In Tears And Confused

[jaysmom]

Okay. Today was the annual physical for my son and I talked about his issues of having gas (deadly), tired, diarrhea multiple times a day and his weight gain with constant appite.

Well we left with labs for thyroid tests and a stool sample kit.

I told how we did lactose free milk, etc and nothing changed so we went dairy free and still no changes so could it be Celiac and he said NO the onset is to late (he is 9yrs) and he is gaining weight not loosing. I completely forget the rest of the appointment as I had to try and hold the tears back since he was not listening to me and only focused on the weight which I have brought up for years and he said it was no problem.

Is there a magical age when Celiac can no longer be a diagnosis? I mean he's had these symptoms for years but we thought it was dairy related.

What to do next..I have no idea. Dr did not give any input just said we can do GI if its ongoing......did I miss something???

Sorry for the long winded post but I'm so ANGRY and FRUSTRATED!!!!!!

[tarnalberry]

No, there is no magic cutoff age. Your doctor is ill-informed. I highly encourage you to try a new doctor.

[Lisa]

I do not think that you doctor is clear about Celiac.

I was diognoses at 51. Celiac can be diognosed at any age. Years ago doctors thought celiac was only seen in children through failure to thrive. In addition many with Celiac will gain weight.

I think that you are on the right track if he is gluten free and dairy free. If his symptoms continue, I would suggest seeing a GI, though.

I am sure that other will post the same.

Lisa

[Mango04]

I'm sorry you're having such a hard time . That doctor sounds like a moron. celiac disease is not something people are necessarily born with and it can be diagnosed at any point in a person's life. Weight gain is often a symptom as well. When I eat gluten I gain weight and have a constant appetite.

Have you tried your son on a gluten-free diet? You absolutely don't need a doctor's permission to do so. Many people are diagnosed through positive dietary response, and others (including myself) remain strictly gluten-free for life with no diagnosis whatsoever.

If you haven't already, you might want to try your son on a gluten-free, dairy-free diet. If you can, start with natural, simple foods that are easy to digest (for example, cooked veggies might be easier to digest than raw).

[Phyllis28]

Find a new doctor. This one is not well informed. I had no symptoms until I was 20. I was very lucky to receive a proper diagnosed in only 9 months.

[jaysmom]

Thanks everyone!

I will start him on a gluten free diet and see what happens.

It's just so frustrating and I've been down a similar road recently with this Dr about other issues with my son and continued on what I new my son's issue was (dyslexia) and chronic strep which finally after a struggle led to removal of his tonsils.

So I know mother generally knows best, but it is nice to her from a "professional" that you are not being neurotic--wishful thinking!

[happygirl]

jaysmom,

I could read the hurt in your post. I am so sorry that you went through this.

I, too, second the advice of finding a new pediatrician. Your doctor is HIGHLY uneducated about Celiac. This is sad, as the NIH has launched an awareness campaign for physicians because it is so under-diagnosed Open Original Shared Link.

From their website:

Open Original Shared Link and

Celiac disease could be under diagnosed in the United States for a number of reasons including:

Celiac symptoms can be attributed to other problems.

Many doctors are not knowledgeable about the disease.

Only a small number of U.S. laboratories are experienced and skilled in testing for celiac disease.

Dr. Green (a leading Celiac researcher and expert) says on his website: Open Original Shared Link

Several studies have demonstrated that the diagnostic delay was physician related rather than delay in patients seeking health care.

Also, you can gain OR lose weight. Recent studies addressed the high rate of being heavy or obese within Celiac patients: https://www.celiac.com/st_prod.html?p_prodid=1392

The average length of time it takes for Celiacs to get diagnosed ranges from 11 years (pre-1993) to 4.4 years (more recent). Some get luckier and get it soon...some go much longer. The above reasons contribute to this long period of time for diagnosis.

Good luck. The above reasons make me mad that we have to go through this, but I wanted to post them so that you know you aren't alone: leading experts realize the struggle you go through, as well. Hugs to you and your sweet son. Regardless of if your son has/doesn't have Celiac or a problem with gluten, I would not feel comfortable with a doctor that you KNOW gives incorrect medical information.

PS-You might want to print out some of this material, send it to your physician, and tell him that you were disappointed in his knowledge of common information about Celiac, and tell him about the Celiac awareness campaign . Respectfully tell him for these reasons, you will be finding other care.

If there is anything else we can do----let us know.

Laura

Laura

[rbh]

Thanks everyone!

I will start him on a gluten free diet and see what happens.

It's just so frustrating and I've been down a similar road recently with this Dr about other issues with my son and continued on what I new my son's issue was (dyslexia) and chronic strep which finally after a struggle led to removal of his tonsils.

So I know mother generally knows best, but it is nice to her from a "professional" that you are not being neurotic--wishful thinking!

It sounds like a difficult situation. However, you might want to consider delaying the start of a gluten-free diet for your son until you have a chance to consult with a better informed doctor. If your son goes gluten free now, it will distort the later tests and make it difficult to get an accurate diagnosis, especially if you have to wait awhile for the tests -- for example, his antibody numbers will decrease and if there is damage to the small intestine, that will heal. It can be frustrating to wait -- we want our kids to get better ASAP -- but living gluten free is a big committment! Hopefully, you can get an appointment with someone else relatively quickly.

[Kibbie]

Okay. Today was the annual physical for my son and I talked about his issues of having gas (deadly), tired, diarrhea multiple times a day and his weight gain with constant appite.

Well we left with labs for thyroid tests and a stool sample kit.

I told how we did lactose free milk, etc and nothing changed so we went dairy free and still no changes so could it be Celiac and he said NO the onset is to late (he is 9yrs) and he is gaining weight not loosing. I completely forget the rest of the appointment as I had to try and hold the tears back since he was not listening to me and only focused on the weight which I have brought up for years and he said it was no problem.

Is there a magical age when Celiac can no longer be a diagnosis? I mean he's had these symptoms for years but we thought it was dairy related.

What to do next..I have no idea. Dr did not give any input just said we can do GI if its ongoing......did I miss something???

Sorry for the long winded post but I'm so ANGRY and FRUSTRATED!!!!!!

Wow sounds like a Dr. with the WRONG information... I'd try and new Dr. or have him call my grandfather who started showing symptoms of Celiac at 86 years old!!!

I really wish I could be of more help!

[Carriefaith]

I am sorry...

You can get diagnosed with celiac disease at any age. I would consider changing doctors and/or request a celiac blood test (tissue transglutamase) as soon as possible.

I will start him on a gluten free diet and see what happens.

If he goes on a gluten-free diet, blood and biopsy tests for celiac disease may be false negative.

[Electra]

Yes I would definitely change dr's especially if your dr. is not even willing to research the disease before he gives you false information on it. I gained weight and I tested positive and I've always had weight issues. My dr. said he never tested me for it because of a few reasons 1. I wasn't losing weight, 2. I didn't have chronic D, and 3. I wasn't malnourished yet (but was severely dificient in b12 and iron lol)!! He said he HONESTLY thought that you had to have chronic D and be losing weight from malnutrition in order to have Celiac. Guess what? I changed his thinking and I'm sure that someone else will get a quicker diagnosis because I took him scientific evidence that those things are not necessarily the only signs of Celiac or even the most common!! Now he is more likely to test others who may have similar symptoms.

If I were you I would take him some information on Celiac and tell him that you believe your childs life is in danger and if he is not willing to do a simple blood test to at least start the process then you will be forced to take your child elsewhere. It is your right as a parent (If you live in the U.S.) to take your child to someone who is going to try and help your child get better and not ignore obvious symptoms!!

Good Luck and I hope he starts feeling better very soon!!

[rez]

Find a new doctor!!!!!!! I have been dealing w/ a mess for the past year. DO NOT PUT HIM ON THE DIET YET!!!!!! Ask them to run a tTG and a full Celiac panel. Ask for a copy of the results. Go to the Chicago Celiac Website if you want a list of the tests. The tTG is the best one for screening. If he comes up negative, you can always try the diet, but trust me, especially for a child, you are going to want to have that medical proof if possible. There are also conditions that go along with Celiac. My son was given the wrong test by our family practice doctor and told he was negative. There were still problems so I got a second, third, fourth, and finally a fifth opinion and my son had the correct blood test run. His tTG was still positive after 4 months gluten free. He has a dairy intolerance that is a secondary condition due to Celiac. I would have put him back on gluten, like I am now, and thought it was only dairy because his symptoms aren't as bad to gluten as they are to dairy. Thank God I found the doctor I did and got a proper diagnosis. Celiac is a serious condition that is life long that you don't want to mess around with. Again, if you have the screen done and it's negative, you can always implement a gluten-free diet, but I highly suggest going the proper route medically first, agreeing w/ the previous posters. Together, we can all make a difference in educating the medical community. Patient doesn't fit the Celiac profile???????????!!!!?????? Please, with 208 symptoms, who WOULDN'T? Good luck and know your not alone. My goal is to save someone the grief we have been through. We now have to do a gluten challenge because we did the diet not knowing our blood test was the wrong one. Good luck again and hang in there, stick to your guns, and be an advocate for your child.

[chrissy]

the best tests to have done are a total IgA serum, and a tissue transglutaminase IgA.

you could always ask your doctor to just humor you and run the tests----but i think going to a ped gi is probably a better idea.

[zachsmom]

I am sending you the biggest hug... I have been there done this . I think you should really hinestly think about gettting a differnt doctor... al you do is go and find a new doctor and the new doctor requests your records... its painless. this is my story.. and this is why I am saying please get a new doctor..

DOctors are there to help and listen.

My baby was 5 months and vomiting eveyday... I took him to the hospital... ( I was feeding him oatmeal baby cereal) the doctors office argued with me .. and told me I was feeding him wrong? The problems were always my fault. ALWAYS.. I have two other kids... who believe it or not have Celaic realted problems... ADD and sensory .. but the doctors office allways argued with me. Finally when my 5 month came home from the hospital ,, I called the office crying He was now running a 103 fever.... and had vomited again... and they said that it was just what babies did and I need to be patient. he probably has Roto virus ...

But I changed Doctors. I go to a place where they listen .

The Doctors office is kind and the docotor came to the car check my other son... and I am glad I got up my nerve to .. just say NO .. and switch.

The thing is if you can not switch .. is there any terms you can come to..... Its hard to switch .. but it sounds like your not happy and they are just poo pooing you... they know more than you ... type of deal ,,, I would change.. your gut is allways right. are you thinking of this stuff day and night. I would change... sadly most of us have been here and have had to switch sadly a few times to get a good doctor.

[shayesmom]

Find a new doctor!!!!!!! I have been dealing w/ a mess for the past year. DO NOT PUT HIM ON THE DIET YET!!!!!!

Yes, it would be best to find a new doctor. However, everyone is different in terms of how they deal with the situation they are in as well as how they approach it. I went through 3 pedis and 2 pedi GIs with my dd. We did a Celiac panel and it came back negative. Since she was so small and diagnosed FTT, I opted not to go for the biopsy and to do the diet instead. My dd changed dramatically in the span of 24 hours. It was like being handed a miracle.

We've been on a gluten-free diet for over 2 years now. And we also avoid all dairy, eggs, soy and food colorings. Diagnosis or not, this is what works for us and I have no regrets at having done the diet without "proper" diagnosis. I tried following doctors' orders for over 6 months with no luck. We made more progress in ONE day on the diet than in all that time doing supplements, adding fats and running tests. So to me, that was proof enough.

I think that it's important to keep in mind that although some people may test "negative" for Celiac, it doesn't mean that they can tolerate gluten. There is non-Celiac gluten enteropathy which is also a valid diagnosis (and validated via diet) and NONE of these people will ever test positive for Celiac. My mother has been going through tests for over 9 YEARS now. All panels and tests have been negative. Yet, the diet also works for her (when she chooses to adhere to it). I can understand why some people would want a formal diagnosis in order to keep them on track with the diet (my mom is a perfect example as because she is not "positive", she won't fully commit and is slowly poisoning herself). However, I don't have a formal diagnosis and you couldn't pay me to go back on gluten. I personally don't need a piece of paper telling me that there's a reason I feel horrible on gluten. I KNOW how I feel on and off of it.

As for my 3 year old dd......she won't touch the stuff either. She also is quite aware of her reactions and how she feels when we have an accidental glutening. At 3, she is extremely proactive in her food choices and will interrogate an adult on the ingredients in her food. And if I don't know if something is safe and I am honest with her and tell her she can decide if she wants to take the risk. Her response, "No Mommy. I don't want to take that risk. I don't like to feel sick". I encourage this in her and praise her for her wisdom.

The gluten-free diet IS a huge committment. But then....so is having a child. There comes a point when we all have to decide where the buck stops and when enough is enough. If you can find a better doctor and would feel better with a doctor's diagnosis. Then follow through and find the doctor who can best help you acheive that in the shortest amount of time. If you're at the point where you just don't care any more and you want some practical answers to this question....then do the diet. But try to decide beforehand, not mid-stream. Once gluten-free and feeling better....it is very difficult to cope with challenging. I thought that I would do this with my dd and at this point...I just CAN'T. I couldn't knowingly and in good conscious set out to make her sick again. For us, a trace exposure is bad enough. I have all the answers that I need.

And when dd is on her own, she will make the decision on the diet whether she is diagnosed or not. There are plenty of diagnosed Celiacs who do not adhere to the diet because they just don't want to. The diagnosis won't change that. It's how you handle daily life and its challenges that will.

Best of luck!

[jaysmom]

Thank you all for the comforting words.

I made an appointment with a pedi GI for 1/30 and I am now searching for a new general pedi and hopefully I will get on just as the blood and stool results are in

[hillyb6]

i am not even close to a pro when it comes to this but i do know for fact that

my daughter is like 50 for weight and 35 percent for height and the ped didnt even

once question that she could have it with her sytomps your dr is illy misinformed

and thats not a shock, i would push harder if you dont want to change drs print out all the

information you can but better yet just take him to a gi dr that deals with this alot

and say this says it could be this and i would feel alot better if we ruled it out

i was prepared to kick and scream to get my dd tested epsically since we were using a new

dr i moved cause our old dr was over an hour away and just is not something we can do if

a child needs to be seen alot, but the new dr was great

stay strong