013 - 06:20 AM

You'd be surprised about what might show up after you remove gluten. An example of this would be my tomato allergy. Didn't know i had it, certainly found out after i removed it. I unconsously started to shy away from it before (wanting it less and less) and, once I started going gluten free, it changed from that to an actual allergic reaction.
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#13 Denine

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Posted 28 January 2013 - 08:24 AM

I heard back from the doctor. She has a class 2 intolerance to casein, a class 3 intolerance to whey and a class 4 intolerance to soy. So, we are going dairy and soy free. She said to wait 2-3 weeks before trying to re-introduce dairy. She still has the gastritis which is why she in on the Protonix. She said her pain symptoms seem more related to the dairy problems than the celiac itself.

She never had problems with soy before and has been drinking soy milk since she was little, usually before bed. I am hoping once we get her small bowel healed, she can have these things again. She loves soy sauce! I guess we will deal with that later if she can't.

Thanks again!
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#14 Austin GF Family

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Posted 28 January 2013 - 01:34 PM

I heard back from the doctor. She has a class 2 intolerance to casein, a class 3 intolerance to whey and a class 4 intolerance to soy. So, we are going dairy and soy free. She said to wait 2-3 weeks before trying to re-introduce dairy. She still has the gastritis which is why she in on the Protonix. She said her pain symptoms seem more related to the dairy problems than the celiac itself.

She never had problems with soy before and has been drinking soy milk since she was little, usually before bed. I am hoping once we get her small bowel healed, she can have these things again. She loves soy sauce! I guess we will deal with that later if she can't.

Thanks again!


With these intolerance levels, she will likely never eat these foods again. I have casein intolerance and even the tiniest amount of dairy (from a cow) leads to days of discomfort. I am not a doctor, but I don't expect my intolerance to ever reverse itself - did the doctor indicate that it would? If so, I would work with an allergist, just to be sure. I had a dairy heavy diet, so eliminating the dairy was more upsetting to me than eliminating gluten, but I have made adjustments and primarily use goat cheese as a substitute. I never suspected the dairy was causing an issue - primarily because I was eating so much of it that I could never link a reaction to a food. This may be the same with your daughter and soy, since you say she has always had it in her diet.

There are plenty of alternative "milks" out there today, so replacing the soy milk with something else should be easy. Coconut milk is probably my favorite, but the hemp milks are good, too. If she eats a lot of yogurt, there is a coconut milk yogurt on the market and I think that coconut milk is the best substitute in "ice cream" products (Nada Moo is my favorite brand, but Coconut Bliss is also very good). Your daughter's gut is probably not healed enough to introduce these processed foods yet, but it can give you hope to know that she won't go without.

You mention soy sauce here, so I will tell you that soy sauce is not gluten free. The best gluten free substitute is tamari, which tastes and looks almost the same, but is not free of soy. Coconut Secret makes a gluten free, dairy free, soy free seasoning sauce that is very similar to soy sauce and can be subsituted in recipes or as a dipping sauce.

With so many allergens, I am going to suggest that your daughter works with a nutritionist or dietician to figure out what she should eat and what she should avoid. If you live in a city with a Natural Grocers store, they have a nutritionist on site who will work with you free of charge. They are very knowledgeable and helpful. If not, I am sure that you can find one in your area. Especially since your daughter will be traveling with her team and also will have a number of meals away from home (i.e. at school), she needs to educate herself about what is safe and what is not. She is also going to need to take supplements and these can be a hidden source of all sorts of allergens, so finding safe ones will be key to her recovery.

One thing you may not have been made aware of is the possibility of cross contamination that occurs in kitchens - including your home kitchen. Cutting boards, utensils, appliances, mixing bowls and cookware can all "hold onto" gluten and other allergens, even after washing. In order for your daughter to eat safely, you may need to purchase separate cookware or take other precautions to prepare her meals safely.

You will find a lot of good information on this forum. You might also considering joining a local celiac or gluten intolerance group, as well.

Best of luck!
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#15 Denine

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Posted 29 January 2013 - 06:26 AM

Thanks for the info. Yes, the doctors office felt that she could at some point eat dairy again. It will be some time before we try it though. Her gut is so messed up. We bought her the almond milk which she likes so far. She did have a lot of milk in her diet, very little soy as of late. I think she is more upset about the dairy than the gluten as well. We did buy the gluten-free soy sauce and she had some last week. I use very few processed foods so hopefully we won't run into too many hidden sources.

She is already reading labels to see what she can and cannot have. She comes to me if she has a question about the label. We have a follow-up appointment in a couple of weeks and I am going to ask about a dietitian at that point. Right now, we can handle the basics. She has no known nutritional deficincies. They tested for several and came back in normal ranges. She is homeschooled so I have control over her diet and luckily the softball tournaments are going to be fairly close to home except for a couple. Right now, we need to get rid of the stomach pains. I am hoping this will improve after a few days off the offending substances.

I did buy a new cutting board and colander. Everything else goes in the dishwasher.
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