kkkkaty

Well, Thanksgiving was at my house so I thought I had everything under control but somehow I was glutened! Now I'm looking forward to 8 or 9 days of misery -starting with knocking intestines, bloating, then several days of 0 bowel movements. plus some other unpleasant stuff (I'll spare you). After more than a year since diagnosis I've yet to figure out how to cope very well when I've been glutened. Do people take meds to ease the constipation, bloating etc.? Please share some strategies!

I read somewhere that natural and artificial flavors can contain gluten. I read that natural flavors are more likely to contain gluten. Do they always contain gluten? Or, have I got it wrong?

And, does anyone know just what sort of gluten would be in flavorings?

Thanks

I just had a great appointment with a GI doc who is a Celiac expert. After so many visits to doctors who know next to nothing about the disease, it was such a relief to meet with a doctor who is so knowledgeable. His name is Dr. Vecchio and he works at the Fletcher Allen Health Center in Burlington, Vermont.

Thanks for all the feedback. I had the boys tested and they are both negative. A friend w/ celiac told me she has her daughter tested every 3 years. Seems like a good plan.

In the meantime, my kids seem happy eating mostly gluten free (I do all the cooking) and should they ever have celiac disease, or meet someone with celiac disease, they'll be well equipped to handle it!

Cheers!

I am really needing some support right now. Here is my story: I was not realizing that I had any symptoms until this September. I got remarried on Sept. 13, and after we got back from the honeymoon I started getting sick. My stomach was upset and in turmoil non stop, and I was becoming more and more tired. I pushed my doctors and I was lucky enough to find out I had celiac disease right before Thanksgiving. When I look back on my life I realized that so many of my health issues are tied to this disease- epilepsy, miscarriage, allergies, etc. As soon as I found out I did some hard core research, and have found some great information on how to live gluten-free. I started my gluten-free diet immediately, and have not looked back.

What I am struggling with physically is the fatigue, joint issues, and some lingering stomach issues. I am getting thru those with vitamins (including B12) and trying to eat as healthy as possible. What I am really needing right now is the emotional support. My mom and dad are great, but my husband has definitely been lacking the support area. He was great the first week, but since then it has been tough. I ask him to help around the house, help with the cooking, etc just because I do not have the energy to go to work all day (after a very rough night's sleep), take care of my two boys (homework, etc), cook dinner, and then do anything else that needs to be done. Plus, to be honest I would just like him to baby me a little so I feel like someone is taking care of me. As you all know it is tough to adjust to this. I am dealing enough with learning how to eat gluten-free, feelling rotten and having no energy is TOUGH!!! I just need a little support, and I thought I would turn to you guys. Thank you for listening to my troubles!

I'm sorry you are not getting enough support from your hubby! I was diagnosed in Aug. 08 and it has not been an easy road for me- between cross contamination issues, fatigue, learning I was also lactose intolerant ,etc.- it's just not a simple process. It's very important to have support and yes, some special attention is pretty nice too!

I was very tired after starting a gluten free diet but , looking back, I think I was not eating enough. Are you? I also had lingering stomach issues- that's when I tried eliminating dairy - much better! Also, I got rid of all baking stuff and now only bake Gluten free for the family. They like what I make but they also have store bought gluten foods.

I don't know how you make your husband more involved in your experience. But it seems obvious that if a member of the family is feeling rotten- it will affect everyone.

I am lucky to have a supportive family. After 5 months of telling my husband how bad I was feeling, I've resolved to also tell him when I'm feeling well , though I think it's obvious.

Make sure you check your home for sources of gluten. Don't bake with gluten! Do you have your own cutting board, toaster, wooden spoons? Have you checked your lipstick, chapstick, hand cream?

Even though I'm new at this too, I firmly believe it gets better. Hang in there and keep coming here for support. It's a great community!

Hello All,

First off, I am sorry this is so long - I am an amateur Celiac

I was diagnosed with Celiac on the 22nd of December. Matter of fact, I was driving back to hometown for Christmas when the doctor's office called to confirm - biopsy and blood panel were positive. I am 31 and was raised in an Italian family (so gluten has been a staple). I never had any syptoms, until around October when I was under a lot of stress and received a flu shot around the same time. My GI said that I have had this for years because my Villi were so flat - as he saw in my biopsy. So why no symptoms until now?

I am very concerned if my symptoms seem consistent with Celiac Disease.

I have a loss of appetite, loss of sex drive, an overall feeling of just not being well. I have a mild headache and almost a lack of concentration, "head in the clouds" feeling. I have lost weight - I was 182 (a little heavy for me anyways) before my colon/endoscopy on December 10th. I am at 171 now. Sometimes my stools are loose, sometimes they seem to want to begin to form.

Over the holidays, I really made sure I was eating "Gluten Free" products. My stomach gurling began to subside a bit. During the holidays, I was feeling better, less of the symptoms above. I was drinking Vodka (Burnett's Quadruple distilled) and Diet Ginger Ale (Seagram's) the entire time. For New Years I switched to Burnett's Vanilla Vodka and Diet Ginger Ale. After New Year's, I have had this mild, lasting headache, my stools have become loose, and just an overall anxiety feeling that something else is wrong. My girlfriend has been amazing in supporting me, but we didn't know that hazelnut coffee (not syrup flavored, but in the bean) may have gluten in it which I had been drinking, now back to black. We also weren't 100% educated on de-contaminating our kitchen either. So these things may have been the cause. Since New Year's, these feeling have lasted, today is January 6th. My headache is beginning to subside and my stools are a little more formed. My stomach activity has also slowed a bit.

I am really concerned with my weight loss and the headache/concentration "head in the clouds" feelings.

As soon as I found out my diagnosis, I have been doing my best to avoid Gluten containing foods and have been pretty religious reading this site and others out there. I am slowly but surely getting there though.

Thoughts and opinions are greatly appreciated.

Thank you all!

Cheers!

I get headaches when I've been glutened. Also, fatigue, body aches, D, unsettled gut. The symptoms really vary for each person. It can be really confusing at first- I finally started keeping 2 diaries (advise from another member here) One to keep track of everything I eat and another to keep track of symptoms. Also, I keep track of my environment, special events, exercise, stool. Keep checking and re-checking everything you use (meds, chapstick, shampoo, hand cream,spices). I've been surprised several times. I have also been glutened from cc- especially at other peoples homes. Get rid of all your flour, mixes, etc. I replaced my sugar because I figured it had been contaminated.

Also, as I got better, the glutening episodes became really intense and long lasting- I was shocked! It is frustrating to be glutened and not know how- the dairy helps.

One more thing, After being Gluten free for a few months, I realized I was also lactose intolerant. I found that out by giving it up for two weeks, then having it again. Night and day.

Good luck, keep reading!

How old are your boys, what was his reasoning for the 'no', and how were you diagnosed?

I'm sure you'll find many posts here that lend support to the recommendation by Celiac experts to test all first degree relatives of those with confirmed Celiac.

Open Original Shared Link

Open Original Shared Link

My boys are 12 and 16. Their Doctor said we should not test unless they showed symptoms. Though I was only diagnosed in August, (blood test )I'm quite sure I've had the disease for years. After many trips to the doctor and many tests, it was an on call doc who thought to test for Celiac. The second she mentioned it I thought it made so much sense so I was not really surprised when she called me at home late the evening to say I was "extremely positive" and should begin a gluten free diet immediately.

Thanks for the links.

I was recently diagnosed with Celiac and on a recent trip to my son's pediatrician I asked if we should test my 2 boys for the disease. The Dr. said no but the more I read the more I feel it would be irresponsible NOT to test. I'm kind of baffled actually at the lack of awareness our Drs.(mine and the kids) have about this disease. Happily I've found a celiac specialist who I'm going to see soon. I'll ask him about testing the boys but what do people here think? What would you do, or, have you done?

It is no small thing to have people around who are so supportive! I have been counting my blessings lately as I realize I have 3 close friends (couples) who cook wonderful meals for me- they will sometimes call several times while they are preparing to cook and ask me if I can eat this or that and what pans should they use etc. My other friends may not go to such lengths but at least they do not try to push food on me or get mad at me if I don't eat a meal. My husband and boys are also wonderful as well- my youngest now automatically reads labels on foods and will announce if I can eat it or not.

Still a little dicey going to Mom's but she tries hard and always has a basket of gluten free products awaiting every time I visit.

It's disheartening to read of how little support some are getting from family and friends. On the other hand it's great to see the support available here.

Hi katy, you said this

As a suggestion for a food diary (and there are different formats that you will find if you google the internet), the one that works for me looks something like this.

I use MS Word table and set up a symptom diary of very possible symptom I experience, skin, gut, energy etc, and take a checkpoint as at my start date. I make my symptoms as descriptive as possible, and easily comparable to how I might compare them in a months time. Its a simple table with perhaps 15 symptoms (even fingernails spots, dry skin, general state of stool etc). The other axis is dates so that I can check them all again in a months time and over 6 months I get a good idea of my overall recovery.

I then have a food diary with a column for each meal a colums for stool, and another for general symptoms. This allows me to track at a micro level how anything I eat might affect my immediate symptoms, stool etc and how long it takes to show.

As long as you update the diary every day or so, you will quite easily work out what does not work for you and what level of reaction and how long it takes to show and clear.

The two levels of table allow you to assess overall progress as well as learning what you react to, over time it becomes quite easy to pick when things change in your diet and cause problems.

Good luck

tmb,

Ok this looks like a good system. I just finished setting up something like this on google docs and am going to give it a try. I like google docs because you can gain access through gmail on any computer, anywhere.

Thanks!

Hi kkaty, there are direct links between GI and lactose intolerance. The damage gluten causes to the intestine can create other food intolerances, these are often temporary. Lactose is common as if yeast/candida issues. If you have not already used a food/symptom diary, you should do so to see if it is only dairy that causes issues. My own experience of being gluten-free for the past 6 months and on a candida diet for 12 months, and lactose free for 7 years is that dairy reaction for me is within 12 hours and this is usually D. I am unsure if there are other more subtle effects from dairy. Most of what I have read tells me that I might be able to return to dairy after a year of being gluten-free.

Instead of cow dairy I use goat or sheep products, yoghurt and cheese and rice milk. The protein structure of these seems to create less issues with our digestion and immune system, and I seem to tolerate these OK. I did use soy for a while. however soy intolerance appears to be quite common, and after some possible reactions to this, I decided it would be eaier to avoid at this stage in my recovery.

My plan is to get to a point where my overall health has recovered to the point where I feel confident to test things like dairy, chocolate etc, and I would guess this will be around 12 months gluten-free. The recovery rate for gluten-free appears to be between 6 months and 5 years, from what I have read and the experiences of others. This depends upon how careful you are, how long you have been celiac, etc. We all react differently around some very common themes.

My advice is to do the hard work now, avoid anything you appear to react to, lactose etc. Any delay in removing gluten from your diet is robbing you, both of life and its quality of life. Gluten avoidance needs to be lifelong, while things like lactose might become tolerated over time.

Be very clear with yourself why you are avoiding gluten and what you then need to do in order to succeed. Avoidance could mean living a normal healthy life with some disciplines imposed that are initially difficult and not easily understood by other people. However, the payoff is priceless if you achieve this. If you do not the prognosis for celiacs who do not avoid gluten is ugly. A range of auto-immune diseases, cancer, issues with adrenals, candida, etc etc all have a significantly higher probability with celiacs who consume gluten. After 5 years of gluten-free we are all mostly back in the normal range for these diseases.

I would not take any shortcuts with lactose, pills etc to compensate if you eat chocolate, etc. Avoiding many of the food vices like coffee, chocolate etc are a small price to pay for the first 12 months or so. Be positive, I have found some great alternative foods over the past year and my tastes have adjusted to these.

tmb,

Thanks for the thoughtful reply. I realize this is a process- a much more complicated process than I first thought. It is an entire lifestyle change and I do have a good attitude about it but it isn't always easy! I don't have any problem giving up whatever I have to- My health is important to me so it's a no-brainer. Still, there is a lot to learn . This forum is extremely helpful- I'm so grateful for this community. The diary is a smart idea. I will do that.

Thanks again.

lbd,

Thanks for the very informative reply. I will definately investigate that.

ang1e0251,

I've already stopped crying. I understand the result of all this is that I get to feel so much better- that is a huge prize!

and as the saying goes in my house, "when Mama's happy, everyone's happy"

Thanks everyone for your thoughts and experiences. I guess I will just take it slow and stay off dairy ( and cry quietly in my room) . One more question for the lactose intolerant folks- do you also stay away from anything that has milk in it- like cookies or chocolate?

Thanks all.

I have figured out that dairy makes me feel pretty ill (tummy ache and D)- I feel great being off it. But I'm very sad about this! I know that since I've been gluten-free (4 months), I'm much more sensitive to several things I love (like coffee and chocolate) and when I was recently glutened from cc I was stunned at how sensitive I was and how intense the reaction was (8 days !). So I am wondering -do you get less sensitive to dairy over time? And if not, does anyone still eat it and take a pill to counteract the effects?

I'm just getting over a terrible reaction from the holiday (probably cc as I can't think of anything else and I was sooo careful) and since then I've been working on getting my kitchen gluten-free - new cutting boards, spoons, toaster etc. I went out to lunch yesterday and , even though the restaurant had gluten free items, I ended up just having a glass of cider because the waiter said they used the same cutting boards etc. in the kitchen. How can you be sure there is no cc in any given restaurant ? (unless it's a total gluten-free place- no such thing in my small city) Am I taking this too far? I really don't want to have another episode like the one I just had! What do other people think about the likelihood of cc in restaurant kitchens?

You are probably getting cross contaminated, are you still cooking for other whith wheat flour. Still cutting your apples on the same wooden cutting board that you used for wheat bread?

check out the cross contamination threads. & be careful about the gluten free goodies that you are eating, especially the ones that are manufactured in places where they have wheat etc.

Thanks for the reply. Are you saying that one should not cook with wheat for other people? I make cookies, cake, pancakes, etc. for my kids - is that considered risky? I understand the idea of dedicated tools and dishes and I'll be paying attention to that immediately. Please clarify about the cooking...Thanks.

I was diagnosed with Celiac in August and at first I ate only fruit, veggies, rice and little else but slowly I've discovered lots of great things to eat. But I haven't been feeling very good for awhile now- I have more headaches, bad sleep, general achy-ness.My stomach is much better but not entirely right. I think I eat well, take vitamins, run 4-5 days week..I should be feeling great. I just got back from the holidays with family and, as far as I know, ate nothing bad. But I felt terrible. I spent a bunch of time on this board looking for clues and came up with a whole list of things I may be doing wrong- toaster, lipstick, shampoo- to name a few. I am feeling so overwhelmed by this right now- Should I have dedicated wooden spoons, cutting boards, other? Maybe I expected this process to be easier or faster.I have always had an excellent attitude about this but I'm sooooo frustrated!