lbsteenwyk

Welcome to the board! This really does get easier, I promise! The diet can be overwhelming at first, especially when you have the added stress of caring for a toddler who has been ill. My dd has been on a gluten-free diet for nearly two years and at this point, it just seems like a normal part of our lives. You just have to push through those first few months, learn every thing you can, take lots of notes, and get yourself organized. It will take a while to figure out which gluten free foods your son likes. I would start out with just a few specialty items and rely mostly on foods that are naturally gluten free. You can get lots of advice on that just by reading through the forum for Parents of Children with Celiac Disease. THere are tons of great ideas there, so scroll back several months and look for topics that interest you.

You're not alone in feeling overwhelmed. Following a gluten free diet is a learned skill; just like learning anything new, it can take time and practice. Let us know how we can help.

Everyone else has given you really good ideas; I have a couple more to add:

corn tortillas made into cheese or mashed bean quesadillas

dinty moore beef stew is gluten free

homemade hummus - it's very inexpensive to make it yourself

I've also had good luck finding local store brands that are gluten free, such as french fries and breakfast cereal. You might want to check out the private label brands of your local grocery. Also, most of the Great Value (Walmart) fries are gluten free.

I find that it is less expensive to make your own bread, muffins, pancakes, waffles etc, rather than trying to buy them already made or making them from a gluten free mix. Once you get your pantry stocked with the gluten free basics for baking you will spend less and have fresher, butter tasting baked goods. Bette Hagman's The Gluten Free Gourmet Bakes Bread" is a good resource for baking if you want to try that avenue.

Good Luck!

You can have both celiac disease and Crohn's Disease, but don't panic yet. Are you sure your son is completely gluten free? Any chance that he's getting cross-contaminated or "cheating" at school? Getting contaminated from art supplies, playdoh, etc? Have you checked his soap, shampoo, etc?

Hi Lisa B:

Too bad we are on opposite ends of the state. I was able to start the support group through the hospital where I work. Someone in the community approached the hospital's community outreach center about starting a group. They needed someone inside the hospital to take a leadership role and of course I jumped at the chance. I've had alot of assistance from Marketing in getting the word out. I wrote a press release which marketing sent out. They helped me with designing a flyer and I distributed it to all the doctor's offices. They also did a short interview with me on the radio as part of their weekly program on events at the hospital. Since I'm a dietitian, I also get referrals from physician when they diagnose people with celiac disease, so I was able to reach those people directly to tell them about the support group.

If you want to start a group, you might approach your local hospital with the idea. Having the support group affiliated with the hospital really helped me get the whole thing going!

Hi, I live near Asheville NC - but I don't have celiac disease, my daughter does. I just started a celiac support group in Hendersonville, though, and had a very good turn out. Where do you live? PM me if you want to chat.

Hi Becky:

This is strictly a personal opinion, but I think it may be too early to potty train your daughter. I didn't even start with my child until she was past 30 months. She has celiac disease and still has problems with constipation and I just felt she wasn't ready, even though she was right on track developmentally. When we started training, though she had it down in a week. (still has occasional issues with pooping, but the peeing was a snap) I think the whole process goes much more quickly if you start later. My son just turned 2 and I will not even try potty training until at least 2 1/2. I don't think most kids are ready developmentally until that age.

I would work very hard on getting the gluten free diet under control so that you don't have the diarrhea issue to handle. It's just not realistic to teach potty training when you child has diarrhea.

Good Luck. I know we all look forward to the day when we can say goodbye to diapers!!

I just want so badly for Ella to be fine and to be able to always feel like she fits in, etc. Of course I know that no matter the situation, kids will always have a time that they feel left out or that they don't fit in regardless if they have a medical condition, braces, freckles, etc.

Try not to focus on how celiac disease will make your daughter different. Every child is different; as parents it's our job to teach our children the value of individuality. Some children need glasses, some kids have diabetes, some kids have ADHD, my daughter has celiac disease. Sure, it's a part of who she is, but it's not the most important part. I'm trying to show my child how to take this in stride, deal with it when necessary, but not focus on it. It's easy to get overwhelmed by the gluten free lifestyle in the beginning - it seems that the entire focus of your life is on celiac disease and the gluten-free diet. But as time goes by, it really does become less of a focus and more of a natural part of your life. Also, don't lose site of how the diet is changing your daughter's life. I remember you saying that your daughter was so focused on food that she couldn't even play normally with other children. It sound like the gluten-free diet is actually helping her to live a more "normal" life.

I sympathize with your wanting a definite diagnosis for your child; I didn't get one for my daughter either. Trust your instincts; you've seen Ella make a remarkable improvement on the gluten-free diet and that should speak for itself.

celiac3270 - in all seriousness you should think about writing a book (it's not like you have anything else to do, right?) You have a great writing style; I'll bet you could get published! I think if you focused on teens with celiac disease you would have a unique and very marketable book. As an alternative, have you thought about writing an article for one of the gluten free magazines focusing on strategies for teens in coping with celiac disease?

I believe that when the vegetables are pureed, the existing fiber is broken down into smaller fibers and becomes a little easier to digest. Insoluble fiber works by holding fluid; when the fibers are pureed, they can't hold fluid as well.

All Bush's baked beans are gluten free - except for the chili beans, if I remember correctly.

All of the celiac tests can be inaccurate in children under 2 years. Also, there is some question about accuracy under 5 years of age. If your child is thriving on a gluten free diet, I would leave her on it for now. Or you could put her back on gluten and pursue an endoscopy and biopsy. Just be sure to get someone who knows how to do the biopsy properly - 4-6 samples from the 3rd portion of the duodenum. There are cases where intestinal damage is apparent, even when blood work is negative.

Many people have secondary lactose intolerance when they are initially diagnosed with celiac disease. This is simply because they are malabsorbing and thus not digesting lactose. It may be beneficial to avoid dairy or try lactose reduced products for several weeks. You should be able to reintroduce dairy once your child's intestines have healed.

There are lots of gluten free protein bars that are portable - though they can be expensive. Here's a link to a discussion about protein bars. I've seen other discussions on this topic here as well; you may want to do a search.

Open Original Shared Link

How about Hummus and tortilla chips? You wouldn't need to refrigerate the hummus and it is very filling.

If you are looking for an RD, I would be sure to see someone who has expertise in this area. Some dietitians are members of Dietetic Practice Groups. There is a sub-specialty of the Medical Nutrition Practice Group called Dietitians in Gluten Intolerance Disease. The American Dietetic Association has a referral service for locating RDs.

Open Original Shared Link

You can type in your zip code and search for RDs by specialty. You can select both Digestive Disorders and Gastrointestinal Diseases/Disorders to find someone who will be most likely to have specialized knowlege in celiac disease. Most of the RDs who participate in this referral service are in private practice, so you may find that they will take extra time to find resources for you, etc than if you just make an appointment with the local hospital dietitian. Most hospital RDs tend to be generalists, unless they work for very large teaching hospitals where they may work in one specialty area. In any case, when you find an RD, call them first to assess their level of experience in counseling patients with celiac disease.

Hi Jen:

I live just South of Asheville. Now I'm kicking myself for not investigating the restaurant scene a little more closely; we just don't take my daughter out to eat at this point. There are TONS of unique and interesting restaurants in downtown Asheville; most of them are small enough that I think they would be very accommodating of your gluten free diet. One place that you might try is the Laughing Seed - it's a totally vegetarian restaurant and they serve a lot of middle eastern dishes and a lot of beans, rice, vegetables, etc. I would call first and talk to the manager, though. Also, both of the local health food stores, Earth Fare and Greenlife Grocery have cafe's with lots of interesting choices. I'm sure you could put together a gluten free meal at either place.

Asheville is a really interesting town with lots of cultural events going on all the time. Have you been to the Grove Park Inn before? It's a beautiful building with an interesting history. If you are planning a trip to the Biltmore House, I can probably get you discount tickets. Let me know if that interests you; just send me a PM.

I'd bet anything you got glutened from the restaurant food. Cross contamination can happen easily in restaurants, even if you think the food is gluten free.

If you doctor thinks you have celiac, why doesn't he just go ahead and get the blood work now?? I would insist on it. You don't need to continue to go through pain while he does all his other tests.

Thanks for the link. I've bookmarked the site.

Some hospitals do inexpensive bone density screens as a community service. Check with your local hospital to see if they offer anything like this.

Welcome to the board! YOu will find tons of great information here. Let us know how we can help

Your son sounds like he could have celiac disease, especially given your father's diagnosis. Does your son have any other of the common symptoms in children, such as underweight, poor growth or a distended/bloated tummy? Any unexplained vomiting? My daughter's stools were very pale and smelly- pale colored stools can be a sign of fat malabsorption which is often the first sign of intestinal damage in children. My dd also developed a severe diaper rash about the time she developed celiac disease, that did not respond to treatment.

You should insist on having your son tested with the panel Katie posted. You may have to tell your pediatrician exactly what to test for; many doctors are not knowlegeable about celiac disease. Blood tests can be inaccurate in children under 2 years, however, so if the tests come back negative that does not necessarily rule out celiac disease. An intestinal biopsy would be the next step. Some children have negative serological tests but positive biopsies. A pediatric gastroenterologist would be the best type of doctor to help you get a diagnosis for your son, although your regular pediatrician could run the blood tests first. If you have a good relationship with your ped and you think he/she would be receptive to your suggestions, you could try that route first. It could take months to get in to see a pediatric GI doc.

I'm so glad you found a supportive doctor! Sometimes you just have to shop around . . .

Also, did you ever feel excessively thirsty? Like, constant, constant thirst? So much it's almost life-impeding?

Are you urinating a lot, too? Excessive thirst and frequent urination can be signs of diabetes. Type 1 diabetes is linked to celiac disease. Maybe you should get your blood sugar tested?

How do you know when something is injected? What exactly does the label say so that you know or suspect, so you know to look into it?

It usually says something like "contains no more than a 12% broth solution" or some similar wording in very small print on the label. Another clue is that the sodium is almost always increased. Most fresh meats have very little sodium, but injected meats have around 300 mg per 3 oz portion.

Here is the full celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

I've read that biopsies should be taken from the 3rd portion of the duodenum, not the terminal ileum. If I only had a positive TTG and felt better on the diet, I would assume I had celiac disease and remain gluten-free. If you have a good pediatrician, you may be able to get a diagnosis for your son before you put him on the gluten free diet. I would demand a full celiac panel for your child; if it comes back positive, you could also feel more confident in your own diagnosis.