Newly Diagnosed

Keep in mind that you have to continue eating gluten for accurate test results.  Good luck!

I was taking Protonix when I was diagnosed.  It is not the same drug but is also a proton pump inhibitor.

We have a shared kitchen in my house too.  However, more and more of what we eat is gluten free.  The kids and husband sometimes eat toast, but not often.  I buy my pancake loving son the frozen kind rather than making them from scratch or bisquick (he doesn't like the gluten free kind and I've never been a big pancake eater anyway).  The fridge was not as difficult as the pantry for me, but it did take a while for me to consider everything.  I rarely use mayo so didn't think of that until I wanted to make chicken salad and didn't have any uncontaminated mayo!  Mostly we have squeeze bottles for jelly, ketchup and mustard so all that is safe to share.  The only gluttony foods in the fridge come from leftovers and I just keep it separate.  I also use different containers for glutton free food and use the old containers if we have something with glutton in it so I don't get confused.  I use glutton free for everyone as much as possible.  Also, I second getting the kids tested.  I told the pediatrician about my diagnosis and she ordered blood work for them right away just to be sure and will repeat the tests every few years or if symptoms arise.

I get it.  My birthday is coming up in October and it will be my first gluten free birthday too.  I always used to get ice cream cake (can't because of the crunchies, and there is no Carvel near me to get a special order cake) and I have already been thinking how much I will miss that tradition.  Vacation was difficult this past July because all of our "favorites" were no longer available to me.  My husband was very supportive and said we would find some new favorites, and we did, but I still missed my old favorites.  I think eventually this will not be so difficult.  Soon we will have new traditions.  In the meantime, my new favorite restaurant is Outback because I they have a good variety on their gluten free menu and all the waiters and waitresses I have had there since being gluten free have been very educated about it.  Happy birthday and good luck deciding what YOU want to do on your day!

I agree.  Plus soda for me is an appetite suppressant.  It fills you up and then you don't feel hungry.  It also helps the appetite to have foods that you can look forward to eating.  At first I thought I would never find anything I liked again, but trial and error and going back to basics that I have always enjoyed really helped.  Also, for me depression also can play a role.  I try to think positively about how glad I am to have a diagnosis and focus on all the really good foods that I can still eat, but when I go grocery shopping or when I am at work and someone brings in a cake, or when I get invited somewhere that will involve food, I get anxious and stressed and sad/depressed about things I can no longer do or have.  You are doing a great job and your boyfriend is lucky to have someone so understanding.

I was diagnosed in December 2015 too.  It takes a lot of adjustment and honestly sometimes I just get depressed by not being able to do things I used to do.  My husband is very supportive but I have sometimes lashed out at him when he tries to be helpful.  It is just a lot to get used to and takes time.  Is he still having digestive symptoms or is the lack of appetite because he has not found foods that he really likes?  I know that I have not yet adjusted to a lot of the tastes of gluten free food and I prefer foods that I was always able to eat more than the gluten free variety of foods that I can no longer eat.  For instance, I like steak, potatoes, chicken, etc. better than gluten free breads and things like that.  Also, sometimes as we are healing people discover secondary food issues, like problems processing dairy and things like that.  So, unfortunately he may need to cut out more foods if he is still having digestive issues.

I know this is hard, but it might help if you just let him vent when he does talk about it instead of trying to fix it.  A sympathetic ear can go a long way.  You are doing everything you can to support him, but he has to adjust to a new lifestyle that can sometimes feel very isolating.   

I broke out for a while after going gluten free.  It was probably the shock to my system.  Eventually my skin cleared up, better than it was before going gluten free.  I've been gluten free for nine months now and I would say it took two to three months for the skin issues to resolve. 

I had an acne flair up after going gluten free but it ended up improving and some long-term back acne I had been dealing with actually went away.  I think going gluten free was a shock to my system and at first I actually felt worse but after about a month things got better. 

It is overwhelming at first.  I tend to google things (and usually google brings me to past conversations from this group) when I want to know if they are gluten free and I can't tell when I read the ingredients.  There is also an app called "allergenie" that I use, but only if I am almost sure it is gluten free and just want to confirm.  I have definitely cut out some things just because the list of ingredients was too long and I am lazy!  The good news is, my entire family is eating healthier now that I realize how many ingredients used to be in our food! 

It does seem that doctors do not think about cross contamination.  I guess that's why mine referred me to a nutritionist, who did give me excellent advice about toasters, pots, colanders, etc.  When I went back to my dr for a follow up and said that eating gluten free was "so complicated" he asked why it was complicated and I explained about cross contamination and making sure food is not processed in a shared facility even if the food itself is gluten free.  Maybe I educated him a little, because he agreed with me and didn't act like I was crazy when I explained what I meant.   

Thanks everyone! 

I am going on vacation in two weeks (my first vacation since diagnosis) and am wondering how to prepare and plan ahead.  I will be staying in a place with a full kitchen so I will be able to eat in and cook my own meals.  There will be kitchen stuff available for use, but am wondering if I should bring my own pot/pan or if maybe I can just wash the stuff provided before using and maybe use foil in any baking dishes.  Plus, our family has some favorite restaurants that do not offer gluten free that we will probably go to.  Is it safe to order a salad and specify no dressing, crutons or bread at a place where a lot of fried food is made?  Or would you just not eat there at all?  I am sure I could ask questions of how things are prepared, etc., but one concern is that it is often difficult to understand because a lot of the seasonal employees have heavy accents.  Could anyone share their travel tips with me so I can prepare?     

Hi, I came to the forum for coping with this morning because I have been pretty down recently about the diagnosis.  I was diagnosed in December and for a while I was doing well by telling myself that I am eating lots of good foods and thinking positively.  But recently I have been invited to a whole host of birthday parties and it has hit me again how limiting the disease can be.  I eat before I go or I eat afterwards but I don't eat at the parties unless I take my own food.  My diagnosis took me by complete surprise.  I was diagnosed with Graves disease in 2012 and for years my thyroid hormones were either too high or too low and it seemed like I could never just hit the target and feel good.  When I went to my dr. in November 2015 I was feeling better than I had in a long time, like finally I was "back to normal."  Then with the blood test (and endoscopy following) discovered I really was sick even though I felt fine.  I gave up gluten, have been very careful, but I don't feel any different.  Yes, I know, I was feeling good and still am and I am very lucky in that respect because so many people on this forum are battling some debilitating symptoms.  At the same time, because I don't have any physical guide to when I consume gluten (at least as far as I can tell) I am very, very fearful of messing up.  I may not feel physically sick, but I do have extensive intestinal damage and am anxious to heal and to avoid any other celiac related illnesses.  It does surprise me when people who get very sick from eating gluten are not careful, but I understand how difficult it is to be surrounded by people who are eating and to abstain "just in case" when really a lot of the food is probably perfectly safe.  I have hesitated to whine here because so many people are dealing with much worse.  I come on here almost daily because I find it helpful and uplifting to hear stories from people who have adjusted.  I am sure once this has been my lifestyle for several years I will also have less trouble with things.  Right now whenever I hear of another party invitation I just cringe.  I am so glad that this site exists and that there is support for people with celiac or gluten sensitivity because it seems like I am very alone sometimes.   

Hi, I was diagnosed in December.  Prior to diagnosis I had no symptoms except heartburn and the heartburn hasn't completely gone away yet so I am thinking the heartburn may not even be related to celiac.  For me the most frustrating thing is that it seems sometimes that my entire life has changed and I wasn't even feeling sick before diagnosis (I know, that should be a good thing, except it was such a huge shock to find out that I was actually sick even though I felt really good).  It can be hard to stick to the diet (I have been, but it's hard) when I have no "consequences" if I don't stick to it.  I know, not exactly true, even though I may not feel sick I have intestinal damage and lots of risks if I don't stick to gluten-free.  Going to events like birthday parties can be difficult.  Even going to the grocery store can be difficult if I am not in the right frame of mind.  I try to think positively about all the good foods that I can still eat and all the really good alternatives there are in gluten free foods.  But sometimes I still get depressed about it.  I think that as time goes by this will happen less.  I would imagine many newly diagnosed people feel this way and go up and down in their moods.  It is nice that you want to help your mom adjust.  Having supportive family has definitely made things easier for me. 

It is very overwhelming at first for sure.  I had a positive blood test in November and I was in denial until the biopsy came back and it was positive too.  As the months go by it has gotten easier but I do still feel sorry for myself sometimes.  Whenever I start to feel sorry for myself I focus on the positives.  There are so many wonderful gluten free foods and beverages that we can have.  Your health is more important than eating gluten and there really are very good options out there that are gluten free.  If you try something you don't like, don't give up and think that none of it will taste good, because there are lots of gluten free things that taste awesome. 

What brand of hamburger buns does everyone like?  I have not yet found one that I like after a few bites.  Maybe it takes time to get used to the different texture/flavor of the gluten-free bun?  I would love to hear if people have found brands that they really enjoy so I can try them! 

 

I looked them up and they do not contain gluten in any flavor.  Sometimes it can be other things - acid in the juice, for instance.  some days I am fine with fresh tomatoes and lemonade, etc and some days, I get heartburn.  And once I get it, it takes a few days or a week to get back to eating them again.  Probably some sort of imbalance in my stomach acid and the foods I ate with it....Not sure why. 

That's good news!  I guess that means my response to the original question isn't valid though.  I remember when I read the label the ingredients seemed okay, but then I googled it and there was a chart with the juices that contain gluten and the juices that do not.  Thanks!  But I think I will still stick with water! 

 

I have never seen  cranberry juice with gluten.  which one is it?

I don't remember.  I think it was "Simply Cranberry" but I can't say for sure.  It was one of the juices they keep in the refrigerator at work, not something I bought myself.  Right now we have Very Fine juices which I believe are all gluten-free.  When I looked on-line there was a chart with all the juices and most were gluten free but the cranberry juice said it was not. 

I accidentally glutened myself a few months after going gluten free (a cranberry juice got me) and I had the worst heartburn ever that night and the heartburn didn't go away for a few weeks even though I had only a few sips before I thought to check the brand on-line. 

I have celiac disease and when I began the gluten free diet I did have withdrawal symptoms.  I felt really awful for about five or six days, and it gradually got better.  I don't know whether withdrawal symptoms are indicative of having celiac, or just because it can be a major dietary change to suddenly eliminate gluten which is in a LOT of foods!  I agree with cycling lady, you need to continue to eat gluten until you have a diagnosis.  If I didn't have a diagnosis I am sure I would have "cheated" on the diet.  There are tons of wonderful gluten-free foods and in my own home it is simple to be gluten free.  It's the social aspect of the diet that is very difficult sometimes and if I didn't know for sure I absolutely need to be gluten free I am sure I wouldn't stick to it when everyone is having pizza!  Good luck! 

 

I've had obvious GI issues for almost two years now that have made me sick. I've been diagnosed with everything from SIBO, Fructose Malabsorption, and lactose intolerance. My blood test for Celiac came back negative but I had been trying to be mostly gluten free and only adding gluten back in again for 3 days when the blood test was done. Regardless of what treatment I get or what diet I'm on (mostly Low Fodmap), I can't seem to find complete relief from bloating, upper right quadrant pain, bathroom issues, heartburn, joint pain, lethargy, thirst, dry skin, skin rashes... The list goes on. What I'm curious about is if diagnosed celiacs have had any common symptoms in their history as mine: early onset of joint issues (from childhood), frequent yeast infections, infertility issues, irregular periods, appendectomy, and now seemingly culminating in all these things making me feel constantly ill on a daily basis. Should I ask my doctors to reconsider celiac, considering I have a terrible habit of cheating (just a little) with gluten in my diet or sometimes not even realizing I might be ingesting it when we eat out or if I'm not diligent about checking labels?

Everyone has different symptoms.  My only symptom was heartburn and when I went gluten free after diagnosis my heartburn did improve.  I was not eating gluten free prior to my blood tests as I was certain that I did not have celiac (wrong again!).  You definitely need to have been eating gluten for a longer period than three days for the tests to be accurate.  There are many, many symptoms of celiac disease and it sounds like a good idea to get a more accurate diagnosis.  Good luck!

I recently read that chick fil a grilled nuggets are no longer gluten free because they changed the marinade.  I could not find anything to confirm this.  Everything I have seen about chick fil a says that they are a good option.  Does anyone know any different?  I do not get major glutening symptoms, just heartburn.  I have been having mild acid indigestion and am not sure if it is related to a recent meal at chick fil a or if it is just mild acid indigestion not related to celiac... 

When you had your tests done were you eating gluten?  If you have been gluten free for any period of time or even cutting back on your gluten intake this would affect your results and give you a false negative.  I believe there is also a celiac gene test, but I am not sure of the details on that.

As to tips for going gluten free I think the newbie section of this website has a lot of good tips.  For me, I had no celiac symptoms except heartburn.  When I went gluten free I actually felt worse for a while as my body adjusted.  Then about a month later I realized my heartburn was much better.  But everyone is different.  I have read some people with different symptoms who noticed improvement after a few days. 

Is it necessary to use gluten-free shampoo, hand lotion, etc?  I got rid of all of my lipstick and chapstick and went gluten free on lip products when I was diagnosed in December, but now I am thinking that maybe I should also think about replacing some of my other products, like shampoo and hand lotion, maybe face lotion and other makeup.  I don't eat my shampoo or hand lotion in the same way I may accidentally ingest lip care products, but the more I think about it the more I think maybe I would be better off going gluten free on these also.  What are your opinions on this? 

I was diagnosed in December also.  I also have developed back acne but somehow my facial acne has improved.  I have small rashes now that I did not have before.  I did not have many symptoms prior to being diagnosed, except heartburn every single night, so I initially felt worse because all of a sudden my body was adjusting to a new diet.  I think I had gluten withdrawal.  Now I still would say I do not feel as good as I did before diagnosis, but the heartburn is improving some at least.  I am trying to be patient as my body heals but I go back to my GI for a follow up in a few weeks and will definitely ask about that.  I agree with Irene, I have also been told it can take up to a year to heal.  Plus I go back and forth mentally with the lifestyle change.  For the most part I don't really notice, but when I go somewhere and can't eat what everyone else is eating...