mbg98

My son's symptoms (celiac, EE, neither, both????) ...failure to thrive, really bad constipation for 1 1/2 years (only going every 3-5 days), with 2 bouts of diahrrea that lasted about 3 weeks each, hives every day since we introduced solids (these have subsided quite a bit since starting on zyrtec though), irritable, walked at 17 1/2 months (not sure if this has anything to do with any of this or if it was just normal for him), asthma/RAD (several ER visits, daily maintenance steroids, and an overnight hospitalization so far), many vomiting episodes, chronic sinus problems, bloody noses several times per week, pulling on his tongue saying "spicy" ???, lots of coughing, gagging, wheezing, and choking (he's 2 and I still cut everything up into really tiny pieces), too many eye infections to count (always happens during bad sinus problems), he's allergic to cats, dogs, milk, eggs, peanuts and tree nuts so far. WE are doing more testing on Monday, so will probably be addding more to this list. He seems to sleep a lot, too (11 hours at night and I wake him up at least half the time for naps at the 3-4 hour point. He does rub his ears and poke at them a lot, but doesn't get ear infections that often...maybe it's the itchey's like you mentioned???? Never really thought of it before. I did take him to the dr.'s plenty of times saying I thought he had an ear infection because he was playing with his ear so much. I'm probably forgetting something here, but when reading this, makes it looka lot worse than it seems. He does seem happy and healthy for the most part and does all normal 2 year old stuff.

Wow, you really have your hands full, it breaks your heart to see them uncomfortabe and the worst part is not having a quick fix like Motrin or something! Luckily we don't have that many issues but things are not getting better only worse, however to an outside person who meets my son he is perfectly normal noone notices anything, like yours he his a happy kid. Mine is just living with it doesn't really seem to faze him that much anymore, he will be talking to you and stop to take a hard swallow followed by a few more but then he moves on. My son also enjoys his sleep at 3 1/2 he even asks when its nap time or to go to bed early, he also complains that his legs hurt him alot usually once a day, not sure what that is about.

It sure sounds like the same thing and the dr. put my son on prevacid also. In my on-going reading about EE, I think I sw somewhere that it's allergy related and can be helped by taking these items out of the diet; however, environmental allergies can do it, too. What things was your child tested for? Don't feel terrible....it sounds like you did exactly what you thought you were supposed to do and I'm glad this thread is bringing it up again for you guys. Keep us posted on how things go on Monday. Good luck!

The Rast Test is a blood test that only test for the 7 major allergens however the GI told us that they are very inacurate and thats why the elimination diet will have to come into effect but then when the RAST test came back negative the elimination diet was not mentioned nor was the fact that she had already told us that you can't rely on the RAST test alone, she only said just do the prevacide and call in 2 weeks to see if it is working, which I took as a blow off. Hopefully the Allergist on monday will set something up for a skin test which I am going to hate putting him thru but if we can get rid of his indegestion/heartburn it will be worth it in the long run! What symtoms does your child have? Mine the main issue is the chronic(even on prevacid)heartburn/indegestion, rash around the mouth, when he cries he vomits, his throat is always "itchey" and when he eats he hits himself on the side of his head, or rubs his ear or sticks his fingers in his ear due to the "itcheys". And rarley do we have a week with no cough!

My 3 year old went thru a endoscopy for Celiac and I was told his stomach looked great no signs of celiac however his throat was extremly inflamed and the biopsy confirmed no signs of celiac but he has allergy cells in his esophogus and they said he has something esophagitis, they ran a RAST test which came back negative and said to keep him on prevacid twice daily and to call them in 2 weeks, i took this as them thinking I was crazy about his heartburn/indigestion issues so I didn't call back. But about 2 months ago my little man got a rash around his mouth that will not go away and we think is allergy related so my pediatrician sent us to an allergist which we go see on monday. Now however I am thinking the GI doc said my son has this Eosinophillic esophogitis and since I didn't write it down Im not sure. Now I feel bad for not following thru and calling them back in the 2 weeks I was supposed to, the prevacid is definatly not working and his indigestion is getting worse but I thought they were just saying to call them back just because thats what they tell everyone and was a way to get rid of these crazy parents. I now feel terrible so hopefully I can get to the bottom of it on Monday and find out what to do. See when the GI called and explained the biopsy result she explained about elimination diet and and how difficult it will be to find the trigger or triggers and then sent us for RAST testing when it came back negative and she said just to try the prevacid i felt like they were dropping us. Now I think this was to see if the easy fix would work and then we would get into the hard stuff of eliminations and such but I dropped the ball. I feel terrible! I will call the GI doc first thing Monday AM as well as his ped and see what to do, and hopefully the allergist appt on monday will go well.

Anyway, Thanks for this thread without it I would never have realized!

Not sure on whether it was fragrance free and such it was the "original"version though. I still can't believe that i may just have been that simple as to stop using that. I am loving feeling great again! And best news yet is that so far in my loosing weight quest I am down 48lbs. today!!! Unfortunatly probably 10 of those lbs were not from hard work just from the D.

I was using Oil of Olay and I didn't see any obvious gluten ingredients but I am still learning some things.

As far as the stool testing they were testing for blood, parasites and malabsorbtion.

So yesterday was my last day at work and my staff suprised me and had a Gluten Free cake specially made for me! They called the Cake place that i get my kids b-day cakes made and asked if they could do a gluten-free cake, and they were very familiar with the whole process. Aparently they just delivered a gluten-free wedding cake that morning. Anyway the cake was delicious! Chocolate double layer with buttercream icing! YUM!! They saisd they have a company in PA that processes only gluten-free things and thats were the mix comes from and they prepare them in a special area so not to have cross contamination, then they specially prepare their own gluten-free buttercreme icing. That was such a treat! Its nice to know there is a bakery close that can do that for me!

Also, I posted last week about having D issues for about a month, well i went to see this new Celiac doc in my area and he told me to start taking calcium 3 times a day and a 1 a day vitamin, which i have been doing and I also switched my facial moisurizer and low and behold no D for 3 1/2 days so far! So what do you think made that stop, the vitamins or new moisturizer? Thats a question i can't seem to answere. Funny thing is he sent me to have all the stool test done and when i went to the lab to pick up the stuff it turns out there are 11 vials of stool sample things I have to give, so now that my D has stopped to i still do them?

Arne't Ball park beef franks gluten-free as well?

Wow oil of olay products arent gluten-free, I have been using the "original" version and the ingredients were on the box that of course i threw out so I checked a box when I was in the store last night and nothing jumped out at me so I am off to check the web site! Thanks!!

Thanks everyone! I just read that some people take magnisum others b12 and some just everyday vitamins and since it was never brought up to me by my oh so helpful doc (ha) I wanted to see if it is something i should look into.

since going gluten free about 7 1/2 months ago I have not been taking any vitamins/supplements it was not something my doc even brought up. I am now reading on alot of these posts and articles about Celiac that there are vitamins/supplements that some people take that assist in the issues us celiacs have. I am going to a new Celiac doc on monday that has done a few write ups on Celiac in local papers and I wanted to discuss this with him but I wanted to see what types of things you all are taking and what they are for so I have a better idea as to what I am asking him about, if that makes any sense. Any input?

Thanks so much for the input, It seems now though I can eat apples or even grapes and get D. I am determined however to get this figured out because I can't keep going like this, I have to work tomorrow which means I can't eat and I will still probably get sick!

I have been gluten free now for about 7 1/2 months and was feeling great!! For about the past month now thought i am sick with D what used to be once or twice a week has now turned into everyday! I get up every morning and hit the gym hard, I used to eat before hand but would get D at the gym pretty reguarly so I have started not eating before hand only drinking water but I still seem to get issues and now they are practically everyday. I took my kids on a school field trip yesterday and didn't eat at all prior to leaving but still had to find a bathroom on the way up and also on the way back. I feel as if I can't eat anything when I need to go places because I don't know when it will hit me but now without eating I still get D all the time. Most of the time It is just mild stomach issues with bouts of D but sometimes I get terrible stomach cramps that come and go in waves with no other issues. Today was a wierd day as well I woke up with stomach cramps and have been in and out of the bathroom all day! I need help I can't take much more of this. I can't seem to find a common denominator between the days I get issues. Somedays I wear make-up some not, I drink water everday but that can't possibly be it! I wipe my face with Huggies baby wipes everday a couple times a day (strange I know!) but I re-checked those and they are gluten free. I use Oil of olay moisturiser and went to re-check that but no ingredients are on the bottle so I used something else today that i know is safe and still i am sick! I am going on Vacation the end of the month and am dreading this still going on. I finally found a Doc that deals with Celiac (my previouse said all he can do is diagnose the rest is up to me) and I am going to see him on Monday am, I some how though don't have to much hope for the doc's help! Can anyone offer there opinions? Anyone else go through this, it helps for me to be able to talk it through with someone that understands and knows about all this. please someone help!!!

Some of cliniques are!

I am a little suprised by your getting sick from a salon. I manage a Salon and am also a full time nail tech (who does the manicures and pedicures) I have NEVER gotten a reaction at work (other than food related) I can honestly say that I haven't even read the ingredient lables on my product since they don't absorb and I won't ingest them. I am constantly washing my hands and don't normally polish my nails but I am exposed to base coats, top coats and various polishes every hour. I don't have DH but I breathe this stuff in all day and have no problems! You may want to go somewhere they DON'T do artificial nails of any sort, that may be the problem for you, those particles float in the air and you could be breathing them in. I wouldn't be suprised if there is Wheat or Gluten in the Acrylic nail stuff used as a binder but I am not sure. Good Luck!

I certainly couldn't live without my Pedicures every few weeks!

I have the Clan Thompsons and love it! it is very convienient when I am on the go.

As soon as I read a previous thread on Cold stone bieng gluten-free I loaded up the family and off we went! White chocolate Ice cream with peanut butter and PB cups, YUM!!!! Of course i got some young guy waiting on me who I expected to have no clue but he offered and got a clean bowel, scoop and ingredients from the back. was a great experience. This was the one in Salisbury, MD

Try designer whey products, I emailed and they told me their products are gluten-free not sure on the other stuff you need but they have a web site to check out.

That is great to know we love willow valley! We usually plan a trip to Lancaster every fall, and we always stay at Willow Valley. I have been apprehensive to go this year due to our new diagnosis of celiac but now I am excited! Thanks for the heads up!!

No he is not gluten-free yet we are waiting on the biopsy results which should be in on thursday. They also took biopsies from his esophogus so hopefully we will know exactly what it is.

He is not on any meds at the moment, We thought the reflux was from the celiac so we were waiting to get the official diagnosis from Dr Fusano, and then he had to go for the endoscope. We were never considering it to be a seperate problem, thought it would go away when on the gluten-free diet. But of course it has taken 2 months to see Dr. fusano and then he couldn't go gluten-free until after the endoscope and now we are waiting until next week for the results.

Both my kids were reflux babies, I was always covered in spit-up! It got better as they got older but my youngest I have noticed always has the backwards burps and swallows really hard, I attributed it to the possibility of Celiac. I didn't consider it would be doing internal damage, or that now I have to consider there be another totally unrelated thing to treat.

So has anyone else seen or heard of esophogus damage?

Yes, "THE" Dr.fusano! He is great! Such a nice Dr., another doctor from the Celiac center a doctor Maliki (SP?) preforms the endoscope but dr. Fusano is the Doctor you see and speak with.

Key,

You may not have a pediatrician now but once you get one you are so close to the University of MD celiac research center, you should try and get refered to there. Dr Fusano has been great with my 2 kids and everything is at your fingertips there! good luck

My baby had his endoscopy yesterday at the request of Dr fusano and they told me he had a lot of esophogus inflammation that I was told was totally unrelated to his Celiac. we are awaiting the biopsy results. I thought reflux/backwards burps/idegestion were all side affects of celiac that could possible do this kind of damage, Am I crazy? I know for me personally thats how I immediatly tell if there is hidden gluten in something I am eating because it burns my throat and I start getting terrible indegestion. Has anyone else seen or heard of this type of damage? The strangest part is is that they are sure he has celiac due to his off the charts bloodwork but saw no visible damage in the small intestine/stomach (we are waiting for the biopsy) but saw all this visible damage in the esophogus, something we weren't looking for!