Firmly Gf With Continuing Symptoms

[celiac3270]

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

[burdee]

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. 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!

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

[Canadian Karen]

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

[Canadian Karen]

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

[celiac3270]

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

[Alexolua]

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!! =)

[Canadian Karen]

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

[ryebaby0]

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

[celiac3270]

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

[Guest ~wAvE WeT sAnD~]

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.

More hugs,

[judy04]

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!!

[gf4life]

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. 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

[celiac3270]

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.

[Guest jhmom]

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!

[terri]

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!

[YankeeDB]

For people trying to gain weight with digestive problems, I like to recommend coconut oil. It's an easily digested fat. You can eat it straight or in a salad dressing (but will have to figure out a low-acid accompaniment besides vinegar) or use it to stir fry.

I echo the recommendation to be checked for other food allergies. From a York labs test I recently learned I need to eliminate yeast (includes vinegar, sigh), pears, sunflower seeds, cashews, soy, dairy and eggs. Some of these I had already suspected.

For what it's worth, the natural sweetener Stevia works well for me but Splenda seems problematic. I do drink aspartame with seemingly no effects but should probably experiment with eliminating it for a while. I've recently learned nearly all carbonated drinks are bad for the tooth enamel anyway.

Just a few miscellaneous thoughts. I hope you feel better!

[celiac3270]

The restrictions aren't too bad, as long as it makes me feel better. Besides, I don't believe they are permanent, even. Once my intestines can absorb normally, I'll be able to go back to more acidic foods and high-sugar foods.

YankeeDB -- I have been checked for food allergies. When the GI was trying to figure out what was wrong with me, he tested for food allergies. There were none.

This is off topic, but I was talking to some kid today...I've known him a few years, but we're not great friends. I was eating some gluten-free food; don't remember what, and he asked something like "when are you allowed to eat normal foods again?" And I had explained this to him.......just kinda shows how little people understand it.....not really pertinent to symptom/food discussion, but sort of interesting.

Thanks for all the replies. I know I'm not alone, but it helps to hear the stories of others who deal with the same thing.

-celiac3270

[flagbabyds]

Your vomiting sounds a lot like mine did before I went gluten-free

[celiac3270]

Latest update:

Yesterday, starting around when I woke up, I started to feel little twinges. It was the last day of camp (a day camp where I'm a CIT.....you get paid). Anyway, I've gone before with twinges and by noon felt fine again. So, I went. By 11:30 the pains started getting really bad. Now, the really little kids (3-4 years old) go home on a 1:30 schoolbus as opposed to the 4:30 bus. So, I decided to go to the camp nurse, asking if I could go home on the 1:30 bus with the younger kids--sick kids have done that before. So, first off, they take my temperature......even though I said that I already know what's wrong with me. They tell me just to drink water (as I had been doing) and eat lunch....maybe that's why I wasn't feeling well (yeah, right). I explained the whole celiac thing as well as I could while not feeling well and they asked me why I would want to go home when I could just relax at camp until I feel better (for my own bed, AC, my own toilet to vomit in, duh!!!! ) Anyway, so I had to leave and she didn't really give me any options or mention that earlier bus. Well, not ten minutes later, I vomit into the toilet and go back to her office. This time I'll bring up the earlier bus. So, I told her I vomited and she started asking if anyone "saw me vomit". I explained that I was in a stall so nobody pulled open the door to watch me, but there was a kid who heard me. I ask to go home on that bus. She then called me manipulating in terms of the bus......jerk.....and then called my mom. She said "celiac3270 claims to have vomited and would like to go home". Claims; give me a break! I felt like saying "smell my breath".......claims. My mom put her in her place "if he said he vomited, he vomited". I got to go home. I got home and ended up vomiting every 15 minutes, not much came up, but I was vomiting very frequently. The abdominal pains were excruciating and lasted until about midnight. I had the abdominal pains worse than I had had them for five or six years, when I had them that bad in first or second grade. I kept crying and wishing I could just be knocked out or something so that I wouldn't have to deal with this. Anyway, this story is just an example of how mean people can be.........claims to have vomited........manipulating........give me a break!!!! That really infuriated me. Oh, by the way, my vomiting wasn't chunky at all--just little vomits of liquidy stuff, rather than huge vomits of chunky stuff.

The doctor has prescribed Prilosec (gluten-free) 20 mg. twice a day. On the box it says once a day, but he prescribed twice a day. He thinks that my upper intestines are so raw and sensitive from all of this, that that's why I'm getting all this vomiting. The doc. has been great. Thank you, everyone, for listening to me and for making such encouraging replies.......until now, my acid-free diet had been helping a lot--I don't know why it got worse, but i'm gonna go take my Prilosec .

-celiac3270

[Canadian Karen]

Oh celiac3270, I am so sorry you had to go through that!! Obviously, that person didn't know who she was dealing with!! She obviously doesn't know how you are heads and shoulders ahead of other children your age..... She probably was just treating you like she treats any other kid who says they aren't feeling well..... which, by the way, doesn't sound like she is doing a very good job, since she should take every child seriously when they say they don't feel well.....

Did you read my post about going to the dr? I wanted to let you know that he told me not to have any bananas, apples, cherries, plums, prunes OR THEIR JUICES..

Now, that is because of the diarrhea, so I don't know if that would apply to you in regards to the Tropicana Freshed Pressed Apple Juice..... Did you try it? Maybe that is what didn't agree with you...... and if it turns out to be that, I will feel like c*r*a*p........

I hope you are feeling better today..... As usual, I am sending hugs your way that you will be feeling better real soon!!!!

Karen

[deb]

Hey celiac3270,

Sorry you are having such a rough time. The Prilosec is a proton (sp) pump inhibitor. If the problem is to much acid production in your stomach than the Prilosec should help. I was proscribed it a year ago after I had my stomach scoped. They were looking for ulcers as an explanation for my pain. No ulcers but they did find a small hiatal hernia. I had to take 2 pills also for 3 months. I think it helped some what with stomach pain but did nothing for my other intestinal symptoms. Something our family uses for upset stomach, nausea or stomach pain is papaya enzyme. you can eat 3 of them right after meals to help also. they taste good also. Hope you get to feeling better really soooon!!!

Take care,

Deb

[Canadian Karen]

Hi celiac3270,

I just thought of something else..... Have they looked at your gall bladder for the source of your problems? I have a friend who went through very much the same thing with the vomiting and the acid, etc. and her gall bladder had to be removed. She feel 10 times better after the surgery.....

Just a thought.......

Hugs.

Karen

[celiac3270]

Did you read my post about going to the dr? I wanted to let you know that he told me not to have any bananas, apples, cherries, plums, prunes OR THEIR JUICES..

Now, that is because of the diarrhea, so I don't know if that would apply to you in regards to the Tropicana Freshed Pressed Apple Juice..... Did you try it? Maybe that is what didn't agree with you...... and if it turns out to be that, I will feel like c*r*a*p........

I actually haven't tried the apple juice, cause I know it can be kinda heavy on the stomach. The main sugar thing my doctor wanted me to stay away from was the sugar in certain high-sugar fruits like watermelon and grapes. The skin of apples wasn't too good for me, he said, either. Bananas are okay, he said, but I haven't had any fruit since my sugar-limited thing. He didn't actually say to stay away from all sugar or most sugar; just mentioned those fruits, but I figure it would make sense to avoid unnecessary sugar like the stuff in icings, candies, and sodas (although I did have soda while I was sick cause it helped....you just let it sit awhile so the carbonation goes and you don't get gassy).

I had to take 2 pills also for 3 months. I think it helped some what with stomach pain but did nothing for my other intestinal symptoms. Something our family uses for upset stomach, nausea or stomach pain is papaya enzyme. you can eat 3 of them right after meals to help also. they taste good also. Hope you get to feeling better really soooon!!!

I'm glad to hear that you took Prilosec 2 pills for 3 months, cause although I trust my doctor with prescribing it, I was sort of scared to read the label and see that you're only supposed to take it daily for 14 days if you're over 18. I guess, it did say, though, to talk to your doctor for longer periods of time or if you're under 18.

I just thought of something else..... Have they looked at your gall bladder for the source of your problems? I have a friend who went through very much the same thing with the vomiting and the acid, etc. and her gall bladder had to be removed. She feel 10 times better after the surgery.....

I don't think they've looked at my gallbladder. How do they check that (bloodwork, some sort of scope) ? I'll talk to my mom about that. Thanks for the suggestion.

-celiac3270

[celiac3270]

Karen: My mom wrote down your gallbladder suggestion and she'll ask the doctor about that next time we see him.

Thanks to both of you for replying.

-celiac3270

[Alexolua]

I was sort of scared to read the label and see that you're only supposed to take it daily for 14 days if you're over 18.

celiac3270, not trying to scare you or anything! But what's the label say for those under 18? Usually drugs get tested on adults, and they don't always make sure it's safe for kids. Or at least, that's how they use to do it. Assume kids to be "smaller adults" which isn't true.

Think it'd be good to drill your doctor on what kind of testing was done with it on kids, to be safe? Or don't mind me, I can be a tad paraniod. =)

Oops.. edit, lol.. it does tell you to talk to your doctor on the label if under 18, so be good to do that before taking it, LOL.