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bear6954

Member Since 07 Sep 2008
Offline Last Active Jul 12 2009 01:14 PM
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Posts I've Made

In Topic: Endoscopy Results Are In...positive For Eosinophilic Esophagitis

12 July 2009 - 01:18 PM

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.

In Topic: Hypoglycemia + Celiac Disease

02 June 2009 - 08:12 AM

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.

In Topic: Signs In Infants? Poo Question!

15 May 2009 - 08:12 PM

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.

In Topic: Refractory Sprue, Not Getting Better After 6 Yrs Of gluten-free....

03 May 2009 - 03:55 PM

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.

In Topic: Is This Site For Mothers With Children Who Have Celiac?

02 May 2009 - 04:38 PM

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.