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How Important Is A Biopsy For My Almost 2 Year Old?


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#1 Jamie1450

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Posted 23 January 2013 - 12:08 PM

My almost 2 year old son had been showing signs of Celiac for almost a year. From 9 months (when he started solids) to a year old he didn't grow at all and did not gain an ounce. He was a chubby breastfed baby until then. All of a sudden he started having diarrhea all the time but would also have stages when he was fine. He grew a little in the span of a few months with us feeding him copious amounts of food and pediasure. Over last summer his weight dropped again and he looked sick. He was really cranky, had dark circles around his eyes, would sleep hours & hours, you could see every rib on his chest and he looked pregnant. For the most part he still acted like a happy little toddler but I knew something wasn't right. As soon as we noticed how thin he was we took him in and were horrified to find that he had dropped 2 pounds even with how much he ate. We were told to keep feeding him high fat foods and pediasure and his doctor would check his weight in a week or two. A couple of days later I came across a website talking about children with Celiac and thought "that's my son". I called his pedi and asked her to run a Celiac blood panel. She did and 1 out of the 3 tests came back abnormal. His tissue transglutaminase ab came back as a 5 ( equal to or greater than 4 is out of range per the test results) and his iron levels were slightly low. There is 1 pediatric gastroenterologist in our area and she has a 2-3 month wait for a first appointment. Not wanting him to be in pain any longer if he had Celiac we decided to give the gluten free diet a try. He is like a new person. The only time he has had diarrhea is when he ate 2 or 3 cheerios out of our couch and when he got ahold of some bread at my parents’ house over Thanksgiving, he didn't even take a bite of the bread! Since October 1st (when we received the positive test results) he has gained about 3 pounds, 2 of which were put on in just a month and a half. At his check up over Christmas his doctor said that she is certain he has Celiac Disease after seeing his vast improvement.

Should we have waited or traveled to another hospital out of the area for a biopsy? Does that sound right on for a diagnosis? I know diagnosing a 1 1/2 year old can be tricky since he wasn't on a gluten filled diet for very long. Should we have done something different? Or should I just take that as a diagnosis and shut up? I don't know why but I have this desire to have a formal diagnosis or find out his he just has gluten sensitivity. I will say that I am so thankful that we found out what was going on and that he healthy. Thanks for any input or advice you might have.
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#2 mommida

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Posted 23 January 2013 - 02:11 PM

To do the "gold standard" diagnoses for Celiac the patient must be consuming gluten for the amount of damage to show up on tests. (FULL Celiac blood tests, endoscopy with biopsy, and improvement on the gluten free diet) This option is no longer going to be accurate since you started the gluten free diet.
I don't suggest a gluten challenge (go back to eating gluten), because the gluten reaction can be so much more violent.
You can do genetic testing. (not 100percent accurate)
Do try and get a doctor to give a diagnoses for school records.

An endoscopy with biopsy could have ruled out other diseases, H. Ployri infection, parasite infection and/or congenital defect. It could have given a baseline of damage and shown improvement on the gluten free diet. Please keep a food journal to give additional testimony of improvement with a gluten free diet. It can help identify hidden gluten, other food intolerances, and any new symptoms.
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#3 Jamie1450

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Posted 23 January 2013 - 08:37 PM

Thank you mommida - His pediatrician has used the verbage "He has Celiac Disease" and that she is thrilled that I diagnossed him myself. I might ask her about the genetic testing, though and then revisist it later on when he can tell us how he feels. I will start a food journal tomorrow, that's a great idea.

Couple more questions:

Do you think it's important to see a pediatric gastrointerologist, just to get their opinion and thought on things?

His one abnormal test result was not very high, is there other reasons why he would have a higher than normal tissue transglutaminase ab result?

Does his history really sound like Celiac?
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#4 Cara in Boston

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Posted 24 January 2013 - 06:26 AM

For a child that young, it is important to get a doctor's diagnosis - it will ensure that schools, camps, colleges, etc. all comply with your request to keep her gluten free. A doctor CAN diagnose with only blood tests and response to diet. I think it is fantastic that your doctor feels this is enough information. Many doctors require a positive biopsy to confirm diagnosis, but his is flawed - many times the damage is simply missed and the biopsy results are not correct. People who DO have celiac are told they do not which sets them up for years of illness and more damage.

Whether or not it is celiac or "just" gluten intolerance, the treatment is the same - gluten free for life.

The genetic test will not confirm or preclude celiac. My son was found to have a "low probability" of celiac, but he had a positive blood test and positive biopsy. When he was diagnosed, I realized I had many classic symptoms and got tested too. My blood test was positive, but my biopsy was negative. I was "technically" diagnosed with gluten intolerance, but it is pretty clear I have celiac too.

Be sure to have everyone in the family tested - even if there are no symptoms.

Cara
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#5 Gemini

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Posted 24 January 2013 - 09:35 AM

You should be able to get your pediatrician to diagnose your son, without the endo, if he has said your son HAS Celiac Disease. I personally would not do an endo on a 2 year old but that's just me.

Things are changing rapidly on having to "prove" to anyone that your son has Celiac and must follow a gluten-free diet. My niece is a freshman at Ithaca College in NY and she is a self diagnosed Celiac. I am the only one so far in my family who has an official diagnosis and I did not have an endo. Positive blood work, positive genetic testing and improvement on a gluten-free diet are other tools for diagnosis. About the school........they did not require a doctors note saying she has Celiac. They are extremely accommodating and have seperate storage and prep area's for the gluten free students. She can order gluten-free meals on-line. Only certain people are allowed into the gluten-free food storage and prep area and you have to be wearing clean gloves before entering. My niece is through the moon and very happy there and NOT getting sick. She is definitely a Celiac because she had many neuro and gastric issues that mimicked mine and they all went away on the gluten-free diet....she is a different person.

I think as your son is only 2, by the time he gets older, many schools and camps will not be asking for a doctors note from a GI doc and have to "prove" the stupid gold standard to receive gluten-free food away from home. I live in Massachusetts (but please do not hold that against me!) ^_^ and a college here was sued recently by a group of students demanding gluten-free food and proper care with prep because they were being told they had to buy into the food plan and the school would not offer to accommodate the diet. You can't get away with that crap today and rightfully so...this is life or death for many. Unfortunately for the college, and this is really ironic and funny, one of the kids father's is a civil rights attorney. The school never stood a chance. So.....don't let any doctor hold you hostage over a medical test. You do not want to put your son through a gluten challenge just to to please a GI doctor. I would talk to your pediatrician and explain what you have beautifully stated here. I am sure they will help you out and diagnose him based on what you have told us.

Good luck and good work figuring this out! You deserve a pat on the back for being so proactive on your child's behalf.
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#6 mommida

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Posted 24 January 2013 - 11:29 AM

The genetic test is not an end all, be all. It will add to the evidence for Celiac diagnoses (hopefully). In our case we found out my daughter has 2 Celiac genes. May explain the high sensitivity level. (May also give future medical information to the fact that she has Celiac and Eosinophilic Esophagitus. There is now a proven connection to these disorders.)

In a perfect world, you would not need a doctor's note. You may run into ignorant people that "just DON'T get it", and have to fight for your child's rights. Hopefully in time ignorance will be replaced with knowledge, but in the time being it would be best if you can get "official diagnoses and doctor's note".

From past experience, a gluten challenge can be dangerous. (my daughter was hospitalized for dehydration trying to eat gluten for the blood draw at 15 months. The endoscopy was not done because she was too sick. Flash forward, The same ped. endo. that diagnosed her "probable celiac and EE" did a follow up scope to monitor the damage of EE because food was stuck in her throat. UNDIAGNOSED her Celiac because he couldn't find any Celiac damage in her intestines!!!? She was 9 years old at the time and hasn't been eating gluten since she was diagnosed when she was 16 months old!!!?

So choose a pediatric Gastroenterologist wisely. You have to realize that a doctor's note of diagnoses is VERY important sometimes. (Being undiagnosed could mean she as an adult won't be able to write off allergenic foods as an expense, or so other such nonsense.) I should also explain she is very sensitive and once she starts vomitting she usually needs medical attention for dehydration. (Theurgent care in our area now treats her was anti-nausea injections)
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#7 Gemini

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Posted 24 January 2013 - 06:13 PM

The gene testing, while not 100%, is still very useful to do. That's how I found out I have a double DQ-2 and explained the severity of my symptoms. I think it always wise to include this when trying to diagnose Celiac. It's added information.

That perfect world is coming fast for Celiac Disease and if one group of students can sue and force a school to provide gluten-free food, others will HAVE to follow or students will choose the schools that accommodate and schools will continue to be sued and lose. Celiac is covered under the ADA so this is not something that will take a long time. It's happening now.

I never stated she should not go to a doctor for a diagnosis but not all doctors require an endo to diagnose. It doesn't matter whether you have the endo today, especially if you have symptoms and have some positive blood work. It sounds like her child's pediatrician is already on board. It is not necessary to go to a GI these days....many people obtain a diagnosis through other doctors willing to help. You have personal experience of how bad a GI can be so they are not always the best choice for a diagnosis. They are stuck on the endo because they make far too much money to NOT do one. And then the child has to resume eating gluten......really bad idea.

Forget about writing off gluten-free foods in future...if you live in the US. That's going away. Right now, with the new tax laws taking effect, you have to reach 10% of total adjusted income to do so and most people never meet that minimum. Deductions are going away here.

I think it's about time Celiacs start pushing back and not accepting the AMA's ridiculous hoop jumping for a diagnosis.
I have been to doctors since my diagnosis, which included all the criteria except an endo because I was too sick to have one done at the time, and not one of them questioned my diagnosis methods. I just show them my blood work and gene testing results and let them know that I'm not taking any crap where this is concerned. It's downright cruel to make people eat gluten when they clearly have a problem.
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#8 mommida

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Posted 24 January 2013 - 06:33 PM

One concern about not having a medical diagnoses... God forbid if we ever enter a war and have to institute the draft. As of right now, most MRI have gluten as an ingredient. (My son did get to taste a gluten free one.) A gluten free diet might not be a doable thing on a frontline.

I still have to wonder if my daughter had the endoscopy with biopsy, could the Eosinophilic Esophagitus been diagnosed sooner?

I hope you get medical documentation. At this point you can run accross ignorant people (teacher, scout leader, classroom helper/assistant/parapro, team coach, or any other "adult") who may think this is a "fad" (because that rumor is going around just as fast if not faster) and will not take it seriously and believe it or not turn into a bully against your child.

Just saying. it's never going to be a perfect world! (May take a lot more lawsuits to fix this)
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#9 Jamie1450

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Posted 25 January 2013 - 11:24 AM

So what I'm gathering is if his pediatrician will give him a diagnosis, stand by it and offer documentation if needed, then we are good? I agree that a gluten challenge would be hell on earth for my son. We would probably make it a day or so. 8-10 acidic poops per day, a red almost bleeding butt, hours of screaming and whatever damage it's doing to his gut just doesn't see worth it. His 2 year checkup is coming up in a couple of weeks, I'll see if she’ll write up something for me and make a copy of his test results. I will also ask about genetic testing and maybe we can add that to the evidence if she thinks it’s needed.


We are so lucky to have such a great pediatrician. She is really good about doing weight checks and answering any questions I have. I told her about the 3 Cheerios in the couch incident that caused 3 days of the worst diarrhea I have ever witness in my entire life, that smelled chemically and made your eyes water and cleared your sinuses. After telling her that, said that my son can’t have gluten anymore and that people don’t know how severe and devastating the effects of even a small amount gluten can have on a person with Celiac. That is pretty much a direct quote. So yes, I believe she is 100% on board and hasn’t even mentioned an endo or seeing a GI doc since giving me his test results back in October.


It really sucks that people have to jump through such hoops for a diagnosis and for people to take it seriously. I've thought about what it will be like when he goes to school and goes off to college. Thankfully there are plenty of schools in our state that have dorms with kitchens and don't require a meal plan. I'm hoping that there will be a big change in the awareness and acceptance of people with Celiac or gluten sensitivities. Do parents of children with food allergies have to show proof or documentation? I have lost sleep about the fact that he will most likely be “that kid” in school, but it’s my job to keep his childhood as normal as possible.


I also called my doctor and asked her to order a Celiac blood panel for me, I eat some amount of gluten most days (not around my son) and I'll follow suit with my other kids & hubby. Thanks again for the info and input. So glad I found this community!
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