nettiebeads

I have gained twenty pounds with my diagnosis and have heard of this happening to others.  What's the cause?

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When were you diagnosed? I hate to tell you this, but celiac disease can cause weight gain for some. I know, I'm now 40lbs. overweight. I am losing it at the maddingly slow rate of 1 lb a month. I think it has something to do with the malabsorption - the body has been starved of nutrients, goes into super slow metabolism mode to keep itself alive, but doesn't switch back after the diet has been changed. Maybe that's a farfetched theory, but it, hey I haven't heard of any others. But a serious answer is that if you are eating gluten-free flour-based products, they are LOADED with calories. The substitute flours are denser, heavier and therefore pack a whole lot more calories than your regular wheat based products.

Flour is in clam chowder??? 

The whole time I thought I got sick only because of the breadbowl. I also got the same symptoms after eating potato soup at a restaraunt....does that have flour in it as well?  I wasn't gluten-free when I ate these things...just going back in my mind to all of the things that I ate which caused me to get sick.

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Typically all white sauces (the base for chowders and white soups and anything creamy) start with a roux which is melted butter thickened with flour. Wheat flour. I don't eat soups at restaraunts, period. Well, except for miso soup which is soy based, so long as there's no wheat noodles.

also, I have read that if you don't drink enough water your body will cling onto what's there, causing more, not less fluid retention. So drink lots of water! Also I think midol is not the best thing, I was reading it's too harsh of a diuretic and will flush all of the minerals out of your body along with the fluids. We sure don't need that!

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I know midol can be a little extreme, but if one is seriously uncomfortable to the point of not being able to sleep and in pain, you gotta do something now. But everyone is right on the carbs, juices, and good old water. I found that drinking ice water through a straw is easier - I get more down that way.

Maybe I need to be taking this advice. Does anyone know anything about why I have fluid retention? My legs and feet are really hurting right now 

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Take a midol. Seriously, it has something to stop the fluid retention. Do you have a dr you can talk to about this? I don't know all of your diet. Salt is a biggie - processed foods ALWAYS have sodium. Just a little sodium and I'm three pounds heavier.

I've recently gone gluten-free and am trying to regain my naturally darker complexion. I believe the malabsorption and deficiency has left me a little pale in the face. Anyone have any suggestions for how to speed up this process a bit. I'm taking the Utrition liquid multi:

Vitamin A (IU) 10000

Vitamin E (IU) 50

Vitamin D (mg) 400

Vitamin C (mg) 15000

Vitamin K mcg 78

Vit B1 (mg) 100

Vitamin B2 (mg) 100

Vitamin B3 (mg) 20

Vitamin B5 (mg) 100

Vitamin b12 (mcg) 200

Vitamin B6 mg 20

Folic Acid (mcg) 400

Biotin (mg) 300

Calcium (mg) 50

Magnesium (mg) 20

Potassium (mg) 25

And I take a 30 mg Zinc supplement. I'm also taking L-glutamine in 4.5 g and 2 g increments throughout the day. Does anyone have any suggestions for additional vitamins or supplements I might look in to speed up the process? Or is it just a waiting game?

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Patience, dear. How long have you had the malabsorption? How severe? celiac disease is an autoimmune disorder that affects everyone differently. I don't know how much research you have done, but are you sure you are totally gluten-free? That nasty gluten can hide in so many places and cross-contamination can happen easier than one realizes. (After 9 years, I joined this forum and found that I should have thrown away my wooden spoons ages ago). It looks like you're taking the full range (dr's permission?) And give yourself time.

THANKS! Even though I feel pretty savvy dealing with celiac disease when I eat out, every little bit to reduce the possibility of being glutenated helps! I love this forum!

Obviously a Celiac must stay gluten-free for life but I'm curious if its the same for intolerance. Does the immune system always react to gluten just as it does in celiac disease or does the problem correct itself after gluten is removed for some time? I'm not asking because I plan on testing my body in the future...I've been through enuff. I won't push it  ....just want to understand everything thats going on in my body.

Also its only been 6 days since my last bad reaction started so if I can manage to not have anymore *accidents* is it still going to take some time to heal? I have bad fluid retention...I think from malabsorption.  The fluid causes alot of pressure/headaches and its been there the whole 2 years I've been sick. Just wondering how fast I can start absorbing my food again and hopefully get rid of this fluid.

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oh yeah, it's for life. But then so are a lot of things, I think it could be worse. After you start feeling better it becomes more of an inconvenience than anything else on most days. Then there are days you feel so isolated so you come here to the board and vent. I had to go gluten-free 9 years ago and dealt with it on my own until just recently. This board has been a mental lifesaver. I have found that my body reacts a little differently to each accident since it depends on how long since the last accident and how much was accidentally ingested. You may have to take your diet way down to the basics because of damage. No milk products for awhile, easy to digest foods and such. Think baby - you are practically starting over, but it will get better.

[ It was one of those times when I gave the server my card, who got the manager, who talked to the chef and then came back to me and said "anything on the menu is out, but this is what we can do for you". They couldn't have been nicer.

This leads me to another question - anybody else out there start out asympomatic?  How much time went by before you developed symptoms?  I am terrified of the damage I may be doing due to being glutenized without knowing it.  I'm pretty sure I am being contaminated by the simple fact that I have a 5, 3 and 1 year old - my 1 year old is always sticking his hands in my face, grabbing my food, etc.  My five year old makes her own PB&J and may not be careful, plus we are all new to this celiac-thing!  Teaching sharing used to be a big topic in our house, and now I can't share and the kids are having a tough time with this (especially my three year old who doesn't understand "gluten allergy!) 

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I went gluten-free nine years ago, but just recently joined this forum. I'm finding out that I may have been glutenized without knowing it many times. Sometimes I'm darned sure where the contamination came from - I would count back 24 hours from an episode of diarhhea and realize what I ate. Others here seem to get sick right away. Other times I wouldn't have the diarhhea so bad, but would get that crushing fatigue. And still other times I wouldn't get either one of those two, but get extremely irritable for no apparent reason, and would really have to fight that one. One of the "fun" peculiarities of celiac disease I suppose. But since I've been reading other posts and realized that I may have been contaminated, I've been very religous about washing my hands, surface areas, thrown away the wooden spoons, and it has made a difference. I never thought about kids sharing their food, but I do remember that with my daughter, but that was before celiac disease. Can they "share" with a doll or stuffed animal instead of you? Maybe you're not "hungry right now, but Lovey would love to have a piece" would work. Gloves, I can see you doing the housework with latex gloves. Or better yet, have your husband do it! Right. It does get so tiring of having to be on your toes. Oh yeah, we don't have little kids, but sometimes friends and relatives bring theirs. So I have Play-Doh on hand. And just found out from this forum that it is a gluten source. Something my husband did know and I didn't, but who cleaned it up when the guests were gone? Alway something

Hello,

I have noticed a lot of people saying that they went from having diarrhea to being constipated after going gluten-free. I have been dealing with this now, as well. I was going to get some of the fiber pills, like Citrucel or Benefiber, but I was reading the instructions on them at Walmart yesterday and it says to take 2-8 pills a day. Before I go getting any, I was wondering how many some of you take every day to keep this problem under control? Thanks.

~Rebecca

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I love this forum, I'm finding out so many things after all these years.. I thought my constipation was related to my hysterectomy, but then I find out other people here have that problem. My gastroenterologist suggested Citrucel since that's what he uses and I use that now, occasionally. When I need it, I start out with two in the morning with water and then see what happens. If no luck, the next day I'll take two in the morning and two when I come home from work. That usually does it for me. But my problem is simply water - I don't drink enough plain water and drink tea and cokes - which don't help with hydration. I try to keep my roughage up with salads. Dried apricots help me too along with excersize to help keep things "moving" right.

Please try the diet. celiac disease is one of those autoimmune diseases that manifests itself in as many different ways as there are different people. The brain fog and lack of concentration is a good example. See, it isn't just that certain foods make you feel bad, it is also a malabsorption issue too. I find that one 200mcg of selenium helps me with concentration. It's cheap enough and you can find it at WalMart even. I have to brown bag for lunch - 1/2 hr for lunch and no eateries around. If nothing else, try rice cakes with pb. If you can stock your work space with that, then on bad days you would at least have something that is safe. Another issue is protein intake. I think the normal is 60 grams, Celiacs have to go higher, probably because of the malabsorption, or maybe something else. All I know is that I feel much better with more energy. Fish and chicken are good sources. Prowl the health food stores, you'll find stuff. Please let us know if you are having problems or successes after going gluten-free. After nine years I finally reached out because I was feeling so isolated because of celiac disease. In reading the posts, I found out that maybe I could STILL be getting cross contamination from the wooden spoons my husband (non celiac disease) and I were both using in cooking. Those went bye-bye last night. The celiac disease can be a major inconvenience, but it is possible to live with it and actually feel good. Hope this helps!

I would LOVE that recipe! I just told my husband yesterday that my recent craving is for chicken nuggets, fingers, etc.  Wow, you must have read my mind! I love this site!

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Sorry, he hasn't written down the receipe , but as soon as he does I'll email it to you. I go to receipe sites on line and adapt a lot of chicken receipes, and can find things that don't need breading. Found one for yummy mustard honey tenders. If something calls for breading I substitue cornmeal or crushed corn flakes. WalMart brand of cornflakes are very safe. I've always had a question regarding barley malt used as sweetener. Safe or unsafe

It might be prudent to have your Hemoglobin and Hematocrit checked after you have been gluten-free for a while, just to be sure your iron levels are ok.  (You can have these checked for free just by donating blood.)

Hope this information helps!

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Just tried to donate blood. Not enough iron (3rd time that's happened). But did find out that tea, regular or decaffinated, interferes with iron absorption. FYI

Hey all,

I am not feeling well at all today 

Only thing I can think of is that I got cross contaminated at McDonald's today at lunch...

I ordered a Quarter Pounder with Cheese (no bun)....

I told them that the bun couldn't even touch and they said ok..and I watched them make it... but I didn't see any contamination...could it have still been cross contaminated or maybe the pickles? I thought I read something on here that said Pickles were not gluten-free?? or are they??

and I got an order of Fries...

all i know is i feel like crap

Help....

should I just not eat at McDonald's, I seem to not feel well there a fair amount....

any ideas?

-Maya

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I've cut out Micky D's entirely. Even if you didn't see any cross-contamination, it could have happened before your order was done up. If buns were previously toasted on the grill and then your burger placed there...if a utensil was used to make a traditional burger, then used to make your order... if someone made a burger, then made yours with the same gloves on... Better safe than sorry and sick. I know the feeling though. Every time I eat out and am as careful as possible, there's that "what if" in the back of my mind and I'm mentally holding my breath until I know I'm in the clear. Of course, it could be that the food is just not setting well because of the celiac disease. There are times when I know I haven't been glutenated and foods that usually aren't a problem give me tummy upset. Then I'm on bland, easy digestable foods for awhile. No real rhyme or reason to it, it seems.

ok ya'll, I'm not sure how I can stress the importance of him getting tested to him... I keep asking him if he's set anything up with his doctor, and keeps telling me no.  we go back to school in about a week, and I really am worried about him not getting it done before then.  I've told him that it worries me, and that it's best that he does know, rather than wondering if he has it or not.  He tells me that he doesn't want to know (because he's afraid of the outcome), and he still has yet to set up anything.  Anyadvice on stressing the importance of the test without being to pushy about it would be great. thanks.

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Oh boy, is he a male!!! You have to approach it rationally. Either he has it or he doesn't. Only the test could 1) relieve his mind or 2) Let him know he has something that has to be dealt with. I remember when my dr. told me to go gluten-free. It only took me three days to feel better. In my mind, the pain, discomfort and fatigue are not worth the gluten. I've done pretty good at the negative association with gluten products (but if a pill ever comes out that negates the effect of gluten, I am at our local pizzeria pronto!!!) Has he read any of the posts here? Believe me, if he is celiac disease, the stress of school will aggravate it something fierce. That's another tactic you can use - if he wants to do well in school he needs to find out if he has celiac disease. The brain fog and fatigue can be nearly crippling!

Keep us posted! By the way, my husband (an ex-chef) makes the meanest "breaded" chicken tenders I have ever had in my life, even pre-celiac disease!! He's willing to share the receipe with anyone who would like to try and make them

Michele,

I don't think every celiac needs a multi-vitamin.  If you eat a well-balanced diet that includes good sources of iron, folic acid and B vitamins you probably will be fine.  The government requires the fortification of refined grain products because deficiency in the US used to be a problem.  In this day and age, with our abundant food supply in the US, most people probably get adequate amounts of these nutrients, even without fortification.

WHOLE GRAINS are the best source of the B vitamins, so make an effort to include brown rice and some of the whole grain gluten-free flours - sorghum, buckwheat, brown rice flour - in your diet.  Riboflavin (B-2) is found in dairy products, eggs and soy milk as well.  Nuts, sweet potatoes and pork are good sources of Thiamin (B-1). As far as iron - any fresh meat, fish, dark green leafy vegetables and legumes are good sources.  If you are a woman of child-bearing age, I would consider taking 400 mcg of folic acid daily.

It might be prudent to have your Hemoglobin and Hematocrit checked after you have been gluten-free for a while, just to be sure your iron levels are ok.  (You can have these checked for free just by donating blood.)

Hope this information helps!

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Donating blood is how I monitor my iron levels. I've been rejected twice as a donor for low iron. Since everyone is different and celiac disease affects everyone differently, an iron supplement (with ped/dr approval) I think would be fine. You sure don't want to let him get run down and lethargic. I find I do better (more energy and sense of well-being) on an OTC multi vitamin/mineral.

Hi Everyone- I'm just wondering if anyone has tried anything alternative while glutened. Something that increases your appetite and gives you pain relief. My mom took it when she went through chemo and I'm wondering if anyone has tried it for glutening. I normally would not but my last accident was so horrible that everything I usually do- ibuprofen, nausea drugs from ER, etc. did nothing.  Thanks, B

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I read in another forum some people use club soda to minimize the reactions. It's thought that the quinine may have some benefit. Of course, if I'm going to use club soda, I'd be downing it as a vodka collins

I've been gluten free for almost 3 weeks now and I always feel hungry...even after I've eaten I don't necessarily feel full...I wake up in the middle of the night with my tummy growling.  I eat in the morning and about 2 hours later I feel like I didn't eat anything at all....Did/does anyone else experience this??

Curiously,

~Erin

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OH yeah, I feel that too, even after 9 years of gluten-free. Sometimes I fight it, other times I give in. I think it's that malasborption thing, not getting enough of what the body needs. I've been needing to lose weight for the past 5 years, no success so far. It's that stupid hollow feeling in the stomach that just can't be satisfied. I haven't had much luck - just try to drink more liquids, gnaw on fresh veggies helps some. Anyone else?

I was thinking about this yesterday. I had to go gluten-free 9 years ago, and have always thought of myself as a person with celiac, not A celiac. I'm so used to it that I forget to mention it when a dr asks if I have any health problems. And once that was when I was seeing a gastroenterologist! (it was about something else entirely, but it came up in the course of the visit) He gave me a look like, Celiac IS a medical condition. Since I've been reading other posts in this forum I've become even more vocal about my condition when I eat out, am feeling much more in tune with my body and am wanting to take care of it properly, (it's got to last me a long time Since it's been so long I don't even think about when there's cake or cookies at work, it's just something I can't eat, people with other medical conditions have things they can't eat - diabetics, food allergies, etc.

Hey ya'll 

I feel like shi* today

BUT...at least I know why now.

I kept reviewing my diet for possible Gluten sources...I couldn't find anything that should be causing these Gosh-awful headaches, upset stomach, and fatigue.

Then it hit me.  I've been going out-to-eat ALOT recently, but I always get the same thing (which I thought was gluten-free)   

This morning I went back to the restaurant web-sites and reread their nutrition info.  I always get a grilled chicken salad w/Caesar dressing and French fries at Chik-fil-A (their site says the fries are ok) or I go to Wendy's and get a junior bacon cheeseburger with no bun and an order of fries....Ah HAH! 

I thought I had read that Wendy's used a dedicated frier, but when I went to their website, it did not list the fries as gluten-free and stated cross-contamination issues.

I'm so happy!  This is an easy fix...I just won't eat the fries anymore.

Well, now that I found my source, I'm hoping to recover shortly.  I am trying to cope though...I've got classes this weekend and my seizures have increased (not to mention feeling like shi* all week from glutening myself)

Good grief! Take care everyone.  -Julie

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I just ate out with coworkers - There's always that nagging "what if" even though I'm as careful as I can be and ask questions...

Okay, well I can't believe I have found this community so late in my Celiac life.  I was diagnosed with this drag of a disease when I was 8, and I am 21 now.  I'm gonna be upfront about this...I have hardly followed my diet at all.  I cut back on Gluten and wheat intake a bit, and have cut it off completely for a few weeks here and there.  But more often than not I find myself cheating instead of keeping on track. 

Honestly, I didn't think I have been suffering any symptoms and have been blaming alot of my own suspected problems on my being alone.  But after reading through some posts here briefly I realize my ignorance.  Sleeping is my biggest problem, followed by fatigue.  Although I am very athletic in physical sports (MMA Fighting) I always find myself shorter on energy and more prone to sickness than others.  My mottos have been "Suck it up." and "Whatever happens, happens."

Now, I fear I may have been causing myself some damage over the years.  The last two times I was properly drunk (no beer, all hard liquor) to the point throwing up something different has happened.  The puke was very red, I think it may have been blood because I didn't eat anything red in color.  I hope its not related to my failure to follow a gluten-free diet.

Well, I am looking forward to be part of this community.  And hopefully find some solace and motivation to "not cheat".

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You will find solace and encourgement here. I used to go ahead and eat wheat after I was first diagnosed. But then I decided the pain, fatigue and all the other symptoms just weren't worth it. It will take a while for your body to heal, but you will feel better. If you have to have your carbs, find a health food store and look for the gluten-free items, or order them off the internet, and learn to read those labels!

I'm with you, ShortStuff2309... i feel a strong need to vent lately too... i've been gluten-free for over a month, but the sight of pizza makes me want to cry, and people continue to eat it in front of me! i can't even watch a Pizza Hut commercial.  and that's just one of the things i miss -- there are oh, so many more. i take snacks places but the truth is i miss my old food! i want what everybody else is eating! juvenile? yes, but that's about all i can manage since i got my diagnosis last Wed.

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I was the same when I first had to go gluten-free. But then I started associating the stuff I wanted (bagels, cinnamon raisen bread) with the pain, diarhhea, gas and other "fun" stuff, the desire went away quickly. It got easier and for the most part I'm okay with it now, but every now and then I feel so isolated at company functions.

I, unfortunately, did not get the weight loss manifestation of this disease. One thing I have found that is recommended is to go high protein in your diet. It will help with your energy levels. And the flours used in place of wheat flour are denser and therefore higher in calories. All of the advice given here is from experience. This is an autoimmune disorder that affects each person differently as we all have a different physiological makeup. Good luck and keep us posted.

Years ago I had an internist dr that told me I could eat wheat again. So if dr's don't get it, regular people won't either. If you were diabetic, they wouldn't force sugar down your throat. It's an autoimmune disorder that, if you have the marker, can be triggered by stress at any point in your life. The most important thing is to keep yourself healthy for your baby's sake. Don't worry if family and friends don't "get it". If possible, download and print off any information you can to educate your family. Did you know that researches now think that as many as one in 133 people have celiac disease? (when I first started reading up on celiac disease the number was 1 in 500) Did you know that it is a trait shared by people with Northern European heritage? The hardest part of celiac disease is the constant reading of labels and being on your toes at all times to prevent cross contamination. But this is a wonderful forum and I'm sure you will find lots of support here and answers to your questions.

After going gluten-free how long should one expect it to take before anemia shows signs of recovery? makes a full recovery?

Thanks.

George

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Well, unfortunately that question cannot be answered by a definite number. There are many variables - how long were you being contaminated before going gluten-free? How long have you been gluten-free? Are you absolutely sure you're gluten-free? I had to go gluten-free 9 years ago and every now and then I still get cross contamination. Sucks. Anyhow, I try to give blood to our local drive and have been rejected twice for low blood counts. It's something you'll have to work on with your doctor. I've been taking a multi vitamin/mineral supplement religiously and can tell when I've forgotten it for a few days. This probably isn't the answer you were wanting, but the truth is that it's just another fun facet of celiac disease - constantly monitoring your nutrition intake and evaluating how well you're doing.