desirun

My daughter is 13. She was diagnosed last August. She also had horrible neurological symptoms. We went to a highly recommended and regarded GI doc who was stumped by her neuro symptoms and didn’t believe they were celiac related. We finally took her to the best Celiac GI specialist in our area who understood that her systems were related to gluten and celiac disease. Don’t feel crazy, maybe it’s time to switch doctors. As for the cross contaminations, I would start packing all your own food. It sucks, there’s no other way to put it and life changes, but it does get easier and better. Hang in there and give yourself grace!

My daughter dropped from TTG's of 50 to 18 in two months gluten-free. Keep up the good work!

To clarify, did the endoscopy come back completely clear? Maybe the results are being misread? Do you have a copy of the report? I speak from experience that even GI’s can miss Celiac Disease on an endoscopy report. I’m worried 4 weeks on gluten would be torture and too harmful to your healing body. If your wheat antibodies were high and you responded well to being gluten free ,and now are extremely symptomatic back on gluten, it seems your answer is clear.

Agree with above- retesting her TTG antibody levels should shed some light on the situation.

True, we could both be! TTG testing approved, genetics are not in our case.

Soccer tournament went great. Thanks for your tips and support. Excellent suggestions that helped.

Has anyone done this genetic test yet? My daughter has Celiac, and hoping this is an accurate/less expensive way to determine if my husband or I are the gene carriers for the rest of our family. Any thoughts/knowledge on results vs. traditional blood genetic testing?

Are decorative cookie sprinkles with gluten-free ingredients but made in a facility that manufactures wheat considered safe? So many gluten-free products are also produced in a factory with wheat but test less than 20 PPM...so unsure on this one. If they are not safe, what brands are go tos?

great post.

I need help, my 13 y.o. daughter is 9 weeks post diagnosis, still feeling icky, but wants to travel and play in her 3 1/2 hour away soccer tournament this weekend in Indianapolis..ugh. We'll hit the road Friday and head back Sunday afternoon. Our hotel will have a microwave and small fridge. The team has planned a meal out at Buffalo Wild Wings and other buffet type dinner/lunches. My daughter won't be able to eat from any of these places. I'm stressed about what food to pack and prepare. Should we bring gluten-free food to the restaurant/buffet meals so my daughter can sit with her team? Should I buy a cheap toaster oven to make food in? New to the travel aspect! Thank you for any tips! Stressed...

Ditto above. Run for the hills. Find a new doctor. There is nothing more toxic than a physician treating an illness he/she is not versed in and/or making up an unfounded treatment plan! Good job following your gut, something IS way off!

Agree with Cycling Lady. My friend's daughter with Celiac is chronically constipated and takes Miralax daily. My daughter was diagnosed 9 weeks ago. She initially had diarrhea 5-6 times a day. Now that she is gluten free, she has 1-3 formed BM's a day. One thing I've really learned is the symptoms vary so very much from person to person.

Celiac.

Hi Phoebe- We're paddling up stream in the same boat. I have a 12 year old daughter who was diagnosed with celiac disease 6 weeks ago. She struggles with a lack of appetite, abdominal pain- often worse than pre-diagnosis, and increased pain after eating. The evenings are the worst! I call it the celiac witching hour. After a few bites of dinner she often starts moaning and ends up on the couch. She is TINY, 10% on the growth chart for her age, skin and bones, and has lost 3 pounds over the 4 weeks. I know how you feel, exhausted, discouraged, and terrified that trace gluten is contaminating your girl. Over this past week and a half I feel we are turning a corner. Here is what has helped: 1. Our GI rechecked her TTG's, they are coming down nicely, so I know she is not getting trace gluten. Depending on your daughter's case, your GI may do the same. It was helpful to decrease my anxiety and rule that out. 2. Our GI took her off dairy a few weeks ago, I KNOW it's an awful thought and exhausting to contend with removing more from the diet, but it's not so bad. The good news is you will know quickly, in about a week if dairy is making a difference after removing it. The problem is lactose in milk products. When healing from celiac, compromised intestines often don't successfully communicate with our other organs to emit digestive enzymes (including lactase, the enzyme needed to digest lactose in milk based products). Also, you can simply give your girl a lactase chewable enzyme for kids with a dairy containing meal is she really loves a certain foods that you'd rather not take away right now. Fairway Milk is lactose free, it's ultra filtered, so very high in protein, low sugar, and delicious (my kids like it better than regular milk). Truly, I found dairy is relatively easy to substitute. I will say however, taking our daughter off of dairy for two weeks did not make a difference, but maybe something that will help your situation. 3. When my daughter wasn't eating a substantial meal, she would still take her multivitamins. These can be tough on the stomach lining and cause stomach upset and nausea. I started to make sure she had a good meal before taking her MVI. 4. We were given the thumbs up on probiotics. My daughter took children's culturelle daily for a few months: prior to and after diagnosis. I pulled it 2 weeks ago just thinking maybe it's too much right now for her system. Maybe something to consider. 5. My daughter improved consistently (much less abdominal pain, formed BM's, and began eating much better) after adding childrens digestive enzymes with each meal. What I mentioned in #2, the lack of digestive enzymes with celiac disease, may include other enzymes in addition to lactase. Maybe it was timing, that she was naturally turning a bit of a corner, but it also coincided with starting "Tummy Zyme" kids digestive enzymes by Animal Parade. I read about the lack of digestive enzymes in the book "Celiac Disease-a Hidden Epidemic." I then researched kids digestive enzymes and these were rated well. 6. I found by talking to my daughter she could pinpoint what didn't upset her stomach, foods that she seemed to always tolerate well. Maybe due to simple ingredients, or maybe psychological, she could always tolerate skinny pop (popcorn, salt, and sunflower oil) and Milagro corn tortilla chips w/ Goodfoods chunky guacamole. I add extras in her school bag, in the car, and on the go for snacks. I'd let her choose these over other healthy snacks or foods I had in mind if it meant calories and her actually eating. Maybe there are foods your daughter can pinpoint helping? I recently talked to a few celiac disease moms and they said it took up to 3 months for their child to feel better and eat well consistently. I've also heard it's not uncommon for your child to have good/better days and then bad days during the healing process. I hope you're daughter begins to feel better soon and is able to take in more calories!

If it were my child, I'd keep him off of gluten and dairy as recommended by the dietician, especially since he's not well and this is possibly celiac. It won't hurt him to be off of gluten and he may even improve, but if this is celiac disease or gluten intolerance, he will not improve on the gluten. Right now your goal is for him to be well as soon as possible. I personally would wait until your son is healthy and recovered to even consider reintroducing gluten for a challenge. There is nothing worse then not having clear answers. I would encourage you to be persistent. Eight weeks is not typical for a "bug." Follow your gut, if you are getting the cold shoulder see another doctor/doctors. Get and keep copies of all test results as part of your son's history to help new consults avoid retesting and to help determine the next steps in his care. Have you seen an allergist...?