Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

TruckerBird

Do I Have Celiac? I Am Confused

Recommended Posts

Hi, I have been reading your forum for the past 6 weeks while waiting for tests and results. I tested positive for celiac with my bloodwork, but the upper gi didnt show any inflammation on the biopsy, dr says that means negative, so he says I dont have celiac. I did some looking online and came across " Latent Celiac" which is positive bloodwork and negative biopsy. I had my gall bladder out last year and since then have lost 15 pounds and GAINED a full pant size because my belly is bigger then before. I was having alot of stomach pain thru Christmas, then the pain stopped.( with a dose of prescription probiotics)( and eating better food) I do still have bathroom problems, so dr has put me on cholestryamine, which seems to be helping alot.he said that would bind the bile. But I am still bloated and it is frustrating. Sometimes its likeI feel like i am crazy, I know something is not right but cant figure it out. They did a gastric emptying study and a test for crohns, they came back normal. After reading about latent celiac, i decided to try a gluten-free diet, which I have been on for 7 days now, the only difference I can tell so far is I dont have major pickle cravings now, so thats one change that the diet has brought about. Today I feel frustrtated, I am not sure if the diet is helping or not. I wonder if I have celiac or not. I do like this dr alot more then the 1st GI dr that told me " womens bellys just dont go down". I have really enjoyed reading your posts and I can tell yall know ALOT about this, I would really appreciate any help or ideas. Today I wanted to stop the diet but I held strong. One thing about eating gluten-free, its not so easy being a truck driver that stays out 6 weeks at a time, me and hubby dont stop alot or stop at truck stops too often, I do have a mini rice cooker , I am using that alot right now :) Thanks for listening to me, maybe I am not crazy , Birdie

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Hi, I have been reading your forum for the past 6 weeks while waiting for tests and results. I tested positive for celiac with my bloodwork, but the upper gi didnt show any inflammation on the biopsy, dr says that means negative, so he says I dont have celiac. I did some looking online and came across " Latent Celiac" which is positive bloodwork and negative biopsy. I had my gall bladder out last year and since then have lost 15 pounds and GAINED a full pant size because my belly is bigger then before. I was having alot of stomach pain thru Christmas, then the pain stopped.( with a dose of prescription probiotics)( and eating better food) I do still have bathroom problems, so dr has put me on cholestryamine, which seems to be helping alot.he said that would bind the bile. But I am still bloated and it is frustrating. Sometimes its likeI feel like i am crazy, I know something is not right but cant figure it out. They did a gastric emptying study and a test for crohns, they came back normal. After reading about latent celiac, i decided to try a gluten-free diet, which I have been on for 7 days now, the only difference I can tell so far is I dont have major pickle cravings now, so thats one change that the diet has brought about. Today I feel frustrtated, I am not sure if the diet is helping or not. I wonder if I have celiac or not. I do like this dr alot more then the 1st GI dr that told me " womens bellys just dont go down". I have really enjoyed reading your posts and I can tell yall know ALOT about this, I would really appreciate any help or ideas. Today I wanted to stop the diet but I held strong. One thing about eating gluten-free, its not so easy being a truck driver that stays out 6 weeks at a time, me and hubby dont stop alot or stop at truck stops too often, I do have a mini rice cooker , I am using that alot right now :) Thanks for listening to me, maybe I am not crazy , Birdie

Welcome to the Board!

And yes you are not crazy! At least half the time the docs can't find the damaged villi with an endoscopy. They often miss the actual sites by not going in deep enough.

One week is definitely not enough time to figure this out. Make sure you get rid of old food prep tools that have absorbed gluten, like wooden cutting boards, wooden spoons etc., pot holders and toasters. I would give it at least 3 months although for some it takes even longer.

Gluten is hidden in a lot of things--they can even be in your vitamins. There is info here to that effect as to what to avoid--just check out the Celiac Disease Info. You also need to ask your husband to wash his hands and brush his teeth after eating gluten before kissing. Sorry about that--but I speak from experience.

Its hard to be on the road with this condition. But it sounds like you are resourceful. Do you have a small refrigerator in your rig? There are various alternative grains you can look into. Try to get ones that are packaged and specifically say gluten free. Meanwhile veggies, root vegetables and squash, meat and fruit should be the main basis for your diet. Brown rice is usually better than white...but white rice is way better than wheat, rye, oats or barley...

Good luck! And welcome...


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

Share this post


Link to post
Share on other sites

Join eNewsletter

Thanks for the info and the encouragement, I am using rice and veggies (raw is easiest to get) and fruit and some yummy gluten-free bars that arent too sweet ( my tummy doesnt like super sweet stuff), the hardest thing is not being able to fix a quick sandwich and hop in the drivers seat and take off. I am experimenting with plain rice cakes and corn tortillas, but the tortillas are taking some getting used to, I used to love the flour ones hahaha, today at the truck stop, I had a steak with no seasonings, it was good. :) Birdie

Share this post


Link to post
Share on other sites

Join eNewsletter

Do you know which blood tests were run, and which ones were positive? Some of the tests are more specific for Celiac than others.

Were you eating gluten at the time of the testing?

Do you know how many biopsy samples were obtained during the endoscopy? If too few samples were taken, it can lead to a false negative, as Celiac is a "patchy" disease.

Share this post


Link to post
Share on other sites

Join eNewsletter

I should have brought my lab results in the truck with me, ( all I recall seeing was one test that had a normal range of 5-8 and mine was a 10, and it showed positive under the summary)I wont be home for 3 more weeks, and yes i was eating glutens at the time. I will ask my dr when I see him at that same time how many samples did he take. I will continue the gluten-free diet, I am looking thru the forum now for ideas to add to my rice, I do have a small fridge but cant always get to a food store on a regular basis. Birdie

Share this post


Link to post
Share on other sites

Join eNewsletter

Birdie,

I am in the same boat as you - positive bloodwork, negative biopsy - and I have been gluten-free for just over a month now. It is astounding what a difference it has made.

Remember as well that it is quite common to find that you are sensitive to other things (I cannot tolerate soy, sulfites or casein) during the first wee while of recovery. It's just something to be aware of - I found making a Food Diary really helped, as it enabled me to track the specific foods that cause reactions - and, just as importantly, those that I can handle!!

Good luck and welcome!!

xo

Share this post


Link to post
Share on other sites

Join eNewsletter

I am not sure about caseins, I dont know much about that yet. But I know I seem to be lactose intolerant,( this started about 1 year before my gall bladder attacked me) milk , ice cream and any kind of whipped topping, is a bad thing. I am sensitive to chocolate also. I wonder if I should give up cheese for now? It doesnt seem to bother me when I have it though. Birdie

Share this post


Link to post
Share on other sites

Join eNewsletter

I am not sure about caseins, I dont know much about that yet. But I know I seem to be lactose intolerant,( this started about 1 year before my gall bladder attacked me) milk , ice cream and any kind of whipped topping, is a bad thing. I am sensitive to chocolate also. I wonder if I should give up cheese for now? It doesnt seem to bother me when I have it though. Birdie

If your bloodwork was positive, you have Celiac Disease....period. What a negative biopsy means is that the damage has not become bad enough yet for the doctor to find it on the biopsy, which is a good thing because your small intestine hasn't been trashed yet. You caught it early. The only Celiac that a doctor will officially diagnose are those that go to end stage and make it easy for the docotr to find. All those that fall into your category are msidiagnosed as not having it when you do.

The lactose intolerance is common with Celiac also so that is another clue. You may want to cut that out for awhile until you heal and then try it again in small doses and see what happens. Trust your instincts with this and your blood work and ignore the doctor!

Share this post


Link to post
Share on other sites

Join eNewsletter

I have questions about whether or not I have it also. Had bloodwork and upper endoscopy last year, both negative. According to my primary doc, the blood work wasn't even close. Just had another upper scope, they( GI doc office) call me and tell me it's probably celiac,and I need to see a dietician, but theywant to do more bloodwork to confirm and negative again ( I think, haven't heard for sure) then I talk to the GI doc and he says my villi were not flattened out or shortened , only the very tips (lymphocytes) were slightly inflamed, which could have been anything and will wait for bloodwork to come back to confirm. Of course he's been on vacation this week.in the meantime, I have been eating gluten free for the last 2 weeks, the first week sucked trying to find stuff to eat. this week is much better, just wish the gluten free srtuff was a little cheaper.

Share this post


Link to post
Share on other sites

Join eNewsletter

Hi, I have been reading your forum for the past 6 weeks while waiting for tests and results. I tested positive for celiac with my bloodwork, but the upper gi didnt show any inflammation on the biopsy, dr says that means negative, so he says I dont have celiac. I did some looking online and came across " Latent Celiac" which is positive bloodwork and negative biopsy. I had my gall bladder out last year and since then have lost 15 pounds and GAINED a full pant size because my belly is bigger then before. I was having alot of stomach pain thru Christmas, then the pain stopped.( with a dose of prescription probiotics)( and eating better food) I do still have bathroom problems, so dr has put me on cholestryamine, which seems to be helping alot.he said that would bind the bile. But I am still bloated and it is frustrating. Sometimes its likeI feel like i am crazy, I know something is not right but cant figure it out. They did a gastric emptying study and a test for crohns, they came back normal. After reading about latent celiac, i decided to try a gluten-free diet, which I have been on for 7 days now, the only difference I can tell so far is I dont have major pickle cravings now, so thats one change that the diet has brought about. Today I feel frustrtated, I am not sure if the diet is helping or not. I wonder if I have celiac or not. I do like this dr alot more then the 1st GI dr that told me " womens bellys just dont go down". I have really enjoyed reading your posts and I can tell yall know ALOT about this, I would really appreciate any help or ideas. Today I wanted to stop the diet but I held strong. One thing about eating gluten-free, its not so easy being a truck driver that stays out 6 weeks at a time, me and hubby dont stop alot or stop at truck stops too often, I do have a mini rice cooker , I am using that alot right now :) Thanks for listening to me, maybe I am not crazy , Birdie

Trucker bird, I too had my gallbladder out and have had problems since, particularly with reflux. I see your doctor put you on Cholestryamine, which is the stuff you drink right ? Namebrand, Questran ? I didnt like that stuff so my doc gave me a pill called Wel-Chol which does the same thing only isn't like drinking orange flavored sand. It works pretty well and you take it before meals. I've found I generally only need one a day.

Share this post


Link to post
Share on other sites

Join eNewsletter

I should have brought my lab results in the truck with me, ( all I recall seeing was one test that had a normal range of 5-8 and mine was a 10, and it showed positive under the summary)I wont be home for 3 more weeks, and yes i was eating glutens at the time. I will ask my dr when I see him at that same time how many samples did he take. I will continue the gluten-free diet, I am looking thru the forum now for ideas to add to my rice, I do have a small fridge but cant always get to a food store on a regular basis. Birdie

Welcome TruckerBird,

You are in the right place for information and support, as well as venting :) . Gluten is everywhere! Read labels a lot. This site has a good link to Clan Thompson's Celiac site, there you can get a product list of foods as well as over counter meds, personal need items that are gluten-free . (their site has a freebie mini list of gluten-free items, foods ) I do realize that being in a "truck" and on the move all the time, it must be really difficult, especially for those who are celiac.

I agree with the others, if the blood works are indicating celiac, than you are. As Gemini mentioned, the villi biopsy means that it has not reached a point of damaging stages. The earlier you catch it the better :)

I realize it might be hard to stop with the trucking. But, try if you can to stop at Health Food Stores, or Organic Stores, they usually have some gluten free foods. One Organic Market I go to, had a ton of gluten free foods, etc. Unfortunately gluten free breads don't have great refridged life, one week at most. Does your mini fridge in your truck have a freezer storage? Gluten free cereals are also good for "on-the-road."

When you return home, try to stock up on those type of dry shelf food items, that you can take with you. In the meantime read labels a lot, take safe bets like the meats (avoid sausages, hamburgers - as they often use gluttened fillers) and eat your fruits and veggies.

This site has a ton of resources, from recipes to discussing symptons. Welcome again to the "gluten free gang" so to speak. Bottom line, doctor confirmed or not, if you feel better being gluten free, than listen to your body! It's your body, and you know how it reacts.

hugs


44 yr old mom, SAHM (stay at home; aka a Retro Mama :D , 2 special needs kids dd 15yrs ds 4 yrs

Follows Compassion Rules "Treat others; they way you wish to be treated"

blood test negative: celiac However, doctor felt other factors in blood works warranted trying the gluten-free diet

April 7/08 Doctor confirms gluten intolerance/ remain gluten-free for 2 more months; and repeat tests

Gluten free since March 4/2008 (other than accidently, or unknown gluten used--- its a learning process, Gluten is everywhere!)

"People are like stained-glassed windows. Best viewed in the light!" unknown author

"I am only as strong as the coffee I drink, and the hairspray I use" :)

Share this post


Link to post
Share on other sites

Join eNewsletter

Hi Birdie

It does sound like you have Celiac - your doctor is not right to assume you you haven't got it just because the biopsy was negative.

I noticed you said that you have problems with sugar and dairy both of which are di-saccharides (double molecule sugars).

What is happening is that whilst mono-saccharides (single molecule sugars - vegetables, fruits, honey and nuts) are generally well absorbed by the gut, due to the damage in your gut the enzymes that would normally be produced to break down the more complex sugars are either very lacking or missing completely. Without those enzymes the digestion cannot break down the di-saccharides or poly-saccharides (multiple molecule sugars such as grains and starches) into mono-saccharides.

Because they are not properly digested, they then encourage bacterial overgrowth (Candida or similar) which causes them to ferment in the gut and that then triggers the discomfort and bloating in the stomach.

If you can manage it, you may be better off just sticking to the mono-saccharides for a while to give your gut the best chance to heal so that you can then cope with some dairy, sugar, grains and starches at a later date. The more we eat these foods that cannot be digested properly the longer our guts will take to heal.

You know, I am amazed at the amount of people I have come across on here who have had to have their gall-bladder out, and many of them at a pretty early age, too, even in their 20's or younger. There has to be a connection there somewhere. I am sure that eating not just gluten, but the quantities of dairy, sugar and other more complex carbohydrates that is consumed in our 'western' diet must contribute to the formation of liver and gall-stones somehow.

Just after I went gluten-free, dairy free and dropped most carbs and sugar, my liver cleared out. It was a bit frightening at the time but I could feel stuff moving down the tubes inside! I had been taking some Milk Thistle capsules, which are a good liver tonic and I am sure that and the diet helped to clear it out. It settled down after a few days and an ultrasound revealed that I had no gallstones - the GB was empty! I did see something in the toilet previous to that that I now think may well have been gall-stones so it looks like the Milk Thistle kicked them out too!

Anyway, I hope you are able to work out an easier way to manage your Celiac. It can't be easy when you are on the road constantly, and only have a limited choice of places to stop. The 'greasy spoons' aren't necessarily going to be a goldmine of gluten-free choice!


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

Share this post


Link to post
Share on other sites

Join eNewsletter

Hi, I have been reading your forum for the past 6 weeks while waiting for tests and results. I tested positive for celiac with my bloodwork, but the upper gi didnt show any inflammation on the biopsy... I do still have bathroom problems, so dr has put me on cholestryamine, which seems to be helping alot.he said that would bind the bile. But I am still bloated and it is frustrating.... I wonder if I have celiac or not.

Hi Truckerbird!

I have been exactly where you are now. I lost the gallbladder and took the c-powder (I used to call it magic powder!) That powder does help, but it is not a permanent solution. I took it for about 4 months. What it does is lower your cholesterol, which if you have celiac, is already going to be low.

Your body does need some cholesterol to function-- the brain is almost all cholesterol.

I too had a high positive on the bloodwork and a negative biopsy (but he did see inflammation-- just not stunted villi.) They told me I therefore could not have celiac and released me into the wild. That was eight years ago. During those eight years all sorts of bad symptoms appeared-- infertility, a hysterectomy and DH (a horrible itchy, blistery skin condition,) heart problems and almost daily migraines. I do suspect that if they had gone with celiac 8 years ago I would not have suffered as much. I hope you do not let that happen to you. The bloodwork test is 100% specific and 90% sensitive. There is no such thing as a false positive.

Eight years later I had a positive biopsy from the skin. You need to nip it in the bud.

Stick with the gluten-free diet. It can take quite a while for symptoms to clear. But if I were you, I would consider myself a celiac.

Good luck,

Lisa

Share this post


Link to post
Share on other sites

Join eNewsletter

Wow, yall are awesome and the info that has been posted is super, I am reading it a 3rd time to make sure i understand and dont miss anything. my total cholesterol has been around 195 for a long time and the other numbers are ok except my triglycerides are very high 275- 350, my blood sugar has been ok at 85. I hadnt thought about sugar being bad but it makes sense so i will cut out the sugar i was putting in my green tea( i like hot tea when i am driving, i dont need caffeeine, i have the energy of 2 people)(actually its more like a unusually high amount of energy, my mom is that way also) and i will stop the cheese slices as a snack. I was wondering if the dr would keep me on the C-powder, but with the diet changes maybe i wont need it in time. It is working wonders for me. thank yall soooo much Birdie ( i am 46 by the way)

Share this post


Link to post
Share on other sites

Join eNewsletter

Wow, yall are awesome and the info that has been posted is super, I am reading it a 3rd time to make sure i understand and dont miss anything. my total cholesterol has been around 195 for a long time and the other numbers are ok except my triglycerides are very high 275- 350, my blood sugar has been ok at 85. I hadnt thought about sugar being bad but it makes sense so i will cut out the sugar i was putting in my green tea( i like hot tea when i am driving, i dont need caffeeine, i have the energy of 2 people)(actually its more like a unusually high amount of energy, my mom is that way also) and i will stop the cheese slices as a snack. I was wondering if the dr would keep me on the C-powder, but with the diet changes maybe i wont need it in time. It is working wonders for me. thank yall soooo much Birdie ( i am 46 by the way)

Go Birdie!


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

Share this post


Link to post
Share on other sites

Join eNewsletter

few things to share, might be helpful for you - (wow this ended up being long...apologies)

chocolate sensitivity - me too! It comes and goes in my life. I know I'm not good with caffeine (neither can most females in my family, and like you I don't need it for the energy) - even green tea will make me a little buzzy in head/cranky to others (it's lower in caffeine than most teas, but still has some). Also for a while I think chocolate was fighting with my birth control hormones - I swear I read an article 10-15 yrs ago that many 1st trimester pregnant women can't tolerate chocolate either (I googled for this recently and couldn't find it). It was either extreme caffeine reaction (3a.m. and still awake, after a small piece of chocolate at 5pm) or if more chocolate and after dinner, vomiting followed by just about passing out. Now that I'm off birth control, I can tolerate chocolate (but still not caffeine in tea or coffee). Or maybe the chocolate tastes so good that I don't get cranky ;)

Food on the go -

Bars,you said some bars were too sweet for you, you may be a 'super taster' (about 1/4 of the world is - lots of taste buds, sweet and salt are much stronger for them than for the other 75% of people). Anyway, look for the Lara Bar brand at health food stores, these are bars with some very simple ingredient choices (one is just dates and cashews, another dates, pistachios and cashews) - kind of like a fig newton filling, and not as sweet as most (although the dates are pretty sweet). My husband loves the chocolate banana one, but you may want to skip that!

Cereal - it was a challenge to find cold cereal that is gluten-free and not too sweet - just recently got Erewhon crispy brown rice (like rice crispies) at Whole Foods, yummy for me. All the gluten-free corn flakes I find seem to be sweetened a lot. Puffed rice is a little too plain, but a pinch of salt helps a lot.

Sandwich substitutes - Tortillas maybe get easier? For lunches I often cook up a batch of chicken then portion it out; this may sound crazy but if I'm on the go I have been known to eat it right out of a plastic sandwich bag-no fork or bread needed. I don't know how well they travel, but you could try making arepas (venezualan corn cakes - basically corn meal, a very little water so stiff batter, then fry or grill flattish 4" rounds) - slice them and fill with any sandwich filling, might work to make ahead and use the first few days of a trip.

rice and other grains - hey, the mini rice cooker is cool! Try different kinds of rice for variety (check out the asian or hispanic sections of the grocery store too), try grits or polenta (I don't have a rice cooker but some folks tell me these work great in one) and if you can find cook-and-eat quinoa try that in the rice cooker too (bulk quinoa has to be rinsed etc, cook-and-eat you can just use right out of the box) - quinoa is almost like cous-cous or little round pasta, but is pricier than grits

Stores - my friend just told me that Expect Discount now has a gluten free section, there is one in Milford CT near I-95 and it is a part of a chain. Also WalMart foodstores and Wegmans if you come across them have gluten-free items clearly labeled.

Good luck with the diet Birdie! None of my tests were positive, but my dietary response to gluten is, er, striking so I am definitely sticking with it. Would rather be healthy and comfortable than diagnosed later with damage :)


gluten-free (except unintentionally) from 7 Dec 2007

3 gluten-free cousins and counting (1 gold standard, 1 pos blood/no endo, 1 self/dietary diagnosed)

suspect mother was celiac (also, cousin suspects my mother's twin is celiac)

Feb 08 testing 'normal range' for gluten antibodies, IBD and food allergies

Staying off gluten - dietary reaction is compelling for me!

"Hi, I'm the gluten-free diner at your table."

Share this post


Link to post
Share on other sites

Join eNewsletter

few things to share, might be helpful for you - (wow this ended up being long...apologies)

chocolate sensitivity - me too! It comes and goes in my life. I know I'm not good with caffeine (neither can most females in my family, and like you I don't need it for the energy) - even green tea will make me a little buzzy in head/cranky to others (it's lower in caffeine than most teas, but still has some). Also for a while I think chocolate was fighting with my birth control hormones - I swear I read an article 10-15 yrs ago that many 1st trimester pregnant women can't tolerate chocolate either (I googled for this recently and couldn't find it). It was either extreme caffeine reaction (3a.m. and still awake, after a small piece of chocolate at 5pm) or if more chocolate and after dinner, vomiting followed by just about passing out. Now that I'm off birth control, I can tolerate chocolate (but still not caffeine in tea or coffee). Or maybe the chocolate tastes so good that I don't get cranky ;)

Food on the go -

Bars,you said some bars were too sweet for you, you may be a 'super taster' (about 1/4 of the world is - lots of taste buds, sweet and salt are much stronger for them than for the other 75% of people). Anyway, look for the Lara Bar brand at health food stores, these are bars with some very simple ingredient choices (one is just dates and cashews, another dates, pistachios and cashews) - kind of like a fig newton filling, and not as sweet as most (although the dates are pretty sweet). My husband loves the chocolate banana one, but you may want to skip that!

Cereal - it was a challenge to find cold cereal that is gluten-free and not too sweet - just recently got Erewhon crispy brown rice (like rice crispies) at Whole Foods, yummy for me. All the gluten-free corn flakes I find seem to be sweetened a lot. Puffed rice is a little too plain, but a pinch of salt helps a lot.

Sandwich substitutes - Tortillas maybe get easier? For lunches I often cook up a batch of chicken then portion it out; this may sound crazy but if I'm on the go I have been known to eat it right out of a plastic sandwich bag-no fork or bread needed. I don't know how well they travel, but you could try making arepas (venezualan corn cakes - basically corn meal, a very little water so stiff batter, then fry or grill flattish 4" rounds) - slice them and fill with any sandwich filling, might work to make ahead and use the first few days of a trip.

rice and other grains - hey, the mini rice cooker is cool! Try different kinds of rice for variety (check out the asian or hispanic sections of the grocery store too), try grits or polenta (I don't have a rice cooker but some folks tell me these work great in one) and if you can find cook-and-eat quinoa try that in the rice cooker too (bulk quinoa has to be rinsed etc, cook-and-eat you can just use right out of the box) - quinoa is almost like cous-cous or little round pasta, but is pricier than grits

Stores - my friend just told me that Expect Discount now has a gluten free section, there is one in Milford CT near I-95 and it is a part of a chain. Also WalMart foodstores and Wegmans if you come across them have gluten-free items clearly labeled.

Good luck with the diet Birdie! None of my tests were positive, but my dietary response to gluten is, er, striking so I am definitely sticking with it. Would rather be healthy and comfortable than diagnosed later with damage :)

Here here and all that! Yes.

By the way, I actually saw rinsed quinoa in boxes at whole foods. Might be worth a try.

As far as pancakes, try teff mixed with quinoa or gluten free cornmeal or amaranth flour and a little potato or something to help bind it together (1 tsp). Its even better texture if you add some already cooked brown rice or quinoa or such like cooked grain. If you can tolerate yeast, you can put yeast in it like the Ethiopians. I can't however. Mashed potato or sweet potato or some squash or banana will do too as egg/milk subsititutes--say 2 tablespoons or less? Then of course some oil and water. I often use coconut milk. A dash of Applesauce can be used to make them more moist if needed. The Ethiopians actually use these teff pancakes as plates on which they eat their food, and then they eat the plate! so to speak. They store relatively well so make more that you can use later in the day (or the next etc.)

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

Share this post


Link to post
Share on other sites

Join eNewsletter

Wow , thanks so much again and no your post wasnt too long, all info is good and helpful. My hubby did find quinoa for me when we were home and it was yummy several different ways. unfortunately i did leave some gluten-free foods at home , thinking i didnt need them based on my drs visit. I also will eat right out a bag hahaha. I am used to fixing a sandwich and hopping in the seat, i miss that. I am still getting used to corn tortillas. yesterday wasnt a good diet day , but i have learned with me, if i blow it oneday, it just strengthes me the next day, i dont throw in the towel. I have thought to get a box of gluten-free cereal and use it for snacking on. my problem with sweet stuff is my tummy goes yucky, it seems to be like some granola type bars or a cinnmon swirl(which i would never eat) , a reeses is ok(but only a 2 pack) i am wondering if i could find a tea thats non caffeine but not a weird flavor. i will get some stevia as soon as i get to a decent store. i also wonder if different brands of corn tortillas hold up better then others.i will do some experimenting when i get home in 2 weeks. i like grits and oatmeal, i called quaker and they told me they dont have gluten in the flavors i like but there is the possiblity of cc, so for now i am not having either, til i am sure what i can have.(plain grits and raisin date instant oatmeal) they are great in the truck, so i must figure out if they will be ok to eat. i dont seem to be super sensitive to glutens, if i eat store bought bread i dont have a reaction, but bread from a breadmachine will bloat me, likewise potatoes augratin from a box bloat me fast. the other day at the truck stop, the waitress was laughing when i asked for applesauce instead of toast hehehe thanks so much for all this great info Birdie

Share this post


Link to post
Share on other sites

Join eNewsletter

Wow , thanks so much again and no your post wasnt too long, all info is good and helpful. My hubby did find quinoa for me when we were home and it was yummy several different ways. unfortunately i did leave some gluten-free foods at home , thinking i didnt need them based on my drs visit. I also will eat right out a bag hahaha. I am used to fixing a sandwich and hopping in the seat, i miss that. I am still getting used to corn tortillas. yesterday wasnt a good diet day , but i have learned with me, if i blow it oneday, it just strengthes me the next day, i dont throw in the towel. I have thought to get a box of gluten-free cereal and use it for snacking on. my problem with sweet stuff is my tummy goes yucky, it seems to be like some granola type bars or a cinnmon swirl(which i would never eat) , a reeses is ok(but only a 2 pack) i am wondering if i could find a tea thats non caffeine but not a weird flavor. i will get some stevia as soon as i get to a decent store. i also wonder if different brands of corn tortillas hold up better then others.i will do some experimenting when i get home in 2 weeks. i like grits and oatmeal, i called quaker and they told me they dont have gluten in the flavors i like but there is the possiblity of cc, so for now i am not having either, til i am sure what i can have.(plain grits and raisin date instant oatmeal) they are great in the truck, so i must figure out if they will be ok to eat. i dont seem to be super sensitive to glutens, if i eat store bought bread i dont have a reaction, but bread from a breadmachine will bloat me, likewise potatoes augratin from a box bloat me fast. the other day at the truck stop, the waitress was laughing when i asked for applesauce instead of toast hehehe thanks so much for all this great info Birdie

If when you have a chance and go to a place that sells real herbs, you can roast or maybe even pan roast chicory and dandelion and make that as your source for tea. Get the cut up herbs rather than the powder. You can boil it like coffee actually. Its very good for your kidneys yet has a good taste. It will help your body deal better with the leaky gut syndrome likely to be happening due to the villi being challenged. This then creates inflammation and excess toxins which then overloads your liver. Dandelion and chicory are liver cleansing herbs plus both help take down inflammation. They also replace the potassium usually lost in peeing.

Another nice herbal tea is rooibos. Its soothing and great for taking when you want to calm things down. Nice with stevia and a little coconut milk too. Its originally from South Africa. Easy to get teas are chamomile and peppermint--both soothing for the gut and nerves; another goody is lavender--very soothing of the nerves. Rosemary is similarly soothing and good for a tired brain. Both perks you up and soothes at the same time. Lavendar, rosemary, peppermint and chamomile are particularly nice together. Just pour hot water over them and steep. Generally 1 teaspoon herb per cup hot water.

Enjoy!

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

Share this post


Link to post
Share on other sites

Join eNewsletter

Wow, I was reading about leaky gut, I do have multiple cystine stones in both kidneys and am on meds for that to keep them from growing, since thats all they can do. The good thing is they dont hurt me :) I am amazed that neither GI dr has run a test on me for this. I think I need a different dr. Last year when they took out my gall bladder, I seemed to be healing just fine for about 3 or 4 weeks, then i felt like something was wrong,my tummy stayed bloated and i also had some tenderness at the site of the belly button, it took several weeks and tests for them to find a umbilical hernia, which i did get fixed this january, its sad when one gets happy at a test that shows something, but i knew something was wrong. just like i know something is wrong still but its not like the hernia, a imbalance makes alot of sense and its very consistent, my tummy never goes down, just gets very uncomfy with certain foods, thanks so much for helping me. Birdie

Share this post


Link to post
Share on other sites

Join eNewsletter

Wow, I was reading about leaky gut, I do have multiple cystine stones in both kidneys and am on meds for that to keep them from growing, since thats all they can do. The good thing is they dont hurt me :) I am amazed that neither GI dr has run a test on me for this. I think I need a different dr. Last year when they took out my gall bladder, I seemed to be healing just fine for about 3 or 4 weeks, then i felt like something was wrong,my tummy stayed bloated and i also had some tenderness at the site of the belly button, it took several weeks and tests for them to find a umbilical hernia, which i did get fixed this january, its sad when one gets happy at a test that shows something, but i knew something was wrong. just like i know something is wrong still but its not like the hernia, a imbalance makes alot of sense and its very consistent, my tummy never goes down, just gets very uncomfy with certain foods, thanks so much for helping me. Birdie

You are quite welcome Birdie. I have had so many problems myself that I don't even want to think about it. Amazingly I lucked out and found herbs really saved my life starting as a young adult. I got over major life threatening difficulties with my kidneys as well as the beginnings of skin cancer not to speak of other things related to celiac. Thank you Euell Gibbons (sp?) and Jeannie Rose for starting me down this path! I am actually working on a book so questions like this help me. I have a file I put all this stuff in.

The deal is that using natural methods is so much easier on your body plus it actually helps you heal and get over these conditions for the most part, unlike the usual methodology. Going off the gluten will help you get past so much all by itself. However its also good to do a bit more to make life easier/better etc. Avoiding other allergens from leaky gut is a big deal. You definitely should check into it as a possible extra dimension if just going off the gluten doesn't fix the whole thing.

I highly suggest you also use marshmallow root regularly--it soothes and heals both the lining of the G. I. tract and the kidneys. The powder is easiest--just mix a little in a small amount of water to make a paste, then add some more water and drink. Chase with more plain water. It gunks up other herbal remedies, so its better by itself. Or you can take caps. Boil if you must--but, if so, the whole root is better. Alternatively you can use corn silk as a soothing tea--though just for the urinary tract--including the kidneys.

Uva ursi will make it so infection and irritation will happen less easily in the kidneys. Its supposed to help when you have stones (as well as a UTI). Echinacea and/or yarrow will also help against possible infection.

Gravel Root, Hydrangea and Stone Root are all supposed to help dissolve stones.

Here's a recipe listed in David Hoffman's Holistic Herbal which he suggests should be drink 3 times daily--and later on as a preventive take once a day:

corn silk 1 part

gravel root 1 part

hydrangea 1 part

stone root 1 part

Boil and simmer all above ingredients except for corn silk 10 minutes. Then add corn silk and steep for 10 minutes afterwards. Or just use the marshmallow root powder separately instead--or boil marshmallow root with mixture but be sure its the whole root.

I was just reading (as you probably already know) its suggested you avoid eating much if any meat and other acidic food (like oranges, grapefruit and pineapple) as well as oxalic acid (spinach, rhubarb and chard). Apparently the acid helps form stones. Instead you should eat lots of low acid vegetables and fruits etc. I imagine beans are good assuming you can digest them. Anything low acid. Might be good to look up exactly what that would be.

Again hope this helps!

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

Share this post


Link to post
Share on other sites

Join eNewsletter

Birdie - hooray for you for getting closer to well! gluten-free may unmask other food sensitivities if you have them - there's a whole forum here on that alone ('natural flavors' always get me). Seems like a whole journey of self-awareness sometimes :)

As far as pancakes, ...Bea

Ooh yes, pancakes

I've had success following "blini" recipes (basically small, firm pancakes often served with caviar and creme fraiche) - look for recipes using all buckwheat flour (when buying buckwheat flour, read the labels to assure gluten-free -- there are many 'buckwheat pancake' mixes that have wheat flour as well as buckwheat in them). Traditional blinis are time consuming, as use yeast, whipped eggwhites, etc - but tasty.

Or I make a regular 'from scratch' pancake recipe using blend of 2/3 soy flour and 1/3 flax seed meal instead of the wheat flour called for. Less time consuming than blinis! (I still make the pancakes small, as they are stiffer than wheat flour pancakes). Caveat - some don't care for taste of soy flour or are allergic to soy, but I bet other gluten-free flours would work too. Since they are firm, you might be able to make extra & bring along on the road, I'm guessing they might last a week or so?

Somehow the first pancake or blini always takes forever, so I just put one on the grill the first round, then do more at a time in subsequent rounds. Yummy with any combo of butter, honey, syrup and or jam as toppings.

Tea, I actually usually drink hot water - plain! Okay, not most people's choice I know. There are decaff green teas, and lots of naturally decaff herbal choices.


gluten-free (except unintentionally) from 7 Dec 2007

3 gluten-free cousins and counting (1 gold standard, 1 pos blood/no endo, 1 self/dietary diagnosed)

suspect mother was celiac (also, cousin suspects my mother's twin is celiac)

Feb 08 testing 'normal range' for gluten antibodies, IBD and food allergies

Staying off gluten - dietary reaction is compelling for me!

"Hi, I'm the gluten-free diner at your table."

Share this post


Link to post
Share on other sites

Join eNewsletter

Hi Birdie,

First I want to say that I am very new here and very new to celiac so please don't go on my advice alone because I could be incorrect. Hopefully someone with a lot more experience will let you know if I'm right or wrong.

I noticed that you said augratin potatoes from a box causes you bloating. I just read a post on here the other day that certain brands or types of augratin or scalloped potatoes are gluten free. I think it was Great Value brand from Walmart but I'm not positive. I was very happy to see that because I love those. I haven't been to Walmart yet to check but you might want to check the labels on them. Maybe a different brand (gluten free) would be Ok for you. I wish I remembered where I read that so I could let you know. If I find it later, I'll post it here. I am going to also give up dairy for a few months until I heal so I won't be trying the potatoes anytime soon but I look forward to having them again one day.

Also, I'm not sure if you like pepperoni but as I was reading your thread, I went into the kitchen to get a snack and noticed that the Hormel pepperoni says gluten free. That might be an easy snack to eat while driving.

Good Luck to you. Everyone says that finding gluten-free foods gets easier. I hope so for both our sakes.

Share this post


Link to post
Share on other sites

Join eNewsletter

Let me add, you are NOT crazy. I went through the exact same thing...feeling like there were no answers, very alone. Use celiac.com it was the most helpful resource for me. Through internet research and a nutritionist it has taken a YEAR for me to be completely gluten free. I had to revamp my entire lifestyle and mindset on food. It took a lot of tears and a lot of adjustments, but I couldn't be happier, and neither could my stomach.

Being on the road presents a lot of gluten free options. I like to cook in advance and freeze meals. Look online to see if restaurants offer gluten free options as well. Outback Steakhouse, Caraba's, and P.F. Chang's are some of my favorites. Good luck and be aware of small things, you would never guess they have gluten in them, soy sauce, some gums, sauces, gravy, and salad dressing. Good luck.

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter