nettiebeads

nettie beds-- what are your other diver. symptoms?  do you get pain?  do all the seeds etc pass through?

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The most annoying symptom to me is the feeling that I just don't completely "empty" - that there's something more in my colon but won't come out. (sorry to be so graphic) The other is pain, well more like acute discomfort across my abdomin below my belly button. But after a day or two things go back to normal. Hope this helps you some.

I just found a cheap gluten-free microwave meal from Healthy Choice.  It is the enchilada with rice (sour cream sauce).  I called to make sure, and it is gluten-free.  Best of all-much cheaper than the specialty brands!

Oh, one more question-I know that Frito Lay has tons of products that are gluten-free, but they state that although they wash their lines between products, there is a chance that there could be traces of wheat.  Has anyone run into problems with Frito Lay products?  I love Fritos and Cheetos!

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Thanks for the info - I'll have to look for that. I'd given up on frozen entrees - you just can't stand at the freezer section for hours reading all of the ingredient lists.

I haven't had a problem with Fritos or Cheetos, well the regular Fritos. I know the honey barbeque ISN'T gluten-free. And I had Cheetos yesterday with no problems.

Hi and welcome to the board!

Since celiac disease has nearly 200 symptoms and everyone seems to have their own personal combination and severity, it is difficult for drs. to dx. It is called the great imitator of diseases. Constipation IS one of the symptoms. I don't know why drs. don't want to do Celiac panels or anything. It's not like they're paying for it! My personal theory is that since celiac disease is treated by diet and not by any meds promoted and pushed by the drug companies, that it's out of their comfort zone so they don't bother. My own gp (who did his residency under my now retired former gp who dx'd me) admits that he doesn't understand celiac disease, but has done bloodwork to make sure I'm getting the nutrients I need. And he's glad I found this site. But I digress -

Your symptoms do make celiac disease a very likely possibility.

If you go gluten-free now, it will skew any tests that the dr. may order.

as for your C, instead of laxitives, have you tried fiber pills? My gi recommended Citrucel - it's gluten-free and works. I don't think the laxitives are a good thing - constant use does result in a rebound effect and can keep the muscles from working properly. But I will admit to using MOM when things get bad for me.

Keep us posted!

Hi John and welcome to the site!! As a female I can't answer all of your questions, but you have diagnosed yourself via the diet challenge as celiac disease, or at least you for sure have problems with gluten. I haven't had any of the bloodwork or biopsies or anything else done - my gp put me on the gluten-free diet nine years ago for bad bad bad diarrhea, and that stopped that problems so the dx from him was celiac disease. It's called the diet challenge and is a viable dx tool. Since you have been gluten-free, it will skew the results and probably give a false negative.

Your symptoms are consistant with celiac disease. celiac disease is also a malabsorption disease, so the body will have other problems besides digestive. It's the malabsorption of fats that causes the floating, frothy stinky D. Nerve problems are a biggie, so it that overwhelming fatigue that I liken to swimming upstream in a molasses river in Jan. Then there's the depression and irritability along with the other stuff for good measure. I hope this helps some, and feel free to ask any questions here. None too weird or silly!

Wow...I get all those same symptoms off and on but I've had my blood checked for B12 deficiency a couple times and they said it was fine. 

Sometimes I wonder about my HMO cuz they also said I didnt have malabsorption but Enterolab results showed high malabsorption (I lost 25 lbs.)

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You might try a B complex. If your body doesn't need it, it'll flush out since it's a water soluble vitamin.

I take a complete vit/min supplement. I think it helps me quite a bit. I feel a little "draggy" when I don't take them for awhile.

And I claim to be too ornery and mean to get sick.

So I've been reading that this may show up also now that we've gone gluten-free.  It's been 1 week and I think we've done really well, no visible changes yet, but the odd poop that is dark and "normal" looking (is this what happens in the early stages or the fact that it changes from pale to dark still mean he's likely getting glutened?).  Our whole house is gluten-free now, but I guess there could still be traces in places, but we are very aware of what we're trying to achieve.

Now to my question, today I've noticed ds is quite gassy/smelly which has never been a problem for him regardless of what we've eaten.  How would I know if it was a lactose intolerance or do we assume that he likely will/does have it as well for now?  Do we just remain gluten-free only and then cut out lactose as well later, or do both now and then add lactose back in?  Not sure on how I'd know if it was lactose related or not, are there other classic symptoms?

TIA

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A lot of people with untreated celiac disease have lactose intolerance as well. What happens is that the villi not only absorb nutrients, but form the lactase needed to digest lactose. But since the villi is damaged in untreated celiac, it can't make the lactase needed for lactose digestion, ergo lactose intolerance. A lot of people with celiac disease, after being on the 100% gluten-free diet and heal, regain some, if not all of the lactase producing ability. I would highly recommend taking your son off of all dairy for at least two weeks (add a supplement if you are worried about calcium and vit D) and then retry things slowly. Let him have a piece of white cheese or one 8 oz glass of milk for one day, see how he does (none the next day) and go from there. After 9 years on the gluten-free diet, I tolerate dairy pretty well now, but still can't have too much yellow cheese. Hope this helps!

Great article!! Thanks!!!

Hi Julia, How are you?  I stick with wine also.  I called the manufacture for Bacardi and they called me back and said that their bacradi Superior/Select/Gold/151 are all gluten-free, and also some flavored brands like Cocunut/Vanilla.  So Rum and Cokes are my new drink.  I'm trying to figure out if Cognac and brandy are gluten-free too. 

Take care, joe

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Cognac and brandy are made from wines. CHEERS!

thanks nettiebeads for responding

may you give me more details about that??

one time I had symptoms similar to diabetes , very frequent bath, hunger after eating, extreme fatigue after eating so that I can't move! this lasted for three days during them I thought I am 100% diabetic, but when I made tests sugar in blood was ok even during the past 2 months of the test( they can test how blood sugar was during the before months), at that time I was shocked how everything was ok!! and that diabetes symptoms went off after the tests!!!

I was and still sensitive to sugar, it causes anxiety for me and mizerable feeling.

what I am still confused about is that my sensitivity to things healthy and recommended for celiacs and for everybody like citrus fruits and garlic!!

the second day I eat these things I am semi-sur throut although I didn't eat or drink anything cold at all!!! and this is a huge problem how could I increase my immunitiy while I cant eat helpful things to the immune system like citrus fruits which include huge amounts of vitamin C??

what in the hell couses this sensitivity???

should I consider taking vitamin injections? and if I do, how long will it take?? six months until I heal???

I don't understand how food can reach small intestines after 10 minutes from eating! what a super protien is the gluten!!!

I read in this site about Additional Things to Beware of to Maintain a 100% Gluten-Free Diet

from the ingredients of many medicines and toothpastes I can't figure if they contain gluten or don't, usually complicated chemical compounds are typed which can't be understood . how to deal with that????

final question:

are anitbiotics safe??  because I have been taking them during the past days for healing from a skin infection, but I am not feeling only that these antibiotics are doing nothing, I am also feeling they are weakening my immune system!!!

I think there is a complicated immune problem in my body so that it can't tolerate citrus fruits,garlic and antibiotics!!!!

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It could be the sore throat is from acid reflux which may be cause by the malaborptions of food. I'd go down to basic food - chicken and fish are easily digested. Cooked veggies, especially potatoes. There was another post re: what do you eat when you're tummy is recovering from glutening. The hands down winner was mashed potatoes. Antibiotics are hard on the digestive system, period. Your dr may give you something to go with the antibiotic so it won't aggrevate you stomach so bad. celiac disease is a life of learning and patience. The healing takes time. Stay with it and don't get discouraged. And my blood sugar still stays naturally on the low side, but not enough to get my dr worried. But I haven't had a glucose fasting test since I was in h.s. The only time I spilled sugar was when I was preggers. But I know I'm better off w/o sugar. I go way up in energy but the crash afterwards isn't worth it.

As I've said before though, if ALL grain is bothering anybody, it's not a gluten problem. It's something else.

richard

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Well, yeah. But I've always been a lightweight drinker. It's just as I get older my body handles it less well than before. And Whiskey has something else in it that triggers my migrains so I stay away from that completely. But I do know that my reactions to grain alcohol are NOT celiac disease - just my body looking out for my liver I guess.

hi all

1-I have been gluten-free for one month, many symptoms have vanished, but my immune system is still weak! I am still so sensitive to any thing little cold , I am as before all the time about to have a sur throut but thanks to not drinking or eating any thing cold at all. and my body is still bad at healing from cuts and infections.

2- I still don't understand the exact mechanism of celiac disease. immune system attacks all strange bodies comes to blood, so why when attacking gluten harm occurs to the villi? does the immune system attack the gluten only while it's been absorped by the villi so damage happens to it? I dont understand.

3- why products like makeups, soaps, shampoos, hairsprays, perfumes, etc..why should be gluten-free ?? how could they reach the intestines?

4- when glutened, how to deal with the problem? for example when I feel pain after eating a hiden gluten will it work to throw up?

thank you all

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You need to give the gluten-free more time. You didn't state how long you had been sick before going gluten-free, so we don't know how much damage has been done. Remember celiac disease is a malabsorption problem so your body wasn't getting the nutrients it needs to keep healthy and fight off infections. Slow healing is also a symptom of blood sugar problems, which seem to be common with celiac disease. Remember, autoimmune disorders tend to piggyback onto others. I was dx'd with hypoglycemia back in h.s. days. Healed slow then, and still do.

Your question about why the body attacks itself when gluten is ingested is a good one. And one that the experts don't understand completely either. There are a lot of things not understood about autoimmune diseases and why more research needs to be funded.

You would think that makeup and hair products would be okay, but look at it this way - you are carrying contaminates on your body. How many times a day do you scratch your head, but NOT wash your hands to remove the contaminate. Then pick up a gluten-free chip or something and eat it? Voila! the gluten is now in your body. Or when you wash your hair in the shower, can you keep the water from running down into your eyes, on your lips.... The less exposure, the better is the consensus when it comes to gluten.

And throwing up won't really do anything to stop the glutening. Once you feel the pain that means the gluten protein has reached your small intestine and you can't throw it back up from there. So the best bet is to be very very careful and maintain 100% gluten-free lifestyle. But it really isn't so bad after awhile - It will become second nature and easier to be 100% gluten-free than it is to be sick.

I posted this in the wrong forum so I will repost here.  I was wondering if smirnoff ice coolers have glutten in them.  Or how do I find out?  Whaat alcohol if any is safe or okay to drink. 

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The coolers are made from malt which is from barley and off limits to anyone with gluten problems. I stick to wine, have decided that I have problems with grain alcohol - no vodka for me anymore, but will keep my margaritas (hey julie5914 - I have a long weekend next weekend - wanna come over for a pitcher )

I found a wine at WalMart called Fruituzia (or something like that) and it's almost like the way wine coolers used to be made. It's really light, slightly bubbly and only 6% alcohol. And inexpensive!

I hope I'm typing this in the right place, anyway, I just wanted to say thanks for the response. Not exactly what I was hoping for, makes it hard to figure out  where the gluten came from. Guess I'll have to be more assertive when ordering at restuarants. Problem is, as I'm sure you know, not all of them even know what I'm asking them. I saw an article about the increasing awareness of Celiac in  Wall Street the other day, could be there is hope.

Thanks again,

Pete

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Have you tried the Triumph dining cards? They do help - I used mine the very night I got them - was going to order beef tips, handed the card to the server and asked him if he had ever seen them - which I knew he hadn't - small town; he went to the kitchen and came back telling me that the chef said the meat came with flavoring and soy was used - and that I should order the chicken or fish. It was nice to have one relaxed meal where I didn't have to worry about getting sick. For me, the symptoms wouldn't appear for nearly 24 hours, then I'd have a hard time tracing back to where I had ingested gluten. Obviously have a slow stomach

I just recently bought a house with a friend of mine and another friend of ours is renting a room.  We used to each prepare a few meals and go on with our lives...but now I either have to run down their ingredient list or make my own meals.  I'm only on day 3 of being gluten-free free and am having a hard time driving the point home to my friends. 

Do you have any suggestions on how to help them understand that one iota of gluten can not touch anything that will go into my mouth?

I am going to create a "safe" cabinet of foods that I can eat...and I will get my own utensils and mark them gluten-free - but I fear they think I'm being neurotic and just don't understand how sensitive the issue is.

Any advice is appreciated.

Thank you,

Ehrin

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My dh isn't celiac disease, and eats nongf foods. He tries to be careful and clean regularly, but I decided that I'd rather be paranoid and prepare my foods on paper plates, paper towels, whatever it takes to keep any hidden crumbs from cross contaminating my foods. Okay, so what if they think you are over reacting. Have them read up on what gluten does to those with celiac. And how if you don't go gluten-free, you'll have a higher chance of all kinds of problems - neurological, physical, cancers.... KatieUSA (I think) mentioned putting cleanser on a piece of pizza, rinsing it off and then handing it to her non-gluten-free friends to eat. They refused and then finally got the message that gluten is poison to us special people.

I do take vitamins.  Right now I am taking the Spring Valley Allergy Free Naurally Complete Multivitamin and the Iron.  In the past I have taken CVS brand. 

Be careful and read the ingredients.  Before I went gluten-free I was taking Walmart brand - big mistake.  THEY ARE NOT GLUTEN FREE (It does list gluten in the ingredients, although it is the last ingredient and I almost missed it).   

Good luck -

Cindy (aka kevs mom - I really do have my own identity)

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My daughter just inherited my Walmart supplements. I'd used them before, but ignored my own advice and didn't read the labels when I restocked last month. But thanks to this forum, I was about to answer another post on what I took and so I finally read the label. Gluten was the very last word No wonder it was all I could do to make it through the week at work - I was poisoning myself!!! I always forget to take my supplements during the weekend - different routine.

You're getting it! The gluten-free diet just takes some creative thinking. I've learned to make a passable cream soup whenever a receipe calls for cream of mush, chx or whatever, just whip up a cream sauce with cornstarch and half and half with milk and it's not too bad. Had smothered swiss steak last night and my husband said it was good - he's the nongf ex-sous chef.

I am brand new here, and I'm not even sure if I have posted in the right forum, but here goes.  I have a 14 yr old son who at 7 was diagnosed with ADHD, but I am convinced there has been more going on...I believe it's Aspergers Syndrome. Anyway, I guess my question is....Can a child be 14, over weight and misdiagnosed all these years?  When he was a baby, he never seemed to have a real "solid" stool,  not even as a toddler for that fact. ( As you can assume,  I haven't been privey to his bowel movements for quite some time now lol ) He never seemd to have any other digestive problems, with the exception of being very gassy    Recently I have heard that sometimes there are not alot of obvious symptoms. I have always had a gut feeling that at least some of his problems have been due to maybe a food allergy.  As a toddler I had him on the Feingold diet. His favorite foods have always been things like pasta and pizza. I have read quite alot of this board,  and you all seem to be very well educated on the subject. Any thoughts you might have would be greatly appreciated.

Thank you for you time

Rosie

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There's another member of this board who has started a thread on autism, aspergers and such. Just type in autism in the search and it will bring up all the threads ever posted re: that subject. About your ? Research has been done re: celiac disease, gluten problems and behavior problems and some connection has been made. The loose stools may be a symptom of celiac disease, along with the gas. And your son may be asymptomatic in regards to "normal" symptoms - failure to thrive, underweight, etc. You could try the gluten-free diet, but substituting gluten-free pasta and pizza crusts so he won't be so upset about the change in the diet. Try it for a couple weeks or so and then reintroduce gluten to see if you can notice any difference in behavior and intenstinal symptoms.

So it wouldn't be unusual for all of us to have it???????  My brother would be the only one left and who knows with him as he is the typical male and wouldn't go to the Dr. if he was half dead. 

It jsut seems so strange that all of  our "problems" could be so easily fixed if we all ahve this, by adjusting our diet.

Would I talk to my rhuematologist about this????  Can he order the blood tests and etc???  Or do I need to go to a GI doc for testing????

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If you have a good relationship with your RA Dr., I'd start there. If he won't order the tests, have him give re: a GI And from all of your symptoms and heritage, celiac disease would be a likely candidate. If your dr's don't think that celiac disease can do all this, have him/her go the NIH digestive issues - very informative. There is a lot of things that are not really understood about autoimmune disorders. Why they happen in the first place, for one. And it has been discovered that if one member has one AI, then others disorders may piggyback on the first one. And celiac disease and RA combined is rather common. So are diabetes and problems with thyroid, and Sjorgens syndrom. And first degree relatives will usually have a high incident of having the same problems. But then there's me, (mother 100% Swede, Father german, scotch) and the only one on both sides of the family with celiac disease. Go figure.

HI  you all, I want to ask a question. I have heard you all talk about depression and triedness. will you give me some details. you got some gluten and how long befor you got extremly tired or depressed.? Have you had major depression through the years that you have tied to this or tiredness. I am new so I an just learning. I was on anti depressants for years. prozac and all kinds. On anbien for sleep but still couldnt sleep.  Got fat weight 190 lbs. now I am down to 138lbs but I was so sick and lost it so fast. I am just wondering where all this fits in. Thankyou for all of you helping me.

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You all? You all from the South? Just joking . When I get glutened, it depends on the amount and time since my last glutening. Usually within 12 to 24 hours I'd get that horrible fatigue where I felt like I was wading through molasses. And the depression would last at least 36 hours. But I've been on Zoloft for 5 years, which was 4 years after I developed celiac disease. Just this week, after finally eliminating gluten from my diet (all those pesky hidden sources ) I thought I'd try cutting back on the meds just to see how much of the depression was from being glutened and how much was intractable depression, otherwise known as dysthymia. And I got my answer - can't go off meds. But now I know. But when I get glutened, the depression is stronger than what Zoloft can handle so I just have to tough that out until it lifts and I can get back to my "normal" state, If that makes any sense The longer you go gluten-free, the more healing takes place and you will feel your energy come back and you mood lift somewhat (don't know if your depression is from celiac disease or other causes). But the thing is to be 100% gluten-free. Hope this helps

Hey, I was just wondering if anyone knew if smirnoff ice coolers have glutten in them.  what other drinks aare safe.  I know not beer but how about vodka in general

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I emailed smirnoff's a while back. The coolers are made from malt, which is just the same as drinking beer, even though it isn't beer. I was informed from Smirnoff's that all except their Vodka products are not safe for those with gluten problems. Even though their vodka is made from grain, the distallation process removes the protein that causes reactions for those with gluten problems. I was hoping that other Smirnoff products went through a distallation process too, to make them safe for us, but nope That would go the same for any of the clear beer products - zima, bicardi's, ect. The key word is MALT which is from barley, which is off limits to us.

I noticed something call glutimate (sp?) in some foods?

Is that like a gluten related thing or what?

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Glutamate is an amino acid and a building block of protein. It is used as a flavor enhancer and is gluten-free.

Sorry to rant being so new to the board and all, but UGH!! I called my PCP yesterday morning to request some blood work and he has yet to call back I called again today and was told he would call back between 12-8 p.m. and I never recieved a call. Did any of you have a problem with your doctors and them not calling back?? I just feel especially anxious because I have an Infectious Disease Appt. for my 15 month old in a week and I would hate to put her through more unneccessary tests if at all possible:( Again sorry to rant, I am just frustrated Thanks for listening

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Ranting is fine here, esp when it comes to the medical community. I'm sure on the average the medical community is caring and professional, it's just that this is a field where a slip up can be fatal!! It's frustrating I know. I guess call them back and ask why your messages aren't being written down and acted on. I've had to deal with insurances over the phone for years - You learn to keep a log on who you spoke with and when and what was said.

This is my first time to this forum so forgive me if I seem like I don't know a thing about celiac. I was diagnosed about 2 years ago by a biopsy and really wasn't given much information. I know that I have had a problem for at least 20 years (I'm 33 now). To make a long story short...haven't done a gluten-free diet at all...just started reading up on it....I have really bad symptoms which I know I have to do my part to stop the damage and I plan on it starting now...my question is... can having gluten in your diet cause you not to be able to concentrate? Some days are terrible. I ate a blueberry muffin this morning, got a terrible stomach ache...all of the normal symptoms...running to the bathroom....but I've noticed that I have had a terrible time concentrating. Just curious, maybe I'm just getting older.  I've noticed the bad concentration usually comes when I have all of the other symptoms.

I will try to educate myself more by reading up on the forum and I really am going to start now on getting better. Thanks for your time and comments.

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The gluten-free diet to the newbie sounds like a deprivation diet. I can understand your unwillingness to jump into it, but it is the best way to go. The relief you feel from your symptoms and getting your life back will more than make up for going without gluten products. It is tricky, confusing and maddening at first, but after awhile it will become second nature. There are lots of substitutes out there, and just like mainstream foods, some are better than others. Also, after awhile of being gluten-free, your taste buds will sort of forget what the real stuff tasted like. But for me, getting my energy back, my brain clear (as an accountant, you sure can't be fuzzy about numbers) and my over all increased enjoyment of life is more important than any gluten containing product. And the physical consequences of NOT going gluten-free can be very severe. Sorry to preach so much, but it's only because I/we care here, and want everyone to be as healthy as possible. Are you considering the gluten-free diet in the near future, like ten minutes from now? We're here for you to ask any questions (none are too silly or personal) and to give you all the help and support you may need. Take care!

The hair loss, fatigue, diarrhea, and possibly dh makes me suspect celiac disease. Or at least gluten problems. My mother is diabetic and doesn't have the stomach problems you describe, although both diabetes and celiac disease are autoimmune disorders and it's possible to have both.

The first part of the gluten-free diet seems easy, but it's complicated. No gluten. Eliminate wheat, rye, oat, and barley. That also means spelt, triticale, and a couple of other grains that sound wheat free, but contain gluten. No beer. No malt, malt flavorings. But what you get in return is an education in how over processed commercial foods are. Go with things as close to natural as possible. I'm sure Katie will come in and let you know about her links to lists that will help a lot. It's a doable diet, at first it's overwhelming, but after awhile, it'll be second nature and just a way of life. Promise.

When do you think you'll try the diet? It may take a few weeks to months to feel improvement, but hang in there.