gluten-free 5 Years, Now Pain Is Back!

[Norris]

My daughter was diagnosed with Celiac Disease with endoscopy in 2006 at age 9; we've enjoyed 4 1/2 amazing, pain free years on gluten free diet. In November, she became constipated and was flushed with Miralax by our pediatrician. In January (now age 14), she became constipated again and her old Celiac symptoms returned with a vengeance. Constipation, sharp stabbing pain near navel, bloating, cramping, dizziness, nausea, weakness.Flushed with Miralax again in January after xray showed her full of stool. Ttg negative (11 in one test and then 9 in a more recent test) for gluten so we don't believe she was dosed with gluten. Pain finally so bad we had two trips to local ER where they pumped her full of morphine, which gave her temporary relief and probably constipated her again. Wound up driving across Washington State to Seattle Children's Hospital on Super Bowl Sunday and went straight to the ER there. A GI came in and said he "sees this with Celiac kids all the time. Sudden constipation even on gluten free diet." Seattle Children's flushed her with Go Lytely and admitted her for five days. Pain specialist worked with her on self-hypnosis, which actually works great with the stabbing pain until she comes out of deep relaxation; pain returns within a few minutes. Self-hypnosis does not touch the dizziness or nausea.GI at Seattle Children's says this is IBS, put her on amityptaline, and they will not order another endoscopy or colonoscopy as all blood, stool and lab work is "normal." Rheumatology says they don't think it's Crohn's or ulcerative colitis, and we are at a loss.We have tried about five acupuncture appts. with no benefit yet. Full body massage allows her some brief escape from pain. Restorative yoga is not helping. We are tying to get into Doernbecher Children's Hospital in Portland, Oregon for a second opinion. A dr there put her on neurontin and bentyl during a phone consult with or local ped last week but NOTHING IS WORKING!!!If you have any ideas, please advise! She has been out of school since January 5 and does not feel well enough to even read a book most days.

[etta694]

I know nothing but, just from a distance, is there any chance there is some unrelated stress in the background? Like relationships at school that are exacerbating the problem? If that is not an issue...is there ANYTHING different that started then? Make up, shampoo, did the school start doing anything different? (I don't know.. baking or hire someone in the cafeteria that isn't aware or change their air venting and kitchen dust is being circulated?) I'm grasping.. I know there will be more help later from others.

[mommida]

My daughter was diagnosed at 17 months of old with "probable" Celiac. ~ Long story, she was too sick to have the endoscopy for "gold standard" diagnoses.

Everything was great until she was about 6. (4 1/2 years gluten free) Then the pain and Celiac symptoms started like she was getting glutened. She then started vomitting about 5 times a day and she was getting constipated. She was getting very tired, headaches, dark circles under her eyes, and just too weak to go to school.

The ped. gastro. did do more tests because these symptoms can be a hernia, H. Ployri., parasites, congenital defect, or an Eosinophilic disorder in the gastro. track. (The list of possible suspects is quite long and I just can't remember all the possibilities.) In her case she was diagnosed with Eosinophilic Esophagitus. Eosinnophilic disorders are not easily diagnosed as biopsies from "normal" looking tissue need to have the proper pathology report ordered at the time of testing and knowledge of the disorders is not as common. (in short it is even a harder diagnoses to get than Celiac ~ In my opinion.)

So you need to start working with a pediatric gastroenterologist to find out what is going on and it could very likely be a disorder associated with Celiac or another issue entirely.

Kids will report pain in the belly when it is coming from another area. (Daughter only really complained of belly ache and barely mentioned she had a sore throat.) The doctor was starting to wonder if she was having abdominal migraines. (We did not pursue this diagnoses since we were going through major insurance changes in our coverage.)