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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Could The Seizure Have Caused The Celiac's?
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Hi everyone! I am new here. I have 3 children all with allergies and health issues but my youngest is the reason that has me searching for answers. It is being said that she might have celiac's and celiac's was mentioned with my middle child as well. i will give a brief (as brief as possible) description of what is going on and would appreciate any support/input you all may have. I am a bit overwhelmed and confused as to what is going on and what to do next. 

 

Ok.. me.. I have always had tummy troubles. Had my gallbladder removed at 21 yrs old. My gallbladder was actually fine but the ducts connected to it were scarred shut. He said he had never seen this before but knew that was the cause of all my pain and vomiting. After i have felt better but do have low energy, irritable stomach and have developed morphia schlerederma (sp?). My hormones are always out of wake. menstral cycle is out of wack, loss of hair, skin issues, and fibroids. 

 

Oldest child...son 6 yrs old.... he has allergies (casin, egg white, egg yoke confirmed by skin prick test.. environmental believe yet not confirmed). He also has Asthma like symptoms that seem to be brought on by seasonal allergies. he is tall and good healthy weight. Only really issue he has had is he always gets sick and he has had his tonsils and adenoids removed. 

 

Middle child... daughter 4 yrs old... She has had issues since 2 months old. Started with reflux which seemed controlled with medicine. Then, at a year she began having hives. Allergy testing proved food and environmental allergies. (corn, carrot, egg white, egg yoke, barley, rice, peanuts, ALL seafood and numerous tree's). I was told at this point that she may need celiac's testing if she developed another gluten allergy. No other allergy testing has been done as of now. Since then she was relativly healthy. Had lots of issue's with bloating, green nasty poop's until about a 1 and a half ago... when it turned to constipation. And last June she began having red blood in her urine randomly with no other signs and no uti's. She is going to a kidney specialist in may. Constipation is somewhat controlled with Miralax daily and all food allergies have been food challenged and said to be fine for her to eat. weight and height has always been high and stayed there. Like in the 90% or off the chart for both height and 70% and above weight her entire life. She is tall and skinny. 

 

NOW... this is where it gets crazy! Youngest child. She is 19 months now. She was born on her due date. She was a healthy size (8lbs 1 oz and 19.5 in) but did have hearing issues.  She was ebf til 9mo's when foods were introduced staying away from top allergen's. And she still nurses 1-3x per day. More often only 1x at bedtime. OK.. so... at 2 wks she had a seizure. At that same time her breast became hugely swollen and produced milk when squeezed. No reason found for the seizure. No virus, no fever, no nothing. about a month after congestion started. It was terrible. Caused her to heave and work to vomit the mucus out. Even turning blue attempting to get it out. She did this for months. She was admitted to suction it out and relieve her. No virus, no fever, no reasoning given again. Her growth %'s stayed between 50-70 thru all this but at 9 months when the foods were introduced she dropped to 20% for both height and weight. She is constantly sick. It was believed to be allergies. Allergy testing proved wheat, rice and corn.Removed from diet but issues persist   At a year the breasts still had not shrunk down and it was found that her fhs (estrogen) was high, she has a cyst on her ovary and infact has breast buds of a 9 yr old. She is in puberty. Now at 19 months, she is in the 9th% for weight and 6th% for height. she has begun having tan/white clay like poop's and they are looking into celiac's for her. She was on a "pretty much" gluten-free diet due to the allergies but is now on a strict gluten-free diet. I am still nursing and going gluten-free but gluten-free is hard to find around her so while i am doing my best i am not perfect. She also still has not proved to have hearing in one ear and her eye sight is slow but still on the normal curve. 

 

 

I am not sure what to make of all this. If it is all associated with celiac's? Could it be? My doctor's are saying no.. that 2 things are going on.. seizure induced puberty and celiac's. I have someone who is a celiac insisting all this is celiac's and that she is reacting to the little amount of gluten in my breast milk. She is saying the seizure was the "trigger" for the celiac's. Is that possible. I know you all are not doctors. I am just trying to wrap my head around all this. Sorry it was so long. I am just not sure what is connected and what isn't? Please.. any help.. info... support... anything really. A bit overwhelmed by all the health issues and doctors. 

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Hello and welcome to the forum.

 

With all these people including docs talking celiac disease, have they ever done the blood tests on your youngest daughter?

 

As for the seizure being the 'trigger' for celiac, seizures can be part of the celiac picture as an expression of celiac - a neurological manifestation (this kind of presentation is not at all unusual).  Blood testing is pretty simple although not always reliable in infants, but worth a shot.  I must say I have never heard of puberty in  an infant and don't know what to make of that.

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Hello and welcome to the forum.

 

With all these people including docs talking celiac disease, have they ever done the blood tests on your youngest daughter?

 

As for the seizure being the 'trigger' for celiac, seizures can be part of the celiac picture as an expression of celiac - a neurological manifestation (this kind of presentation is not at all unusual).  Blood testing is pretty simple although not always reliable in infants, but worth a shot.  I must say I have never heard of puberty in  an infant and don't know what to make of that.

Thank you. It is a bit overwhelming all these different things going on. They have tested the baby. It was done by the allergist and came back neg. They said it is not reliable at her age topped with the lack of gluten that she has actually ingested. We are going to a GI but there is only one pedi gi in our area so we have another 2 month wait for this doctor. We are on a wait list so hopefully will get a call and get in earlier. I am not removing gluten from my middle child's diet until after the GI appt. If he believes it is necessary he can test her since she would have a greater chance of showing positive. The precocious puberty scares me! My doctor's are sure that it is not connected to the celiac's but to the seizure. however, if the seizure is from celiac's i guess it could all be connected. 

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All I can offer is that when many mysterious things that can't be explained happen - food intolerances or Celiac seem to be involved.

Testing can be difficult in children. Ultimately you may have to do a strict gluten-free trial with all to figure it out.

Do get copies of bloodwork done to verify ALL Celiac tests were performed. All it takes is one to show positive to get you in the right track. Yes, there are many tests, and you don't have to test + on all of them.

Remember, Celiac is genetic. You and Dad should be tested ASAP. Results, if +, could help dx the kids. Plus, you need to know.

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Thank you. If we are, i think it is coming from me. I have had a lot of stomach issues through my life as well as skin issues. Pains that the doctor couldn't figure out and just gave pain pills for in middle and high school. I am going strict gluten-free to see if it is helpful since i am still breastfeeding her. I am not sure that i should tho. I worry they will need me to take the test and if that is the case the new diet could make it harder. I am not sure how that all works. I will ask for the results. I hadn't thought about it. So far all that has been done was bloodwork from the allergist. I hope the gi will be better with everything. 

All I can offer is that when many mysterious things that can't be explained happen - food intolerances or Celiac seem to be involved.

Testing can be difficult in children. Ultimately you may have to do a strict gluten-free trial with all to figure it out.

Do get copies of bloodwork done to verify ALL Celiac tests were performed. All it takes is one to show positive to get you in the right track. Yes, there are many tests, and you don't have to test + on all of them.

Remember, Celiac is genetic. You and Dad should be tested ASAP. Results, if +, could help dx the kids. Plus, you need to know.

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Well.. she started having quite a bit of blood in her stool today. They are pretty sure it is celiac's and want me and both the girls to go ahead and go gluten-free until the gi appt. She wants Isabella and I to be corn and dairy free too. it is a bit overwhelming. I am attempting to plan a meal and while.. it is doable.. i really don't know what i am doing yet. 

 

One question i have.. i keep seeing gluten-free brown sugar.. is there something i need to look for to confirm the brown sugar is gluten-free? Same with baking powder. Other than the obvious, what do i need to watch for when looking at labels. I know anti caking is not good. But what else? 

 

Thank you!!

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Just remember that treats done on a gluten free diet may be negative. If you aren't making the antibodies, there are none to find.

Never seen a brown sugar, vanilla or baking soda or powder with gluten. But they like to put gluten-free on them.

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