Newly Diagnosed With Questions!

[bd13]

Hi! 

I've been recently diagnosed with celiac disease around 2 months ago. My parents and I have been doing our best to fulfill the needs of a gluten-free kitchen, asking questions at restaurants etc. However, my symptom before I was diagnosed was constant vomiting of my food, I just wasn't able to digest. Still, even when I'm like pretty positive that I'm eating completely gluten free, I still throw up and don't digest some of my food. It's not forced vomiting, I'm not sure if it is because I'm eating to fast or what. My parents will think its "mental", however its not, and I don't know what its cause is. Anyone happen to know? Do you think its due to a sensitivity of something else? 

[user001]

What are you trying to eat? When people are first diagnosed many things are not tolerable and there is a list of several items that you may want to cut out because they are highly allergic for celiac people. That list includes things like dairy and soy. You may also have trouble digesting raw vegetables and things like beans. So try cooking your vegetables a little and avoid beans for a while. I always notice that I feel better when i avoid those replacement items too like the gluten free breads and pastas. I am also still new and still learning. I have recently figured out that I am doubled over in horrible excruciating pain if i drink coffee or if i eat a certain corn tortilla product that claims to be gluten free.

[NatureChick]

I would stop eating at restaurants. Sorry. I know that isn't what you want to hear, but even if the item you order is gluten free before they cook it, their prep and cooking surfaces are likely contaminated. Perhaps in a few months once you've gotten a better handle on things you can try again, but I personally consider eating out a high-risk activity.

Also, keeping a food/symptom diary can help track down problem foods if they are gluten related or some other food intolerance that you may not be aware of yet. You may need to start off with some foods you know are safe and then use trial and error to add more foods back in. Plenty of people discover that they have additional food intolerances after they go gluten free, some being permanent, while others are able to add foods back in after they've had a chance to heal.

Otherwise, don't beat yourself up too badly. Everyone has a tough time early on, especially in the first couple months. And if you are super sensitive, then a dedicated gluten-free kitchen at home may be the only way to go. I can understand that parents can misjudge. Sometimes it feels as if their job is to second guess their children. Talking to them about your fears about them not believing you can go a long way to getting past it.

See if you can't get them to become more active on the forum too, if not participating in threads, at least reading some so that they can get up to speed on what it means to be super sensitive.

Also, I can imagine that if I became sick on a regular basis before going gluten free, I might develop a lot of fear and anxiety surrounding food. I'm not saying that your emotions are making you sick, but it could make things worse. Can you take some control back by actively participating in your food preparation so that you feel safer and more in charge of the situation?

[user001]

i really doubt its all in your head. i think thats the running theme with celiac disease, nothing is off limits when it comes to symptoms. i would only dine at purely gluten free establishments. learn to cook so u can figure out what you are eating and in turn figure out what u cant eat.

 

I for sure agree with a food diary. I have learned so much about how food makes me feel from journaling what i eat.

[IrishHeart]

First of all, you have only been at this for 2 months, hon, so you may still feel a bit wonky. It's not psychosomatic as your parents are suggesting,

it's just the way it is right now.

 

Be careful of cross contamination and in time, you will start to feel better.

 

I do not think this necessarily means you have any  food allergies or other intolerances just yet, nor does it indicate you are super sensitive.

 

It's really early and it's quite possible that you are inadvertently ingesting gluten from places you may not realize.

 

Check this list, be careful and soon, you will be feeling better. If not, see your GI doctor (the one who diagnosed you) and tell her/him that you are still having some vomiting issues. It''s possible that something else (physically) may be causing this regurgitation.

 

• Don’t use wooden spoons or cutting boards that also are used to prepare gluten-containing foods because the spoons and boards can harbor residual gluten and bacteria. Metal or plastic are better options.

• Cover shared grilling surfaces when barbequing because unless the grill reaches 500˚F or higher for 30 minutes or longer, grilling won’t eliminate any residual gluten.

• Buy a separate waffle maker or bread maker if the one the family uses doesn’t have parts that can be disassembled and placed in the dishwasher.

• If using a separate toaster isn’t possible, use toaster-safe toaster bags such as Celinal Toast-It or Vat19 ToastIt, available online.

Pam Cureton, RD, LDN, a dietitian at the Center for Celiac Research at the University of Maryland, adds these tips:

• When planning parties at home, prepare a buffet of foods that are 100% gluten free to prevent accidental cross-contamination among family members and guests.

• Buy squeezable condiment containers for ketchup, mustard, and mayonnaise to prevent double dipping. If you don’t purchase squeezable containers, mark condiment jars as safe depending on whether they’ve been exposed to gluten-containing foods.

• Store gluten-free products on the top shelf of the pantry or refrigerator so other foods don’t accidentally cross-contaminate them.

Shelley Case, BSc, RD, president of Case Nutrition Consulting and author of Gluten-Free Diet: A Comprehensive Resource Guide, offers the following ideas:

• In supermarkets, don’t buy unpackaged foods stored in bins. The scoops used to place the foods in bags or containers may have been previously used on nearby gluten-containing foods and may not have been sufficiently cleaned.

• Use different colored stickers to distinguish between gluten-containing and gluten-free products in the pantry and fridge.

• Purchase a colander in a different color for gluten-free foods so it doesn’t get mixed up with the colander used for gluten-containing foods.

• Buy gluten-free grains that are certified gluten free to ensure cross-contamination didn’t take place during processing.

• Buy gluten-free flours marked as gluten free from reputable companies that are more likely to test for gluten.

• Avoid purchasing imported foods. Other countries may not abide by the same gluten-free standards as the United States.

 

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hang in there, kiddo....it's going to get better. 

[GottaSki]

Yep, what Irish said.

 

Hang in there...the first six months are the hardest...between learning curves and wonky digestive systems and the wonderful encounters with family and friends that "know" all about this gluten-free thing

 

Hang tough...it gets much better

[Gemini]

What IrishHeart and GottaSki said!  They are veterans of this diet, as am I, and I am also like you....quite the puker when I sustain a gluten hit or eat food that I just cannot digest. Thank goodness I rarely, if ever, get glutened now....and I eat out occasionally at trusted restaurants that have never made me sick.

 

First off, no need to eliminate soy or dairy......unless you have in your face symptoms like bloating/gas/etc. after eating them.  Not everyone has to stay away from them and it is not advisable to cut out too many foods when first diagnosed (from a whole foods perspective).  I did not become symptomatic for a dairy problem until 2 years after diagnosis.

I still cannot tolerate too much dairy at one time so eat dairy lite but I was diagnosed at 46 years old so there's a difference between you and I.......age. 

 

You may want to try digestive enzymes to aid in digestion because it is very common for Celiac's to have impaired pancreatic function and without that, you cannot digest food well in the beginning and guess what?  You puke.  Lamb is the one meat I can not eat anymore.  It is a fattier meat and I just cannot digest it.  It comes up pretty much the same way it went down so I never touch the stuff.  Sorry for the graphics but I wanted to stress that throwing up can be common for a Celiac and it may have nothing to do with a gluten hit.  Fattier foods are tougher to digest in the beginning so keep that in mind.  Explanation: when your villi become damaged, they can no longer send signals to your pancreas to release the enzymes needed for digestion.  That's how it works.  Once you heal some, then your gut starts to work again, messages get sent and in time, this problem should go away. Just make sure your supplements are gluten free or you can ask your doctor to test you for pancreatic insufficiency.  I never did that but it was obvious what the problem was.  I used the enzymes and felt much better after meals.  I rarely use/need them anymore.

 

Yes, eating out should not happen for a couple of months but once you learn how to inquire about and ask to have your food prepared safely, it is not a high risk endeavour as some like to think.  It all depends on where you go and learning the correct way to have food prepared.....all the gotcha's of safe food prep.  We can help you with that when the time comes.

 

Do not despair, buy some digestive enzymes because I think you clearly need a little boost with digestion or your food would not be coming back up.  If it's looks like it is not broken down much, you need digestive enzymes.  I used Enzymedica Digest Gold but any one that is gluten free will do.

Make sure it contains enzymes to break down fats, carbs and proteins, as opposed to ones that target specific food groups only. Also, a good probiotic would help also to populate your GI tract with healthy bacteria.  These are the 2 supplements I always recommend because they help

get you over the hump towards healing.

 

Hang in there! 

 

 

[IrishHeart]

I second the digestive enzymes. It will help.

 

I am the probiotic pusher on here  and I recommend them highly!

[bd13]

Thanks all for the comments and help! I'm definitely going to get some type of probiotic or digestive enzyme. Also planning to correctly and efficiently label the kitchen for my gluten free needs with my parents. And for now I will keep doing my best to becoming a pro and tackling this disease.

[GottaSki]

Thanks all for the comments and help! I'm definitely going to get some type of probiotic or digestive enzyme. Also planning to correctly and efficiently label the kitchen for my gluten free needs with my parents. And for now I will keep doing my best to becoming a pro and tackling this disease.

Good plan

[beth01]

I agree with what everyone has suggested, I am just going to elaborate a little for you.

 

The dairy - if you had a biopsy with an endoscopy that showed any damage to the villi in your small intestine, hold off on the dairy for now.  We secrete the enzyme to digest dairy on the tips of our villi.  In celiac those villi can become blunted which in turn means we can't produce the enzyme therefor we can't digest dairy.  There really is no time frame to know just when is a good time, you have to listen to your body.  I have tried to eat small amounts of dairy while taking Lactaid lately and it hasn't gone over well for me.  I was diagnosed three months ago, but as others have noted there is quite an age difference.  I am 37 and have been sick my whole life.

 

The food diary is a good idea, just not right now.  For one, your body has just started to heal.  It can take months, possibly years for your intestines to fully heal.  Your body really doesn't have any clue what bothers you right now because any food that is hard to digest is going to bother you.  You could eat one food today and feel fine but eat the same food tomorrow and end up feeling like dirt.  Sometimes it could be the combination of foods that does it.  Too much sugar has an effect on people.  Some can't drink coffee, others can.  Most of us don't digest foods as fast as someone without celiac, so you are essentially stacking undigested food on top of undigested food.  Eat simple.  Limit your meals to three ingredients or less, not counting salt and pepper.  Don't eat processed foods, stay on whole foods just for now. Too much of one thing can be too much. Once again, it's going to take time to heal. Like others have said, don't eat out.  Every time you do you are setting yourself up for cross contamination glutenings which are set backs.  It will take longer to heal.  The trick now is the healing.  Worry about other food intolerances when you have felt good for months at a time.  Right now I am glad if I feel good for a week at a time.  Like the others said, don't beat yourself up.  Feeling down is natural right now, your world was just turned upside down.  Celiac messes with your emotions. It's good that you have your parents' support.  You also have support here. Get to feeling good and then narrow down your intolerances to a tee, starting with an elimination diet. Add things back in slowly and days apart.  Read about them.  You will figure out along the way before the elimination diet that some things bother you even without a diary.  I know if I eat too much soy I feel ill.  I only know this because I had to start from scratch recently.  I had to find some safe foods to eat for a while because my stomach just wouldn't settle down.  I am on my way to that again.  I added things in slowly, saw a trend.  I haven't been writing my symptoms down because I don't want to think now I have a problem with things and give them up when I just need my body to heal.

 

The digestive enzymes and probiotics are a must.  It might take some tweaking to find the right ones.  Do a little research or ask on here the combos that people take.  Don't over do it.  Also, I am not going to assume your sex because you haven't stated it but some of the probiotics are also geared towards women.  Some women have some female issues that benefit from a different probiotic. Just saying. I also am unsure of your age, but kissing is a big cross contamination fest.  If you are going to be making out with anyone they need to brush their teeth well before hand. It might suck to have that conversation with someone but it's better than projectile vomiting on them from gluten exposure.  Sorry for the visual.  Also sorry for all the weird humor, it's how I deal.

 

I am not sure what other testing you have had, but you should have your thyroid tested and tested for vitamin deficiencies.  Make sure you get really good follow up care.  Maybe you can forgo a life some cannot. Not trying to scare you but some of us could be poster children of what gluten does to your body after twenty or so years of damage, and if it keeps young children diagnosed from eating gluten so be it.  My daughter is 11 and a celiac and she doesn't have any digestive problems after eating gluten, only weird fainting. She sees me though and what I have been going through and it has changed her.  Most kids that don't have digestive issues don't tend to be as compliant with the diet.

 

Just remember, it takes time. Give your body a chance to get to know food again, actually like food and not revolt.  And always remember that we are here for you!

[user001]

It really is true. Sometimes journaling your food can just make you crazy because in the beginning everything will bother you. Get some digestive enzymes and the probiotics, they are great for everyones stomach and intestines. The enzymes are a real help! Also make sure to research what foods are easy to digest. People always say eat whole foods! eat whole foods! well thats great but things like broccoli are healthy but super difficult to digest! even the vegetables that are easier to digest should be cooked a little to make them easier.