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Sheesh, Why Am I Still Having Problems?


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40 replies to this topic

#1 HappyCat22

 
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Posted 21 August 2004 - 09:28 AM

I've been gluten-free for about 3 months now, and I'm still not feeling much better! I feel like my energy level is at 0 most the time! I'm still having stomach problems, menstrual problems, sleeping problems, etc. Could there possibly be something I'm missing that's still getting to me?
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#2 Canadian Karen

 
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Posted 21 August 2004 - 09:39 AM

Have you checked EVERYTHING???? I thought I did, but after some serious sleuthing, I discovered several things that were still contaminating me....

1) I was using the family toaster, not my own, therefore wheat crumbs were
getting onto my gluten-free bread....
2) I was drinking Clamato Juice (I loved Bloody Caesars, a Canadian drink), and
I found out Clamato Juice contained gluten.
3) I was eating Gax-X like candy for the gas and bloating - after investigating,
I found out Gax-X has gluten in it!
4) The soy and terriyaki sauce I was using was not gluten free....
5) The hand cream I was using was not gluten free.....
6) After a serious reaction to the Lomotil that my GI dr prescribed for my
diarrhea, I found out this also contained gluten!!! (Don't trust that you GI
will know what is gluten-free and what is not....)

Have you checked all your medications? All your vitamins? All your supplements?
There are so many ways it can still slip into our systems......

Hope you find it!
Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#3 celiac3270

 
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Posted 21 August 2004 - 10:01 AM

You might be doing something wrong like Karen suggested..........or you might be doing absolutely everything right. I have called every company for everything and I'm still having problems after over six months. I know that toothpastes are gluten-free, I don't use lotions, I called about Prilosec, I'm doing everything right. I have no other food allergies, doubt any intolerances. There's a possibility that you're doing nothing wrong at all, but you have some other problem in your body that the diet won't correct or it's just gonna take you five months or seven months for whatever reason. Make sure you're doing everything properly and then it's up to the doc. to figure out what's wrong with you.

-celiac3270
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#4 HappyCat22

 
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Posted 21 August 2004 - 10:10 AM

I am taking vitamins that I haven't checked, but every other single thing I've checked and am doing right! I even wash my hands after feeding my pets because their food contains gluten. Thanks for your replies!
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#5 celiac3270

 
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Posted 21 August 2004 - 10:15 AM

Just stick with it, HappyCat, I'm doing the same thing and I've still got problems and Stacie (jhmom) has had symptoms over a year, I think. When I started, I thought it would be a quick three months, but apparently not. You just need to work with your doctor, run lots of tests, make sure you're doing everything right, experiment with cutting out certain things, and be patient. Good luck.
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#6 HappyCat22

 
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Posted 21 August 2004 - 10:23 AM

Thank you, celiac3270! I'm going to go check my vitamins right now, too.
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#7 Guest_gillian502_*

 
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Posted 21 August 2004 - 11:50 PM

For those of you still having problems after having been gluten-free for a long time, I'm wondering, are your antibodies still raised also? I've been gluten-free for a whole year now, and not only am I still having abnormal bowel movements and stomach pains, but the antibodies are still there as of a couple months ago. Like you, I'm checking every product, doing everything right, and have no allergies, as well as eating almost no dairy. I don't know what's left to do. I also have colitis, but it is not a severe case and my dr. doubts that is the culprit. I'm curious if I'm the only one who can't seem to get a grip on all this and heal already!
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#8 Canadian Karen

 
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Posted 22 August 2004 - 05:35 AM

When I went to the dr. this week, I found out my antibodies are still sky high (over 100) despite being gluten-free for 1 1/2 years (with some inadvertent slips....) They are going to be doing a colonoscopy of find out if it is collagenous colitis..... that's what he suspects it is..... he said my thyroid could also be throwing things out of whack...

Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#9 Guest_gillian502_*

 
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Posted 22 August 2004 - 01:26 PM

Wow, sorry to hear that, Karen. Don't sweat the colonoscopy, it was a breeze. My dr. said I have an unspecified type of colitis, but it is most likely Lymphocytic Colitis (aka Microscopic Colitis) but that doesn't explain why I also still have high antibodies. Like you I have had some very minor slip-ups with the diet but the antibodies should be gone by now. It's such a struggle.
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#10 Canadian Karen

 
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Posted 22 August 2004 - 02:46 PM

Thanks, I sure am not looking forward to it!!!! I hope they give me that medication everyone is talking about that makes you forget the whole thing!!!

I just want them to find the reason why my antibodies aren't going down either. I am just praying every night that they don't say to me that it is refractory..... that's not good.......

I think I would just jump up and down for joy if I ever had a normal bowel movement..... I haven't had anything but diarrhea for years now....

The funny thing is, although I have a difficult time of it, I can maintain my weight.. And even during my pregnancies (I have four children, 10 yr daughter, 5 yr old daughter, and 3 yr twin boys), I had no problems gaining weight for the pregnancies..... and I wasn't on the gluten-free diet for the pregnancies either.... The professor I went to see at St. Mike's who specializes in Celiac, said that God is kind to pregnant celiacs!!!!!

Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#11 Guest_gillian502_*

 
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Posted 24 August 2004 - 12:02 PM

LOL...you sound just like me. I would also be overjoyed if I ever had a normal bowel movement! I've had nothing but abnormal, soft stool for years now, too, and the diet hasn't changed that. Did your dr. say if having colitis would explain the reason why the antibodies aren't coming down? I was thinking colitis and the celiac antibodies are 2 unrelated events, but I guess one could explain the other, I'm not sure. I was also very worried about refractory sprue, and still am, although I'm told it is very rare and unlikely. I feel like there must be something with gluten that I am eating and don't realize it, and that's the reason for the antibodies. But I have been so diligent with this diet, despite not seeing much improvement (with the exception of gaining my weight back.) Hopefully we'll both have an answer to these continuing problems in the near future.
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#12 Canadian Karen

 
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Posted 24 August 2004 - 03:58 PM

Hi Gillian502:

Sounds like you and I are in the same boat!!

The dr. did mention that collagenous colitis (which is the same thing as microscopic colitis), could be the cause of the constant diarrhea. If the biopsies taken show the collagenous colitis, he said the first treatment would be very high doses of bismuth (8 tablets a day for 8 weeks) and sometimes that clears up the colitis. He said if that doesn't work, then the next step would be to consider prednisone. I hope it doesn't get that far.... I just found out today that my colonoscopy is on Sept 28/04...... so another month to wait.... Oh well, I have had diarrhea for so many years, another month won't matter much....

I have tried absolutely EVERYTHING to "bind" myself... NOTHING WORKS!! Not Immodium, calcium (without magnesium), psyllium seed husk, Pro Diem, Iron, Codeine, etc. etc. etc........ I can take psyllium seed husk by the cupful and still have nothing but water for a bm the next day.....

I have a very positive feeling about this dr. though..... he spent over an hour with me discussing possibilites, complications, treatments, etc. etc. He was extremely knowledgeable about celiac (he is the professor dr. all the other GI's use for consultation)..... he really knows his stuff, he specialized specifically in celiac and I have faith that he will find out why my body won't respond to the gluten-free diet....

Just out of curiosity, how old are you? Do you remember when you first had your celiac symptoms? I had anemia since I was a child, but not really any other gastric symptoms until my early 20's when I went to Jamaica for vacation and got food poisoning.... from that point on, it has been nothing but hell - I guess that is my "event" that triggered the celiac..... I am now 41 years old....

Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#13 celiacfreeman

 
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Posted 26 August 2004 - 07:43 AM

natural flavor equal rye in most juice, for sure the Ocean spray ruby red grapefuit juice, don't forget stamp and envelopes
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#14 YankeeDB

 
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Posted 26 August 2004 - 01:27 PM

Other food intolerances can make one tired. I do best if I avoid milk/dairy, yeast (including vinegar, sigh), eggs, and soy. The York labs test confirmed this and also showed I react to pears, sunflower seeds, and cashews which are not things I usually eat so I never noticed.
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#15 lovegrov

 
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Posted 27 August 2004 - 05:45 AM

A frequent cause of continued problems is bacterial overgrowth. I know some on this thread are aware of this and have tried it, but for those who haven't, get a probiotic like Culturelle and take it. It might be that simple.

richard
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