Celiac Disease - Camp Verde,AZ

I did research on this at Children's hosp in Denver. I am a dietitian. the blood tests basically test an immune response to gluten, the protein aspect of grains like wheat. High blood levels usually lead to an intestinal biopsy, which is the gold standard of dignosis. the blood tests have improved since we studied them, but they are not perfect. It is good to ask if your specialist has a lot of experience with celiac because the biospsy and labs are best performed by those skilled in this specialty as subtle findings can be missed. Until you are certain I would not change anything (unless your MD advised otherwise). this is because you want the specialist to diagnose your dtr with her usual diet not based on a change. The little villi on the intestines of someone w/ celiac who is eating wheat can be blunted, and they can regenerate when they are off gluten. this occurs much faster w/ kids than adults. there is a local celiac support group in most towns and they can be helpful in getting you started should you need that. Also I can email you book titles and websites on celiac that are reputable. I would wait though and make sure you need them and then email me back. Good luck, you will get through this! A. D

Hi J.. My son was diagnosed with Celiac when he was 3. He is now 8 and doing great! We were lucky that our doctor called the specialist himself and asked what specific blood tests he could run while waiting to get in. The blood tests came back abnormal, as well, and the specialist said we could treat it as Celiac disease or find out for sure by doing a biopsy on his intestines. We opted for the biopsy to make sure that that is what we were dealing with. The way to treat celiac, as I am sure you have now researched, is through their diet. The specialist will ask you to not change their diet yet if you are opting for the biopsy. If you make their intestines better by changing the diet then there isn't much they can tell on the biopsy because the cilia are going back to normal. Let your child enjoy eating what you eat for now. If your daughter does have celiac, it seems really hard in the beginning to know what to feed them! Believe me, it gets better. Amazon.com has a great selection of gluten-free food and is much cheaper than the stores but is in bulk. I would suggest you have your daughter try different things from the sotre to know what she likes and then buy it on Amazon. We make our son's bread in the bread machine using Pamela's Amazing Bread Mix. It, to us, tastes better than the pre-made loaves in the store. More and more foods are being labeled gluten-free to help consumers. You can e-mail anytime or call with questiions. It is hard to tell you everything through typing! My number is ###-###-####. Oh, our doctor had a DNA test on our 5 year old daughter to see if she has celiac since we know it is in the family. She in fact is a carrier, we found out. The DNA test was covered by insurance. You might want to ask about that as well. I hope that I have helped you in some way!

K.

My dh uncle has it, there are incredible websites and sources out there. Make sure you don't change anything in her diet until she sees the specialist. It will change the test results if you do and take longer to figure out what is wrong. He felt like a whole new person when he was diagnosed in his 50s. If that's what's wrong it'll be quite a learning curve and very intensive diet change but it's worth it! Good luck!

Hello J.,
My husband has celiac disease and there is a lot out there, its not easy but managebale! you can look up www.celiac.com and www.celiac.org both great websites. i have been in contact with another woman who has celiac as well as her 2 kids! and she has been sending me many ideas! if you would like to email me and i can pass some of this info onto you! also if you would like i would be more than happy to meet you at a Whole Foods mamrket and i can show you all of the foods and mixes that they have! we thought it was one of the worst things that could ever happen but now we know its just a healthier life style!
J. ____@____.com

My son was tested last year for Celiac also. I understand the stress you're going through. Waiting to find out is torture. Like others have said, don't do anything at this point. Continue with the same diet etc. Try not to get too worked up about it. She may not have Celiac at all. My niece also has a big problem with gaining wait, but doesn't have Celiac. If the specialist decides to go ahead with the testing for Celiac, your daughter will go in to the hospital for an endoscopy and/or colonoscopy (my son had both), which they are put out for. My son had no bad effects after the procedure. The results came back negative for Celiac thank goodness. Good luck!

J.,

Celiac's is an allergy to gluten which is in most bread and pasta products. If your daughter has Celiac's she will have to avoid anything with wheat, barley, rye, spelt, and any other grains that contain gluten (but you probably shouldn't do anything until she's actually diagnosed). Rice is fine, and so is quinoa. From what I understand, if someone who has Celiac's eats gluten, especially a lot of it or eats it on a regular basis, the gluten attacks the lining of the intestines making it very difficult to absorb nutrients. I'm afraid I don't know how they test for it, but I have heard that sometimes it goes hand in hand with diabetes. My husband has Celiac's & though its been a big diet change, it's manageable. Hope this helps. Good luck!

L.

Hi J.!
A friend of mine, both of her girls and her husband have or had celiac disease. She got both of the girls cured just this past couple of months. They can now eat ANYTHING! It is such a celebration!!! She got help from a naturalpathic. I'm not sure how you feel about that. Everyone feels different about that. Her husband is due to go in soon. If you want more information about where she took her girls, please email me back!

I also know how you feel about losing your mom. I'm in the same boat. She's been in heaven for a year and 2 months now. Hardest thing I ever went through and still going through. Now with having my two girls, it's really hard not having her around. I'm so sorry you had to go through losing her.
Anyways, let me know if you want that info!
D. :.)

No Celiac kids as far as I know but, my husband does have it. Bottomline is that your child will need a gluten-free diet. Gluten is the protein in wheat and barley (maybe also rye). There is a Celiac support group in Tucson. I don't have their contact info. Hopefully you can find them on google. You'll find lots of Gluten-free options/substitutes at Sunflower, Wild Oats, Whole Foods and New Life. Bread is very hard to fake. My husband has decided it's not worth the cost or effort to do GF breads. You'll have to watch for gluten fillers in processed foods. Most soy sauces are made w/ Gluten so you have to watch out at a chinese restaurant... There are many restaurants that have GF menues available. Always ask. Oh you will probably also want to eliminate oats (at least at first while you get her gut healthy). Oats are often alternated with wheat crops so there is some 'contamination' in a give Oat crop. Hope that helps. BTW: When my husband got off wheat, he started feeling better after about 3 weeks and within 6 months he felt like a new man -- way more stamina for sports and things like that. I hope you will see such dramatic results with your daughter also.
R.

My son reached 4 months weighing 20 lbs. At his 2 year check he was still 20 lbs. He had a blood test and it showed he was allergic to wheat, soy, oats, milk, all nuts, peas, carrots, eggs, pork, beef, and the list goes on. I was sent to the Gastro Dr. they took a stool sample and another blood test, then a sample of the intestinal tissues. The wait was hard in between his appoints since I started to gather info on how to help. But don't change anything until after the specialist. They need to get a true reading. Nowmy son eats a gluten free diet, everything made of rice. There are companies that provide complete meals for people with celiac disease. You can order the meals which are a little costly but then you can start to make them yourself once you get familiar with what she can have. Once you find yourself needing to shop and cook differently, you will see the foods that are available in the stores to help you.

My prayers are with you.

K.

There is a good website here in Albuquerque: ROCK: Raising our Kids Celiac. Lots of good info. Google it or:

http://www.celiac.com/articles/563/1/ROCK-Raising-Our-Cel...

S.

We have a friend whose child has Celiac and our friend does, too. I know that the issue is gluten and having a gluten-free diet. Our friend's son used to eat "special donuts" that he loved -- maybe you'll be able to get them at Whole Foods. My friend who has Celiac goes there to get a lot of her food. You may also want to ask this question on this site: www.empowher.com/ask -- they allow you to ask any health question for free & you'll get an answer. Hope this helps!

My husband and 3 girls (8, 6, and 3) ALL have Celiac Disease. If you've been referred to a pediatric gastroenterologist, don't do anything until you see him/her. The only treatment for Celiac Disease is going on a Gluten-Free diet for life (yes, no wheat, oats, barley, rye for life), and if you start that before the rest of the testing is done, you will mess up the blood/endoscopy tests.

Do you know what the blood test was that your doctor ran? I'm NOT a doctor, but my family went through this almost 5 years ago, so I am pretty familiar with the testing/what to do.

Symptoms can include: distended belly, failure to thrive (starting around the time solid foods were introduced), extreme diarrhea (no formed stools), extreme constipation with panful gas, tooth enamel problems, developmental delays, joint pain, migraines, brain fog, seizures....

Hope this helps, let us all know how it turns out!

E.

Hi J.. My daughter went through the gammet of testing for everything including celiac disease. Celiac needs to be tested two different ways to be a real diagnosis. The blood test and endoscopy. The endoscopy is where they have to go through her mouth with a tiny microscope. They check the esophagus, the inner lining of the stomach and the duodenum which is the first small part of the bowel/intestine. What they are looking for are damaged celia. If they are damaged, or not there, or abnormal, they will determine if it is celiac with a biopsy that they can do at the same time as the endoscopy. My daughter was 10 when they did it to her, and she was a real trooper. She was asleep via anesthesia, so she did not feel anything. She did have a mild sore throat and her tummy was bloated a bit, but they both went away rather quickly. We were lucky in the fact that she did not have celiac. Celiac is a very difficult disease to live with. EVERYTHING that you eat whether it is packaged or not has to be questioned as to what is in it...oats, gluten, etc. There are some new wonderful products on the market now, which when she was tested, there were few and far between items that could be purchased. Celiac is kinda like diabetes in the way that it becomes a "Family" disease. Everyone is effected by it, and may have to change your diets a bit to accomidate the person who has it, cuz it's pretty darn hard to be a short order cook for all the different diets. Everyone gets into label reading, and Birthday cake is a no no, and and you are always making special treats for when she does go to someones house etc etc. As is turned out for my daughter, she was suffering from chronic appendicitis, and the one thing that our insurance would not test for...food allergies!! It turned out that some of the things that we ate a lot of...potatoes, chicken, turkey, peas, etc where the culprits!!! So, don't give up! I feel your worry, and have shared in it. If they keep testing, and find nothing, get her tested for food allergies. In the mean time, go to the grocery store and look for shelf tags that say gluten free. Start her on that diet and see if it makes a difference. February is a long time to wait, and that doesnt count the time you have to wait for the testing. Start reading labels, and put her on a gluten free diet and see what happens. Good luck and God bless.

J.,

Please email me. I am the head of Cel-Kids Tucson (formerly the Tucson chapter of Raising Our Celiac Kids). I am also the co founder of a children's special diet needs support group, and I am on the Executive Board of Southern Arizona Celiac Support. My daughter was diagnosed at age 19 months, and I am gluten free too; I know I recently spoke with somebody who called me from the Phoenix area; was that you?

~D.

There are lots of different absorption and allergy disorders that can cause labs to be out of wack and for weight gain to stop.. we went through the gamment of tests before we got a diagnosis.. there is a great web site- kidswithfoodallergies.com

There is tons of information of different disorders and there are also recipes for when you figure that part out.

Good luck.. I know that the waiting can be the hardest part.

Hi J.,

I'm not sure if you've heard of this book, but it was a real life changer for me. It is called Breaking the Vicious Cycle, Intestinal Health Through Diet. It's by Elaine Gottschall and she founded a diet known as the SCD (Specific Carbohydrate Diet). This diet has helped thousands of people, including myself, as I have ulcerative colitis. It is for those with Crohn's, Colitis, Celiac, Diverticulitis, etc. You can google it and learn quite a bit on the web. It is also available at the library if you want to check it out. I also recommend the website pecanbread.com which is geared toward children with gastro intestinal issues.
Good Luck!
S.

I am not going to tell you anything different. But I do want to re-enforce that if this is Celiac disease, do not put her on a Gluten Free diet until after you have confirmation. It will mess up the testing and you don't want to be running circles doing different test when the first one came back wrong. I have a lot of friends who are Gluten Free and it is do able. There are a lot of option out there, but you need to educate yourself.

Have you thought about calling and seeing if you can get on a cancelation list for the doctor? I have gotten my kids in early by checking with specialists this way. Call up and ask the receptionist if that is possible. One doctor's office refilled their cancellations on Friday morning for the following week. I called every Friday morning. After 4-5 times I was able to get my kids in earlier on a cancellation.