When Does This Get Better?

[someday]

Hello. I have been eating gluten free for almost 4 months. Some days it is really easy, like the days I don't leave my house. Then I go somewhere and remember how much work this is! I have been struggling with this diet for awhile and don't feel better. I was first diagnosed with IBS and have been on drugs for that for over 3 years. When I was calling in sick to work all year because I was stuck in the bathroom, the doctors (plural!) decided to do a blood test and found out I had almost no iron left in my blood. After iron injections for 4 months, they decided to do the scope and diagnosed Celiac's. SOOOO, the joy of gluten free. I think I am getting the hang of finding food I can eat, just not food I really want to eat. After 4 months of this, I still have some questions that I was hoping someone could help me with...Maybe someday I will know all the answers!

I have been getting yeast infections on my tongue that come back about every month. I was on antibiotics for over 3 months because they thought I had a very persistant sinus infection. (Although now we think it was probably just head pain related to the gluten.) So I think that is where it started. Now I get them whenever I have antibiotics, which is sadly often. Could the tongue infections be a vitamin defficiency or something like it? I heard that maybe B12 would help, but that there are several kinds I have to pick from. Any ideas?

Also, shampoo? Does shampoo and things like lotion really make a difference if I'm not ingesting them? I wondered if little things like that could be the reason I'm not feeling better. The doctors just put me on new meds for the IBS, but I still think it is all because of the Celiac so I hate to take more meds.

So many questions, so little time!!

Thanks for the help!

Rachel

[Eriella]

Hello,

I hear you on how hard it is! My coworkers had scones today in the office .

I am not sure about the tounge infection, but I know the Candida is a yeast infection that is associated with gluten. Others on the board can give much better information about this.

As far as shampoo and lotions, they are fine to use as long as you don't get ANY in your mouth. Now here is the catch-- do you ever touch your hair? Lets say your run your hands through it or pull it back in a pony tail and then don't thoughly wash your hands before you eat a tortilla chip/apple... bang! You're in the bathroom. Or, if you have long hair, when you sleep it can get into your mouth. As far as lotions-- as long as you never eat with your hands they are fine. However, I have never seen anyone eat tortilla chips or baby carrots with a fork .

[jmd3]

I am so sorry you are having a tough time of it - I don't eat out much, my family thinks I should, but I feel more comfortable eating what I make. It is much healthier.

It sounds like you need to get a handle on the yeast problem - what did your dr to for that? There is an oral rinse they can prescribe - then swallow it.

Also, it sounds as if you don;t have any good bacteria - you should think about a probiotic - it REALLY helps get your intestines back in order. The first few days on that might be very hard on you - there is usually a battle with the good and the bad bacteria, but it is SO worth it in the end. You should also be able to make your own B vitamins in your system after that. When your intestines are ill, they use up all the vitamin B that you have. I also think that the B vitamins that we would take in need to be absorbed in the upper intestines, that is where the villa is flattened so your body can't absorb them or replace what we need.

I DO NOT use any soaps or lotions that have gluten in them. I find that applying the lotion with my hands - then just eating something, or touching my mouth etc I get sick. (I also make sure I use lotion without mineral oil also, that is not good for anyone) My hair was falling out in handfuls, and when I switched to a gluten-free shampoo that stopped as well. There are many discussions about this on board, but you have to do what is best for you. Do watch what lipsticks, or gloss that you use, that can be a gluten source too.

You will get tons of great information here. But, have you read any books on the subject yet? In doing this it has helped me understand it so much more, See if your library has "Against the grain", Melissa Diane - That one is very interesting reading. There so many more good books as well; "Celiac Diease A Hidden Epidemic, "Dangerous Grains", just to mention a few.

I too am having a very long recovery from this. I had the Ataxia so bad, the celiac antibodies were attacking my brain cells, and I may have perminate damage, but it is still too early to tell.

Make sure all your medications are gluten free, that could be a hidden source too.

You may find out that you have another allergy or problem that is delaying your recovery too.

I hope that you feel better soon.

[someday]

Thanks for the advice. I was really hoping I wouldn't have to cut out anything else, but I guess there's no point in doing this half way. I will definately check into all of my lotions and hair things. I also checked some of my meds when I started this, but I just kind of assumed the other's were good since I couldn't find any info. I guess I will get to make some phone calls for those. I have had the Diflucan perscriptions and the mouthwash. Both help temporarily, but it always comes back.

So much to think about!

Thanks for the help!

[Electra375]

It sounds like you need to heal your gut. It takes time. I didn't see, are you dairy free? A good portion of Celiacs go Dairy free in the beginning (both short term and long term). Sugar can irritate the gut. I hear good things about the Specific Carbohydrate Diet.

I've never had a negative feeling about Celiac. I could not allow my children to experience a negative thought about it. We must eat to live and they must accept with open arms their limitations (2 are Celiac). I was so happy just to know why the first was sick and that the cure was so easy.

Now, I eat GFDF, I've been most impressed by the choices in the HFS. Our grocery budget is quite large to accomidate special gluten-free items, like cookies, bagels, donuts, etc. Whole Foods Gluten Free Bake House is awesome -scones are available too. I do drive about an hour to WF and stock up on freezer items, I bring a cooler with me.

Other than a CC issue, I find the desire to cheat is not worth it. I've picked up a chicken nugget from the non-Celiac kids when we've gone out. And I thought about and put it down. My 5yr old loves Chic-fil-a Chargrilled Garden Salads, he gets excited about them! Yeah, I'm serious, 'mama, it's got broccoli?' yes 'oh goodie'.

I think if we as adults had this attitude our entire demeanor would be of a healing nature. The mind is a powerful tool, harnass that energy and focus it on healing.

I think adults need to buy themselves gluten-free treats. I love choclate, I can eat some dark varieties, so I do.

People always seem to ask me "what do you eat?" I find this a very strange question, really I do. Is American so stuck on processed junk that we've forgotten what real food is? I get the feeling sometimes that b/c I cook, I'm a rare gem, what are people eating out 7 days a week? We eat out 1X per month, maybe. I actually took a poll on a really 'crunchy' sort of mommy website and the results astounded me. I had no idea people ate out so much. I don't like eating out, I don't like the atmosphere, I can't talk or hear myself think, I don't like crowds, I don't like sitting and eating at tables were other's have (germ thing, I might be a little OC on that). My dh and I have on many occassions taken out the best steak cuts from our butchered cow in the freezer and cooked ourselves a romantic meal while our kids were at a friend's house so we could have our anniversary together. We stayed in and had a wonderful time. I was not raised in the US.

SO, here is what I like to eat...

gluten-free Bagel w/ PB, other nut butter, butter, jelly, cream cheese.

Coffee w/ non-dairy creamer

Kinninniki... Donuts

Amy's entrees (lots of choices all vegetarian, but also a lot of GFDF)

Pamela's cookies

Meat, veggies, potatos

V8 fushion

dark chocolate (somewhat expensive kind)

What my kids love...

Pamela's gluten-free Pancakes or Waffles made from the baking mix

Chocolate chip cookies (toll house recipe) made from the baking mix above

Cookies (mi-del, Kinniki toos oreos, glutino waffers w chocolate)

Fresh fruits - raspberries, strawberries, cherries, apples, bananas, grapes, baby oranges (clementines) I do buy these without too much cost consideration, it's okay that raspberries cost $4/ pint, it's not like we're going to McD everyday at $24 a visit or more.

My mom is visiting, she is diabetic on a strick low carb diet to control it w/ meds. She views her limitations w a very negative attitude, like she is deprived on a "diet". Celiacs (who are not diabetic) have very little to feel deprived about IMO. There is gluten-free bread completely safe in some grocery stores now and some of it is good. A diabetic can't just go out and buy bread and eat it without limitations, my mom can have 1 slice of a low carb bread -- just 1. If I wanted to, I could eat the entire loaf of gluten-free bread. When mine comes out of the oven, I dare say we eat half while fresh and hot with lots of butter...

Anyway, I think a positive mind set helps tremendously. Someday you will be better, I'm truly sorry 4mo has not made you better. 4mo is a long time to stay positive. Words from my 5 yr old -- Yeah, I love salads! And the biggest smile when I can say No to "it's got wheats?". He had to have a cut up fruit container at the WF market we were at on Friday, expensive yes, but he eats it all and loves every bite, worth the $4! That was our eating out.

[someday]

Ok, I found out my shampoo and conditioner MAY contain gluten so I guess I need to change. I was using Herbal Essence. Does anyone have any suggestions on some gluten free versions? Thanks!

I am off to my mother-in-law's house to eat a meal that she is really making an effort to cook for me. Unfortunately, since she knows nothing about gluten, I am sure that I will be sick the rest of the week. It is impossible not to eat it though since she is making such a huge effort! What a big price to pay to not hurt someone's feelings!

Thanks!

Rachel

[jewi0008]

Hello. I have been eating gluten free for almost 4 months. Some days it is really easy, like the days I don't leave my house. Then I go somewhere and remember how much work this is! I have been struggling with this diet for awhile and don't feel better. I was first diagnosed with IBS and have been on drugs for that for over 3 years. When I was calling in sick to work all year because I was stuck in the bathroom, the doctors (plural!) decided to do a blood test and found out I had almost no iron left in my blood. After iron injections for 4 months, they decided to do the scope and diagnosed Celiac's. SOOOO, the joy of gluten free. I think I am getting the hang of finding food I can eat, just not food I really want to eat. After 4 months of this, I still have some questions that I was hoping someone could help me with...Maybe someday I will know all the answers!

I have been getting yeast infections on my tongue that come back about every month. I was on antibiotics for over 3 months because they thought I had a very persistant sinus infection. (Although now we think it was probably just head pain related to the gluten.) So I think that is where it started. Now I get them whenever I have antibiotics, which is sadly often. Could the tongue infections be a vitamin defficiency or something like it? I heard that maybe B12 would help, but that there are several kinds I have to pick from. Any ideas?

Also, shampoo? Does shampoo and things like lotion really make a difference if I'm not ingesting them? I wondered if little things like that could be the reason I'm not feeling better. The doctors just put me on new meds for the IBS, but I still think it is all because of the Celiac so I hate to take more meds.

So many questions, so little time!!

Thanks for the help!

Rachel

I just have a question for you because I've had a lot of problems with my tongue, too. What does yours feel like? Does it look odd? I have had this mouth problem for so long and the only way it goes away is with the strictest diet ever. I would love to see if your mouth is like mine so we could figure out what is the cause!!!

[someday]

When my tongue is infected, it starts out really red in spots and very sensitive to anything spicy or fizzy. If I don't get meds for it, it starts to get white patches on it and it is hard to eat anything. At one point, my tongue was so infected that I couldn't eat anything, all the taste buds seemed to be raised or killed off and it was very irritated. Now I can tell when I start to get an infection when I eat something that isn't really spicey, but my tongue burns as soon as I eat it.

I started probiotics today which it sounds like will help. It also sounds like they can't really hurt to try, just in case.

[NoGluGirl]

Hello. I have been eating gluten free for almost 4 months. Some days it is really easy, like the days I don't leave my house. Then I go somewhere and remember how much work this is! I have been struggling with this diet for awhile and don't feel better. I was first diagnosed with IBS and have been on drugs for that for over 3 years. When I was calling in sick to work all year because I was stuck in the bathroom, the doctors (plural!) decided to do a blood test and found out I had almost no iron left in my blood. After iron injections for 4 months, they decided to do the scope and diagnosed Celiac's. SOOOO, the joy of gluten free. I think I am getting the hang of finding food I can eat, just not food I really want to eat. After 4 months of this, I still have some questions that I was hoping someone could help me with...Maybe someday I will know all the answers!

I have been getting yeast infections on my tongue that come back about every month. I was on antibiotics for over 3 months because they thought I had a very persistant sinus infection. (Although now we think it was probably just head pain related to the gluten.) So I think that is where it started. Now I get them whenever I have antibiotics, which is sadly often. Could the tongue infections be a vitamin defficiency or something like it? I heard that maybe B12 would help, but that there are several kinds I have to pick from. Any ideas?

Also, shampoo? Does shampoo and things like lotion really make a difference if I'm not ingesting them? I wondered if little things like that could be the reason I'm not feeling better. The doctors just put me on new meds for the IBS, but I still think it is all because of the Celiac so I hate to take more meds.

So many questions, so little time!!

Thanks for the help!

Rachel

Dear Rachel,

The yeast problem is something I have as well. When you have a systemic yeast infection, it will make you feel very bad. It can cause so many problems! I have been gluten-free nearly a year now. I am so glad that you found us! This forum will make life a lot easier!

I have a little present for you to welcome you to our little community! I have a list that should really help. This is overwhelming. I went through this with myself eleven months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam