Could It Be?

[Carolmom3]

HEllo... My almost 2 year old has been sick for 5 weeks now, almost 6. This all started when we gave him Newman's Own peanut butter sandwhich cookies. With in 12 hours we were completly broke out and with in 24 hours we were vomiting ALOT! Since then we have exhausted every test our local medical system can do. They are sending us to gastro and alergist in St. Louis. Since all they tests show nothing and our peditrician swares it's an allergy, I took him off gluten. Guess what the vomitting stopped and the diarehea slowed, and he wasn't self abusing. Oh I had forgotten to mention that. He scratched himself up while screaming in pain, it was really bad.

I called the St. Louis dr's after reading many things that said to take them off gluten before testing and many that said to keep them on. Well I had to put him back on it yesterday. HE LOOKS HORRIBLE!!!! His little toes has not even begun to heal. So, am I correct in assuming that we have found the source? I hate to put him through this because come Weds we have to take him off the allergy med that helps with the symptoms. It's going to be horrible for him.

Please let me know what you think. He had craddle cap that is horrible and his behavior while eating gluten is really bad! It's like hitting the terrible two's and three's at the same time. He does become aggressive. Also the gas is really bad with him. His stomach does get distended before he vomits, so we know when it's comming. Just want to help my little man. If he does get the dx then should we all be tested?

Thanks!! Sorry for the long post.

Carol

[mushroom]

Hello and welcome to the board. I am sorry your wee fellow is having such a tough time. Do you know if they have done the blood testing for celiac disease? Any doctor can order this, t does not have to be a gastro or an allergist. If they have not you should ask them to do it right now! It consists of:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

How long was he off gluten, by the way? Of course, the confounding part is the peanut butter because of peanut allergies. Has he had peanuts before??

[mamaupupup]

First, you are a GREAT mom for doing all you're doing. Hang in there! And, yes, do what you can to stay on gluten until you test. And, yes, it's excruciating!

We are currently where you are from children suffering standpoint: kids who are in pain, itching, and acting out/acting horribly. We have twin 5 year olds who are likely to have a definitive diagnosis of Celiac later this month. We have positive celiac panels (ttg's were high) and also both kids have the gene pairs. After seeing a specialist in LA (Dr. Pietzak at CHLA who we LOVE), we decided to go ahead and do the biopsies. After this testing we will exclude gluten from their diets forever, I hope!

Yes, if he tests positive, all first and second degree relatives should test for Celiac.

Other notes:

- Be prepared that they may ask you to keep him on gluten to do a biopsy. In fact, since his symptoms are so severe, you may want to call and ask them to schedule the biopsy for the day of your visit so that you can take him off gluten immediately after the appointment.

- I personally believe the results of the ttg are enough for a positive diagnosis (it's about 98% reliable) BUT doctors are still dedicated to doing biopsies to see the degree of damage to the villi

- Also, I have heard that there may be a vaccine in development and that only patients who have been positively diagnosed with a biopsy may have access to the vaccine (note, I'm not a fan of vaccines but I am keeping my mind open)

- If you haven't found it yet, celiac.org is an additional excellent resource. I particularly found the handouts helpful: Open Original Shared Link

Thinking of you!

[Carolmom3]

Hello and welcome to the board. I am sorry your wee fellow is having such a tough time. Do you know if they have done the blood testing for celiac disease? Any doctor can order this, t does not have to be a gastro or an allergist. If they have not you should ask them to do it right now! It consists of:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

How long was he off gluten, by the way? Of course, the confounding part is the peanut butter because of peanut allergies. Has he had peanuts before??

Thanks for such a quick reply. Our local doc has tested for everything here, except celiac. In here words, "Springfields test would just have to be redone when you get to St. Louis. The test just isn't accurate, the one we offer". So, we have to wait. I asked and she said it just needed to be done with the specialist.

He has been eating peanut butter for several months. He has eaten occational nut when he had trail mix. They tested for dairy, nuts, tree nuts here and they were all negative. We took him off gluten for almost two weeks. By then the redness in face had gone down, he wasn't scratching his limbs, and he wasn't aggresive. Now he is red, has the sore all over his arms and is scratching horribly. I don't like seeing him this way! He keeps digging at his face and will scratch it up. It scares me!!

Thanks for the info and thanks for allowing me to be apart of this group. I need to learn all that I can. What about craddle cap? Have you seen where it's bad and doesn't go away in children with celiac? I've read that their hair could fall out completly. He has it bad! Never has gotten rid of it. Also, he was diagnoised with Acid reflux around 3 or 4 weeks old. Could this actually be first signs of celiac? I bf for months.

Carol

[Carolmom3]

First, you are a GREAT mom for doing all you're doing. Hang in there! And, yes, do what you can to stay on gluten until you test. And, yes, it's excruciating!

We are currently where you are from children suffering standpoint: kids who are in pain, itching, and acting out/acting horribly. We have twin 5 year olds who are likely to have a definitive diagnosis of Celiac later this month. We have positive celiac panels (ttg's were high) and also both kids have the gene pairs. After seeing a specialist in LA (Dr. Pietzak at CHLA who we LOVE), we decided to go ahead and do the biopsies. After this testing we will exclude gluten from their diets forever, I hope!

Yes, if he tests positive, all first and second degree relatives should test for Celiac.

Other notes:

- Be prepared that they may ask you to keep him on gluten to do a biopsy. In fact, since his symptoms are so severe, you may want to call and ask them to schedule the biopsy for the day of your visit so that you can take him off gluten immediately after the appointment.

- I personally believe the results of the ttg are enough for a positive diagnosis (it's about 98% reliable) BUT doctors are still dedicated to doing biopsies to see the degree of damage to the villi

- Also, I have heard that there may be a vaccine in development and that only patients who have been positively diagnosed with a biopsy may have access to the vaccine (note, I'm not a fan of vaccines but I am keeping my mind open)

- If you haven't found it yet, celiac.org is an additional excellent resource. I particularly found the handouts helpful: Open Original Shared Link

Thinking of you!

Thanks for yourresponce. I couldn't imagine have twins and going through this. My heart goes out to you. Once my hubby and I have insurence back I know I will betested but I don't know if my hubby will go for it. I'm surethat one of us is the carrier. He is 41 and still has craddle cap! This is going to be an interresting road to travel!

My other thought is, how am I going to tell him he can't eat at our family resturant? There is gluten EVERyWHERE. WE have a bakery to boot. This is going to be so hard. I guess Nana is going to learn how to do this as well.

I have a feeling since this is a big hospital that we are going to that they won't just schedule anything but blood work for that first visit. I wish they could see all the results and just do it all then since we live 4 hours away. Such as life.

Thanks for the info and I will be checking back.

Carol

[mamaupupup]

Hi Carol!

Thanks for your compassion. The funny thing about twins is that on some levels it's twice as hard and on other levels it's twice as easy. We have had a bizarre rollercoaster Celiac diagnosis ride where we've thought one had Celiac and the other didn't and vice versa. Frankly, it will be easier for everyone if they both have Celiac--and I think it will be easier for them too--they will be able to support each other and there will be no confusion about who gets what. We are planning to make our house a "safe haven" and eliminate all gluten (including changing the dog's food, etc.) since we figure there will be enough cross-contamination in the rest of the world...

Back to your family...do you have a restaurant and bakery? That is AWESOME! The great thing is that you'll be able to have some influence (I hope) on what is offered and how it's prepared! It would be incredible to have a "safe" restaurant/bakery to go to! And, in California, the gluten free restaurants and bakeries are doing phenomenal business!!!

And a few ideas for the next phase until your appointment...

- My accupuncturist (yes, we are a bit earthy-crunchy) suggested feeding the girls probiotics while they're on gluten. I have no idea if it interferes or not with biopsies, etc. so I have been reluctant to give them probiotics. If you decide to try it, I have found a chewable one the girls like at Target.

- It seems like hydrating a lot helps to flush out some of the gluten out of people's systems. I can't imagine that it flushes out so much that it would affect a test outcome. We typically limit the girls beverages to water and milk, but I have been letting them have more juice (diluted) over the last month just because they've been on so much gluten.

- Before we had any clue what was going on, I used to massage our DD who has itchy skin with lotion which seemed to help. I even spent 30+ minutes massaging her at times in the middle of the night just so she wouldn't scratch. I used Aveeno Baby that has no fragrance. Another friend suggested using Coconut oil which was super-hydrating but stains everything it touches.

In terms of the appointment, we also went from a small town to a giant hospital. When we were in our appointment with the pediatric GI she said, "I'd have done the biopsy today if I could have to save you another trip." If you can and you're prepared to do the biopsy, try calling and say that you have 8 hours of travel for this appointment and that you want to do all the testing including the endoscopy that same day. If they push back ask for a phone consult ahead of time from the doctor so the doctor can decide and get you on the schedule. You could also have your physician call and try to get it all scheduled at the same time.

By the way, one of our daughters had symptoms at 2.5 years old. It's taken us 3 years to get where you are now...I've been poisoning my kids for three years too long!!!

You are such a great Mom for catching this so early! Thinking of you!!!

[Carolmom3]

Hi Carol!

Thanks for your compassion. The funny thing about twins is that on some levels it's twice as hard and on other levels it's twice as easy. We have had a bizarre rollercoaster Celiac diagnosis ride where we've thought one had Celiac and the other didn't and vice versa. Frankly, it will be easier for everyone if they both have Celiac--and I think it will be easier for them too--they will be able to support each other and there will be no confusion about who gets what. We are planning to make our house a "safe haven" and eliminate all gluten (including changing the dog's food, etc.) since we figure there will be enough cross-contamination in the rest of the world...

Back to your family...do you have a restaurant and bakery? That is AWESOME! The great thing is that you'll be able to have some influence (I hope) on what is offered and how it's prepared! It would be incredible to have a "safe" restaurant/bakery to go to! And, in California, the gluten free restaurants and bakeries are doing phenomenal business!!!

And a few ideas for the next phase until your appointment...

- My accupuncturist (yes, we are a bit earthy-crunchy) suggested feeding the girls probiotics while they're on gluten. I have no idea if it interferes or not with biopsies, etc. so I have been reluctant to give them probiotics. If you decide to try it, I have found a chewable one the girls like at Target.

- It seems like hydrating a lot helps to flush out some of the gluten out of people's systems. I can't imagine that it flushes out so much that it would affect a test outcome. We typically limit the girls beverages to water and milk, but I have been letting them have more juice (diluted) over the last month just because they've been on so much gluten.

- Before we had any clue what was going on, I used to massage our DD who has itchy skin with lotion which seemed to help. I even spent 30+ minutes massaging her at times in the middle of the night just so she wouldn't scratch. I used Aveeno Baby that has no fragrance. Another friend suggested using Coconut oil which was super-hydrating but stains everything it touches.

In terms of the appointment, we also went from a small town to a giant hospital. When we were in our appointment with the pediatric GI she said, "I'd have done the biopsy today if I could have to save you another trip." If you can and you're prepared to do the biopsy, try calling and say that you have 8 hours of travel for this appointment and that you want to do all the testing including the endoscopy that same day. If they push back ask for a phone consult ahead of time from the doctor so the doctor can decide and get you on the schedule. You could also have your physician call and try to get it all scheduled at the same time.

By the way, one of our daughters had symptoms at 2.5 years old. It's taken us 3 years to get where you are now...I've been poisoning my kids for three years too long!!!

You are such a great Mom for catching this so early! Thinking of you!!!

My parents and my brother and his wife won the restuarant. I work there when I have time to help out and we usually eat there once a week with my parents. There is alot of cross contamination that we would have to deal with. Mom doesn't always wash measuring cup from dip to dip.. like flour-dump, sugar- dump... you know how it goes.

I will try calling the Dr office tomorrow, in between finishing two papers for tomorrow night! Yes I'm a full time student, with three small children, and work for a local community college. Never a dull moment. I would love to do all the testing on the same day!! Just makes more sence to me instead of driving so far.

I started using the Aveno for exemea on him and it helps but he has scratches all over. DO you notice aggressive behaviors? We have noticed they have intensified this weekend now that he is back on gluten.

We have been giving him a probiotic for a couple of weeks now. We use one that goes into a cold drink. He doesn't seem to mind it!

This is a great forum! I'm thankful that I came upon it. I thought I was going crazy and was really starting to get upset. All in God's timing wil we find all the answers. He created that little body and He will heal it!

I ran into someone at a local eatery and my little guy started a conversation with him. Just so happens that he has 2 little ones that have to eat gluten-free and two with dairy allergies. He told me aboutthe cocoanut oil as well. We will see. Praying these next 2 weeks go by fast!!

Will be keeping you my thoughts and praying you have a great week!

Carol

[ciamarie]

IMHO - if you can't get the little one tested within just a couple days you need to take him off gluten asap. I can't see how any dr. could expect him to continue to suffer like that to wait for testing. I also wanted to comment that Aveno probably has oatmeal, which would very likely contain gluten. Hopefully there's a gluten-free alternative you could find? Does anyone have any suggestions?

[mamaupupup]

Great point about Aveeno and the Oatmeal...running to check now...you are RIGHT!!! My tube of Aveeno has oat in it. Their number is 866-428-3366, I'll call tomorrow! Thank you for pointing that out! I need to add to my list of "purging" items is to check the bathroom!

coconut oil is unlikely to have gluten...thank goodness!

On aggressive behaviors, here was our morning (remember I have 5 year old fraternal twin girls): we are gluten loading, let twin A eat three slices of bread between 7 and 10 am. She probably physcially attacked her sister a half-dozen times. There was hitting, kicking, pushing, and, yes, biting. That was in addition to the taunting, annoying the dog, and just general not controlling what her body was doing (whacking Dad while reading, etc.). By 10 am and the biting incident it was time to separate the kids. I took our little thug to the grocery store. My husband and I spent a good portion of the day swapping kids and doing separate activities to avoid more aggressiveness. I think she acts out because she feels out of control internally. ugh!!! 9 more days for us!

So, YES, I have one who is more aggressive on gluten and when gluten loading. Our other twin is doing her best to avoid eating gluten although she knows she has to (she figured out on her own that wheat was a bad thing at 3.5 years) and she is just an amazingly self-aware zen kid.

Hang in there--you are Supermom! And use your superpowers (and prayers) to get an earlier appointment with everything in it!!! Thinking of you...and the restaurant is going to be awesome once everyone is on board!!! Those cute kids you met today are going to want to meet up and eat out safely there someday!

[frieze]

Open Original Shared Link

[mommida]

Try to get an appointment asap. You really need the endoscopy with biopsy to really find out what is going on in the digestive track.

If you are gluten free before testing for Celiac, you are wasting your time. The test only picks up on the damage caused from eating gluten.

The symptoms can also be present for many other disorders/diseases. Gluten can also be a trigger for Eosinophilic GI track disorders. (another reason to make sure the patient is still eating gluten for testing)

Make sure you get copies of all test results!

Hang in there.

[Carolmom3]

Morning everyone... we, like the rest of you, are just waiting! But I did call the dr office and they were like, "Didn't they tell you to be prepared to spend the night?" I told them no. She told me they will do exam and decide what testing to do and they will more than likely do it the next day. Great!!!!

So here we are gluten loading. I have even gone as far as giving him the cookies that made him sick to begin with! What have I done to him... and us!!!

Lst night he got up SCREAMING and he was OUT OF CONTROL!!! It took both of us to get him together. When I got him up today there is blood in his crib and on his pants. He gouged so badly!!! His legs look horrible. It's just been horrible this week. We have 7 days to go. We can't give him any more allergy meds after today, so it's bound to get worse.

Thanks for all the support your families have give this week. Right now I'm down, with something and our local school cancelled for 2 days for state basketball tourney's. That will leave me with all the kids for days on end. I'm not really excited!

Life will go on! I am strong because HE makes me strong!!!

Carol

[mamaupupup]

Hi Carol!

Thinking of you! I'm so glad that the doctors will do the endoscopy asap, if needed so you only need to make that one trip.

I'm so so sorry about how horrible gluten attacks your son's body. I'm wondering if he really needs to gluten load--it seems his body has such a significant response to gluten that even a small amount might be enough. The GI's office probably won't know how exactly to respond, but maybe they can get you in sooner?!? Poor little guy (and Mom, Dad, and siblings!).

We're gluten loading for 6 more days...so far no real aggressive attacks from DD1...DD2 has a headache for the fourth day in a row. Yes, and cookies...it's pretty much the only way DD2 will eat wheat--she tastes it and puts it right down. Chocolate chips are convincing!

I'm thinking of you! Hope you ALL feel better soon!

[Carolmom3]

Well... no more relief from allergy meds. We are on the count down. 6 more days till we go to the city. He woke screaming again last night. He is scratched up something horrible!!! I feel horrible about letting him eat whatever he wants. I know we are going to pay for it!! He must really be hurting to wake up screaming like he is.

Praying for all of our children that have to endure this horrible disease. I'm purposly not getting much at the store and using up what we have. It's going to be hard making the switch with all the kids. I honestly think my hubby will have the hardest time with it!

Have a blessed day my new friends.

Carol

[Fiddle-Faddle]

If it were my child, I would take him off gluten immediately. And, in fact, that is exactly what I did do with my children.

If it were a peanut reaction, no way would they make you feed your child peanuts until he reacted enough for them to MAYBE see it in blood work or endoscopy. And gluten-loading for a few days is NOT enough for the test to be accurate--and these tests are notoriously inaccurate in young children, anyway.

If going off gluten is not the answer, you can always go back on gluten and then do further testing. But it's already clear that gluten is involved.

Our medical system is absolutely brilliant in many respects. But in this case, I believe it is completely failing you.

[Takala]

Aveno has oats. Regular Oats are cross contaminated with wheat. Even with specially grown/prepared gluten-free oats, a significant percentage of celiacs and gluten intolerants react to oat proteins as if they were wheat.

Stop using Aveno.

[mommida]

She is so close to testing day, pray for accurate results!

I still have to worry about my son getting drafted someday. It would be such a horrible experience to be put into service and have no control over your diet, because there is no official diagnoses for him. ( household was gluten free because of my daughter's diagnoses before he could be tested. later exposure to gluten made him really sick after being gluten free)

Have faith and strength right now! My thoughts and prayers are with you.

Gluten free as soon as your little one wakes up after the endoscopy.

[mamaupupup]

Thinking of you all!

[Ollie's Mom]

She is so close to testing day, pray for accurate results!

I still have to worry about my son getting drafted someday. It would be such a horrible experience to be put into service and have no control over your diet, because there is no official diagnoses for him. ( household was gluten free because of my daughter's diagnoses before he could be tested. later exposure to gluten made him really sick after being gluten free)

Come join us in Canada if there's ever a draft!!

[Carolmom3]

Well... A few more days. I can't wait to get all this over with. My son now is having allergy attacks because he is off ALL allergy meds. I did call the clinic today ad explained what he was doing, asking if he could take anything for relief. They told me he could have Benadryl up till three days before testing. So I'm giving him some and I've switched lotions so he wouldn't be getting the oats.

It's really neat because God put me in the right spot antthe right time. Met a couple tonight that their young child is displaying very similar things. His dad has a gluten allergy. Anyway, it was a great conversation!

Praying you all are doing ok today. A few more days for some of us that are doing testing. May God take care and protect our children.

Carol

[mamaupupup]

Hi Carol!

Thinking of you all! And, I was thinking of you at midnight as both our girls were up crying about their achy legs. One of the girls was scratching all over. It took us about two hours to get them both back to sleep. I thought of you and knew we weren't alone! I'm soooooo ready to get gluten out of our lives! Gotta run!

[mamaupupup]

Hi Carol,

I think you're on your way to St. Louis. Just a note to let you know I'm thinking about you and sending prayers your way!

[Carolmom3]

Morning!!!!

Yes the "midnight scratch" is getting old!!

We are going to St. Louis in 48 hours. I'm so ready!!! Yesterday we visited the middle son's GI specialist and she ordered a Celiac panel right on the spot and she is going to be scoping with in two weeks of the results being back. talk about moving fast. I pray that St, Louis is just as swift. This Dr. comes to Spfd from Kansas City. Of course we will have to travel to KC for the scope. Lots of miles!!

Praying that each of you are doing well today. We have so many struggles as parents and so many responcibilities. Sometimes I know I just want to throw in the towel even though I know this is what I want. I'm reassured that I'm not in this alone. Jesus is walking right by my side. The path to salvation was to never be easy. The small sacrifices we have, which may seem to be big at the time, are nothing compared to the ulimate sacrifice He made over 2000 years ago.

Did mean to get preachy, just thankful that I know each day when I wake up is a new day and a new chance to make a difference.

Right now I have to tell you something that is kinda ironic. We lost all the food out of our refrige. My 3 year old turned the freezer on the coldest setting, frosted and froze the whole thing up! I was wondering how I was going to "throw" out all this particially good food. My favorite salad dressings, my this my that, and start all over. See, God was watching out for me and knew how to start the process!! Though I'm not thankful to spend my only day off this week, from major running, cleaning out a frige... I know that when I go to restock that the things I'm putting in there won't be poisining my children!! PTL...

You can always find good. Well I guess it's time to get off my "blessed assurance" and get my child to school. I'm praying for our children, their doctors, and our perserverence so we can make it though.

Blessings,

Carol

[mamaupupup]

Hi Carol!

Oh my gosh the fridge incident!!! It's great when 3 yr olds can be "helpful"!!! Yes, God is working in your life!!!

I just finished getting the girls to bed. We were at Children's Hospital LA for their endoscopies today.

All in all, things went well. However, DD1 said, "This was the worst day of my life." She was very unhappy coming out of anesthesia. DD2 was only slightly less unhappy. We made today an "all you can eat ice cream day" -- seems fair enough! Their poor little throats were sore. We'll have results back next week.

Carol-let me know if you want a more detailed account of our experience on the endoscopy front .

BTW the doctor asked us to keep them on gluten one more week til we get the endoscopy results back. I told her I couldn't promise that I would. I'm sleeping on it and will decide in the morning!!! She said she understood -- she wasn't critical at all, just conservative from the physician's side, I think.

Thinking of you!

[Carolmom3]

OK really, one more week??? THAT IS HORRIBLE!!!!!!!!!!!!!!!!!

Yes 3 year olds are most helpful. Lots to do today for the big trip tomorrow. I'll be praying that we all survive one more day till the answers some.

My kids will definatly like the "ice cream all day thing" Good idea!!

Blessings...