celiac3270

I haven't used this soup, but will take a few minutes to write for the benefit of other Progresso Creamy Portabella Mushroom Soup users

Hi everyone,

I think I've asked this before when it weeks turned into months with minimal progress. My symptoms included stomach pains (due to gas, the doctor said), vomiting, nausea, bloating, gas, low weight, and loose stools. I was diagnosed with celiac on February 17th through after numerous tests: bone age, bloodwork (allergies, celiac), sonogram, etc. I was told to remain on gluten until my endoscopy, which was maybe 7-10 days later--I tested positive again. Anyway, I was on the gluten-free diet by the end of February.

I should probably explain the progression in my symptoms over the past ten months. Prior to diagnosis, I had a constantly bloated belly and gas. I had occasional diarrhea, but it wasn't severe or persistent. I was 5' 67-72 pounds (I would lose weight when I got sick). Every 2-3 weeks, I would get stomach pains, which I dealt with by curling up into the fetal position. Later I started using a heating pad, which also helped greatly. After numerous hours of the stomach cramping, I would vomit. A couple hours later I'd vomit again, and perhaps a third time after that. After 10-24 hours, I would feel better.

The gluten-free diet helped with my minor problems. After a few months, loose stools were rare. My weight slowly increased, as did my height (I'm now nearly 5', 4" and 82-85 lbs.. My stomach was no longer constantly distended, but I still had the gas, vomiting, and stomach pains. Surprisingly, over the past ten months, the stomach pains and vomiting have become more frequent. Midway through, I was getting sick every 1-2 weeks, then by about the 8th month it became every 7-10 days...and now, over the past week or two, I've been getting sick every 3-5 days...most recently, for example, I was sick on the 21st, then the night of the 24th into Christmas, and now today, the 28th.

On the positive side, the sickness is less debilitating. I can still do homework hunched on my bed, whereas I wouldn't have been able to 10 months ago. It does not take 24 hours of stomach pains and vomiting to get better, but rather, I start to feel queasy, and then 2-4 hours later I get the full-fledged symptoms, which then take maybe 8 hours and some vomiting to go away.

Anyway, it seems like longer than ten months. I've been to a GI who diagnosed me, but within a few weeks, knew less about celiac than I did. I'm now going to a good celiac dr., but he doesn't know what else we can do besides wait it out and maybe it'll get better. He's also thinking of trying a medication: Domperidone, but only to alleviate symptoms slightly, not eliminate them. This doctor also did a biopsy 1-2 months ago to make sure I was healing. My villi have completely grown back but my stomach is still red and raw from the damage inflicted prior to the gluten-free diet. I am also seeing a homeopathic dr. and we are trying a third remedy to see if it works.

Basically, I would like to hear from people who have taken a long time to feel totally better--either people who are currently in a similar situation or those who took 10 months to over a year to get better...I need a success story to encourage and reassure me or someone to commiserate with.

-celiac3270

P.S. I should mention that one suspected problem is my digestion. When I vomited today, I hadn't had any lunch and it was 3:30...that must have been my breakfast, which I ate at 8 AM....the fact that after 7 1/2 hours, my food hasn't digested makes both me and my doctor suspect that my body isn't digesting food fast enough--I don't know if it helps to include this or not.

Celiac: Yes

Diabetes: No

Sex: Male

That could be from stress...some people gain a lot of weight when they're stressed, as you might be before finding out if you have celiac.

For good meal/protein bars: Genisoy makes two gluten-free bars. One is called something like "Southern Style Chunky Peanut Butter". I like this one the best, cause it tastes sort of like a candy bar--chocolate on the outside, pb and nuts and stuff on the inside, it tastes good, and it's vitamin-packed. Genisoy also makes a "Pure golden honey honey yogurt" or something--another gluten-free option, but I don't like it as much...try them both, though, and you can pass your own judgments on them. If you e-mail Atkins, they'll give you their gluten-free list, which is quite extensive and contains numerous bars...I find they taste artificial and make me feel queasy, so I don't eat them.

There are many good gluten-free cookies, particularly those by Pamelas and Glutano. You can make a PB & J, of course, using gluten-free bread (Ener-G or Kinnickinick). You don't need a lunch box for that--just a ziplock bag or, if you don't want it to be squished, tupperware. Then, of course, there are multiple other sandwiches: ham, cheese, etc.

Probably the best list for a teen .....FritoLays has a gluten-free list, which I've pasted below. Here's the page where the list is: Open Original Shared Link. If you Open Original Shared Link The nice thing about FritoLays is that they're mainstream, so people aren't going to question or scrutinize your food.

Products Not Containing Gluten

Last updated December 14, 2004

BAKED CHEETOS

When I was younger and I'd complain to my mom about whatever crisis was happening in my life she'd always say to me, well such and such has this problem and its way worse then yours... and to me that was insensitive and not sympathetic (and I still feel that way and she still sometimes does it!) but you know what as much as I hate to admit it, she's right. My only sibling is battling mouth cancer right now (never smoked, no hazardous jobs, drinks only occasionally) and I'll I've got it a little dietary problem. I'm good.

I know what you mean. I often think of that when I'm mad or sick. There is, however, another group that has had no health problems at all....there are also many 14-year-olds who have never had any dietary restrictions, not been vomiting and having stomach pains since they were seven, and never had to deal with ANY health issues! I think that's what upsets me sometimes, too.

Hi,

I know I've read this post before, but I've never replied. The first few weeks of trial and error were miserable--eating soggy breads and hard breads and breads that fall into crumbs when you touch them...and getting tired of eating the same three or four foods until I could find out which others were gluten-free.

Later it sunk in that this was the diet I would be on for the rest of my life. It was disheartening that there would be a lack of spontaneity and such inconvenience, in addition to the same foods over and over and years of reading lables, calling companies, and worrying about wheat getting in my food.

The diet isn't difficult to deal with, but it's just a pain in the neck and I've found that at this point I've tried all the good foods at the healthfood store. Lately I've been feeling like I eat the same thing over and over again. I don't know what I want to eat for breakfast--I make french toast or eat a Food by George english muffin. For lunch, it's always Mac & Cheese, PB & J, grilled cheese, a hotdog, etc. I've also been limiting fats, so I can't eat as much of the tasty food as I want, and eating no tomato or orange products, eliminating gluten-free pizzas, lasagnas, spaghetti, ketchup, etc....making things that much more boring. Dinner is always potatoes, a meat, a vegetable, or something like that. I think I could get a more satisfying variety with tomato sauce. I think what's also disheartening is that despite my progress in weight, I'm still getting sick, now every 3-5 days...vomiting, stomach cramping, gas, etc. I've been doing this for 10 months and I'm not seeing any results. Though I would never stop the diet, I sometimes get angry at it and the fact that I'm sacrificing wheat and not feeling much better.

Sorry.....just a vent.......

-celiac3270

sometimes we have to use scare tactics just to get our point across and that's too bad--people should just listen to us and believe us on face value  ----really, come on  --would anyone give up the foods we have if we didnt have too---  i would love to beable to pop anything in my mouth without worry--what a dream that is now  --deb

I know.....good points...luckily, nobody important in my life is a disbeliever . The end of your post made me think back, too, to the days where I would pop anything in my mouth that I wanted or would order anything off a restaurant menu based on what tasted good, or when going to the grocery store with my mom, just browse and look for something new that looks good. Now I realize how little people appreciate that and how little I did, too.

Don't forget that chain restaurants are convenient...check the eating/dining out & restaurants section for those options.

All you can do is call them. You'll probably get a good idea of whether or not they've dealt with this before and whether or not you can trust them--and of course, bring food of your own.

If you have osteoporosis, there is a very good chance you also have celiac. Osteoporosis is one common long-term effect of gluten on a celiac's body.

Lol....the host mispronounced celiac disease. He said it like: [sell-ee-ak]. Then they went to ads, and when they came back, he pronounced it properly . It's nice, though, that we get fifteen minutes of publicity.

My mom tried to call in....but I think he only did two callers. One person who was self-diagnosed--a Dave from Alaska, I think, and a Marcy or Marcia or something who was a physician.....ooh, it was so annoying cause she was on for seven minutes asking if he's tolerant of doctors who go to other doctors to get diagnosed and why don't they diagnose themselves and other weird non-celiac stuff. Argh...

I hadn't heard...thank you! If anybody calls and gets on, say hi to everyone on the board!

There's a lot of debate over wheat starch...here is a section on this site that has many articles on wheat starch and the CODEX standard:

https://www.celiac.com/st_main.html?p_catid...-43104031536.6b

Momof2,

I think what your doctor is suggesting is refractory sprue...when the body and the villi do not respond to the gluten-free diet. Before you can determine it is this, though, you need to look at a lot of other possible factors, such as that your daughter might be getting glutened somehow, preventing her villi from healing and making it SEEM like she has refractory sprue.

Canadian Karen was told she had refractory sprue a few months ago, and it turned out she was using Gas-X, which has gluten, thus, the misdiagnosis. There are articles on this site about refractory and if you do a search, I'm sure you could find some more information on this. Here's one article on refractory sprue from this site: https://www.celiac.com/st_prod.html?p_prodi...-47104083536.c8

Here's a bit about it:

What is refractory sprue?

This question has been the subject of great scientific inquiry, and there are differing opinions on the relationship between celiac disease and refractory sprue. However, there are several general characteristics of refractory sprue that researchers seem to agree on:

- Presence of persistently damaged villi in the small intestine that are not repaired after the gluten free diet has been successfully initiated and/or maintained

- An increased presence of intraepithelial lymphocytes (IEL) in the small bowel

- Severe malabsorption

I'm not sure if this is it, but it might be what he was referring to.

-celiac3270

Yeah...I have weight gain problems, but probably not for the reasons one might expect. I can and have gained weight on the gluten-free diet, but it's difficult for me to gain more in part because I get sick so often (resulting in a 2-5 pound drop) and also, my doctor is telling me to avoid fat! Lol...how do you gain weight without fat? I really crave all the fatty foods, too, but I have been slowly gaining and my primary concern is with my symptoms right now.

I don't drink, cause I'm a young teen..... ...but I think I remember reading that some are gluten-free and some aren't.

I tried to seach the board on Wheat Starch, turned up about a gazillion titles that had everything to do with wheat but nothing about starch.

I was rereading your post and I just noticed that you had trouble with your search. When you Open Original Shared Link the message board (not the webpage) use the Open Original Shared Link You can make sure that, for example, you only receive results that have both wheat and starch in them, or you want results that have starch in them, but don't have wheat, or whatever. If you simply type in "wheat starch" to the search, it will come back with results that contain either of the two words...if you search for "+wheat +starch", however, it will only bring back search results that contain both words. Click on advanced usage help and you'll see what I mean...just a tip for future searches.

The pediatrician I had been going to was terrific. He thought he had diagnosed me with cyclic vomiting (vomiting from migraines and all that, since migraines run in the family). Regardless, he sent me to a gastro. who, after sonograms, blood tests, x-rays, bone age tests, etc. finally found celiac! He wasn't an expert on celiac, but knew the basic principals and since I was dealing with a GI, then later, an actual celiac dr. for this, he didn't need to be. He just retired, so I am going to go to a new pediatrician in January for my annual physical.

I believe he's already had a celiac patient or two, so he knows enough, but he was recommended to my family by numerous friends, so he's probably a good enough dr. and if he doesn't know about celiac I'll educate him or provide articles.

McDonald's Fry's...I can't eat them either. I am going out on a limb here, as I am new to this. However, all the research I have done points to the fact that it's difficult for gluten damaged intestines to digest fat, and the fry's are deep fried in Oil which would kind of "slide right through you".

I also can't eat their hamburgers. I react violently to them. I don't know if it's just the bun or a combo of the bun and whatever they put in their burger. I assume there is a ton of "filler" in them.

McDonalds fries are gluten-free, but you need to make sure that they're cooked in a designated oil...or only with hashbrowns. I don't know if every fastfood joint run by McDonalds runs the same way and I doubt it, so that's something to be careful of.

Fat is difficult on the system...my doctor suggested that I limit fats in my diet, as they are hard to digest.....just wanted to verify that . For those with persistent diarrhea, try limiting or eliminating sugars, which can affect bowels. Acidic foods can be tough on the system as well, in addition to the particularly-hard-to-break-down-and-digest sugars of the watermelon and grape. Finally, the skin of an apple is something to avoid.

To my understanding, McDonalds burgers (w/o the bun) are gluten-free. When you say "I don't know if it's just the bun or a combo of the bun and whatever they put in their burger..." are you saying that you eat the bun? If so, there's your problem! That's pure gluten!! If you remove the bun or you think the burger touches a bun behind the counter before you get it, then that's still the problem--cross-contamination from the crumbs. The burger itself is supposedly gluten-free, so the problem has to be in the staff's handling or preparation of your food. If you think that there's a lot of filler in them or something, you shouldn't eat it, though.

I usually didn't eat breakfast because of it. But if I did...it would be toast. How ironic is that?

Lol...I know...if I was sick (from gluten, I now know), I'd eat saltines, toast, and cheerios!

-celiac3270

Yes, my family has a plan all together, as well--maybe that's why I, too, haven't been having issues.

Yep...oats are nearly always contaminated--and since you're ingesting gluten, of course you could have a gluten reaction

Hmm...from the name, I think that it would be bad , but I can't find it on the celiac.com list...hydrolized wheat starch is on it, however. I think I'd stay away from anything with wheat in the name except buckwheat.

I don't think my parents have had any issues with my celiac and the insurance companies....

Jill, yes, you need to load on gluten for at least a month before a diagnostic endoscopy...maybe longer depending on how long you've been gluten-free....you need time to tear up your intestines.

Wow, that's terrific! I haven't gone to China and don't plan to in the near future, but that first site has many language--a valuable resource!