bear6954

Yahoo groups has a support group for EE - eosinophilgastro is the name of the group. Kids range from severe to mild symptoms. Some drs do meds first others do elimination diet.

My son also has hypoglycemia. His morning fasting blood sugar was 41 and 46. I started two thing for him and it has really helped. My son is 3, but we started him on a amino acid/elemental formula that is easy to digest and full of vits, fats, carbs, and minerals. I also wake him at 2 am and feed him something small. He normally eats about 5 bites of gluten free pancake with maple syrup and a dab of smart balance. When he wakes at 8am or so his blood sugars are normally in the 70's.

His 2 am reading were in the low 80's.

Now he wakes and is not so clingy and his stomach is not upset.

Maybe they have a drink that will help you absorb your vits better also.

My sons celiac panel blood test was negative, but his liver emzymes were through the roof. We got a referral to a ped GI dr and just by looking at rays body and what was happening he dx him with celiacs. We still did dna - positive and positive biopsy. Once we went gluten free almost all of the pooping and rashes went away. Now, if my son eats too much sugar or fat he gets acidic poop. It still happens with dairy also. We really limit dairy and only allow my son to have about 8 oz of koolaid a day. I also started him on a probiotic called Rhino Powder POS & Acidophilus. He has been on it for about 3 weeks or so. But in that time, his bloating has gone down and he can eat more fat and more sugar before the poop burns his bottom. I kept a very (still do) detailed list of what he eats, when, amount, when he poops and what it looks like. I also write down if acid reflux is bothering him and what and how much he drinks. It helped me figure out tha to much dairy, fat or sugar still bothers his body! I hope this helps.

Hi everyone,Im Lynne,42,stay at home, homeschooling mom of 6 kids all of us with crs eliac. Ive been 100%gluten-free for 6 yrs increased and am still so sick. Now Ive got crohns,mic.colitis,ileitis,gastritis,endometriosis,steroid induced diabetes,and a few other autoimmune diseases,enlarged liver,spleen,pancreas too. Im going to see another specialist,Ive got Refractory sprue, mosaic patterns, villi are growing back, damage is in jejunal area, increased intraepithelial lymphocytes and Im extremely anemic. level was supposed to be over l00 and mine is l6, everything is dangerously low except platelets which are too high. Does any of this sound familiar to anyone here at all? Im afraid this is turning to intestinal lymphoma and want to know what to ask the next specialist. Ive been told he can get into the jejunal area which most doctors have not been able to do properly. I just want to get better and take care of my kids better than just surviving another day, I want to have fun with them again and not be in the bathroom all day long!

I just got home from the hospital after a week. I went in the 4th. My stomach

pain got severe and the bleeding didnt stop either, it had been a month. As soon

as I got there I

threw up what looked like coffee grounds then, this is really gross, stool,

green mucosy, I had d. so bad and there was no doubt. I even showed the nurse

but she really thought it was d. that I did not throw that up. I did see the

ob the 3rd and after an exam said she would do a cauterization and see how that

went for 2 months before resorting to a hysterectomy. It was the right side of

my stomach that hurt so badly. My gp thought it could be kidney stones because

for about 8 months I keep showing trace of blood in the urine, he sent me for a

ct scan. I had another one in the hospital and that showed a large ovarian cyst

and lots of inflammation in the uterus. On Wed. I had 2 surgeries at once, the

cauterization, d&c, and endometrial ablation, hysteroscopy. I stopped bleeding

finally. If this doesnt work I need to have a complete hysterectomy. Somehow I

think the bleeding and diarrhea are connected, I also show

blood in the stool too. What would make one vomit stool?? It only happened once

but it was enough to let me know something definately isnt right. My stomach

isnt emptying properly but I need a name for

it so Ican figure out what to ask the gastro on Mon. morning. Im super low in

lots

of things, especially potassium and magnesium, which explains the charlie horses

and chest pain. I would get virtigo a lot in the hospital, I dont now that Im

running all over and after my gang though, no time I guess! It doesnt fit in the

schedule. My levels kept dropping down to an 8.2, they didnt check it Friday,

if it went to an 8 I had to have a blood transfusion, I did get iron

transfusions and B12 while in the hospital and I will be seeing a hematologist

also and it looks like that

will be a long term thing because of the complications.! The poor

kitchen staff, they had to refrain from latex also. They were really good to me

and I had my own room. Coming home to my husband who had the flu and one of my

6 kids, meant I had to make up for not being here for a week, so needless to

say, I am extemely sore and worn out now. I see the gastro and gp on Mon. Ive

got to find out about remicade and possibly getting ahome health aid to come in

since Im the caregiver for my kids with special needs too. We've all been gluten

free for almost 7 years now, I follow a really strict diet and have lots of food

allergies in addition so Iam meticulous about ingredients. It seems rice cakes

are the worst, within 30 seconds it goes right through me. It doesnt make sense.

I drink lots of water and eat very healthy. I had 2 t.i.a's last year from the

diabetes being so out of whack which is caused from the steroids.

My gastro is really good and goes to Europe for conferences regarding celiac &

crohns and Ive been to the Mayo & Shands and many drs inbetween. He doesnt

think I have Gastroparesis because my stomach empties too fast, within 30

seconds of eating a rice cake while in the hospital. Im really allergic to eggs

so I dont know what they would substitute with the test. Im also allergic to

iodine and super allergic to melon and latex too, even peas give me hives. He

thinks there could be an ulcer or something else going on but wants to do an

upper endoscopy and consult with another celiac specialist from Shands. He says

the crohns is secondary and is mild to moderate but the damage I have is in the

jejunum area from not knowing I have celiac til 6 years ago. Ive been 100%

gluten free since. Im wondering if I could have Pernicious Anemia since Im so

anemic and low in B12 also, I got a shot in the hospital and also iron by iv and

constant ivs for potassium, magnesium. It really scares me to have to see the

hematologist and get blood transfusions and more iv's on a regular basis. I

started bleeding again though and I know its from running around and cleaning up

after all my kids. I think somehow the two are related. I havent thrown up

anymore black or green stuff so that is a good thing but I still have a lot of

diarrhea and stomach pain. My sugars are staying under 200 and Im not taking the

insulin anymore since I kept crashing to 30. If you have any suggestions please

send them this way. Thanks everyone. Lynne

If anyone has any

suggestions, please send them this way.I know this is complicated and long, but

Im really hoping someone has some suggestions and can relate.

Thank you for helping me. Lynne momof6incfl@yahoo.com

When you can find time google glycogen storage diseases - its a metabolic disorder.

Could it be acid reflux? My sonw as gluten-free for 1 yr and started to throw up again. Not huge amounts, but at weird times - like play group. It never really bothered him. He would also throw up at night. He first went on mylanta and then we switched to prevacid. I still watch him when he drinks or eats a lot at one time. But so far, on the prevacic (knock on wood) we have not had any issues.

My son was completely negative on all celiac panel tests also. However, he had the classic gi symptoms. He was positive for DNA and positive biopsy. My son only gre 1 1/2" between one and two. Once he went gluten free, he started to grow and teeth again with a month or shortly after. I began to measure my son every month so I could keep track of his growth.

My son was tested for this a few months ago. At dinner, he would vomit his entire stomach that contained food from breakfast. His test showed boarder line slow emptying and boarder line acid reflux. My son only ate one egg and 1 oz of water. I knew he had acid reflux even if the test did not verify it. We put him on prevacid and I have not had a problem with him since.

My 3 year old son went for his 1 yr gluten free check up. At that appt, his liver was 13 cm - confirmed by ultrasound. His enzymes were 790 and 1420 (not sure which was alt/ast). We had a live biopsy done on April 3rd - biopsy shows scarring of liver not as a result of celiac disease or hepatitis. They think he has glycogen storage disease and we are going to Duke for an open liver biopsy.

Has anyone - adult or child - had this issue due to celiacs disease.

Also, my sons stomach is flat in the morning, but continues to grow and bloat during the day. Tonight his stomach just looked painful. He does very limited dairy (cheese slices or yogurt only and not every day) and limited soy. I do cook with Pamelas Mix and I use Soy milk. However today he did not have those. My son had whole grain rice pasta with gluten free chicken stock (about 1/4 cup); 8 oz bag of cool ranch doritos (snack); 1 1/2 ians chicken nugget for lunch; 8 oz bag of cool ranch doritos for snack; 1 pamelas pancake with syrup for dinner. He also had 5 Lays Pot chips with 1 slice of american cheese. My son drinks koolaide mixed with EO 28 splash or Neonate Jr. He was drinking crystal light but I though that the sweetner could becausing is bloating, but he has not had it for 3 days. My sons stomach measurement this morning was 21 1/2" and this evening is was 24 1/2".

Any ideas on the liver damage or bloating?

We dont eat pp and j here, but for the butter - I do most of the cooking and if I need to use the butter for gluten stuff, I take a big chunk out of the container and put on the plate. I do not double dip.

My sons gi dr told me that his liver was not functioning correctly (hense the increase liver emzymes) because he is malnurished because of the damage to his intestines. Yes, it is going down. But please understand - there are two blood tests they did for my son (I dont remember the names, something like ALT and AST) and normal range is somewhere between 0-30 and 0-50 for both. My sons were 790 and 1430. They got much better for a time and then started to go back up. Thats why I think he is getting cc. I must be doing something right because his liver has shrunk almost to normal size in the last month, but I am trying to figure out where it is coming from. As his intestines heal and he begins to absorb vits again, his liver emzymes will come down. So the faster his intestines heal the faster his liver heals.

As for the plastic stuff. I still use tupperware things, but as soon as they get scratched etc they go into the garbage. I threw away all of my kids bowl, because I knew gluten had been in those things more than once and they were scratched. When the plastic or wood is scratched, it can hold small pieces of gluten because of how hard it is to clean it. My kids are 3 and 5 so they can start using or normal dishes.

He will also eat Ians chicken nuggets and french toast sticks.

My son is still having issues of cc. I know he is not eating any. We are pretty careful - trader joe organic brown ric noodles, verified chicken stock is gluten-free, pamelas products, oscar mayer hot dogs, gluten free pantry bread, smart balance, Kirkland brand organic soy milk, gerber rice cereal, and enjoy life cookies. My son is not having the issues of bowel problems, but his liver emzymes are still very high leading me to believe he is getting gluten somewhere in my house.

We did get a toaster just for my son and I. If cast iron is seasoned properly it should not contain residue of gluten should it? I do scrub them with soap and water. I kept a few non stick pans for my daughters normal mac and cheese. I do use the cast iron pot to boil her noodles sometimes. I threw away, a long time ago, any gluten flour. I only bake gluten free foods now and no one has complained. I am just wondering - if my daughter eats wheat thins and then goes and plays with toys is she cc everything? Boy that would be a night mare to clean. My kids have friends over and I know they eat gluten!

My daughter only eats her snacks oat the kitchen table in her spot. My son sits across from her.

I will seperate the scrubbing sponges today - that may be part of it. The kids soaps, creams are gluten-free.

He is rather sensitive - playdoh gives him the normal bowel and bloating symptoms. And boy is he mean. And no he does not eat the playdoh and i clean and scrub the area and him after. We make our own now.

I am mostly afraid that he is getting cc by people not washing their hands and I am wondering what I am going to do for him in preschool next year. They wash before, but not after eating. We wash our hands before we eat at home.

Thanks for all the help!

Ok - I have thrown away all plastic plate, bowls, colenders etc. We use china, glass, metal or cast iron now. I clean the table, counter and anything else with soap and water. Is there anything else I should be doing to prevent cc in our house. I do not bake with gluten products, but my hubby and daughter eat gluten foods. Thanks for the help!

esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.

Yes it is an auto immune disease that attacks the small intestine causing damage and inflammation.

My son was 2 when he went gluten free. Prior to that, his main foods were ravioli and spago's. He also liked cheese its, wheat thins, fruit loops etc. For several months, I could not walk down those isles without crying. People prob thought I was weird. But I guess I was sad because my son could not eat the foods he loved. However, now, I dont feel that way. I know the foods he loved were pioson to him and causing him to be sick. My son had classic celiac symptoms and they were severe. I do get upset because many of the gluten free alternatives are not very good tasting or there are no alternatives. I still hate the cookie and cereal isle.

Another thing that has helped me is knowing that other people have allergies also. Many people can not eat dairy, eggs etc. We live in a very small town, so there are no supports groups here. Its hard to deal with it on your own, but I recently read a poem that really helped my put things into perspective. Its out of the a book called The Gluten Free Bible by Jax peters Lowell (I would not recommend buying the book - very out of date). However, this poem is great.

Monday's child is gluten free

Tuesday's child get hives from tea

Wednesday's child can't bear cat hair

Thursday's child must gasp for air

Friday's child will wheeze and sneeze

Saturday's child is eggless, please

but the child born on the Sabbath Day,

fair and wise loves to say,

Thank you, God, that I'm this way.

The poem made me remember that there are many other allergies out there and families that deal with food allergies. I still have my sad days - even 1 yr later, but I work through them. I remember that my son is growing, is getting healthier and feels so much better. He is beginning to understand that he can not eat like other people, but his real friends know that he has to eat different and do not treat him any different. They even make sure they have food at there house that he can eat!

I hope this helps you.

Lisa

When my son was that age, he would have mucas in his poop a lot. His poop was also acidic and burn his bottom. He had constant diaper rash. As he got older and ate more gluten, his symptoms got worse. I was looking at pictures of my son when he was about that age and my son was real chubby. However, his stomach was very large at that time. My son also pooped a lot - abouy 5-9 times a day. It seems that each person reacts differently to gluten. So what might be symptoms in my son are completely different in another person. Does celiac run in your family?

Looks like my sons did before going gluten free!

I was very lucky. When my sons liver panel test came back extremely high, we were sent to a Ped Gi specialist the following week. He took one look at my son and told me he had celiacs and this was prior the the dna results. Our GI dr recommended the scope. I did not want to do it! However, I am very glad I did. Otherwise we might still be guessing. Are you seeing at Ped GI dr yet? Can you get a referral to see them?

Since my sons symptoms were so severe (only grew 1 1/2" between the ages of 1 and 2 and no weight gain), our GI dr recommended we go gluten light to help my sons symptoms. Our biopsy was 4 weeks away. I gave him gluten food a few times a week - like a couple of oreos or something. Even on gluten light, my sons bowels became less acidic and I do not remember him throwing up. I wanted to keep enough gluten in him to get a positive biopsy and it worked. My sons behavior also became sooooooooooo much better. Not clingy or grumpy- he was happy and playing like a normal child. Within a few weeks of going 100% gluten free, most of my sons symptoms were gone. He still has issues if he eats to much sugar, fruit, milk or fats. I let him have all of those, just in real moderation. He drinks crystal light instead of koolaide. If I know that we are going to have fast food for dinner, I limit the amout of fatty stuff he eats that day to help with the pooping. I only allow my son apple juice about once a week etc. I kept a food journal to figure out what was bothering him.

There is a lot of info on this web site about celiacs and symptoms for children. I orginally googled celiac disease and you get a ton of resources. There is also a book called CELIAC DISEASE: A Hidden Epidemic by Peter H.R. Green MD. It explains a lot about the disease and effects it has on kids and adults. It also gives resources for buying foods. Other sites: www.celiac.org ; www.scaceliacs.org ; www.celiackids.com ; www.celiac.ca ; www.gluten.net ; www.naspgn.org ; www.celiaccenter.org ; www.uchospitals.edu/specialties/celiac .

I took my son to the dr for 3 months for the vomiting before something was done. Now I wish I would have put my foot down and demanded help from specialists.

As for food, you can start a new thread and people here will give you lots of good advise! I prefer Foods by George pizza. Its expensive, but really good. I did cause and effect with my son. Shortly after he got diagnosed he grabbed my daughters pop tart and ate a few bites. I told him no and that that food gave him owies in his belly. Later that day, he had the typical gluten poop and I told him that this is what happens when he eats food with gluten. That was enough for him. We still have issues with crackers, because gluten-free crackers are just not the same! Whole Foods has some great cookies, muffins and cupcakes that are gluten free. Pamelas baking mix makes great muffins and pancakes and I use it for regular flour. Glutino pretzels are wonderful. He can also eat cool ranch doritos, lays pot chips and lots of junk food like fruit roll ups! Chex has a few new flavors of cereal out that are now gluten-free also. I make home made chex mix and it is a hit! Vans waffels are wonderful. Bell and Evans chicken nuggets are good.

If I can help in anyother way, let me know!

Lisa

My son had the same symptoms as yours when he was 2. His celiac panel was negative, positive for both DQ2 genes, and very positive biopsy. My son had the bloated belly, lots of mess bowel movements also. My son quit vomiting in the mornings after 1 week of being gluten free. My son would not vomit every day, but a few times a week. It did not seem to bother him - just kept playing. He is now 3 and on prevacid because acid reflux makes him also vomit - just much less comes up. I would continue to see drs until you get a good diagnosis. It could be that biopsy is the way to get the proper diagnosis.

At 23 months, my son was considered failure to thrive, short stature, and malnurished. My son had 6-9 messy smelly diapers a day, vomitied at least 5 times a week, really grumpy and had a huge belly. He has classic severe celiacs. All of his blood work came back negative. We opted for a biopsy and is was very positive. At his 1 yr celiac check up Ray had grown 5" and gained 1 lb. He was still not on the growth charts for his age and he had begun to lose weight (this was in Feb).

We are still fighting his malnurishement issue. We have him on an amino acid based formula that has 100% of the vits he needs in a day. He has been on it for 3 weeks and grew 1 1/2" and finally began to get his two year molars. I am not sure if it is the formula or just my sons body.

I was happy we got the biopsy. I wanted to know 100% what my son had. Prior to my son being diagnosed with Celiacs we had never heard of it. If your sons gi doctor wont help you try to switch to a different one. Good luck

My son is now 3. He was diagnosed with celiac via biopsy at age 2. At that time, I told his GI dr that I was still nursing him down to sleep. He told me that gluten does not pass into breastmilk. Fast forward 1 yr. We go in for my sons 1 yr gluten free check up. My son has been 100% gluten free for 1 yr. (This occurred in Feb). My sons liver was 13 cm long (as big as a full grown adult), lactose intolerant, too much sugar or fat gave him the bid D, he never got his 2 yr molars, grew 5 ", but only gained 1 pound, acid reflux - sitting up and throwing up in bed or throwing up when playing, still failure to thrive, short stature, and non fasting hypoglycemia. My sons gi dr was trying to tell me that my son has some rare genetic disease. I did lots of research on my sons symptoms. Basically, I figured my son was getting gluten threw my breastmilk and as a result his celiac symptoms were less severe than when he ate gluten (he has classic celiac symptoms when he eats it). I went gluten free about 3 weeks ago. I also started my son on Neocate Jr and started testing his blood sugars. Within 1 week of me being gluten-free and my son on the Neocate Jr, he began to get his 2 yr molars. He also grew 1 1/4" and gained 1 pound. My son is on Prevacid and it has done wonders for the acid reflux. I am a firm believer that gluten passes into breastmilk. His liver has gotten much smaller and he no longer has hypoglycemia. My sons GI dr now believes that gluten does pass into breastmilk.

I was also looking at pic of my son at 4 and 6 months. He was a chubby baby, but his belly was huge compared to kids his age. I also remember giving my son mixed infant cereal and noticing it gave him really messy poops. I just figured his belly was not ready for that and quit feeding it to him.

My son also had acid reflux since birth.

Now I look back and figure that my son had celiacs at birth. I nursed my son since day one and ate wheat. I am sure that my breastmilk made all of his symptoms worse and I wish I could turn back time and fix that for him.

My sons gi dr was able to tell us after the biopsy that he was positive. He was able to see it when he did the endoscopy. His gi dr still looked at it under the microscope and called up back to follow up in about 7 days.

My son was diagnosed at 2 yrs old. He also would throw up in his sleep - just sit up, throw up and go back to sleep. Just recently, he would be playing, throw up a little, and go on like nothing happened. My son has acid reflux and once the doctor put him on prevacid (about 3 weeks ago), no more juicy burps, throwing up in bed or throwing up when playing. Has you son been check for acid reflux? I tried to keep my son quite after he ate, but my son goes 90 miles an hours. It got embarressing when he would do it at playgroup. Hope that helps.

My sons blood tests were negative on two different occassions. He had a very positive biopsy. Blood work is not always accurate in small children.

Have you had a DNA test done or does celiacs run in your family?

Good luck! I hope every thing works out for you.

I am sorry to hear that things are more confusing than ever. I started to keep a log of my kids meals, drinks, poops, dates, times this occurred and what the poops looked like - etc to figure out what was going on. My son has issues with sugar and dairy. He can handle kraft singles, but yogurt give him diarrhea. Juices really bother him. He drinks crystal light and is gluten free. My daughter, who is neg for celiac, was having issues with real bad constipation and bad stomach cramps one day and diarrhea the next. I finally figured out that artifical sweetners cause her to have real bad stomach aches and diarrhea. I put her on koolaide instead of crystal light and she is all better! Sometimes we have to be our own detective to figure out what is going on. I hope this helps.