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Walter S

How Long Does It Take?

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I know it can take months to get better after starting the gluten free diet and I know that I could be getting glutened by accident either from hidden gluten or form CC, but it just seems to be taking soooo long to feel better and I am finding it so tough to be patient. Have others had that experience when they first went gluten free? How did you cope and keep your "cool" while you waited for your body to adjust with the gluten free diet? Am I likely to have stomach and bathroom problems everyday of my life or might a day come where my stomach can be "normal" for a day? On Sunday, I went to a Christening. I think I mentioned that in an earlier post. Well, at the reception afterwards of course there was a lot of food- buffet style. I had a piece of baked chicken that was marinated in lemon and a piece of sausage. I have been eating chicken lately so I think that was ok, but this was my first time eating sausage since I was diagnosed. Now, the piece of sausage I ate was truly the size of a quarter. That was it! It was so tiny, and I thought it was safe to eat, but since it was new to me I ate only that tiny piece. So, soon after I began to feel sick to my stomach. I wound up getting a ride (since I didn't drive myself) home from an acquaintance (just someone I know through my friend's wife and who I have seen at a few functions in the past) becasue she was the first to be leaving. I barely made the car ride home and she insisted on staying with me for a while since I was so sick. As soon as I got in the house, I ran for the bathroom to throw up. After that I was in and out of the bathroom with diarrhea for a long time. It was super nice of this person to stay a bit until I settled down, and I am grateful, but also this continues to be an embarassing situation for me also. Things have been so down fo rme lately all around that I just am losing my grip and patience! I need things to take a tuen for the better soon!

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Walter! You're back!

Okay, maybe I'm a bit too rigid here, but this would be my rule #1:

DON'T EAT ANYTHING YOU HAVE NOT PREPARED FROM SCRATCH YOURSELF. If you find yourself at a social function where food is served, pack something from home, and eat it at the buffet. It's really not that big a deal if you don't make it a big deal.

The chicken marinated in lemon was probably dipped in flour and browned before it was baked.

The sausage may very well have contained bread crumbs as a filler. Many sausages do.

Don't kick yourself, it's a very steep learning curve, as many here say! It took me weeks to figure out that Rice Krispies weren't safe.

It's also possible that you have other food intolerances, that might resolve if your poor tummy has time to heal.

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Hi Walter,

I can really relate to how you feel bc I am feeling the same way. I have been on the gluten free diet for a month now and still am not feeling better. It is very frustrating for me bc when I am sick (which is often) everyone around me keeps saying "well you didn't eat anything with gluten in it" or "shouldn't you be feeling better by now" ect... This makes me feel like they don't believe that I am really sick and that sucks. I wish SO bad that I was feeling better by now, but I am not. I feel like I am never going to feel normal again, but then again I don't really remember what it feels like to feel "normal". I am hoping to be feeling better in another month. I am trying to have faith and patients but am running low on patients.

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Hi, Mj25, welcome!

You might need to cut out some other foods to start with. Many celiacs are unable to digest millk products until their intestines have healed. Some are just intolerant to both gluten and casein.

And most of us found that eating a lot of gluten-free breads, cookies etc., in the same amounts as we had eaten the gluteny versions just didn't work for our tummies. I wasn't able to tolerate them until 5 or 6 months into the gluten-free diet.

Most of us had trouble finding the "hidden" gluten in items we were SURE were gluten free (and then weren't). Things like soy sauce, "lite" ice cream (thickened with wheat starch), most cereals(contain barley malt, wheat starch, or oats), and even deli tuna salad (contains bread crumbs!! :ph34r: ) were "glutening" me.

Anyway, I hope you both feel better soon!

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It helps at first to look at the healing processes in terms of months to a year, rather than days and weeks. Some people heal very quickly and I suspect these are the ones who don't have other food allergy/intolerance issues.

It may be that you need to cut back to whole foods that are naturally gluten-free - maybe even eliminate all grains (rice and corn, too) and dairy for a while. Legumes are hard to digest (soy, beans, etc.)

You may want to have some food sensitivity testing done to see if there is anything you're eating that may be causing the same symptoms. For myself, the GI symptoms, while improving slightly on gluten-free, did not clear up completely until I stopped eating corn and anything made from corn. It took a few months, though, for this improvement.

Looking back, I know that at 2-4 months gluten-free I was very impatient. But it just took time to find out all the things that were contributing to my symptoms and now, at about 11 months, I am so much better. And I am also very cautious about eating away from home -I NEARLY ALWAYS bring my own food whenever I go out to eat and ALWAYS when eating at someone else's house. There are only 2 restauants I have eating at safely.


Valda

Enterolab results: ...two genes for gluten intolerance ...casein intolerance

other sensitivities: corn, eggs, soy, potato, tapioca

Hypoglycemic

Sensitivity to high EMFs [electromagnetic frequency] (limits my time in front of the computer)

Living a healthier, happier life.

-------------------------------------------------------------------------------------------------------------------

If I take the wings of the morning, and dwell in the uttermost parts of the sea, even there shall thy hand lead me, and thy right hand shall hold me.Psalm 139: 9,10

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Thanks Fiddle-Faddle!

I have been dairy free for a month now as well but I'm not liking it too much. I love dairy. I have been trying really hard to read all labels very carefully but it can be so tricky. I told my boyfriend that I am not eating anything that doesn't say gluten free on it, but that is near impossible. I have also considered just to stop eating altogether but I know I can't do that! This is WAY harder than I had ever thought it would be. I am still trying to get all the gluten out of the house, but my son and boyfriend still eat some things that contain gluten. I keep all my food in a separate cupboard though. I have been careful as to not kiss my BF after he has had gluten and even put our dog on a gluten free diet. Should I go as far as to get all new Tupperware, pots and pans, ect? I don't want to go over board but I want to be careful. I know my doctor said it would be about 2 months before I start feeling better and I still have another month to go but I want to feel good soooo bad.

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Hey everybody. I can totally relate to not feeling better "soon" enough after gluten-free diet. I am just trying as hard as I can to not get gluttoned and bringing food wherever I go. I got a cool lunchbox with a freezer pack and that's helpful. Hope you feel better soon


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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I am finally feeling good after 2 months, not great, but good. It takes awhile to feel better. I had so many bad days in these 2 months that i wanted to just throw in the towel and eat gluten and dairy. But my husband and my kids kept telling me I would feel better soon. In the last 3 days I have been able to sit threw a 3 hour baseball game of my sons, go grocery shopping, take a mile and half nature walk with my 3 little kids, been to soccer practices, and playes so much with my kids. I think more in the last 3 days then i have in months. My house is back to being almost spotless.

So i just wanted to tell you that you all will feel better, it jsut takes time, and lots of encournagement from the ones around yoo, and all the wonferful people on ths website. I know i could have never done it without everyone on here.

paula


gluten, casein and soy free

on low carb/low sugar diet

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Patience is a virtue..... personally i think whoever said that should be drawn and quartered and they obviously were not gluten free either!

I still find myself eating when I feel its "safe time" meaning if something "may" make me ill I look at the clock and decide.... "can I afford to be sick right now?" If the answer is no, then i dont eat, if I answer yes then I do eat, however with each passing new "addition" to my diet it gets easier not to think about it.... I have a growing list of "safe foods" I even have a whole lovely cupboard all to myself and kicked whats remaining of the hubby's gluten laced foods to the bottom cupboard, :lol: his cupboard space shrinks daily! Today we discussed my deep fryer, which is about to get used solely by me, I gave him 7 days to eat all his gluten laced deep fry stuff, cause this time next week that babys getting a cleaning like she's never seen before and I take it over!

I have not yet had to deal with "the friends party buffet" issue yet but because the rumor mill flows rampant in my place of work most know I have what they have termed "a food allergy" some even have given me "old family recipes" that dont have flour.....most I cant use but say thx and take it home and email it off to others, I can't have it but if it sounds good someone should enjoy it.

I have yet to try my hand at changing over recipes, will save that for a future expirience.


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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Not too sure if this what you want to hear--it took a very long time for me to feel better. It was easier to count the days I went without a tummy ache (few and far between) to the days I had one. I don't know if any of you are on probiotics, but I take them and they seem to have helped me.


Best RX? Ice Cream!

Positive Blood Test 2000

Negative Biopsy 2000

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I felt hugely better after just a week or so. However, I found it's a more complex issue than just eliminating gluten. Probably due to eating gluten so long, my system had trouble dealing with these and other things:

1) dairy

2) fats

3) other grains including rice

4) carbohydrates in general

5) sugar

6) large amounts of food in one meal

My health improved most quickly when I started to eat SMALL meals and a fairly simple diet....vegetables, grilled meat or fish, no sugar, no grains, small amounts of fruit, lots of water and green tea.

Attempting to eliminate gluten while keeping intact all the other aspects of your usual diet just didn't cut it for me.


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Are you keeping a food journal? That helps to remember what you ate over the past few days. Especially when you start adding back in foods.

I've been gluten-free since really March 1st. So two months and it's still up and down. I can go two days and be great and then three days not so great. I think I was really sick prior to diagnosis though so I'm trying not to be hard on myself. Stressing out about how long it's taking to get better isn't helping you get better. Like the other posters said, I'm sticking to the "outside" aisles in the grocery store. All fresh veggies, fruits, meats. No dairy or soy. It sucks some days but on the days I'm feeling great- I realize how long it's been since I've felt...great. Clear headed, energy, no aches and pains - it's almost an out of body experience :lol:

Also, give yourself a break when you make a mistake. The ins and outs of this stuff can't be learned overnight. I've learned a lot in the past two months but I learn new things every day about ingredients in processed foods that you would never think would be an issue.

Good luck!

Amy


Diagnosed with Celiac Disease February 2007

Finally feeling better than ever!

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Sorry you're not feeling better. I tired gluten-free a couple of years ago for 6 months, but kept eating Rice Krispies, soy sauce and oatmeal. I felt better, but not normal. I finally convinced myself it must not be gluten that was the problem, went back to eating whatever, and then a year later (last summer) I was the sickest I have ever been in my life. I had constant bloating, diarrhea/constipation, heartburn that would not quit - I even woke up with it - and I started seekign a diagnosis again. I didn't get one - but the nurse practitioner said she felt like celiac was the top possibility. I declined further testing and set out on a gluten free diet - doing it RIGHT this time. That was October 1. I started feeling better within a week, started feeling good around Christmas and now I feel great - better than I ever remember.

It's been hard - but this time I am sticking to a very basic diet and nothing goes in my mouth unless I have read the label. I was at a picnic Sunday - fried chicken as the main course and everyone brought a dish. I took gluten-free mac and cheese (which everyone loved - none was left) and a tossed salad as my dishes and that's what I ate. I did keep my own personal food separate because I didn't think I could get through the line first. I also ate UTZ potato chips (they say gluten free!!). I had plenty - and I had stuck a snickers bar in my purse for dessert because I didn't have time to make a gluten-free dessert. I also am rarely eating out now and only at places wtih a gluten free menu - but I still ask questions. I stick wtih salads, potatoes, rice, plain meat - and something homemade for breaskfast like muffins, donuts or pancakes. I haven't had any luck making "bread" but I haven't missed it to much. Breakfast was always my biggest "bread" time anyway and the substitutes I make suit me fine.

Good luck and stick with it!!


Melissa in Virginia

Age 35, married, 2 kids, 2 dogs.

No diagnosis. Gluten free since 10/2/06

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