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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Hi everyone. I am new here. I don't know where else to turn. My 10 year old daughter has been having severe stomach/abdominal pain for the last 3 weeks. First she was diagnose with a UTI at an ER after her pediatrician said she had a sinus infection (seriously?). She was on antibiotics for that but she continue to have severe pain by her belly button down toward her right side of her stomach, where she could not even walk to the restroom. We took her back to the ER and they thought it was her appendix but the MRI could not see the appendix. She did not have any other symptoms of an appendicitis so the ER released her. Again she went to the ER for a third time due to pain and they said she was constipated. Gave her an enema and she felt better. The next day, the pain was back. Its a burning pain that feels like something is pushing through her stomach trying to come out, is how she explains it. I did take her to a GI specialist which we are seeing again later today. All the blood lab results are normal. Except dairy, wheat and egg. They have an 0/1 next to it. What does that mean? Is she allergic to everything?  She is schedule to have an endoscope on Friday. I hate that she is going through this. My wife and I are lost and devastated about all of this.   Any help or suggestions will help. Thank you for reading my post. 

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The celiac is specific blood panel that they need to ask for and do the full panel, they will follow up with a endoscope and biopsy to check for intestinal villi damage. She needs to be eating gluten daily for this.
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
 

For now keep a food diary and record everything she eats, how is prepared, etc. and time frames of various symptoms and how she feels. Remove Dairy for now, celiac dairy is commonly a issue as with damaged villi the enzymes to break it down will be a issues and cause various gastric issues.
https://www.wikihow.com/Keep-a-Food-Diary
For help with the constipation start your daughter on Natural Vitality Calm, it is magnesium supplement, many with this disease have issues with magnesium leading to constipation or other various nerve, brain, etc issues. Start her on 1/4tsp (1-2g) a day and up it slowly 1/4tsp a day til the RD or she gets loose stools (dosing to tolerance) then back it back down. Magnesium naturally helps keep water in the intestines for softer stools. Make sure she also drinks plenty of water.

Come back and tells use what you learn after testing, other issues she could be having could be UC, IBS, other food intolerance issues, or something short term and simple like SIBO. Probiotics might help here a bit to like Nature Plus Fortify.
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
 

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Thank you Ennis_TX . This is really helpful information. I will make sure that the GI doctor test for a full Celiac panel. I will defiantly come back and advise what we find out. Thank you so much. 

 

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Posted (edited)
3 hours ago, Erick said:

 

It is great that you are working with a GI.  As a parent, I know that it I s hard to see your child in pain.  Keep all records.  I can not stress the importance of this as you may need a second opinion, if you do not get results. 

An allergy to wheat is different from celiac disease which is an autoimmune disorder that has a known trigger — gluten (unlike say, lupus, which no one knows what triggers a flare-up).  An allergy can be swift and cause hives, swelling, breathing issues, itchy eyes, runny nose.  An autoimmune flare is usually much slower.  Intolerances are common if you have celiac disease.  For example, I used to have lactose intolerance.  It caused symptoms but no intestinal damage like celiac disease can.  Allergy testing is not perfect.  Keep that in mind.  Google it.  

Edited by cyclinglady

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Posted (edited)

Thanks everyone.  The GI doctor suspects its something psycological. Maybe something she is worried about  is causing the pain. For him to say that and my wife believe it just pisses me off.  I can see she is physically in severe pain. All test are normal and he wont know anything else until Friday from the endoscope.  I am in tears right now.  Thank you 

Edited by Erick

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2 hours ago, Erick said:

Thanks everyone.  The GI doctor suspects its something psycological. Maybe something she is worried about  is causing the pain. For him to say that and my wife believe it just pisses me off.  I can see she is physically in severe pain. All test are normal and he wont know anything else until Friday from the endoscope.  I am in tears right now.  Thank you 

Do you suspect it is something psychological? Pediatricians are trained and taught to stop look and listen to a parent who says the child is not her usual self. I'm not as sure about that with GIs, but the doctors should listen if you say, look this is definitely not normal. Ask for a full hands on gastro assessment, if you need to. The days of doctors touching patients to learn need not be over! Get your money's worth.

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No my daughter is in physical pain. Right now she is in tears and says her stomach feels like there is a tear inside. Like it just ripped apart.  My wife thinks she is faking but i dont.  This is so difficult. I cannot wait until Friday for the endoscope.  Could it be a pulled ab muscle or hernia?  I am just trying to figure something for her. She keeps saying dad please fix me it burns😞

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5 minutes ago, Erick said:

No my daughter is in physical pain. Right now she is in tears and says her stomach feels like there is a tear inside. Like it just ripped apart.  My wife thinks she is faking but i dont.  This is so difficult. I cannot wait until Friday for the endoscope.  Could it be a pulled ab muscle or hernia?  I am just trying to figure something for her. She keeps saying dad please fix me it burns😞

I wonder if she has an ulcer?  Diverticulitis? They should find the ulcer during the endoscope.  And if They don’t find anything they should do a colonoscopy.  Maybe they could do both at the same time?  

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Again, I recommend a hands on assessment to locate the exact source of the pain. It's impossible to know what's going on without it.

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Hindsight, ditto on kareng about getting both scopes, "right side near belly button" would suggest Ilium/cecum/ascending colon so colonoscopy and endo to be sure. Plus I doubt you will get a child to take the prep twice if they know what it did the first time around so push for both at the same time.

If the pain is constant, no matter what she eats, I would really think this might not be food related, but just in case ease her onto a gruel diet, like congee (look it up) or other porridge like blended oatmeal with banana and nut butter and some multivitamins. Might as well make it as easy to eat and on the gut as you can, if your still pursuing celiac testing make sure a few tsp of flour is included so she keeps it in her diet.

If it is a burning feeling then ulcer, worst case scenarios mostly ruled out by the fact she does not have fever...and various other things. Further questions, how often does she have a bowel movement? Is it tarish? (suggest bleeding in the upper tract) or does it have a bit of mucus, or red blood in it suggesting issues in the large intestine/colon/rectum.

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Been gluten-free for 10 yrs and no sign of being glutened on bi annual bloiwork. That being said 2 yrs ago i had sudden sharp pain in lower right abdomen. Treated for bladder infection but urine was barely or not positive. So bad could not sleep well. Worse if gas or fecal in that area. Ended up in er. Checked apendix. Normal. Had a colonoscopy. Normal. Pill cam normal. Mri no contrast normal. Found that it has to do with citric acid. Any citrus fruit, citric acid, ascorbic acid. Cutting all out now stopped. Still tender if pushed on but finally no more infections. Sometimes eat but immediate pain overnight. Take d-mannose for a few days to head off infection. Not long term since read can lead to kidney failure but know someone who does. Urologist was no help. No drs have heard of this. Hope your daughter gets relief. Mine felt like it was going to explode my abdomen.

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Thank you to everyone for your information and support. It is just so frustrating. I want my daughter's pain to go away. Now my wife and I are at each other throats about it and that doesn't help the situation. If my daughter is just nervous about something at school or some other factor, I don't know how to figure it out. She is not a scared child. She does Mix Martial Arts, in talent shows that she chooses to be in, we do not decide for her. She is very out going. I truly believe there is something causing her pain but if the endoscope is normal, i don't know what else to do. How can pain go on for 3 weeks and 3 different ER's cannot figure it out? She does have bowel movements about twice a day, diarrhea right now due to the miralax she is on. So its hard to tell. At first it was hard pellets, that's why the ER doctor said she was constipated. No blood in bowel movements or urine. 

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I am partial to Cream of Rice. Lots of room temp liquids and Cream of Rice, flavored to taste. My grandmother gave it to me and it still soothes my stomach. Also consider Alka Selzer, if there is no risk of Reyes Syndrome. Aspirin, contrary to common belief, helps my indigestion and then there is the bicarbonate. Not Cream of Wheat which puts a hard lump in my stomach. That should have been a clue, but I was always told it was normal. If you can, ask the doctor if you can GFD. Even if you need more testing, you can always reglutenize. But right now you need to stop her acute process now. Try to support her belly when standing. A one piece bathing suit may be enough. It could be her mesentery is irritated. In which case, Alka Selzer to the rescue!

I hope your daughter feels better soon.

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I have Celiac disease and have been strictly gluten free for 20+ years. Two years ago I  was eating a lot of my summer vegetable harvest and developed a terrible stomach ache that I best describe as something boring into my belly below my belly button. No nausea, but very painful. No doctors could figure it out. Long story short, I finally figured it out: salicylate sensitivity. I had always gotten a belly ache from tea, mints, chewing gum, aspirin - all high in salicylates. Now I react to all salicylates, which are in all fruits and vegetables. I have had to realign my diet but got rid of the problem. I am now careful to stay with the lower salicylate foods. I have eliminated tea, mints, gum and all of the highest salicylate fruits and veg (I midss artichokes but get an almost immediate reaction). There is a great website with a diet (puréed organic carrots and chicken mostly) to reverse it. Once better, can reintroduce in moderation and stick to the low and moderate foods.  It is worth a try as no test for this.  Very common foods, healthy like olives/olive oil, fruits and berries, tea and staples of most diets are the culprit! I found relief within 7-10 days, but had to stay with it for quite a while before adding foods back in. Tea is out forever but better than the agony it causes me. Here is the site: http://salicylatesensitivity.com/ 

ps- I agree with the posts about Natural Calm and probiotics but go slow as your daughters tummy is tender. 

I wish docs knew about SS, but most have never heard of salicylates. 

Good luck!

 

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On ‎5‎/‎15‎/‎2018 at 7:29 PM, Erick said:

The GI doctor suspects its something psycological… Right now she is in tears and says her stomach feels like there is a tear inside.

Quote

 

During acute attacks of diverticulitis, eat low-bulk foods (broths and low-fiber breads) while diverticula are inflamed and sensitive, and make the following foods a significant part of your diet: cooked vegetables, cooked fruits, and apples -- all of which will be soothing to the inflamed intestine. Avoid milk and milk products (yogurts and cheeses), which could worsen your illness, especially if you have diarrhea. -Web MD

 

It amazes me that mainstream medicine would recommend bread to treat any gut problem. Like throwing gasoline on embers to see if they are extinguished.  But the rest of the WebMD article is not bad. Many doctors would blame the patient as acting out because as we all know, bread is good (best thing since sliced bread) and all those people who complain are wacky.:rolleyes:. After a night tossing and turning I finally remembered the experience a friend had with diverticulitis a few years ago, that put him in the ER twice before getting the correct diagnosis on his third trip. My older brother never recovered from optional surgery to correct the stoma between his intestine and bladder caused by chronic diverticulitis. He continued to eat bread, with doctors approval, even after the second surgery to put in a colostomy bag because he was not healing from the first surgery. Until the day he stroked and passed. One of the unspoken statistics about abdominal surgery is that the majority of the patients who have surgery end up having a second or third abdominal surgery. Statistically the surgery was a success, the patient failed.  I hope Eric that by now you have good news.

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I recalled that my oldest daughter’s celiac disease presented as sharp pain that radiated around to her back. The docs All said “psychological”. Really? She had already had an appy when she was 8 so ruled that out. Nobody would believe my suggestion of celiac until they finally agreed to run the blood and other tests. Yep - celiac! I have three celiac children, all who presented differently. Only one has salicylate sensitivity along with me. 

 

 

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Thank you to all for all the information.  I am really learning alot about stomach issues.  Well my daughter had her endoscope done and all looked good. No ulcers or any imflammation of the stomach. So now we are waiting on the biopsies. Which i suspect will all be normal. We are getting no where. Thanks again everyone. Its helpful to know people are out there and are listening.  

Edited by Erick

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