Doctors diagnosed my daughter as not celiac?

[black21]

My 14 year old daughter has been getting terrible flactulence for at least a year now and in the summer she passed out twice after terrible stomach pains. She now gets frequent pains and sometimes won't go to the toilet for three-four days in a row. Even on laxatives, (when she went to the toilet more frequently) the symptoms persisted. The doctors we approached have simply brushed this under the carpet and are focusing on her growth (she has a bone age of 11 when she is 14.) I was convinced that she had celiac but the test came back negative for celiac. However, it seems to be worse after pasta/bread (and rice? (although this is not gluten)). Any ideas? It is causing her a lot of pain and she is usually very active and hates not being able to do her usual activities.

[Heman69]

She could have gluten sensatvity or allergy still and not be coeliac or Irritable Bowel syndrome.

[Hidden]

Hi. My son is 14 and has an autoimmune disease called mixed connective tissue disease. He had terrible burping, bloating and pain (not typical of his autoimmune disease). He tested negative for coeliac antibodies and even negative for the HLA genes associated with coeliac. We were advised no need to cut out gluten as all tests were negative. He went on to have h.pylori test, barium swallow, abdominal ultrasound - all negative. He was in so much pain and missing a lot of school we decided to try going gluten free anyway to see if it helped. Within a few weeks symptoms loads better but we noticed some milder problems with dairy so we cut this out too and all symptoms resolved completely. He now follows a paleo diet for his autoimmune disease which we have been doing for about a year now. He avoids all grains, especially gluten. He was on 5 different medications for autoimmune disease before changing his diet, and now he is on none at all!! Diet is very powerful. I am not suggesting that your daughter has an autoimmune disease but she probably does have a food intolerance and it sounds like gluten is a likely culprit. If rice is bothering her, you may need to cut out other grains too. My son has white rice only (rinsed really well before and after cooking) as the husk on brown rice could cross react if you are sensitive to gluten. If you think your daughters symptoms are related to gluten then try eliminating it. It’s the only way to know for certain if this is the problem. Good luck.

[Jacks]

It might be worth reading up on Spastic Colon.

[Adrianpb]

Grain and milk protein (not just the sugar lactose) are very likely. But these are only guesses and maybe not the whole answer.

Please use an elimination diet, properly recorded and ideally managed by a dietitian. It really is the quickest and most comprehensive way to discover the full list of intolerances. As with LizzyCee's experience, it's rarely just one food (milk proteins and sugars [lactose/casein/whey] are the most common pairing with protein sensitivities like celiac) but it could be a lengthy list. Don't rely on food allergy prick tests as they are so inaccurate many, if not most MD specialists in my area refuse to do them. Prick tests are accepted for airborne allergies, not digestive.

The blood celiac test requires up to three months of heavy gluten eating before a result can be somewhat reliable. The test never identifies intolerance or celiac's cousins like FODMAP which mimic the disease over a bigger range of foods. Almost anyone already driven to this site would refuse to do that, so their tests show a negative or a false negative only.

Benefits of an elimination diet: closest thing to the scientific method avaliable to you. The testimonials you read on this site will help interpret the results. Look online for apps or forms to help. Record 24/7 her foods, supplements, bowel movement descriptions, mood, energy changes, meds, behavior changes, pains, menstruation, mental acuity. Both her and an observer (you) need to maintain a record. Some symptoms may repeatedly occur x hours or x days after a trigger. A professional and/or app will then read and find the patterns.

Don't be tempted to cycle through diets like vegan and paleo first. You're likely to find one (after months or years) that removes the problem, but you will also needlessly remove foods that aren't. Then, in discovering relief your teenager will likely refuse to experiment further and rigidly stay there (like my daughter). Then, if not using professional dietary oversite, over time she could develop new symptoms from vitamin/mineral deficiency or new intolerances to overly consumed foods. Mapping was my road back to the celiac diet I once outgrew. Strongly recommend it.

None of this uncovers physical problems like cysts, twisted gut, parasites, nerve damage, crohns and other inflammatory diseases. Keep pressuring your doctor for an internal exam, ultrasound, and specialist referrals. Her digestive tract is affected by more than you could know! Rarely do doctors say "I don't have answers", they just want you to go away and move on to patients they can help. Not evil, just human nature. You must never let that happen.

My daughter at 12 had digestive issues (especially with lactose) and severe mentral cramps that progressed to 'appendicitis' at 22. Sounds unrelated but it wasn't. Caused not by infection but by ovarian lesions attaching to the intestine, and bursting ovarian cysts spilling caustic fluid with eggs into the abdomen. Despite a determined family doctor, nothing was fully diagnosed or understood until an emergency appendectomy revealed all. Surgens removed her appendix then woke her up, explaned endometriosis and asked consent to return for her ovary. They also told her the pre IVF drugs she was taking had to stop. She was completely devastated, feeling like she lost a child. Now a managed vegan like diet keeps her last ovary alive, but no children.

Good luck with your daughter. Explore everything. Fight with persistence.