Celiac Disease - Mount Pleasant,PA

Did your doctor not give you this information? As you know, Celiac is an immune reaction to gluten, so you really need to treat avoiding gluten seriously, as it's poison to your body and is destroying the lining of your gut and causing all kinds of inflammation.

In addition to avoiding gluten - which is thankfully getting easier and easier each year as this becomes more of an issue and more GF products come to market, you of course have to consider your Crohn's and those dietary restrictions. I have some relatives with Celiac and other's with Crohn's (one with colitis as well) and from what I have learned from them, while Celiac disease is a literal allergy to gluten, with Crohn's and/or colitis, what irritates your intestines is varies greatly from person to person. Some people need a low fiber/low residue diet either temporarily during a flare-up or long-term while other don't. Some have issues with raw vegetables, nuts, etc. and others don't. Some get worse with dairy, others don't.

I would think that your doctor would be able to refer you to a nutritionist who can help tailor a diet that's best for you? In general, a paleo-style diet is a good fit for Celiac and seems to help a lot of people reduce symptoms of inflammation in general as it eliminates the most inflammatory foods, which are grains (gluten and others) and dairy products. You may find that as you incorporate dietary changes to accommodate your Celiac disease that your Crohn's symptoms subside as well.

As you learn to eliminate gluten, be aware of hidden sources such as soy sauce, dressings, and seasonings. I found that as I eliminated gluten and other foods as part of an elimination detox, it was easier to just learn to dress a salad myself (oil and vinegar, salt and pepper, garlic powder) and use fresh spices instead of seasoning packets for preparing meats and fish. Oats do not contain gluten but there is a lot of cross-contamination between oats and glutenous grains so if you buy oatmeal, make sure it specifically says that it is certified gluten-free.

There are lot of gluten-free breads, pastas, cookies, cakes etc. out there but honestly, you're probably better off avoiding them in general and only having these substitute items for special occasions. I don't even miss pasta and bread and if we're having a party, I make GF cookies or cupcakes as a treat for myself.

Good luck as you adjust to this...it's probably really discouraging news, but once you get these foods that are toxic to your body out of your system, you're going to feel so much better!

You already know what to avoid, and how to read labels in detail. There are far more gluten free products than ever before and they are pretty well labeled.

The Crohn's adds another layer of concern. You have plenty of foods to avoid, but you also have to consider healing the inflammation that's already present. I work with a lot of people with either or both diseases. One close colleague has a daughter who has dealt with celiac for 10 years or so. They've supplemented carefully and worked a lot that way to reduce the inflammation. Her daughter has been symptom free for many years, and while she doesn't eat gluten obviously, she is at the point now where she will not have a reaction if she is accidentally cross-contaminated. That's a huge relief and makes it possible for her to eat in restaurants and at people's houses. We both work in this field and we're blessed to have such a good training program and network of helpful colleagues. That's what got her daughter where she is - the one on one attention plus scientifically based supplements to maximize absorption of nutrients. That absorption problem is always a nightmare for people with any sort of dietary or digestive issue.

There's a dietary anti-inflammatory that also helps a lot with immune system support. It's very powerful with all the many auto-immune diseases that are on the rise, including Crohn's. Avoiding all the tests and re-tests can be very helpful and less stressful.

But these things take time and it's good to be a part of a network of others who can help and advise. Doctors know some, but given that their orientation is pharmaceutical and not nutritional, and they've had few if any classes in med school, they can't be your last line of defense.

Sorry about the diagnosis.Fortunately there is so much more known now about celiac and its treatment than there was a few years ago, and SO many more products for celiac patients to eat and enjoy!

In your online searches, have you latched onto the patient support groups that are out there? Google "celiac association" and you will find several different celiac support and information non-profit groups. Find one that has meetings in your area or near enough that you can get to them. You need meetings where other people, who have had celiac longer than you have, talk and share information and most of all give each other support and emotional backup as they remake their lives to deal with the disease. If you just live too far to get to regular meetings, you can find onliine support groups --not like Mamapedia but probably some forums just for celiac patients. Google "celiac patient forum" or something like that.

Meet in person if you can with other patients and form some bonds with a local support group -- those people can give you real-world information on dealing with this day to day, which we can't do in a few posts online.

Possibly a local hospital has a celiac patient support group where patients meet each other and get talks from medical professionals. Most hospital systems have patient care organizations that provide services like these. Even if you have not been IN the hospital you can attend these kinds of support groups so do some research on what local hospital systems offer. (This is the same kind of ongoing support that hospitals provide for new parents, diabetes patients, cancer patients, etc. Find out who does those programs and ask about celiac groups--or ask them to start one!)

Were you diagnosed by a general practitioner or a specialist? I hope that, since you already have Crohn's, you are in the care of a specialist! You truly should have been given plenty of information by the doctor about foods etc. and if you were not -- consider finding a new doctor. You must not be left to navigate this alone because it's serious and requires a lot of changes. Were you referred to a nutritionist to help you remake your diet, root out problem foods, work with your family so THEY understand your condition and its seriousness? Demand a referral to one (so insurance covers it) and demand that it be someone who specializes in working with celiac patients -- there are such nutritionists out there. You need extra support right now, not a doctor's diagnosis followed by...nothing.

I don't have celiac but my good friend's husband does. In retrospect he now knows celiac is likely what killed his mother many years back when she was young, before anyone knew what it really was or what caused it...It took decades to get him diagnosed and he very nearly died before he finally was properly diagnosed -- his wife was told to prepare herself for him to die. His body would not absorb nutrients. He is in great health now on a totally gluten-free regime. Yet people still say things like "Oh, all this stuff about celiac and gluten-free and such is just a food fad." I hope your loved ones take you seriously and give you support. This is a disease that makes the person have to bring up his or her eating restrictions over and over and over to strangers, waiters, friends, etc., and there is an emotional component to dealing with that -- you will experience uninformed comments or eye-rolling by others at the dietary restrictions. But YOU know that if you eat wrong, you will be very ill -- or worse. This is why a support group of other celiac patients could be very helpful, so you know you have a place to go where you can talk with the only ones who totally get what you're going through.

You are fortunate to be diagnosed and ready to move on to a new way of living. You can do this--there are lots of products and lots of advice out there, but most of all, get in touch with other patients and keep your doctors on their toes if they are not giving adequate support.

We are new to Celiac, too! My 4 year old is having an endoscopic (biopsy down throat) next month to confirm diagnosis. Doctor is 99% convinced, based on symptoms, that's what it is.

I've done a lot of reading on Gluten Free food/recipes. I have a couple of friends on GF diets and they are the best resources. They are the ones that can tell you which GF pasta tastes the best, etc.

One friend orders a bunch of GF food (non-perishable) from Amazon. She also likes Whole Foods and Trader Joe's. I've noticed a lot of foods we already buy are GF, like: Frito's, Yoplait yogurt, Chex cereal, Hebrew National hot dogs, Pirate Booty (baked cheese puffs), etc.j

Are you on FB? I was going to look for a GF facebook page or Celiac page. Good Luck!

Read every single label of everything you buy. A lot of foods are marked as gluten free which makes it a little easier when shopping. When you are trying something gluten free only buy the smallest size. It will cost more but if you don't like it then you don't have a large quantity to use or throw out. Some gluten free stuff tastes terrible because it doesn't taste like the stuff with gluten that you are use to .

All great answers so far! My only addition would be to download an app - there are lots out there - where you can type in the product you want to eat and it will tell you if it's GF or not. One caveat - I downloaded a free one, the almonds I scanned were technically GFree but they were packaged in a plant that also processes wheat....and the app did not indicate that information. Those with Celiac disease should be extra cautious and also avoid eating foods with cross contamination.

Also - my friend with celiac disease did not know that "borracho beans" were beans soaked in beer! Sorry no beer but enjoy Angry Orchard or Woodchuck - two of my favorite gluten-free ciders.