Gluten Free And Not Better

[Catbird]

My 11 year old daughter was diagnosed with celiac disease 2 months ago. She has been gluten free for 8 weeks and dairy free for 3 weeks (due to diagnosed lactose intolerance). Her fructose intolerance test was negative (thankfully). She tends to get constipated and her GI just changed her laxative to Ex-lax. She is no better than before her diagnosis. She continues to have daily stomach aches, headaches and joint pain. I just asked the doctor to do further testing including h. pylori, enzyme deficiencies and vitamin deficiencies. We are awaiting those results. Has anyone had similar experiences? Is there something else we should be testing for or doing? Does anyone know an exceptional doctor in the NY/Long Island area? We have been to doctors at Columbia and Winthrop. I feel like I am directing her medical care. Columbia doc recommended prilosec and the Winthrop doc recommended a psychiatrist. Any help would be appreciated.

[mushroom]

Hi Catbird, and welcome to the forum.

With a fresh diagnosis it is pretty hard to gauge reactions. It is good you took her off lactose, because if the villi in her small intestine are damaged she would not be able to digest that. And it is good to have her deficiencies checked. Be aware that often low normal or borderline deficiencies in celiacs should be supplemented because what is circulating in the blood is not necessarily bioavilable to the cells. You really need to be mid-range on most things to feel at your best.

I would definitely give her a probiotic to help rebuild the good flora in her gut and I personally found digestive enzymes helpful for a couple of years even though I never had them tested; at this point her small intestine needs all the help it can get. Give her fresh, whole foods and things that are easy to digest - no tomato or apple skins, maybe no cruciferous vegetables for a while. From my personal experience I would also avoid soy and corn. I don't know if you checked casein tolerance, but it might be good to test her on that by removing it and then challenging it.

Are you keeping a food and symptom diary? Sometimes that is the only way to pick up on what the problems are and even then it is difficult because reactions can be delayed.

The neurological symptoms (headaches) and joint pain often take longer to resolve than the gut issues so do not be too impatient with those, but it is good to try and stay on top of the situation. I definitely do NOT think she needs a psychiatrist - that is a pretty cheap shot for an 11-year-old

Do keep us informed as to her progress. Others may have further thoughts to offer.

[Mizzo]

I agree with mushroom, probiotics and easily digestible foods for a while. Are you completely gluten free, because otherwise the pains will continue.

Our nutritionist's example was this :A thumbnail full of gluten is enough to cause Villi damage. That includes cross contamination and air particles.

I will add when my girl was put on EX-lax her tummy pains were extra bad, due to the cramping from it. In addition we were also told a Psychiatrist might be next step for the "accidents" she was having. Umm! I considered that a cop-out from the DR. who had only seen her twice at that point.

good luck

[Katie B]

Hi Catbird,

Some of us are affected by the amount of carbs eaten at one time. I can only eat 30g of carbs in one sitting 2.5 - 3 hours apart. This should get better with time but at the moment I have to really watch small intestinal bacterial overgrowth (SIBO). You might want to try increasing calories from protein and fat and decreasing carbs.

I also suffer from constipation so taking a lot of probiotics isn't always a great idea if the system isn't moving things through - it will just add more bacteria to the fire. My dietician spoke with a doctor at a conference regarding constipation with SIBO and he recommended taking SISU Dophilus Extra Strength (10 billion cfu's), once daily (I was previously taking 1/2 sachet of VSL#3).

Finally, laxatives are harsh on the system but if you need them then you need them. I'm taking polyethylene glycol (miralax, lax a day, restoralax) and from what I've read it's used for children as well. I think that exlax is a stimulant laxative which isn't really recommended because it affects the signals in the intestines. PEG travels through the system without affecting other parts of the body and gathers water in the intestine. It's also not fermentable by bacteria (like lactulose...please stay away from this one!!!) so it shouldn't cause problems in that regard. I would consult a Dr. though about PEG - I don't want to give you misleading information.

I would basically suggest looking up SIBO and the low FODMAP diet. There's a lot of conflicting information out there but you can get a booklet of the low FODMAP diet from the Monash University website and they're the authorities on it.

You might also look at other reactions with soy, corn etc. etc. but take it one step at a time. She might have to eat very simply for awhile until things stabilize. It can be a process and your situation isn't unique...I wish after I'd eliminated gluten that everything just cleared up but it's slowly getting better and better.

Good luck!

[concernedmamma]

I don't have any detailed or earth shattering suggestion for you, but wanted to let you know that it took us quite some time to see an improvement in my son (age 4 when diagnosed, 5 now). I would say it took at LEAST 3 months to start to see an improvement, and now at 8 months into it, I am finally beginning to be able to tell when he gets 'glutened'- not ALL the time, but it is getting a bit more clear.

All I can say is stick with it, do your best and Hugs to you!

Kim

[Catbird]

Hi Catbird, and welcome to the forum.

With a fresh diagnosis it is pretty hard to gauge reactions. It is good you took her off lactose, because if the villi in her small intestine are damaged she would not be able to digest that. And it is good to have her deficiencies checked. Be aware that often low normal or borderline deficiencies in celiacs should be supplemented because what is circulating in the blood is not necessarily bioavilable to the cells. You really need to be mid-range on most things to feel at your best.

I would definitely give her a probiotic to help rebuild the good flora in her gut and I personally found digestive enzymes helpful for a couple of years even though I never had them tested; at this point her small intestine needs all the help it can get. Give her fresh, whole foods and things that are easy to digest - no tomato or apple skins, maybe no cruciferous vegetables for a while. From my personal experience I would also avoid soy and corn. I don't know if you checked casein tolerance, but it might be good to test her on that by removing it and then challenging it.

Are you keeping a food and symptom diary? Sometimes that is the only way to pick up on what the problems are and even then it is difficult because reactions can be delayed.

The neurological symptoms (headaches) and joint pain often take longer to resolve than the gut issues so do not be too impatient with those, but it is good to try and stay on top of the situation. I definitely do NOT think she needs a psychiatrist - that is a pretty cheap shot for an 11-year-old

Do keep us informed as to her progress. Others may have further thoughts to offer.

Thank you for the valuable information. I thought that the apple skins and vegetables would be helpful because of their fiber content. I will start a food and symptom diary and schedule an appointment with a knowledgeable nutritionist.

[Catbird]

I agree with mushroom, probiotics and easily digestible foods for a while. Are you completely gluten free, because otherwise the pains will continue.

Our nutritionist's example was this :A thumbnail full of gluten is enough to cause Villi damage. That includes cross contamination and air particles.

I will add when my girl was put on EX-lax her tummy pains were extra bad, due to the cramping from it. In addition we were also told a Psychiatrist might be next step for the "accidents" she was having. Umm! I considered that a cop-out from the DR. who had only seen her twice at that point.

good luck

I think she is completely gluten free. I just bought a new set of pots because I was desperate and thought that I might be contaminating her from the old set. Perhaps there is more that I should be doing at home that I am not aware of. The doctors don't give a lot of guidance regarding going gluten free. I learned more from the books I read than from the doctors. Thank you so much for your help!!!

[Catbird]

Hi Catbird,

Some of us are affected by the amount of carbs eaten at one time. I can only eat 30g of carbs in one sitting 2.5 - 3 hours apart. This should get better with time but at the moment I have to really watch small intestinal bacterial overgrowth (SIBO). You might want to try increasing calories from protein and fat and decreasing carbs.

I also suffer from constipation so taking a lot of probiotics isn't always a great idea if the system isn't moving things through - it will just add more bacteria to the fire. My dietician spoke with a doctor at a conference regarding constipation with SIBO and he recommended taking SISU Dophilus Extra Strength (10 billion cfu's), once daily (I was previously taking 1/2 sachet of VSL#3).

Finally, laxatives are harsh on the system but if you need them then you need them. I'm taking polyethylene glycol (miralax, lax a day, restoralax) and from what I've read it's used for children as well. I think that exlax is a stimulant laxative which isn't really recommended because it affects the signals in the intestines. PEG travels through the system without affecting other parts of the body and gathers water in the intestine. It's also not fermentable by bacteria (like lactulose...please stay away from this one!!!) so it shouldn't cause problems in that regard. I would consult a Dr. though about PEG - I don't want to give you misleading information.

I would basically suggest looking up SIBO and the low FODMAP diet. There's a lot of conflicting information out there but you can get a booklet of the low FODMAP diet from the Monash University website and they're the authorities on it.

You might also look at other reactions with soy, corn etc. etc. but take it one step at a time. She might have to eat very simply for awhile until things stabilize. It can be a process and your situation isn't unique...I wish after I'd eliminated gluten that everything just cleared up but it's slowly getting better and better.

Good luck!

How did you find out about the carbs? My daughter was on Miralax daily but it was not sufficient. I will check out Monash U. Thanks for your help!

[Catbird]

I don't have any detailed or earth shattering suggestion for you, but wanted to let you know that it took us quite some time to see an improvement in my son (age 4 when diagnosed, 5 now). I would say it took at LEAST 3 months to start to see an improvement, and now at 8 months into it, I am finally beginning to be able to tell when he gets 'glutened'- not ALL the time, but it is getting a bit more clear.

All I can say is stick with it, do your best and Hugs to you!

Kim

It's really comforting to know that she is still within the norm in terms of improvement. Thank you!!

[scarlett77]

I think she is completely gluten free. I just bought a new set of pots because I was desperate and thought that I might be contaminating her from the old set. Perhaps there is more that I should be doing at home that I am not aware of. The doctors don't give a lot of guidance regarding going gluten free. I learned more from the books I read than from the doctors. Thank you so much for your help!!!

Also check personal care items like lotions, shampoos, even your makeup.

[Katie B]

How did you find out about the carbs? My daughter was on Miralax daily but it was not sufficient. I will check out Monash U. Thanks for your help!

My GI doctor spoke to me about not being able to handle a lot of carbs and recommended the low FODMAP diet since they've done scientific studies to back it up. You might want to give Miralax another shot...it took awhile for me to figure out - have to dissolve in boiling water and take 2 doses a day (1 morning, 1 night). Only reason I'm recommending it is that it's easier on the body and shouldn't produce cramping. Again, something to check out with the Dr.

[GFinDC]

Well, I have no idea what she is eating every day, so will just throw out the standard advice around here. It is safest to stick with a whole foods diet and avoid all processed foods. That means no boxes or canned foods or whatever that have multiple ingredients. Usually sticking with items that have 3 or less ingredients is ok. Often those are the food, water, and salt or sugar. If it has a long chemical name in the ingredients it is not food. She needs to have a separate toaster that is only used for gluten free breads. She will probably get better faster if she doesn't eat any dairy or soy. That eliminates most processed foods right there. You also need to check all her vitamins pills, medicines, sodas etc for gluten. Shared peanut butter or mayo is not going to work. Some people get the squeeze bottles so they aren't contaminated by a knife used for both gluten free and gluteney bread. Flour is a very fine powder and can get in the air and land just about anywhere. So, that's something to think about when preparing gluteneny flour items in the kitchen.

[T.H.]

This may not apply directly to your situation, but I'll share my experience, in case it helps.

My daughter was diagnosed about 15 months ago when she was 11 years old, too. She had no gut symptoms at the time, but the exhaustion and mood issues she'd had before the diagnosis of celiac disease didn't go away during the first few months. Doctor was no real help.

I had been diagnosed 2 weeks before her and seemed to have numerous food allergies/intolerances that made me quite sick before I got away from them. Some of my symptoms were head aches, joint pain, dizziness and nausea. A few of the allergies were diagnosed, but many my doctor wasn't sure of, only that I should stay away from them if they were making me unwell.

So I ended up taking my kids off the 7 other major allergens, plus a couple of the foods I was allergic too, to see if it helped (7 allergens were: soy, tree nuts, pea nuts, eggs, fish, shell fish, and dairy). And it helped quite a bit, actually. We started a food journal and kept track of what they ate, and how they felt - emotionally, physically, etc... In part because the celiac disease affects mood too, as it deprives the brain of nutrients that it needs to regulate sleep and mood. I would highly recommend this, if you have the time or energy, as it can often help you find a pattern. Just make sure you record the brand of every food along with the ingredients.

We slowly tried to add the foods back in, giving them a little to see how they did, and then letting them pig out the next two days with the food in question, and see how they did. We thought we'd found the culprits, but things never quite resolved. She'd still have trouble for a few days, and then seem fine. She'd be tired for a week and then recover. And then she started having gut pain after getting gluten (this was new, for her), and that has slowly been able to help us figure out what has been the problem, for both me and my daughter, it turns out.

Neither of us have much problem with any food at all. It's all pretty much gluten. The reason dropping the foods had helped was because we had to drop most processed foods to avoid all those allergens, so we were on very basic, and less contaminated, foods.

Here's what we've discovered along the way that might be of use to you:

1. Gluten free is a legal term that doesn't actually mean 'zero gluten.' It means below a certain level of gluten, decided on by a country's government. In the USA, companies often go below 20 ppm (parts per million), although our law hasn't been completed yet, so there is no legal basis for this at the moment. Most celiacs don't seem to notice any symptoms below this level of gluten, but a few of us do. Even in studies on 'safe' gluten amounts, they'll have one or two people who get very sick on the low levels that seem to be fine for everyone else.

2. When you buy a gluten free product, you have no way of knowing how much gluten it actually has unless they state it outright, or you call and ask what level of gluten they test for. Some have 20ppm or less. Some have 10ppm or less. Some have 5 ppm or less (the lowest level most tests can detect). So some of these foods are fine for more sensitive celiacs, and some aren't, depending on the sensitivity.

3. There are also those 'gluten free' products that have significantly more than 20ppm. 'Naturally' gluten free is pretty much meaningless. All it means is that the food would be gluten free if you picked that sucker in the wild. But at a time when we have shared harvesters, shipping trucks, mills, machines and factories, 'naturally' gluten free is not a good bet for the very sensitive. The 'no gluten ingredients' fall into that category, too, where they may not add any gluten on purpose, but processing can add gluten through cross contamination. Sometimes this has been found to be over 300 ppm of gluten, so something like this could really affect your daughter.

3. It's good to remember that all these gluten-free foods, even the ones that say they are gluten free, are actually 'really low gluten' products, because that means that if you eat enough of them, you can still get too much gluten. Like eating too much low calorie food can still make one fat, you know? So if your daughter is eating a lot of processed gluten-free crackers, pasta, and such, she might still be getting sick off of the gluten.

4. Most doctors I've come across are pretty ignorant about gluten free products and labeling and don't realize how much gluten they actually have in these products, or how easy it is to get a pretty good amount of gluten from them. So if you say your child is keeping to a gluten free diet, they don't tend to ask questions about what gluten free foods she's eating, or how much of them, to try and see how much gluten your child is getting. It's...frustrating is the kindest word I can come up with.

5. Yeah...it's pretty common for doctors to start on the psychiatrist/psychologist route when celiacs don't get better right away. Or they'll accuse you of cheating on the diet. My daughter has been told she might need that. I was told I was probably 'faking it to get out of school,' before I was diagnosed (I was 16 at the time. I am 38 now and I was only diagnosed last year). I think there should be a club started called the 'no, it's not all in my head, you jerk' club. Many, many celiacs would join.

I guess the last thing I would say is what things have had gluten that have bothered my daughter. Most of these haven't bothered other celiac relatives, I'll be honest. But if you're looking for some odd source of gluten that you might be missing, it might not hurt to be aware of some of these, especially if you decide to do a food journal:

--Many, many grains, especially corn (corn is often a rotation crop with wheat, so they are typically more contaminated than some of the other gluten-free grains).

--Plain nuts and soy that were processed near wheat or grown in the same fields as wheat (soy is also a common rotation crop with wheat). Sickest I've ever been from CC was with plain, unflavored pistachios. Ugh.

--oil that was processed on a line that ran wheat germ oil on the same line.

--apples and citrus. I couldn't figure this one out until I found out from some other celiacs that many of these have a coating added that helps keep them from rotting as quickly, and that coating contains gluten. If we peel the apples and carefully peel the citrus, she seems to get less sick, but they still bother her just the littlest bit. She does better if we avoid them entirely. We're looking for some local farms where we can get some fruit without coatings, currently. And fertilizers and mulch can have gluten.

--shampoo, toothpaste, flavored floss, hand lotion, hand soap and dish soap have also been problems, as it either gets in her mouth, or on her hands and then into her mouth.

--poultry skin. Often trace contamination due to the defeathering practices.

I'm even more sensitive than my daughter, and I've reacted to foods processed on machines that use a soap that has traces of gluten, including things I never would have considered, like my salt.

I want to make sure and stress that the above problems are not ones that most celiacs note any problems with. Don't want to make you feel paranoid, I swear. But again, I just want to mention these because if you DO have a sensitive little girl, your doctor is unlikely to be much help, I'm afraid. You'll have to do a lot of research on your own, essentially. As you said - you end up being in charge of your daughter's health, which is a bit upsetting and a bit scary. Although you do learn an awful lot.

At the very least, if time passes and your little one is STILL not getting better, there might be a few things you can do to see if gluten might be the issue. Like, say, drop all grains, nuts, and seeds for a week or two. Drop the processed foods. Drop all oils. Drop the dairy. Peel all fruits and veggies.

And see if that makes a difference. If it does, at least it can give you a place to start to find the answers, yes?

Wishing you all the best. It's so hard to see them in pain, I know. My daughter got to try a gluten-free pie I made for her this Thanksgiving, and whatever grain we used looks like it was still too much gluten CC, so she's having a seratonin crash as we speak, crying and irrationally upset about everything, and still awake and carrying on at 12:45 am.

Sigh. Live and learn...just wished it wasn't so much painful learning, sometimes, eh?