New Celiac

[bincongo]

I am a new celiac. I was diagnosed by endoscopy 3 weeks ago. I am still having bloating. How long before things get better and where do I start. I think I discovered that I am lactose intolerant yesterday so I brought Lactaid milk and then today I got Silk Soymilk. Someone just wrote that it is not gluten free but in the Gluten-free Grocery Shopping Guide it says that it is. I ordered a Soy milk hot latte at Starbucks today. Is that not gluten free? I had no flavor added. I am trying hard to be gluten free and now lactose free.

[precious831]

Hi and welcome. I'm celiac and I'm lactose intolerant too, very severe reactions to dairy. For now because you're unsure, I would just stick to dairy-free items. I can't even have any dairy at all, so I'm wondering if I am not just lactose intolerant. The lactose-free milk might give you problems, I can't drink that or eat any sliver of dairy at all. Have you tried hemp milk? I drink that, it says gluten-free right on the box.

I'm glad you found out now so you can start to feel better. I think it took a few weeks for the bloating and everything else to stop for me. Then if I get glutened my accident my symptoms start up again. Not sure if the Soy latte is gluten-free, you could call Starbucks and ask if their soymilk is processed w/ barley or anything gluten.

Good luck and hugs!

[missceliac2010]

I am trying hard to be gluten free and now lactose free.

Hello and welcome to your new life! I too am fairly new, and I went straight to Gluten-free AND lactose-free under the recommendation of my doctor. I can't possibly put all of the information you need here in one email, but I can give free advice!

Do your research! Spend A LOT of time on sites like this looking up everything you can think you need to know and more! If you have an IPhone, get the app "Is that Gluten Free?" Best $7 I ever spent. If you don't still use the internet/technology to your advantage. I can't tell you how many times a day I type "is ____ gluten free into a google search! The internet is an amazing place that is filled with information. Usually, when you have a question, someone else has had it too, and it's on the internet! I have also gone to the extreme of calling the phone numbers on products while standing in the grocery store to ask "is your product gluten free?" Most companies can tell you straight away. If they can't...move on to something else!

I started with a very basic diet. Stuff I KNEW was safe. Whole foods like chicken, fish, vegetables, soy-milk and almond milk (mmmm...vanilla almond milk is yummy!) Chex cereal is safe. I swear if I don't feel good, I'll live on Chex cereal and soy milk for a day! Do your homework and enjoy the healing power of going gluten-free!

[bincongo]

Thanks for your reply. I bought Silky Soy and it says it is gluten free but I will have to call Starbucks to see if that is what they use. My question now is that people have posted that they had to take soy and corn out of their diet. Does that mean Soy milk? Does it mean corn syrup. I am not sure how to look for the additional ingredience. I am hoping I get by with just taking the lactose out. Since I am still having some symptoms all the time I am not sure how to tell if I am even on the right track.

I went to Starbucks and they use their own brand of Vanilla Soy milk. It didn't say gluten free on it. I guess I will have to call them.

[T.H.]

For those taking out soy and corn, it's usually just as intensive an 'ingredient hunt' as the hunt for gluten, sadly. For the lactose, some people can't take the lactose, some can't take any milk at all, so that might be an easier start to just avoid milk altogether. The corn - unless you've tried other things and nothing seems to be working, you might want to wait on that, because honestly? Avoiding gluten is easy and care free compared to avoiding corn.

If you haven't yet, if might be useful to look up ways to get cross contaminated by gluten, too. That might be your issue - could be nice and simple.

For example? If you get any of your shampoo in your mouth when you rinse it off, it has to be gluten free. If you kiss someone, the lipstick/chapstick needs to be gluten free. If you chew on your nails or put your hands in your mouth a lot, you want to make sure any lotion on them is gluten free. That's the sort of thing that can trip you up in the beginning, I think, but it gets to be second nature after a few months.

[missceliac2010]

1. My question now is that people have posted that they had to take soy and corn out of their diet.

2. I went to Starbucks and they use their own brand of Vanilla Soy milk. It didn't say gluten free on it. I guess I will have to call them.

1. Some Celiacs/people allergic to gluten notice that they are still not getting better after removing the gluten from their diets and all possible cross contamination (cc). If that becomes the case, it's recommended that you begin to eliminate more things, like corn or soy, one at a time, until you find the culprit of your continued symptoms of food allergies. I'm not expert, but from my research it's pretty common for someone with a gluten allergy to also have a lactose intolerance and/or other food allergies. If you want to remove corn from your diet, you'll have to do your research and find out all the places corn hides. I know that allergy is trickier, but their are people on this board who are corn free as well, and I'm sure they'd offer great advice. Of course, you can always do a trusty google search to get the basics, and use the board for fine tuning. (That's what I do.) Same goes for Soy. By the way (and this is important), remove things one by one, alone....not in combination. If you do that, you will never know if it was the corn or the soy (or both) that bothers you! You certainly don't want to live your life on a more restricted diet than you need! Don't make it any harder on yourself than it has to be! I for one would start with the removal of soy if you think you still have additional food allergies and are not getting better. It's much easier! The manufacturer Blue Diamond has an excellent Almond milk, and you can also buy Rice milk as alternatives to soy milk.

2. Starbucks.com has an excellent website and helpful people in their call center. I drink their Soy lattes almost every day, and I do not react. But heed my warning.... when I first got diagnosed, I was in love with their "Frapachino light" blended drinks. I went in one day and explained to the girl that I was allergic to gluten, so it was very important they use a clean blender... when another employee walked over and said, "You know those are not gluten-free, right?" I told her "no I didn't, and in fact, the research I'd done said specifically that they were gluten-free!" She went on to explain that they "changed" their base mix very recently (when they came out with their new "have your frapachino any way you want it" campaign. She continued to tell me that her Mom is a Celiac, so that's why she knew. But the good news.... the non-light versions of frapachinos are gluten-free! Yay! I just tell them no whipped cream topping and to use soy milk and voila... a gluten free treat! The sugar is a little higher in the regular mix instead of the light, and it packs more calories, so I keep myself to a 'tall', size drink. If you are soy intolerant, I bet you could chat up your local Starbucks employees and get them to make your drink with rice or almond milk (that you provide when you go in!) I know that my step sister worked at Round Table pizza for a while, and they would allow my Dad (also a celiac, but far less sensitive than me) to bring in his own pre-baked pizza crust, top it and cook it in their oven! So cool! Of course, I would never do that, because the risk of cc is too high and I am too sensitive. What if my crust touched another crust in that oven?! AHHHH! But like I said, he's less sensitive after being diagnosed for over 20 years. Point being, Starbucks might still be an option, even if you are soy intolerant! How cool is that?!

Hope that helps!

[bincongo]

Thanks a lot, very helpful. I took away lactose and I am feeling better so I am hoping that I can still use Soy. I really miss my Starbucks and can use this imformation to still enjoy some things. I thought for sure that the frapachinos were out. Dose anyone know how many Celiacs are able to back on lactose after they heal or is it usually a lifetime problem.

[psawyer]

Once of the functions of the villi is to produce lactase, the enzyme needed to digest lactose. If this is the cause of lactose intolerance, then it will likely be resolved once the villi are healed.

[Skylark]

Thanks a lot, very helpful. I took away lactose and I am feeling better so I am hoping that I can still use Soy. I really miss my Starbucks and can use this imformation to still enjoy some things. I thought for sure that the frapachinos were out. Dose anyone know how many Celiacs are able to back on lactose after they heal or is it usually a lifetime problem.

I don't know a number, some celiacs are definitely able to tolerate lactose better once they heal. Lactase is made at the tips of the intestinal villi.

[HappyGrandma]

I'm new too and all I can tell you is READ, READ and READ some more. Felt like I spent the day in Krogers shoppping. Already made a boo hoo by buying Van's gluten-free waffle. You have to read everything. Ate one this am and my stomach is killing me. I got off diary because of a yeast infection that took over my body first. Really haven't missed it at all. We have eaten at Outback a couple of times and did just fine. They have a gluten-free Menu.

Good Luck.

[michellern]

I am new to celiac disease too! About 3 weeks. I am still having awful nausea and I have no appetite! Does anyone have any suggestions?

[bincongo]

I'm new too and all I can tell you is READ, READ and READ some more. Felt like I spent the day in Krogers shoppping. Already made a boo hoo by buying Van's gluten-free waffle. You have to read everything. Ate one this am and my stomach is killing me. I got off diary because of a yeast infection that took over my body first. Really haven't missed it at all. We have eaten at Outback a couple of times and did just fine. They have a gluten-free Menu.

Good Luck.

I still know the feeling of shopping taking forever but it is getting better. I have Van's gluten-free waffles and the kind I have says it is also lactose free. Maybe you got the wrong kind. I can't wait to try Outback. PFChang's is good for their gluten-free menu too.

[sandsurfgirl]

I didn't read all the replies so pardon if I repeat.

It can take awhile to heal the damage in your intestine. I got better slowly over time but I wasn't feeling great for 6 months. (sorry for that bad news.)

You will go through a withdrawal period where your body will go wacky wonky on you. I couldn't eat all sorts of things at first and now it's all back except soy.

The best thing for your healing gut is a simple, clean unprocessed diet. Meat, veggies, eggs, plain rice or plain brown rice, fruits. I know it sounds boring but your body needs all the help it can get to heal.

There was a long period where I just could not eat complicated foods at all. Anything with more than a couple of ingredients and I couldn't deal.

Even now I generally eat clean and simple for the major part of my diet. I eat very little dairy and no soy except occasional lecithin additive.

Somebody posted about being super hungry. That is part of the withdrawals. EAT because your little army of construction workers is trying to repair all that damage and they need raw materials!

[Skylark]

I am new to celiac disease too! About 3 weeks. I am still having awful nausea and I have no appetite! Does anyone have any suggestions?

Try cutting out dairy to see if it helps. Some folks are also sensitive to soy but dairy sensitivities are really common in newly diagnosed celiacs. Some people find the processed commercial gluten-free foods give them trouble. It may be traces of gluten or reactions to some of the exotic flours or the vegetable gums. Stick to simple, home-cooked foods as much as you can for a while.

[i-geek]

Thanks a lot, very helpful. I took away lactose and I am feeling better so I am hoping that I can still use Soy. I really miss my Starbucks and can use this imformation to still enjoy some things. I thought for sure that the frapachinos were out. Dose anyone know how many Celiacs are able to back on lactose after they heal or is it usually a lifetime problem.

I've been gluten-free for 7.5 months now. I had to heal for about two months before I could handle butter and hard cheese, and another month or two before I added back yogurt and lactose-free milk. I ate ice cream with a Lactaid pill at the end of May (usually I would need several pills and would still get sick), no problems. Last night I had a cappuccino at a restaurant and forgot my Lactaid pills. No problems. That's the first time in years that I've been able to do that. It was a pain going dairy-free for that time but totally worth it if my gut healed faster as a result.