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Question On Enterolab


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13 replies to this topic

#1 ashase

 
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Posted 14 July 2004 - 05:58 PM

Hello:

I am new to the board and considering enterolab--I am curious, is there anyone out there that has tested negative through this lab?I am in what feels like he**. Constant pain under my rib cage right side, joint pain, severe pain if I slip and have gluten. I am extremely fearful of having to go back on gluten to be tested. The fatigue is pretty bad...but thank God for finding out about celiac--when I am gluten free I feel great --even normal :) It is so difficult to remain gluten free--there are so many foods with hdden gluten.
Anyone with similar pain on right side I'd love to hear from you--this is all so confusing!

Thank you,
Jessica
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#2 gf4life

 
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Posted 14 July 2004 - 08:15 PM

Hi Jessica,

Welcome to the board. :)

You might not find anyone on this board who has tested negative to the Enterolab tests, since if they are negative they wouldn't need a celiac support group. ;) But I have seen a few people who had relatives who tested negative. Can't remember any by name, but maybe they will see this and post. Enterolab tends to have a higher rate of positives, since the people who are ordering the tests tend to be quite symptomatic, and are most likely gluten intolerant. I hope you are able to find an answer to your problems and feel better! At least you seem to know that gluten is causing it, so that is a step in the right direction.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#3 ashase

 
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Posted 15 July 2004 - 12:28 AM

Hi:
Thank you for your reply. I tend to be on the analytical side when it come to ...well just about everything :) Job hazard I suppose -I am a 3rd yr law student. Last semestedr was so difficult. I spent almost 3 months in bed from the fatigue and the pain. I was DX with fibromyalgia and basically sent out the door with the advice that I go see a Psych., take ambien to sleep, exercise more and be prepared to live that way the rest of my life. THEN I found out my Great Uncle is a celiac and started to read about it--I tried gluten-free and after just a few days saw such an improvement--I am so happy because I was truly at my wits end with school , two kids, a foster child and a husband that lived 3 hours away! Since then my Mother moved in with us, my husband transferred down here and things are much better. My Mom is such a blessing--she makes gluten-free bread, dinners...everything!

For me the hardest part is now -I accidentally slipped--I ate what I thought were corn tortillas and found out they were flour burritos--I feel like it has set me back 2 months! Fatigue, side pain so bad that I limp, gastro issues--its all back. trying to hide it from my 7 yr old has been tough--he was so scared when I first became sick...and reads every label before I dare put anything in my mouth--I dont want him to know I am sick again--he gets so scared. I literally felt like I was dieing back when I first got sick--in fact I was convinced of it.

I go to a specialist here in Maine at the end of the month and am scared he will want me to do the gluten challenge--I wont do it--I cant.

Does anyone else have this pain in their side? At first they thought it was my GB and removed it..they said there was "sludge" in it but the pain never went away--sometimes it goes into a remission other times it is there full force. I am sure it is linked to what I eat (hidden gluten). The evacuation of mucous has finally stopped too. Then I ended up with Shingles! The doc said it was becasue I have a compromised autoimmune ssytem...Does this ever end? I thought once I was gluten-free it would all end....do I have to stick to rice and veggies to be certain I am gluten-free?

Sorry for venting I am just feeling sorry for myself at the moment and I figured that you all would understand :)
Jessica
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#4 gf4life

 
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Posted 15 July 2004 - 09:58 AM

Don't worry about venting, we all need to periodically.

I'm sorry to hear you are going through a rough time. I was feeling great for a while, and then we had a bunch of out of town trips and it seems like I am always getting sick. Everytime I get into some gluten accidently it puts me down for a week or more! The fatigue is what really does me in. The GI problems go away after a few days, but the fatigue lasts for weeks, and usually I end up contaminated again, so it never quite ends.

My oldest boy has been having serious attitude problems again, which is his worst symptom. He doesn't get the GI problems from gluten (but he does from dairy), the gluten just makes him an absolute horrible child to live with. And I try hard to remember that it is his diet, since I don't want to be punishing him all the time for something he has no control over. Yesterday I had to though, since he was throwing things, throwing fits over what would seem like nothing and slamming doors. He is nine and was acting like a 4 year old! I had a feeling we all got contaminated on Tuesday, now I know for sure.

Today they are at Vacation Bible School, and when I got there and checked in the kitchen to make sure they remembered about the kids not being able to have gluten or dairy, I noticed the huge pot of spaghetti noodles boiling on the stove. This worried me a little. It ends up one of the gamed has to do with grabbing handfuls of pasta and passing it to the others in your team. So I pulled my kids aside and told then about the game, and that it might not be a good idea to play it, but if they decide to play it, then they better make sure they wash their hands really good before eating their snack. My oldest wanted to play, my middle("I don't even want to touch wheat") and youngest said they didn't. I am a bit concerned about the oldest, given that he is already having problems.

It is interesting about the shingles. I was under the impressing that not very many young people get shingles, yet both my boys have had it. My 9 year old had it right after starting the gluten-free diet. My middle boy had it mild when he was 2 & 3. I don't know if it is related or not, but it makes sense about the immune system. I mean, our bodies can only do so much at once, and something is going to have to give when it is overworked.

I'm just curious, but have you had your children tested yet? Or are you still trying to get your own diagnosis pinned down? I was glad to have my children tested, since they all ended up needing the diet and now they have a better chance of living a healthy life. Now if only I could get my husband tested...

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#5 judy04

 
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Posted 15 July 2004 - 05:28 PM

Hi,

Just read your story and thought i would respond.
I too get pain in my right side and I just got over
shingles, my dermatologist diagnosed Shingles
ordered Valtrex, told me to take right when the pain
starts, so it won't get so painful. It's funny that i never
associated that with Celiac, I will get his opinion
when and if I have to see him again I have had
many outbreaks over my years of being a nurse the
doctors thought I picked it up from a patient.

Regarding the right sided pain, sometimes I
can go a week or more without it and then I
will accidentally eat something with gluten or dairy
and it rears its ugly head again. i got it again
today after eating hot dogs and french fries,
both gluten free. I never wake up with the pain,
but the next few days we plan to eat mashed potatoes,
turkey and salads to try and get rid of it.
My gi doc thinks it is gallbladder related. all of
my tests show that my gb is functioning and
i have no stones. he doesn't want to do the ECRP
because it can cause pancreatitis and he told
me that a 30 year old woman just died from
pancreatitis. he told me to try to control my
diet and stay away from fatty food. i am doing
much better than last year at this time.

one more thing, ambien is not gluten free,
as it contains wheat starch, i had a bad reaction
to it, mostly tacycardia. you might have hidden
sources of gluten. sometimes you have to
check and recheck. hope this helps...
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judy


gluten-free since 11/03, neg biopsy, IGA elevated

#6 Niteyx13

 
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Posted 15 July 2004 - 07:06 PM

I had shingles at about 14 or 15 years old; I don't know if that would be concidered young to have them, or not? I also have side pain, but it is on my left side, and it gets really bad sometimes when I lay on that side. In fact, most of the time I cannot lay on that side. Weird stuff.


Deanna
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#7 ashase

 
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Posted 16 July 2004 - 05:00 AM

Wow...Ambien is not gluten-free...I naively thought my dr. would know not to dx it if it had wheat....what about Hydrocodone...I take that for the pain sometimes and I swear it makes it worse the next day. The first few hours are bliss b/c the pain goes away then bang the pain hits in the AM. I also take Hyoscyamine sublingually when the pain gets really bad--that seems to work after 2 or so pills.

I have not have my kids tested yet...although I am sure I should. I would hate to think they have it. They really dont show overt signs...but then again neither did I until I was 36!

Eating out is such a nightmare--I think I will just stop altogether...I have lost so much weight and would be losing a lot more if it wasnt for Ben and Jerrys ice cream which I eat every other day or so! I am 5'4" and at a bout 117 right now...which isnt really bad except the weird thing is it is all in my love handles...very disproportionate.

Here's something realy wild...I was using Stri-Vectin on my face and it is completely laden with wheat products! Of course I ddint notice it my Step Mom did...I am still not very good at this.

well, anyway today my stomach hurts (side), wrists, and kness...I hope it gets better!
Thank you everyone for helping--you have no idea how wonderful it is to have people to talk to that understand...well actually--you probably do !
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#8 judy04

 
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Posted 16 July 2004 - 07:51 PM

Hi,

Just wanted you to know that hycodone is generic and
is gluten free.
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judy


gluten-free since 11/03, neg biopsy, IGA elevated

#9 billfl

 
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Posted 17 July 2004 - 05:06 AM

Re gluten in medications, I have to take hydrocodone due to pain caused by bone spurs in my neck, and pain/breathing problems associated with pulmonary fibrosis. I don't have any celiac problem with the "Mallinckro" brand. I do have to be careful when ordering medication for high blood pressure. The "Mylan", and "Eon Labs" brands of Enalapril are gluten free, and according to pharmacist, others are not. Unfortunately, the manufacturers can change the composition w/o notification.
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#10 mcalister14

 
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Posted 17 July 2004 - 07:12 AM

I am also curious about Jessica's original question. Does someone have to go back on gluten to have the enterolab test?
thanks!
Stacy
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IgG- 120(severe+)
IgA- 18(normal)
Positive biopsy

Diagnosed July 2004

#11 strack2004

 
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Posted 17 July 2004 - 07:32 AM

Dear Ashase, I have also had my gall bladder removed without any relief of the right sided burning pain starting under my right center ribcage, goes up my esophagus and spreads across my upper abdomen sometimes.
My gallbladder also had sludge with no stones. A person with similar problems has had a procedure to widen the duct carrying the bile into the small intestine. She has had to have this procedure done three times at shorter intervals each time. I guess I think it would be better to try to find out what is making the bile so thick.
There used to be a sharp pain at the starting point, but I haven't had that in the last few weeks. I also would wake in the night with a strange ache going up one arm, and the other arm and across my chest. I went to the emergency room, was given a "cocktail" to soothe acid reflux which helped for an hour or so only. Have had the standard tests for heart trouble, all negative. I also have many "arthritic type" aches and pains, not unusual since I am 76, however I have had these off and on since my thirties. Right now my right heel and ankle are in very bad shape.
I am also considering getting tested through Enterolab for Celiac. I have already had the blood tests which were evaluated at Mayo Clinic in Rochester, Mn.
All were negative and very low negative. I am on a waiting list there to go and have the biopsy done, but am hesitant about that. And my hesitation is reinforced by Judy04's message about ERCP and possible pancreatitis. I think that is the one where they examine your upper GI tract. I had that done last Feb. Actually I have had it done 2-3 times before that. I am still eating gluten since I haven't finally ruled out finishing the testing.
I have found a site that deals with something called the SCD diet aat http://www.breakingthrough the vicious cycle.info/ or http://www.scdiet.org/. This diet is considerably stricter than others I have found, at least for the first 3 to 6 months. I am considering just startin on that without doing any more testing.
Back to Enterolabs. I have looked up their information. For a person of my financial means, they are quite expensive. Does one really need to have any more of their tests than the last one listed that is apparently the stool sample test alone? I already know that I am lactose and galactose intolerant, Any input on this aspect from anyone out there would be helpful. My doctor is okay with my doing the SCD diet route.
Back to your message, Asashe, you mentioned eating ice cream. Have you considered that you may also be lactose intolerant? Thanks for sharing your
situation. I, too, am grateful for a place to vent. Cheers, strack2004
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#12 judy04

 
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Posted 17 July 2004 - 05:42 PM

HI Strack,

I just wanted to let you know that an Endoscopy is not
the same procedure as the ECRP. The ECRP is much more
involved than the simple Endoscopy. Have you ever been
diagnosed for acid reflux, are you taking medication for it?
I was diagnosed with Barrett's Ring in the Esophagus and I
must be scoped every year because it can become
cancerous. I think, in my humble opinion, that eating wheat
all these years caused a lot of my reflux problems. It seems
that a lot of Celiacs also have a problem with GERD or
acid reflux.
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judy


gluten-free since 11/03, neg biopsy, IGA elevated

#13 gf4life

 
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Posted 18 July 2004 - 02:37 PM

You do NOT need to go back on gluten before having hte Enterolab tests done.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#14 strack2004

 
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Posted 19 July 2004 - 03:54 PM

Dear Judi, Before I had my gallbladder out in February, I had an exam of my upper digestive tract including esophagus,stomach, duodenum. The doctor said I had Nerd instead of Gerd because there was only a little irritation present. He also said he had done several biopsies, but didn't specify results except that there were no tumors or ulcers found. Unfortunately, I had not run into the celiac stuff before this or I would have asked to be tested for celiac at that time. Nerd is when there is not enough damage found on the exam to be considered Gerd. I had been on the gamut of antiacids in the months before this exam, I think it was the ERCP, but will check when I get home. The burning pain I had before gallbladder surgery continues unabated . I wonder if the slight irritation was because I had been on antiacids. The doctor said I could continue to take them if I wanted , but wouldn't have to. I wonder if the same diagnosis would be made if this were done again right now. ( something down there is burning fiercely from under my right rib cage over to my right hipbone.). Thanks for your input. Ruth
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