Drastic Measures

[shan]

Don't know if you all remember me, haven't been on in a while, but i'll give a little history. Dd now 3 and 1/4 has been gluten-free sinc she turned 2. Her numbers have gone up instead of down, and we are VERY strict.

Now to my problem They want to put her on steroids for 6 weeks, possibly as an in patient in hospital, and i want to know if there is any other option, and what are the side effects of steroids. Should i wait longer and see what happns? I took the blood test 3 months ago, and i am going to take another one in a couple of weeks - 3 months after the last one - to see if there is any change... But i am scared - i know hospitals are useless places for celiacs, and i would have to be in isolation, to make matters worse...

Final question, does anyone here know of anyone who has been on steroids for celiacs?

Please help, i'm scared

[2kids4me]

Other than high numbers, what is the reason they give for putting her on steroids? I would ask for a second opinion. Steroids short term are relatively safe but they suppress the immune system..and in a pediatric patient with an immune system still developing....well, I would be cautious (just my opinion)..

Ask if a diet elimination to rule out dairy / nightshade issues would be a better option hefore trying steroids. Also , lets say they do try steroids and they work - it would be short term, then after steroids what if numbers go back up ?- they havent discovered the cause.

What numbers are still elevated?

Have they consulted a pediatric rheumatologist?

Have they done an endoscopy to diagnose celiac and rule out another form of intestinal inflammation?

Short term steroids have an anti-inflammatory effect, suppress the immune sytem, and cause increased thrist and appetite.

I have no personal experience with steroids in children but others on this board will chime in - any many of them will be able to answer from a personal perspective.

[shan]

Thanks for your reply, I have just now taken her off soya, and that seems to have helped her moods and her sleeping habits, which were terrible! (and she grew loads!!!) But she is still terribly bloated which doesn't seem to be going away

I am a little bit wary of taking her off more food - she is off dairy and soya, and she hates fish (unless i call fish cutlets "burgers", she wont come near them!) Her diet is already a sorry state, there are no fruit or veg at the moment, and so to take her off anything like the nightshades, which i understand includes tomatoes would be very hard - no ketchup

They did do a biopsy when she was diagnosed, should i insist on another one before we put her on steroids?

[2kids4me]

I dont know if I would insist on another biopsy, unless you or the drs are suspicious of another co-existing intestinal condition, esp in a toddler.

Candida can be a problem, as can eosinophilic enteritis...

I guess for me personally, I am uncomfortable throwing drugs at a condition before ruling out stuff. I work in the field of veterinary medicine (an animal health tech) and I do know that once steroids are given - it makes interpreting lab results difficult because the drugs make many results inaccurate until off the steroids for at least 4 weeks.

My daughter has recently omitted nightshades (and potatoes were her fav food), she can still handle ketchup....the nightshades are more of an intolerance for her rather than an allergy. She got tummy aches and soft stool every time she had potatoe.

Sometimes what can happen to doctors (vets and physicians) is they have blinders on (so to speak) and tend to think that because a patient has one condition (in this case celiac)..they want to attribute all future symptoms to celiac or whatever the medical issue.

Example: My daughter was born with hypotonia and developmental delays - so when she became severely and chronically consitpated, and slept a lot...the doctors attributed it to her muscle tone, and that she had to work hard to get around so she got tired easy - they missed the fact that she was hypothyroid until she stopped growing and had devloped mxyedema. Then after the celiac she developed backaches and they kept asking if she was sneaking gluten (because neckaches and migraines were symptoms prior to diagnosis of celiac)...til they xrayed her back at my insistence and they found she had scoliosis...now they listen carefuuly to new symptoms and are quick to perform tests for other conditions...sicne my child has made it clear that she has multiple health issues and more could develop.

You can ask if there are other conditions separate from celiac that cause bloating in a toddler, and her symptoms. They need to think "outside the box" .

Good luck, I know how challenging, frustrating and heartbreaking the journey can be when we know something is wrong with our children and we hear the "we dont know whats' wrong" response.

Sandy

[johnfrancis]

My 5 year old has had severe juvenile diarrhoea since birth, and with my family history of coeliac disease it was the immediate diagnosis of our doctor.

We put her on a gluten-free diet, which helped a bit but has not stopped the diarrhoea, we have recently gone to another doctor who told us that a lot of food intolerances work in groups (his words) and so if she has celiac disease she might also be lactose intolerant or fructose (fruit) or sucrose intolerant, and also nightshades. So we are in the process of removing all these things from her diet as well as Gluten.

I would reccomend getting a second opinion as well, especially with children, steroids are horrible drugs and you do not want to give them to your child if you can help it.

Have you had an allergy test? This might be worthwhile.

Colm

[ryebaby0]

Now to my problem They want to put her on steroids for 6 weeks, possibly as an in patient in hospital, and i want to know if there is any other option, and what are the side effects of steroids. Should i wait longer and see what happns?

IBut i am scared - i know hospitals are useless places for celiacs, and i would have to be in isolation, to make matters worse...

My son was on steroids for an inpatient stay, and has been on non-steroidal immunosuppresive drugs ever since. He has autoimmune issues apart from his celiac state. Side effects of steroids are serious and real, but generally apply to long-term (like months) use. They include slowed/stopped growth, stomach issues , very depressed immune function (no vaccines, or exposure to people with illness, or germy places like big public venues) and bone issues apart from the "moon face" and ravenous appetite. but most of them are not permanent. But again, it depends on the dose, and the length of time. My son's best friend has lupus and was on HUGE doses of prednisone with no permanent ill effects to speak of.

Why do they want her on steroids -- that's a question to ask. Don't be afraid to ask why they think that's their best course of action. What do they hope to see change? another good one. Why 6 weeks? What if it doesn't get them the results they want -- what then? Most pediatricians are cautious about the use of steroids in children, but the truth is that sometimes they are the only thing that will help, and short-term they can stop an irate body long enough to get its act together again. My son would have died without them.

Ask lots of questions, and write down the answers. Hospitals are not useless places for celiacs! If she's off dairy, has been allergy tested for other food issues, is strictly gluten-free and still losing weight and has gastric distress, this is serious stuff. Just waiting to see if things improve when they haven't after all this time may not be a great idea, but you just can't know. Ask, ask, ask.

Why would you be in isolation, if you don't mind the question? Hang in there!

[Dyan]

I have never heard of "nightshades", I'm going to be googling in a minute. But I read on the Enterolab website that said 3 quarters of celiac patients cannot tolerate yeast. I think that is a huge number. I know you said her diet is already very limited, but it's worth looking into.

[2kids4me]

Nightshades refer to plants that grow at night - potatoes, tomatoes, eggplant and peppers. They should be eaten ripe as the green unripe form of tomatoes or potatoes exposed to sun and turn green contain glycoalkaloids which is a toxin.

Many celiacs are intolernant to members of the nightshade family.

Sweet potatoes (yams) are not a nightshade , but a part of the morning glory family (flowers of the plant bloom early in the morning.

Sandy

[RiceGuy]

Well, you've already gotten great advice, so all I'd add is that you really need to get fruits and veggies into her diet. I can hardly imagine a child not liking some sort of fresh fruit, like banana, apple, pear, peach, grapes, berries, melons, etc. For veggies she won't recognize, try sweet potato pudding or sweet potato pie. Same for pumpkin or other winter squash. Carrot pie/cake is also good, as is zucchini bread, pumpkin bread, pumpkin cookies, carrot cookies, etc. Try Open Original Shared Link in place of the sugar, so it will be healthy rather than junk. That site offers a free sample so you can try it. How about tapioca pudding with fresh fruit, or fruit cocktail?

One thing which always seems to work is to make something for the whole family, and don't attempt to get the picky one to try it. Then once everyone else is enjoying it, she feels left out if she doesn't try it. Like having a snack tray on the table, and others are picking from it as they walk by. I don't know any kid who can resist that, even if they do it while you're not looking. Maybe peanut butter with celery sticks standing up in it, cherries on toothpicks, stuck in peanut butter or other viscous thing, like jam, applesauce, cottage cheese, or any combo thereof.

When I was little I loved a salad made of just shredded carrots, raisins, and a little lemon juice. Still today it tastes great

[shan]

Thanks all! You are the best bunch!! Ok, here goes... How do i take her off the nightshades, and can i start with just going off potatoes? She doesn't eat eggplant and peppers, so the othe problem is tomatoes? I was told by one dr that ishould take her off all fruit that has sugars in it, coz maybe that is the problem, but i couldn't bring myself to do that... am i crazy or should i listen to that dr? She does seem happier than she has been in a long time, but she is exhausted so easily, and then can't fall asleep, that i am scared that it is part of the problem...

Has anyone had steroids due to celiacs though? None of you have answered in the positive, that means that it must be pretty rare, even though it was what the celiac society told us to... i'm totally confused

[ryebaby0]

Has anyone had steroids due to celiacs though? None of you have answered in the positive, that means that it must be pretty rare, even though it was what the celiac society told us to... i'm totally confused

Yes, it is rare, but not unheard of. There are lots of case studies of steroids used in celiac treatment for cases that do not respond. There is disagreement whether some celiacs need steroids, or whether it's a different condition altogether. My son was already dx celiac and was npatient for continuing decline despite being on a very strict gluten-free diet. He was on prednisone and prednisolone (or however you spell it. It's pred through an IV) because he was not responding to dietary change alone. He was diagnosed with something called autoimmune enteropathy in addition to celiac disease, but some doctors think that is just a variant of celiac. Depends who you ask. Again, I would ask how long they would want her on steroids to see good changes. (Never ask doctors what they "expect" to happen! Oooh, they hate that questions!)

As part of his recovery, he ate nothing but rice and chicken for 4 weeks. And a prescription nutritional drink called Peptamen. Sometimes an extremely simple diet is (ironically enough!) very comforting and stress-reducing when you are uncertain about food issues. I assume you keep a food diary, so you know what she's eating?

[RiceGuy]

Thanks all! You are the best bunch!! Ok, here goes... How do i take her off the nightshades, and can i start with just going off potatoes? She doesn't eat eggplant and peppers, so the othe problem is tomatoes? I was told by one dr that ishould take her off all fruit that has sugars in it, coz maybe that is the problem, but i couldn't bring myself to do that... am i crazy or should i listen to that dr? She does seem happier than she has been in a long time, but she is exhausted so easily, and then can't fall asleep, that i am scared that it is part of the problem...

Has anyone had steroids due to celiacs though? None of you have answered in the positive, that means that it must be pretty rare, even though it was what the celiac society told us to... i'm totally confused

Nobody has ever found an exact replacement for tomatoes, but there are some products which try to approximate it by combining beets, carrots, and a few other things. I'm sure they also include a bunch of ascorbic acid or some such, to get closer to the taste. Look for a product called "nomato" or something like that. There's likely more than one brand out there. If I wanted to make something like ketchup, I think I'd try beets and carrots (which when combined give a very red color), and add something tangy/acidic, like ascorbic acid (which tomatoes have). It won't taste just like ketchup, but then again, in the "old days" ketchup used to be made with fermented mushrooms As I understand it, using tomato was an idea which came from someone who didn't like the Chinese fish sauce on which ketchup was based.

Potatoes are easy to replace. I like taro, which is a starchy root crop. It is white inside, and can be used in all the same ways as potato (except the skin). I actually like the flavor more than potato. It is slightly sweeter, with a subtle water chestnut type of flavor. Great mashed, fried, baked, etc. Makes awesome chips too! Just be sure to use the same handling precautions as for sweet potatoes, which is due to the oxalate crystals that can irritate the skin. I just use rubber gloves to peel the raw taro. Cooking destroys the crystals.

AFAIK, all fruits have sugars, so I suppose it's a matter of the type and amounts. For instance, dates have a lot of sucrose, which is a simpler sugar than fructose. Fruits can make candida flare up though, but if that's an issue, you'd have to do more than avoid fruits.

[shan]

Potatoes are easy to replace. I like taro, which is a starchy root crop. It is white inside, and can be used in all the same ways as potato (except the skin). I actually like the flavor more than potato. It is slightly sweeter, with a subtle water chestnut type of flavor. Great mashed, fried, baked, etc. Makes awesome chips too! Just be sure to use the same handling precautions as for sweet potatoes, which is due to the oxalate crystals that can irritate the skin. I just use rubber gloves to peel the raw taro. Cooking destroys the crystals.

AFAIK, all fruits have sugars, so I suppose it's a matter of the type and amounts. For instance, dates have a lot of sucrose, which is a simpler sugar than fructose. Fruits can make candida flare up though, but if that's an issue, you'd have to do more than avoid fruits.

I never knew there was a replacement, so to speak for potatoes!! Where i live, i am happy just to get the plain old regular potatoes - nothing fancy here!!!

DD has no issues with candida, the dr just said maybe that is why her D is still ongoing... It seems to have let up in recent weeks (gone the opposite way ) so i am not worrying about that...

I never realised my DD was bloated, till a few weeks ago. I just thought that she was fat, and i was SOOOO proud of her... Recently, comments started coming in from family and friends that she is bloated and we should do something about it when she is young, so she won't have too many scars.

[RiceGuy]

I never knew there was a replacement, so to speak for potatoes!! Where i live, i am happy just to get the plain old regular potatoes - nothing fancy here!!!

If you have an Asian market, they should have taro. Other than that, I've read others suggest mashing up cauliflower, but I doubt it would taste good, and have not tried it.

[Ursa Major]

I've read others suggest mashing up cauliflower, but I doubt it would taste good, and have not tried it.

I have tried mashed cauliflower instead of mashed potatoes. While I (who was a potato addict) thought it was okay (not fabulous, but okay), my husband really liked it. Even my picky teenager (who tends to be a picky eater) thought it was fine and actually ate it.

[feedmykids]

I don't have much advice as I am still new to this too. My DD kept having bloating issues after she was gluten-free. WE finalyl got her allergy tested adn she showed positive for Casein (milk protein). WE took her off of milk and she is looking better and behaving so much better also. HTH!

[shan]

No asian market and no cauliflower!!! doesn't exist!! We live in a really primitive area, so there really is nothing instead

she is off dairy and soya, but now that i have kept her off soya for a month and seen absolutely no difference, i might just put her back on it. Dairy i kept her off because of her exzema, which seems to have cleared up recently, so i am giving her a little dairy. SHe was off all dairy for about 1 year, and it did nothing to help her...

[AliB]

This is a difficult one as your little one may be trapped in a vicious cycle. Allergic and Intolerance responses usually happen due to Leaky Gut allowing undigested food particles through into the bloodstream. Leaky Gut happens because the body is out of balance and is suffering with a fungal (Candida) infestation.

The only way to control Candida effectively is to cut out virtually all sugar and most carbs. Until the Candida is under control the gut won't heal, and until the gut is healed the intolerances and allergies won't go away. Once the gut is healed then food particles can't get through and the responses should diminish.

The difficult thing is to get her off sugar and carbs. If she doesn't eat fruit and veg (I know what that is like as I have a VERY picky grandson who won't eat fruit at all apart from a banana (which is mainly carbs!) and eats little in the way of veg) it would be hard to figure out what to give her in order to help her body heal.

Gluten is just one part of the problem. Often when people go gluten-free they end up replacing it with other high-carb foods (which I have found to also often be very high in sugar) and actually just end up replacing one set of problems with another.

She will need enough protein to help her body rebuild itself and if you can get her to eat fruit and veg, perhaps as has been suggested, cutting it in strips and using as a dip, she will then get 'good' carbs from that. Will she eat soup? - that's how my daughter gets veg into my grandson. Sometimes we find bribery works - eat this and you can have that.

I am doing a low-carb higher-protein diet and am gradually getting the better of my Candida and Leaky Gut. After 2 months I can now eat a few more foods I couldn't cope with before. Unfortunately the reasoning you can do with adults doesn't work with kids! I hope you can manage to deal with it without resorting to Steroids which are at best only a temporary fix that doesn't get to the root of the problem, and may actually do more harm than good in the long-term as it gives her already poor beleaguered liver yet more stress and chemicals to cope with.

PS. Perhaps you might consider putting her on the Specific Carbohydrate Diet which is having great results for those with all sorts of problems including Celiac/GI. 'Pecanbread' is a good resource website for information. It is a kind of Elimination Diet (gluten and grain-free) which may help pinpoint the antagonists. The site contains lots of interesting stuff and recipes, etc.