New To Celiac Disease?

[momof2sn]

Hello,

I have so many questions?? My daughter is 21 mo. and diagnosed with Duarte Galactosemia at 3 weeks of age. It is a liver disease. She has always had an enlarged abdomen. We saw a GI in Feb. and she suggested that we scope her. The procedure showed that her intestines and lower part of her stomach was inflammed. The biopsy and allergy testing came back normal. It did show she was lactose intolerant, she is already on soy due to the liver issue. We were told that out of the three test that are done for the gluten allergy, my daughter was positive for the genetic make up. Her fulate level was low and they said that the little part between the stomach and intestine normaly has these little finger things that bring in the nutrients and my daughters were smoothed off and could not grab any nutrients. So basically they tell me she is going to have celiac disease and that I just have to sit and wait for it to happen. Does anyone know of anything that can be done to keep this from happening?? We go back in July for repeat blood testing. They suggested putting her on a multivitamin that has B-12 and folate. We are now doing that. I just feel I can't sit back and watch this happen. She is a rather normal and healthy little girl. She has had constant diarrhea for what seems like forever. Her dairy has always been limited and we are now giving her a lactaid pill daily to help with what lactose she does have. Any suggestions?? I would appreciate any comments!!! Shealey

[taweavmo3]

So basically, they want to wait until she gets sick enough for the test to be positive??? From what you described, it already sounds like she has Celiac. If she has flattened or blunted villi, I thought that was a positive test.

Either way, my advice to you would be to start her on the diet now. She has the genetic makeup, she has flattened villi that are not able to absorb nutrients. I really don't see why the doctor is making you wait, that seems absurd to me. And honestly, if she isn't able to absorb any nutrients, starting her on a multivitamin isn't going to help much until you fix the root of the problem......if you heal her gut, she can start absorbing nutrients from food, which she isn't able to do at the moment.

If you don't feel comfortable just starting the diet, I would try to get a second opinion if possible. Find a good doctor, or take things into your own hands to get your daughter well now. Personally, I would not wait......your daughter is at a very crucial developmental stage right now, and it's important that she's able to absorb nutrients and feel well, in order to reach important milestones.

Good luck to you, and welcome to the board. This is a very supportive and informative community, you couldn't have found a better place!

[Nantzie]

I agree with taweav - it makes me cringe to hear that they're waiting for more damage than what they're seeing. I'm sure they just know how much she's (and you) have been through and don't want to add another thing to her list. But they're doing a disservice to her by saying you should wait. If she actually has villous atrophy (the finger things that absorb nutrients being worn off) at her young age, then she has celiac, plain and simple. Tests for celiac are notoriously inaccurate for adults, and are even more inaccurate for kids under 4. There are a lot of adults with gluten issues who don't have the villous atrophy they're describing to you. It sounds to me that she needs to be on the gluten-free diet.

You've definitely found the best place in the world to go on the gluten-free diet. Welcome to the boards. I hope your daughter feels better soon.

Nancy

[momof2sn]

I agree with taweav - it makes me cringe to hear that they're waiting for more damage than what they're seeing. I'm sure they just know how much she's (and you) have been through and don't want to add another thing to her list. But they're doing a disservice to her by saying you should wait. If she actually has villous atrophy (the finger things that absorb nutrients being worn off) at her young age, then she has celiac, plain and simple. Tests for celiac are notoriously inaccurate for adults, and are even more inaccurate for kids under 4. There are a lot of adults with gluten issues who don't have the villous atrophy they're describing to you. It sounds to me that she needs to be on the gluten-free diet.

You've definitely found the best place in the world to go on the gluten-free diet. Welcome to the boards. I hope your daughter feels better soon.

Nancy

Hello,

Thank You so much for responding. It is so good to hear from somone who has been through this!!

I don't even know where to start with the gluten free diet?? Is is just basically fruits, veggies and meats?? What if she just continues to eat as she is now?? The really only physical side effects she is having is the diarrhea (which honestly I don't remember her not having diarrhea) and her bloated stomach. Wouldn't she be sick all the time now?? Like vomitting and just constantly fussy??

Shealey

[taweavmo3]

I think one of the hardest things about Celiac is that no two Celiac kids are alike. There are SO many different symptoms. My daughter never had vomiting or diarrhea. Now that she has been gluten free for over two years, she does vomit when she's had a gluten accident, and get very very sick. Her only symptoms starting at 18 months old, were failure to gain weight (which docs totally blew off, since she didn't actually lose weight until later) and failure to grow. She also had bulky stools, and a distended belly. But the docs said that her belly was leftover baby fat since she hadn't grown, which is ridiculous now that I look back on it. And since I'm small myself (4'11"), her lack of growth was said to be genetic.

Yet even with her lack of major symptoms, she had a very positive biopsy and blood test. Had I known more, I would not have waited as long. She now has major delays in speech, and is still about a year and a half behind for her age. Poor bug still has a lot of work ahead.....once a child is sick enough to yield positive test results, there can be detrimental effects to their development.

I get very agitated when docs take such a lax approach to these symptoms. Not all kids will have delays or development problems, but when you are dealing with malabsorption issues in children of a crucial developmental age, it's risky to take a wait and see approach. The medical community as a whole is much more willing to dispense medications with harmful side effects before they'll ever suggest a diet change. Okay, I'll get off my soapbox now, lol. Sorry for the ramble!

Getting started, here's what I did. Find some Dana Korn books...one good one is Kids wtih Celiac Disease. I would actually be happy to mail you mine, as I don't need it anymore. You could PM me info if you feel comfortable doing that. Second, find out if you have a local R.O.C.K. (raising our celiac kids) chapter near you. That was a great support system for me. Also, Nini on this board (correct me if I'm wrong!) has a starter list for beginners.

Hope that helps some!

[momof2sn]

I think one of the hardest things about Celiac is that no two Celiac kids are alike. There are SO many different symptoms. My daughter never had vomiting or diarrhea. Now that she has been gluten free for over two years, she does vomit when she's had a gluten accident, and get very very sick. Her only symptoms starting at 18 months old, were failure to gain weight (which docs totally blew off, since she didn't actually lose weight until later) and failure to grow. She also had bulky stools, and a distended belly. But the docs said that her belly was leftover baby fat since she hadn't grown, which is ridiculous now that I look back on it. And since I'm small myself (4'11"), her lack of growth was said to be genetic.

Yet even with her lack of major symptoms, she had a very positive biopsy and blood test. Had I known more, I would not have waited as long. She now has major delays in speech, and is still about a year and a half behind for her age. Poor bug still has a lot of work ahead.....once a child is sick enough to yield positive test results, there can be detrimental effects to their development.

I get very agitated when docs take such a lax approach to these symptoms. Not all kids will have delays or development problems, but when you are dealing with malabsorption issues in children of a crucial developmental age, it's risky to take a wait and see approach. The medical community as a whole is much more willing to dispense medications with harmful side effects before they'll ever suggest a diet change. Okay, I'll get off my soapbox now, lol. Sorry for the ramble!

Getting started, here's what I did. Find some Dana Korn books...one good one is Kids wtih Celiac Disease. I would actually be happy to mail you mine, as I don't need it anymore. You could PM me info if you feel comfortable doing that. Second, find out if you have a local R.O.C.K. (raising our celiac kids) chapter near you. That was a great support system for me. Also, Nini on this board (correct me if I'm wrong!) has a starter list for beginners.

Hope that helps some!

I think I am just in denial that this could be happening?? I was like that when she was diagnosed with Duarte Galactosemia. I also have a son who is severe asthmatic and PDD. I honestly feel like I can't handle one more thing right now!!

I would so much appreciate that book. I will do anything to learn more for my baby. I have to admit that this is my first time on a message board so please let me know how to get your email address or what your prefer so I can send you my address. I will send money for shipping. Also please instruct me of how to get in touch with Nini too.

See my little girl was seen by the GI due to her diarrhea which we thought was from the DG. She is ahead in her speech ( she already speaks in sentences ), she is normal on the growth charts for height and weight. She has really had no other issues, and the ped already had sent my son to the same GI , (for suspicions of acid reflux ) and I think he didn't want to mess with the whole issue. Her blood and biopsy results were normal, so does that only really mean she has no lasting damage yet?? The only positive test was the genetic one. Does that mean that we gave her that? My husband and I are neither positive for Celiac. Is she maybe just gluten intolerant?? Will I have to shop at an all natural food store for her?? Will we ever be able to eat out again?

Thanks for the help, Shealey

[taweavmo3]

I guess what confuses me is that they are calling her biopsy normal, yet there was blunting of the villi? (the fingerlike projections). Are they calling it normal simply b/c the damage was not in the small intestine yet? I would start reading all you can about Celiac, become informed, and then ask more questions. Then you can make your decision from there. And just one more thing....your son who is PDD might also benefit from the diet. Might be worth a shot. My daughter has two out of the three indicators for autism, and I really believe that b/c of the gluten/casein free diet that she hasn't been dx'd as autistic. Hope this isn't overwhelming you! I know the feeling of having alot to handle, all of my kids have a variety of health issues, and dealing with a restrictive diet can be stressful. But it's also empowering to know that I am able to do something to help my kids get better. Being informed and armed with information is a powerful tool to have.

Nini has a website that you can check out, with info about Celiac. You can also access a starter kit there for newbies. I'll try to copy the link for you:

Open Original Shared Link

Also, just right click on my name, taweavmo3, and an option to send me a message should pop up. You can send me a private message that way with info. And don't worry about shipping, I'm happy to help. That book has been sitting in my closet for ages, it should get used by someone. I found it very helpful in the beginning. I'm sure others here will have more advice too, this board is great like that.

[momof2sn]

I guess what confuses me is that they are calling her biopsy normal, yet there was blunting of the villi? (the fingerlike projections). Are they calling it normal simply b/c the damage was not in the small intestine yet? I would start reading all you can about Celiac, become informed, and then ask more questions. Then you can make your decision from there. And just one more thing....your son who is PDD might also benefit from the diet. Might be worth a shot. My daughter has two out of the three indicators for autism, and I really believe that b/c of the gluten/casein free diet that she hasn't been dx'd as autistic. Hope this isn't overwhelming you! I know the feeling of having alot to handle, all of my kids have a variety of health issues, and dealing with a restrictive diet can be stressful. But it's also empowering to know that I am able to do something to help my kids get better. Being informed and armed with information is a powerful tool to have.

Nini has a website that you can check out, with info about Celiac. You can also access a starter kit there for newbies. I'll try to copy the link for you:

Open Original Shared Link

Also, just right click on my name, taweavmo3, and an option to send me a message should pop up. You can send me a private message that way with info. And don't worry about shipping, I'm happy to help. That book has been sitting in my closet for ages, it should get used by someone. I found it very helpful in the beginning. I'm sure others here will have more advice too, this board is great like that.

Yes, they said the biopsy was normal because the intestine was only inflamed. They essentially told us she was on her way to a celiac disease, but then said it was miserable and we would deal with it later, so we were given orders for repeat blood work in July.So they basically want to take the wait and see approach. She has several red flags, being the inflammed intestine, low folate level, damaged villi, lactose intolerance and genetic make up of celiac. So you see why I am confused.

I have also read that the gluten free diet is beneficial to austic children. My son is so picky because of his sensory issues though. I did get some results in the mail today which are pretty much foreign to me but it did state that she had HLA typing for celiac disease, which did show a positive HLA-DQ8???

Thanks so much for the link and I will send my info to you I will definitely read that book!!!

[Nantzie]

Your doctors are misinformed. I can see that they think they're protecting her from something, but they're asking her (and probably other children in their care) to suffer through way more than a diet change. There have been stories of doctors here who refuse to give a celiac diagnosis because they think the diet is too hard. The diet is not hard. Being celiac and not being on the diet - that's hard. It causes memory and concentration problems, mood and behavior issues, etc. The extra effort of a gluten-free diet is worth it 100 times over.

You mentioned sensory issues. My son was 2.5 when we put him on the gluten-free diet. He used to just want to be left alone, play by himself. He was happy and content, but he didn't want anyone but me to mess with him. At some point he probably would have needed to be evaluated for autism. After just a few weeks on the gluten-free diet, he had a complete personality change - to the point where one of the ladies at the drop in babysitting center I take the kids to actually got teary-eyed when I picked him up one day. She said - He played with us. He did the singing and dancing and everything. Up until that point he would just go over to the corner and look at the books the entire time he was there.

He went from being at least borderline autistic to being a goofy, loud, active, funny, jabbery little boy in the matter of a couple months.

As much as it sounds like her doctor is trying to help, I would get another doctor, or at least a second opinion with a doctor who is familiar with celiac. This is akin to a doctor saying you should ignore a diagnosis of diabetes in your child. Where in Indiana are you - maybe there's someone who knows of a ped GI or general pediatrician who is more informed about celiac and ALL of the symptoms associated with it.

I'm SOOOOO glad you found us here.

Nancy

[momof2sn]

Your doctors are misinformed. I can see that they think they're protecting her from something, but they're asking her (and probably other children in their care) to suffer through way more than a diet change. There have been stories of doctors here who refuse to give a celiac diagnosis because they think the diet is too hard. The diet is not hard. Being celiac and not being on the diet - that's hard. It causes memory and concentration problems, mood and behavior issues, etc. The extra effort of a gluten-free diet is worth it 100 times over.

You mentioned sensory issues. My son was 2.5 when we put him on the gluten-free diet. He used to just want to be left alone, play by himself. He was happy and content, but he didn't want anyone but me to mess with him. At some point he probably would have needed to be evaluated for autism. After just a few weeks on the gluten-free diet, he had a complete personality change - to the point where one of the ladies at the drop in babysitting center I take the kids to actually got teary-eyed when I picked him up one day. She said - He played with us. He did the singing and dancing and everything. Up until that point he would just go over to the corner and look at the books the entire time he was there.

He went from being at least borderline autistic to being a goofy, loud, active, funny, jabbery little boy in the matter of a couple months.

As much as it sounds like her doctor is trying to help, I would get another doctor, or at least a second opinion with a doctor who is familiar with celiac. This is akin to a doctor saying you should ignore a diagnosis of diabetes in your child. Where in Indiana are you - maybe there's someone who knows of a ped GI or general pediatrician who is more informed about celiac and ALL of the symptoms associated with it.

I'm SOOOOO glad you found us here.

Nancy

Hi,

We have two major children's hospitals in Indianapolis, we are about 1 1/2 to 2 hrs north of Indianapolis. There is Riley children's hosp. and St Vincent's, which is where the ped GI we saw.

This may sound really selfish, but I don't mean it that way, I just want to know how you travel with a child on this diet. We are planning a trip to South Texas for two weeks in July. How do we feed our daughter when we are on the road? Is it possible? Shealey

[puttersmom]

Hello,

I have so many questions?? My daughter is 21 mo. and diagnosed with Duarte Galactosemia at 3 weeks of age. It is a liver disease. She has always had an enlarged abdomen. We saw a GI in Feb. and she suggested that we scope her. The procedure showed that her intestines and lower part of her stomach was inflammed. The biopsy and allergy testing came back normal. It did show she was lactose intolerant, she is already on soy due to the liver issue. We were told that out of the three test that are done for the gluten allergy, my daughter was positive for the genetic make up. Her fulate level was low and they said that the little part between the stomach and intestine normaly has these little finger things that bring in the nutrients and my daughters were smoothed off and could not grab any nutrients. So basically they tell me she is going to have celiac disease and that I just have to sit and wait for it to happen. Does anyone know of anything that can be done to keep this from happening?? We go back in July for repeat blood testing. They suggested putting her on a multivitamin that has B-12 and folate. We are now doing that. I just feel I can't sit back and watch this happen. She is a rather normal and healthy little girl. She has had constant diarrhea for what seems like forever. Her dairy has always been limited and we are now giving her a lactaid pill daily to help with what lactose she does have. Any suggestions?? I would appreciate any comments!!! Shealey

[puttersmom]

I know this seems to be the general consensus and I must agree... nevermind that hesitant doctor, get that baby on glutenfree diet!!! We were blessed to see a wonderful pediatric GI who put my son on a gluten-free diet, even with inconclusive blood results but a scope that showed intestinal damage. Within a month he had no diarhhea, no bloated belly, and had actually gained a pound! At any rate, gluten-free is hard but I would advise starting out by just getting familiar with a good health food store that has alot of gluten-free food. Usually they have a section of it or the staff can help you find different items. gluten-free is usually very well marked on items in the health food store. If it happens to be a smaller store, there's even a chance that their staff is very familiar with and possibly even uses gluten-free foods themselves. Of course, all natural meat, fruit and vegetables are all gluten-free. Also just to let you know with you having commented on her and vitamins.... almost all childrens vitamins I have found have gluten. The only ones I found at WM were a gummy brand that on the label specified that it is gluten-free. I pray that all goes well for your daughter. I pray for the point that she gets better, is healthy and doing great, and you're breathing a sigh of relief.

[Nantzie]

This may sound really selfish, but I don't mean it that way, I just want to know how you travel with a child on this diet. We are planning a trip to South Texas for two weeks in July. How do we feed our daughter when we are on the road? Is it possible? Shealey

That's not selfish AT ALL. That's actually my area of interest right now - how to be able to be gluten-free AND travel. Those of us diagnosed as adults sometimes spent years having such bad symptoms that it made travel difficult because of dealing with the symptoms. Now that we're on the road to wellness and can actually leave the house without getting sick, we want to get out and GO and DO.

Traveling gluten-free takes some planning, but it's totally possible.

So are you going to be staying with relatives or in a hotel? Flying or driving? What are her favorite foods? Does she tend to have a small appetite or a large one?

Nancy

[Nantzie]

Here is some information on celiac groups in Indiana. You could start by asking them for recommendations.

Open Original Shared Link

Open Original Shared Link

https://www.celiac.com/st_prod.html?p_prodi...-33107160020.91

Also, try PM'ing jenvan . She's in Indianapolis. She might be able to help point you in the right direction.

You might also want to post a new topic in the Doctors area to see if anyone here has a recommendation.

Nancy

[Pacer]

Shealy,

I am in the same boat. Just logged on this forum yesterday and created an account.

I am new to being a celiac mom, but my DH is celiac. He has been DX'd (age 39 by endoscopy after a lifetime of being told nothing's wrong, but he was 130 lbs at 6'2"!) long enough to know, that you have to learn to trust your self over and above doctors. Celiac disease is not treated by drugs, so there is no drug-company funded connection. Much of what we learn about celiac comes form brainstorming and shared experience with other celiacs or caregivers.

My son (age 6) has also been encouraged to wait for more damage before getting a formal DX. I have read on these forums that many insurance carriers and MD's will accept 'response to dietary change' as an alternative to +++ endoscopy. Not that is matters for most people - for us there is no real benefit to having a formal DX, since the special foods we're buying are not coverd by insurance anyway.

Even after a couple of days of being gluten-free, you should be able to see a change in your child. Sometimes seeing that change can give you motivation to go on. I know your hands are full - mine too. Hopefully the community can help keep you going.

[Guest GrimTribe]

Had I known more, I would not have waited as long. She now has major delays in speech, and is still about a year and a half behind for her age. Poor bug still has a lot of work ahead.....once a child is sick enough to yield positive test results, there can be detrimental effects to their development.

I get very agitated when docs take such a lax approach to these symptoms. Not all kids will have delays or development problems, but when you are dealing with malabsorption issues in children of a crucial developmental age, it's risky to take a wait and see approach.

Hope that helps some!

My girlfriend and I are still very new to this, but I noticed you said your child had a delay in her speech development.

Our little Steele is now in Speech Therapy after 2 yrs of fighting the school system for it.

There are some consonants he really has to concentrate to say, like T, G, C and combos like TR, CR, GR. He works very hard to get them right & we work with him at home & keep mad tabs on his progress at school. They don't even blink when we call or email them now.

Can you give us any more info on how the celiac disease can effect development? Steele is now 5, we started this hunt for Why Is Our Kid Always Constipated when he was 2.

Anything will help, even if you think its nothing.

Also, we are interested in the labs that do this kind of testing. We are very eager to get Steele tested & diagnosed. He's suffered enough and we are ready to get on with this thing.

I've seen Enterolab listed. I live in FL.

Also, is it possible to have my insurance pay for this or even a portion of the testing?

Thanks for everything & anything

~Raven & Diva

[Guest GrimTribe]

Hello,

I have so many questions?? My daughter is 21 mo. and diagnosed with Duarte Galactosemia at 3 weeks of age. It is a liver disease. She has always had an enlarged abdomen. We saw a GI in Feb. and she suggested that we scope her. The procedure showed that her intestines and lower part of her stomach was inflammed. The biopsy and allergy testing came back normal. It did show she was lactose intolerant, she is already on soy due to the liver issue. We were told that out of the three test that are done for the gluten allergy, my daughter was positive for the genetic make up. Her fulate level was low and they said that the little part between the stomach and intestine normaly has these little finger things that bring in the nutrients and my daughters were smoothed off and could not grab any nutrients. So basically they tell me she is going to have celiac disease and that I just have to sit and wait for it to happen. Does anyone know of anything that can be done to keep this from happening?? We go back in July for repeat blood testing. They suggested putting her on a multivitamin that has B-12 and folate. We are now doing that. I just feel I can't sit back and watch this happen. She is a rather normal and healthy little girl. She has had constant diarrhea for what seems like forever. Her dairy has always been limited and we are now giving her a lactaid pill daily to help with what lactose she does have. Any suggestions?? I would appreciate any comments!!! Shealey

Shealey,

Your child already has dietary issues. Tell her doctor to pucker up and kiss your hind end!!!!

Wait & See? Wait & see what? How sick a baby can get with prolonged diarrhea? Damaged villi is all the indication you need. That is NOT normal, I don't care what Mr. Ped GI has to say. And combined with inflamed lower intestine! This makes me so mad I'm dizzy!!!

...not at you...the Doctor... I have issues with Doctors, so forgive me my ranting...

Like people have said on this thread....you have to educate yourself, because despite the high incidence of celiac disease (est 1 in 133 Americans...not 133 thousand/million...1hundred and 33) an alarming number of Drs DON'T HAVE A CLUE!

My son, Steele has not been tested yet but I spent about a week researching this and after only 14hours of my research we put him on the gluten-free diet. After only a week his digestive issues are clearing up. Imagine your child's lactose problems and diarrhea being gone within a matter of days...it can happen

I started with a search on Google for gluten intolerance. And it lead me here within 24 hours.

Take care of your child. Drs are so educated they're dumber than rocks. Being smart

is knowing when your knowledge applies to a given situation. Drs live in a world of generalities. celiac disease is a very specific condition that is not the same for every one.

Study this forum, and while you're at it, look up Whole Food stores in or near your home town.

You're going to need them.

Forgive me if I'm brusque, but I personally cannot even begin to imagine *wait & see* as an option when my baby boy is so blocked up he's vomiting stomach bile. I won't go through that again. And I hope you never have to.

~PI$$'D at BONEhead Doctors!!!

Raven

[momof2sn]

Here is some information on celiac groups in Indiana. You could start by asking them for recommendations.

Open Original Shared Link

Open Original Shared Link

https://www.celiac.com/st_prod.html?p_prodi...-33107160020.91

Also, try PM'ing jenvan . She's in Indianapolis. She might be able to help point you in the right direction.

You might also want to post a new topic in the Doctors area to see if anyone here has a recommendation.

Nancy

You know you guys have helped me out so much. I am soooo glad I found this sight.

As per our travel. We will be traveling straight to Texas which is 21+ hrs. So we tend to eat out at least one day all three meals. I am not sure how to do that without gluten. My daughter has a very good appetite. Then generally the rest of the time we stay with relatives. Which is a mixture of eating out and home cooked meals. I saw a book on gluten free rest. on this sight, has anyone ever used one of those books?? Are they a valuable resource?

I did call the GI on Friday and she personally called me back. I flat out asked her why we were waiting on damage to the intestine to happen. She told me that we did not need to wait on blood work (antibody pannel is what she called it) to be done in July, which she realized was never done the first time. She said that the lactose intolerance was probably due to the liver disease (she really can't know that) and that the villi were visually worn a little, but biopsy was good. I went to local lab on Friday because I already had the blood test orders and they had no idea what test needed to be done, so anyhow we are waiting for them to clear that with the doctor and then we should have those results in a week. I will keep you posted on that.

I am now informing myself with all the great resources that have been provided by everyone here, as I have no idea where to begin, so this site has helped me out so much.

Shealey

[momandlovingit]

I just posted for the first time yesterday, my head is still spinnnig form what I have been reading and learning. What foods do you give to your family? Is there a book out there? I want to put all of us the diet, for I too have had these sypmtoms and believe I ahve it also, never been tested though. Is it easy to begin this diet? How hard will it be to change over? What advice can you give me with my son who does not have it? Again I want to change all of our eating habits to this diet will he benefit from it as well? My kids LOVE Mcdonalds what kid doesn't how do you keep them relatively normal and enjoy kid foods without going off the diet? All help will be wonderful thank you in advance. God Bless momandlovingit

[Nantzie]

Oh my gosh - the doctor doesn't even make sense. You can't see villi damage without a microscope. She may be referring to the scalloped appearance that the intestines can have when the damage is bad enough? How many biopsies did they take anyway? They're supposed to take 5 or 6 at least. The damage from celiac is patchy and scattered. It has been described like paint splattered on a wall. There can be extensive areas of damage and then other areas that are totally fine. Because the villi damage that they look for can't be seen with the naked eye, they take several biopsies to increase the chances of hitting a damaged spot. Honestly, I don't think the GI knows what she's talking about when it comes to celiac. What she's telling you to do is potentially very dangerous. I really recommend asking around the celiac support groups and finding someone else to take her to. I wouldn't go back to that GI.

I used to be a medical transcriptionist so I know what you mean about knowing that they're human. When I realized that most doctors not only can't spell, but can't even string a proper sentence together sometimes (it was always funny to work for the doctors who tried to dictate their own punctuation). But that's why they hire us. We keep them looking good and on time.

Driving and then staying with relatives is one of the best ways to go. Definitely get the Triumph Dining cards and the book. The dining cards make things a lot easier when you go to a restaurant. When people have something to read, they seem to retain the information better than if you tell them. It also makes everyone more comfortable because the kitchen has something in writing to refer to when they make her meals. The basic American dining card is in English on one side and Spanish on the other. Which would come in handy in Texas. The book is great because it gives a lot of advice on how to deal with restaurants.

In other people's houses it gets tricky, but it's better than staying at a hotel and not having a way to cook. Here's what I would do - Get yourself a plastic bin with a lid that you can take with you. Get a small pot and a small pan that you can keep in the bin along with a few cooking utensils. That way you can make whatever she needs. When you're done cooking for her, put them back in the bin so that they don't accidentally get used for regular food. You'll have to be careful of helpful relatives who might inadvertantly touch something with glutened hands, making it no longer gluten-free (second-hand gluten).

Also, start experimenting now with gluten-free food, even if you're not sure when you're going to start the diet. Go to the health food stores in your area and buy some things to try out. (Stay away from the Ener-G breads - blech) Not everything is going to work out and some stuff may be downright nasty. If you have a few treat things that you know she likes, it will make things much easier.

For the road, I'd pre-make as much of the food as possible and keep it in a cooler. gluten-free pancakes for breakfast? Maybe some filling fruit like banana or apple? Van's makes frozen wheat-free waffles too. A lot of regular grocery stores sell them. Every gluten-free pretzel I've ever tried has tasted like regular pretzels to me, so that would be a good snack too. Raisins or dried cranberries. Plain M&M's are gluten-free too (I think the only M&M that isn't gluten-free is the crispy). So are Jelly Belly's. Good to keep on hand for any roadtrip fits. Lunch and dinner could be precooked chicken or hamburger patty. Maybe some Frito-Lay brand chips (they label everything and won't hide gluten or any other allergen behind a latin name or behind "natural flavors), make sure you read the ingredients).

Outback Steakhouse has a gluten-free menu that you just have to ask for. So if you know where the Outbacks are along your route, you'll be able to plan to stop there for lunch or dinner.

Nancy

[Nantzie]

Here are some resources in South Texas - they both have lists of gluten-free stores that you can stop at on your way to your family's house to stock up.

Houston

Open Original Shared Link

San Antonio

Open Original Shared Link

Nancy

[momof2sn]

Oh my gosh - the doctor doesn't even make sense. You can't see villi damage without a microscope. She may be referring to the scalloped appearance that the intestines can have when the damage is bad enough? How many biopsies did they take anyway? They're supposed to take 5 or 6 at least. The damage from celiac is patchy and scattered. It has been described like paint splattered on a wall. There can be extensive areas of damage and then other areas that are totally fine. Because the villi damage that they look for can't be seen with the naked eye, they take several biopsies to increase the chances of hitting a damaged spot. Honestly, I don't think the GI knows what she's talking about when it comes to celiac. What she's telling you to do is potentially very dangerous. I really recommend asking around the celiac support groups and finding someone else to take her to. I wouldn't go back to that GI.

I used to be a medical transcriptionist so I know what you mean about knowing that they're human. When I realized that most doctors not only can't spell, but can't even string a proper sentence together sometimes (it was always funny to work for the doctors who tried to dictate their own punctuation). But that's why they hire us. We keep them looking good and on time.

Driving and then staying with relatives is one of the best ways to go. Definitely get the Triumph Dining cards and the book. The dining cards make things a lot easier when you go to a restaurant. When people have something to read, they seem to retain the information better than if you tell them. It also makes everyone more comfortable because the kitchen has something in writing to refer to when they make her meals. The basic American dining card is in English on one side and Spanish on the other. Which would come in handy in Texas. The book is great because it gives a lot of advice on how to deal with restaurants.

In other people's houses it gets tricky, but it's better than staying at a hotel and not having a way to cook. Here's what I would do - Get yourself a plastic bin with a lid that you can take with you. Get a small pot and a small pan that you can keep in the bin along with a few cooking utensils. That way you can make whatever she needs. When you're done cooking for her, put them back in the bin so that they don't accidentally get used for regular food. You'll have to be careful of helpful relatives who might inadvertantly touch something with glutened hands, making it no longer gluten-free (second-hand gluten).

Also, start experimenting now with gluten-free food, even if you're not sure when you're going to start the diet. Go to the health food stores in your area and buy some things to try out. (Stay away from the Ener-G breads - blech) Not everything is going to work out and some stuff may be downright nasty. If you have a few treat things that you know she likes, it will make things much easier.

For the road, I'd pre-make as much of the food as possible and keep it in a cooler. gluten-free pancakes for breakfast? Maybe some filling fruit like banana or apple? Van's makes frozen wheat-free waffles too. A lot of regular grocery stores sell them. Every gluten-free pretzel I've ever tried has tasted like regular pretzels to me, so that would be a good snack too. Raisins or dried cranberries. Plain M&M's are gluten-free too (I think the only M&M that isn't gluten-free is the crispy). So are Jelly Belly's. Good to keep on hand for any roadtrip fits. Lunch and dinner could be precooked chicken or hamburger patty. Maybe some Frito-Lay brand chips (they label everything and won't hide gluten or any other allergen behind a latin name or behind "natural flavors), make sure you read the ingredients).

Outback Steakhouse has a gluten-free menu that you just have to ask for. So if you know where the Outbacks are along your route, you'll be able to plan to stop there for lunch or dinner.

Nancy

Nancy you are a life saver. That has given me so many ideas!!!

Can my daughter really get sick from pots and pans used for gluten products?? I didn't even know that was possible. Do I need to buy new pans for here at home for only gluten-free foods?? I have heard of people on the forum talking about soaps too. Do I need to switch her bath products too?? I think in my head that she is not violently ill like alot of other children I hear about and I also know that constant diarrhea can't be good. Hey, the Doc did tell me that by changing her diet that the villi will be healed in two weeks.... Is it only the intestinal damage that is not irreversible??

The closest health food store is about 30 min. and I plan to go soon to get some things. I know my next grocery trip is going to take me forever and probably frustrate me too!!

You asked about the biopsy and I was in the room during the procedure and I remember them doing 6 different biopsies and they said they were all negative. We went for the blood draw today (antibody panel is what the doctor called it) It was a nightmare. The lab here had to call the ped GI to ask what kind of test they needed to do, that always makes you feel good when you go in for an order and they have no idea what to do!!

I have an appt. with our ped next week and I will talk with him more, but I am gathering my resources to switch not only my daughter but all of us to gluten-free, I just think it will be easier that way.

I will definitely order the Triumph dining book and cards. What about dairy is it gluten-free or doe it depend on the brand??

Thanks for all the great help!! Shealey

[Nantzie]

Hey Shealey -

No problem at all. I'm happy to be able to help.

One of the things that makes some of these things make sense is that gluten is STICKY. It sticks to and in everything. It takes such a small amount to cause a reaction that it's worth it to have two sets of some things if you are going to have a shared household at all, either at home or while you're with relatives.

When you're evaluating whether gluten is or is not the problem, it's good to go 100% gluten-free, so you can really see what the reaction is. The tricky thing about celiac is that it doesn't take much at all (residue from a crouton) to cause a reaction. Unless you go 100%, hardcore gluten-free you won't know if gluten is the issue, or if you should investigate other things.

It's much harder to tell when it's your child and not you. As an adult, I KNOW how I feel. Even with that, sometimes it can be hard for me to be able to tell if my kids are just being normal cranky, or if they've been glutened. But just like you have developed mommy intuition, you'll develop gluten intuition. For example, my son got glutened last week. He's cranky, which can be normal 3yo behavior, but he also doesn't want to go play outside. Which is SO not like him. You'll be able to spot your child's "tells" as you move forward. You'll get the hang of it sooner than you think.

Pots and pans: Stainless steel pans are the best and easiest. You can cook gluten in them, scrub them out real good (make sure you clean VERY well around any rivets) and then cook a gluten free meal in them five minutes later. Perfect for shared homes. And, if you use Barkeeper's Friend cleanser on a stainless steel pan it look like you just took it out of the box. Love that...

Nonstick can be problematic. The little scratches that happen, especially if you put them through the dishwasher, can hold gluten. Basically, unless you really baby nonstick, or don't EVER use gluten in it, it scratches so easily that (to me) it's not worth the bother. It just depends on how messed up your nonstick pans are if you have them. If you always use gentle utensils, never put it through the dishwasher, always use gentle soaps, etc., it should be fine. If you're like me and your nonstick is torn up, it's better not to use them anymore.

If you have cast iron you shouldn't use it. The seasoning of the cast iron that makes the magic of cast iron is porous and holds the gluten. You can reseason it later, but for now, it's best to not use it.

Kitchen, etc. : These are the things that should be replaced -

Cutting boards and wooden cooking utensils - the grain of the wood can hold gluten.

Toasters - There is no way to clean them. The residue from gluten in a toaster is enough to make someone sick. If you have a toaster oven, just clean the rack really well and you should be fine.

Colander - I didn't replace either of my colanders. I use those plastic colanders with the big holes. I was able to clean them really well and have had no problems at all. If you have those fine metal mesh colanders, you'll need to get a new one. Just think about what potential there is for gluten to get stuck and judge from there.

Plasticware (plastic plates, cooking utensils, etc.) - I had a few plates that were scratched up that I tossed. There were also a few very old plastic cooking utensils that there was no way I could clean the little nooks and crannies. 90% of my cooking utensils I kept with no problems.

Personal care products (shampoo, etc.) - Definitely replace these. Suave will label everything. I use the suave kids strawberry shampoo. Unilever companies will label everything. Pantene does this also if you're looking to change your stuff too. If you read the ingredients list and there isn't a gluten source listed, with these companies, it's fine. Personal care products can be tricky though because there is no requirement to label like with food. I've been glutened more than once by undeclared gluten in shampoo. The companies just don't know where all of their ingredients are coming from, which often come from outside, sometimes overseas, sources.

It sounds odd, but I have to be especially careful of hair and makeup stuff. Stuff like lipstick and lip balm is more obvious, but I didn't realize how much of a girl I was until I kept glutening myself by not being aware of how much I touched my hair during the course of a day. Brushing my hair out of my eyes, scratching my head, etc. The residue on your hands from that is enough to cause a reaction. I had this great conditioner that I held onto for dear life for a few weeks, but ended up scrapping because I kept glutening myself. No use looking cute when all you want to do is lay down on the couch with the drapes closed. It ended up not being worth is for me, although there are some here who are more disciplined with not touching their hair, face, etc. With kids, you're dealing with the more undisciplined end of the spectrum. You also want to make sure you can give her hugs and kisses without worrying.

The villi seem to heal pretty quickly. I'm not sure about two weeks as a benchmark, but usually within a few months. As far as your dairy question, it's best to avoid gluten for a while. It's the very tips of the villi that make the enzyme that digests lactose. If you do a search on casein (the protein in dairy) you'll be able to find more information on casein intolerance, which can go along with celiac and other forms of gluten intolerance.

For the most part, everything is reversible. Some people have problems and the damage isn't reversible. But most people regain a normal level of health. Sometimes they're even healthier than their peers. My kids and I used to get sick all the time and my husband rarely did. Now, my husband gets sick more often than I do. So many people in my town are suffering so bad from allergies this year. My kids and I don't have even a sniffle.

On your next few grocery shopping trips, leave your daughter with daddy, or with grandma, and take your time. Kraft, McCormick, Frito-Lay, ConAgra will all fully disclose any gluten containing ingredient. Just make sure you read the entire ingredient statement. You're going to be shocked at how much food is made by Kraft and ConAgra.

When you go to the health food store, make sure you stay away from spelt, kamut, sprouted wheat, wheatgrass, etc.. For some reason it's common for health food store workers to think that these things don't have gluten. I've come across a couple stores in my area that have a "No and Low Gluten" section.

My doctor didn't know what tests to do for me either. She took my scrap of note paper I brought and tried to do a search on the lab software. I think I got an IgA and and IgG. If I remember right she couldn't find the Ttg on the list. She's great though. Very encouraging, listens to me, and read whatever strategically highlighted celiac information I brought in. Very interested in learning from my experience as a patient. Love her.

Like I mentioned earlier, dairy can be problematic when you first go gluten-free because the villi also make the enzymes to digest lactose. But, a lot of dairy is fine. Make sure you read all the labels though. Sargento sometimes uses gluten-based starches to keep the cheeses from sticking when they do the shredded cheeses. I pretty much stick to Kraft with cheeses and the rest of the dairy cases. I've never liked yogurt, so I'm not sure about that. I know that Yoplait will label everything. I use Daisy sour cream, but I'm not sure if any of the other brands have gluten or not.

Oscar Meyer hot dogs (a Kraft product) is a staple in our house. No buns, but the kids don't seem to miss them. Delimex taquitos are also gluten-free if you get the ones in the corn tortillas.

It is a lot to take in all at once. Don't stress. When I first got here, most people came across celiac while surfing the web looking for answers. For me, the day I found out about celiac, found this board and felt like I stumbled across people from my home planet , it was September 2, '05. My first doctor's appt was end of Oct 05. My GI appt was end of Jan 06. Endoscopy mid Feb 05. So that was almost six months of time for me to learn everything and try products, etc. That was the common thing back then (all of a year and a half ago...). Nowadays, so many people come here either with an official diagnosis, or in the middle of the testing process. So it can seem like you have to know and do everything all at once. But most of us old-timers learned it all while we were waiting for doctors' appts.

Just put one foot in front of the other and make the changes as you can afford it (kitchen stuff first). I hope your little girl feels better soon and that you find some answers in this gluten journey.

Also make sure you read the other newbie threads. The veterans here don't have the time to thoroughly answer all of the questions for all the new people, although we all wish we did. So it's good to read all the advice to all the new people. There are so many helpful people here.

Hugs,

Nancy

[jacqui]

Hello,

I have so many questions?? My daughter is 21 mo. and diagnosed with Duarte Galactosemia at 3 weeks of age. It is a liver disease. She has always had an enlarged abdomen. We saw a GI in Feb. and she suggested that we scope her. The procedure showed that her intestines and lower part of her stomach was inflammed. The biopsy and allergy testing came back normal. It did show she was lactose intolerant, she is already on soy due to the liver issue. We were told that out of the three test that are done for the gluten allergy, my daughter was positive for the genetic make up. Her fulate level was low and they said that the little part between the stomach and intestine normaly has these little finger things that bring in the nutrients and my daughters were smoothed off and could not grab any nutrients. So basically they tell me she is going to have celiac disease and that I just have to sit and wait for it to happen. Does anyone know of anything that can be done to keep this from happening?? We go back in July for repeat blood testing. They suggested putting her on a multivitamin that has B-12 and folate. We are now doing that. I just feel I can't sit back and watch this happen. She is a rather normal and healthy little girl. She has had constant diarrhea for what seems like forever. Her dairy has always been limited and we are now giving her a lactaid pill daily to help with what lactose she does have. Any suggestions?? I would appreciate any comments!!! Shealey

She must have it. Flattened villi, needs B-12 and folate and + genes=celiac disease!!

I was told by my childrens pedi and I reead it I believe in Dr. Green's book that testing on children is inaccurate under 5 years old and they suggest testing at 7 years old.

I would be adamant with her doc and say you want to know and you want to start her on the gluten free diet. My 6 1/2 year olds bone age is less than 5 years old related to celiac disease and probably Hashimoto's autoimmune disease (we have both) per her endocrinologist. These both stunt growth. My other daughter has osteopenia and both genes but negative antibodies and biopsy! I find celiac disease a very confusing disease.

Is your daughter seeing an endocrinologist? Mom's from a suport group are the ones who told me and that is why we found out the above info. on her. I would highly suggest finding/get referral to an endocrinologist. I lucked out and see one that practiced in England and he told me celiac disease is a routine test there, so he is very familiar with celiac disease.

Good luck!

Jacqui