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Firmly Gf With Continuing Symptoms


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#1 celiac3270

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Posted 16 August 2004 - 02:15 PM

I'm sure nearly everyone here has heard me complain about symptoms many times before:

Had symptoms including abdominal pains, vomiting, nausea, bloating, gas, loose stools, low weight, very loud stomach noises (gurgling and rumbling), etc. since first grade--I'm now going into eighth grade. I was diagnosed about 6 months ago with celiac disease. The diet has eliminated much of my gas, but I still have abdominal pains, still vomit, still am in the same weight percentile, and still get stomach noises and bloating when I get sick. My primary symptoms include vomiting and abdominal pains. I get them at least once a week, but usually more.

So, six months ago I cut out gluten. Helped a little with gas, but did nothing for my primary symptoms. I switched to a new Celiac doc. who seems to know a lot about this and I was told that starting today I should cut out sugar (hard to digest) and acid (tomato sauce, ketchup, orange juice, etc.). My problem has been with digestion. The doctor said that the abdominal pains come from food not being digested. My vomit nearly always contains chunks (my apologies for being too descriptive).......usually my dinner coming up....that I ate six hours ago.....the food isn't being digested. Sugars, starches, and acids are supposed to be hard on the digestive system. So I'm not cutting out as much sugar as possible and as much acid as possible. The doctor also recommended little things such as, if I eat pasta, make sure it's cooked till it's really soft--otherwise it's hard to digest. With apples, don't eat the skin (hard to digest). Anyway, this is really cutting out a lot for me......I used to drink a lot of OJ (acid), soda (sugar), and Crystal Light (artificial sweetener?). That pretty much leaves me with water. No tomato sauce means no more Chebe (pizza), which I ate at least once a week....much less starch (and starches consist of well over 1/2 my diet), etc. I'm not trying to complain, cause if it makes me better, I'll do it. Has anyone else cut out things like this? Is there anything else they'd recommend eliminating? I've discovered that dairy is not a problem for me anymore -- but I guess yogurt and ice cream are off limits cause of sugar, anyway -- so I don't need to cut dairy, I know. Does anybody know of anything, such as drinks that don't contain sugar? Crystal light contains some artificial sweetener, I think....are artificial sweeteners acceptable on a sugar-free diet? Finally, is there anyone out there who's been dealing with symptoms for a long period of time despite tremendous adhearance to the diet? Anyone who had them for a long period of time and is now fine? If so, why did you get better and how long did it take? I'm so used to being sick that it seems almost normal, now. I've actually been really happy to have the Olympics on cause when I can't sleep with abdominal pains or vomiting, there's something to watch at 2:00 AM. Thank you for any replies.........to symptoms, success stories, or food suggestions.

-celiac3270
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#2 burdee

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Posted 16 August 2004 - 03:11 PM

Hi celiac3270: It almost sounds like your doctor subscribes to the Specific Carbohydrate Diet approach with his ideas about sugar and starch causing problems. Have you read the book by Elaine Gottschalk on which that diet is based? 'Sorry I can't recall the name right now, but I'm sure someone on this board has read that book or is following the SCD diet and will correct me if I'm wrong. :lol: Did your doctor explain his rationale for all his suggestions? Does your doctor who says abdominal pains come from undigested food believe that autoimmune reactions to gluten include gluten antibodies attacking our own intestinal villi? That certainly must cause some pain. :( Did he test you for dairy, soy or any of the other major allergens which might affect your symptoms? Those are also pretty difficult to digest for some people (soy is right up there with dairy and gluten for difficulty digestion). After cutting out so much from your diet how does that doctor expect you to gain any weight?? What a challenge! :o

I also have problems with acidic foods. I didn't have tests to confirm, but I get a milder version of my symptoms when I consume foods like tomatoes, raspberries and alcohol. However, I ALSO have problems with artificial sweetners, ESPECIALLY sorbitol used in most sugar free candies and gums. I've heard from others who have problems (cramping pain, bloating & gas similar to celiac disease symptoms) with mannitol. Others have problems with aspartame (headaches). So the artifical sugar area, although possibly acceptable on sugar free diets, also creates lots of reactions in many people. YUP. Crystal Lite contains artificial sweetner, not sure which one, but read the label. :)

I'm sorry to hear all those restrictions pretty much eliminate all your favorite foods. <_< I struggled a lot with my gluten/dairy/soy/acid fruits restrictions for a while, but I've discovered lotsa foods I like even better and resurrected some old favorites with a different twist. If avoiding all those things (acid, sugar, gluten) makes your symptoms disappear, I'm sure you'll find new things to eat. However, if you endure all those restrictions and STILL have symptoms, get a second opinion. Or at least get a really logical explanation from your doctor. ;)

Oh, one more thing: Did you ever take digestive enzymes or discuss those with your doctor? Those helped me a LOT to prevent malnutrition problems while I was still struggling with getting the gluten/dairy/soy free thing right. I actually started digestive enzymes a year before I learned I had celiac and have just continued while eliminating all those trigger foods.
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#3 Canadian Karen

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Posted 16 August 2004 - 04:33 PM

Oh celiac3270, Buddy, you and me both!!!

Although our primary symptoms differ, the fact that we can't seem to shake them keeps us in the same boat!!!

I stumbled upon a really interesting study about allergens in foods - I have it at work, I am going to e-mail it to you tomorrow because I found it extremely interesting and you might also.....

All I can do right now though, is send cyber-hugs to you and give you encouragement that we will get this disease under control...... What gives me encouragement is the fact that I read so many posts from people who have lived with this disease untreated for most of their lives (and a lot longer that you or I have) before they received a proper diagnosis - and they are still around to fix the damage..... So can we!!!!!

Hugs to you,
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

#4 Canadian Karen

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Posted 16 August 2004 - 04:52 PM

Also, I am hoping to gain some insight on Wednesday when I go to see Professor Moore at St. Michael's Hospital..... He specialized specifically in Celiac.....

Hugs.
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

#5 celiac3270

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Posted 16 August 2004 - 04:54 PM

Right now, I think, the doctor finds symptoms the most important thing. Besides, if I'm not vomiting up my food, it's easier to gain weight.

Digestive enzymes....we've talked about that---we're just gonna see what happens with the sugar.

I don't know how much he explained -- I didn't have an appointment, but he talked to my mom on the phone. She explained to me, so I don't know how detailed he was.

Thank you, Karen, for your words of encouragement :D
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#6 Alexolua

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Posted 16 August 2004 - 05:12 PM

Not much I can help with celiac3270, still trying to get better myself. But did have one thing for ya, about the Crystal Light.

On the gfcfdiet.com site on their restricted list is Aspartame, which is in Crystal Light. I don't think it is on the list because it has gluten or casein in it, but because they say it can cause IBS symptoms -Irritable Bowel Syndrome. So maybe removing it might help? I dunno.

Hope this new diet works!! =)
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#7 Canadian Karen

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Posted 16 August 2004 - 05:14 PM

celiac3270! I found the study link - I e-mailed them to you (there are five portions of the link).....

It is quite interesting reading......

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

#8 ryebaby0

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Posted 16 August 2004 - 05:30 PM

Awwwwww..... that isn't fair! :( The book by Elaine Gottschall is called Breaking the Vicious Cycle. It's about the specific carb diet, which makes a typical celiac diet look like a walk in the park. However, some people find it to be a life-changing/saving experience if nothing else is working. There's a website and a bunch of people on the yahoo celiac message board follow scd. Fructose intolerance is diagnosable by a breath test (there's an article here on celiac.com somewhere) and is pretty common. I'd stay away from crystal light. Barring all that, there's the outside chance that like my son you have autoimmune enteropathy, which would mean medication and diet to get you symptom-free. (But its REALLY rare, I mean, REALLY rare)
Get acid-reduced oj and water it down! At least you won't have to give that up!
Here's hoping you feel better soon~you know we all like you best :)

Joanna
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#9 celiac3270

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Posted 16 August 2004 - 05:41 PM

Alexolua: That's interesting (aspartame)....I thought that there was something bad about aspartame and artificial sweeteners that was bad......actually, I think I was thinking of cancers or something with large quantities of it. Thanks for the heads-up; I won't be drinking that.

Karen: Thank you for sending that...I just checked your e-mails and I got them. I'll make sure I read those.

Ryebaby0: I've heard a lot about that book.....and I was thinking it might be a good idea--then I went to some site and saw all the ingredients forbidden--it seems very difficult cause it cuts out all the stuff that is used in gluten-free products (for example, arrowroot). I will be staying away from the Crystal Light.

Once again, thank you all, for your responses!

-celiac3270
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#10 Guest_~wAvE WeT sAnD~_*

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Posted 16 August 2004 - 08:54 PM

celiac3270---

The vomiting description actually matches that of mine before my diagnosis...I'd vomit during meals, and never make it through them...my food was partially digested and I could identify which particular food item I was expelling...gross, but true.

I hope you find better food alternatives and begin to feel healthy--I feel as if I'll never be healthy again myself, but I don't hold a candle to you when it comes to celiac disease/gluten-free dieting experience.

You have 100% of my support. :D B)


More hugs,
:wub:
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#11 judy04

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Posted 16 August 2004 - 09:11 PM

Hi celiac3270,

Please don't be too dismayed about this latest news, it could have been
a lot worse. I had to give up tomatoes until I healed. After 7 months
I can actually say I'm free of symptoms and free of pain...hooray!
However there is a downside to this news, I was recently diagnosed
Diabetic, another diet to learn!! I have to exercise more to bring
my weight down, I want to control it by diet, like my mother did.
Soo, I will be giving up on a lot more foods, but in the process I
will become more healthy. Don't let it get you down!!
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judy


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

#12 gf4life

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Posted 16 August 2004 - 09:46 PM

Hi celiac3270,

Sorry you are still having problems, but it sounds like your doctor is taking your symptoms seriously. So that is good news.

I would highly recommend the digestive enzymes. They really helped me a lot. I couldn't digest anything after my gluten challenge before the biopsy. I was pretty much down to nothing but rice for the first three weeks until I started using the enzymes. It took large amounts at first, but then I was able to digest more on my own. After about a month I could eat without them. I have no doubt that I would probably still be having difficulty digesting if it was not for the enzymes. My favorite were Pioneer brand Digestive Enzymes and Herbs.

I have problems with Aspartame, so I avoid it. I avoid ALL artificail sweeteners, except Splenda. I seem to be okay with that, but it is made from real sugar. I'm not sure how they make it, but they remove the sugar part and you are left with a sweet powder. :huh: You might want to check to see if this would be acceptable on the NO SUGAR part of your new diet. It is now found in a lot of diet drinks, since there aren't the bad side effects like aspartame and the other artificial sweeteners (I can never remember their names!).

I hope you are feeling a lot better soon.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#13 celiac3270

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Posted 17 August 2004 - 03:29 AM

Hmmm.....I'll talk to the doctor about enzymes. I am very pleased with how seriously he's taken this--not just saying "keep doing what you're doing and we'll see in a month."

The fact that you're free after seven months makes me feel good, Judy---maybe there is hope that by my eighth month, or so, I'll be at least on the road to recovery--I guess it's good that I'm trying to change my diet around to make symptoms better.
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#14 Guest_jhmom_*

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Posted 17 August 2004 - 02:21 PM

celiac3270, I am right there with ya and I have been gluten-free for almost 1 year <_< . I have lost another 5 lbs, continue to have abnormal BM's / diarrhea, nausea, loss of appetite, cramps, etc. I go back to another GI doc the end of this month I will let you know if anything comes up during the visit, also let me know if your docs find out what may be causing the problems.

I do hope you begin to feel better soon! :)
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#15 terri

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Posted 18 August 2004 - 04:47 AM

celiac3270, I'm sorry to hear you have to be on such a restricted diet, but if it works it will be worth it I'm sure. I've been racking my brains to think of what you could eat for snacks. Obviously, meals will be lots of meat and vegetables or soups (homemade), but for snacks, dipping broccoli in hummus is really quite tasty, stuffing pea pods with cream cheese is also pretty yummy. Peanut butter licked off a finger works great for those sudden urges. Remember, you can make your cookies with egg, peanut butter and Splenda. I've tried it out and it works. Now, for the best news of all (drumroll) Crystal Light in the ready to drink bottle is sweetened with Splenda! The mix that you make up yourself uses aspertame, but the already made up stuff uses Splenda. Also, at Costco they sell Sparking Ice made by Talking Rain which is sweetened by Splenda. It's carbonated and comes in 3 or 4 flavors. Back to food, you can have lettuce wraps like they make at PF Changs, they're kinda fun....
Good luck, I hope this works for you!
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Terri
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gluten-free since March 27, 2004


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