My 8 Year Old Son...

[mommyof2boys]

Hi everyone im new here and also VERY new and unfamilier with Celiac. I have a few concerns and questions and im hoping that someone can help answer them for me.

Let me start by saying that almost 3 months ago my 8 year old son started having very severe stomach aches along with frequent bm's after eating. We took him to the Dr multiple times over that time period then finally about 1 month ago they started running blood tests one for Ulcers and 1 for celiac when we went back for the follow-up appt he said "well he doesnt have an ulcer but he does have celiac disease" which then I started asking questions about what that is as I had never heard of such a thing before. He replied by telling me I have to keep him away from anything with Gluten in it...ok sounded much easier then it has actually been...but I have stuck to that diet with him and his symptoms have all went away BUT has lost 2 lbs already and was underweight slightly to start with so that is one of my concerns.

We went back to the dr again yesterday for something unrelated and he talked to my son asking him if he was feeling better and my son replied yes i am feeling better now that you put me on a gluten free diet....which then the Dr says "well lets hope that he doesnt have it" I was floored thinking what do you mean lets hope he doesnt have this when you said he does and have made us put him on a gluten free diet....he then said well you were referred to a pediatric GI right I said yes but they couldnt get him in till the end of July to that he said ok well they will go from there and figure out if he has it or not...

OK so first of all the blood test said he had it...how accurate it this blood test?

since he has wanted him on a gluten free diet this whole time and to continue with it....wont the GI get a false result because hes not eating gluten (if they do more tests)?

I am so confused about all of this and dont know what to do, I dont really want to let him start eating "normal" food again and take the chance of him being in pain but how to I trust a dr that first says he has it then says lets hope he doesnt? AHhhhhhhh please help

sincerly,

frustrated!

[shayesmom]

Honestly, if the blood tests are positive....then he does have celiac. There aren't any false positives....just false negatives. So you're doing the right thing by putting him on the diet.

The comment your doctor made about "let's hope he doesn't have it" is just the typical response many of us get from doctors who don't know much about the disease. For some reason, medical professionals look at dietary restriction as a last resort in terms of treatment. And that's a crying shame because a lot of people could be healed if diet were the first route of therapy. Instead, prescriptions are handed out like candy at Halloween and many people end up getting worse as opposed to getting better.

The GI appointment may end up being even more frustrating than your last appointment in that the GI will probably tell you that you have to put your son back on gluten in order for them to re-test or biopsy. This can take several months, maybe longer. And you won't be guaranteed anything more definitive as far as answers. If the GI is good, he/she may look at the original bloodwork and the response to diet and diagnose from there. But that's fairly rare. You may want to ask about genetic screening or if the GI will at least give you a diagnosis of gluten sensitivity so that you can be better equipped to deal with the school as far as dietary compliance.

As far as your son's weight issues....once again, you may need to look at diet. It may take some time for him to heal from the damage celiac disease does to the intestines....which affects the absorption of vitamins, minerals as well as fats. Your son may be getting cross-contamination or he may have other food issues at work (many of us can't tolerate dairy or soy). It may help to get a referral for a dietician or nutritionist. That way, they could look at your son's overall diet and immediately see if there's something lacking from his diet or if there is another underlying issue at work.

So sorry that you are dealing with all of this confusion. The first few months on this diet are very tough. But it will get easier with time and some days, you'll find that you don't even think twice about it. The most important thing is that your son gets better. Don't lose sight of that goal and you will navigate through all of the medical bureaucracy just fine.

[Ursa Major]

I agree with everything Vicki said. If your doctor referred your son to a pediatric GI doctor, he should have told you to keep your son on a regular diet until after a biopsy.

As it is, that biopsy will very likely end up being a false negative, and will be useless in diagnosing celiac disease.

But really, the positive blood work and positive dietary response combined are a valid diagnosis right there, no biopsy needed. It is your choice if you still want to see the GI or not.

If that GI tells you to put your son back on gluten for a biopsy, please don't listen. After the villi have healed it could take YEARS of eating gluten for your son to have enough villi damage for a positive biopsy! They often tell people that two weeks is enough. That is complete nonsense and will end up in a negative biopsy, and the doctor declaring that the child does not have celiac disease. Which is not true, especially because a negative biopsy can never rule out celiac disease to begin with, never mind being done after eating a gluten-free diet for several weeks or months.

[April in KC]

Hi there - it certainly sounds like your son has it, since he has positive blood work and he's feeling better on the diet. It is highly improbable that anything else would turn those test positive - the EMA or endomysial antibodies is only positive in Celiac Disease. The TTG or tissue transglutaminase can turn positive in some other autoimmune diseases, but that would be rare compared to it being positive because of Celiac Disease.

Unfortunately, gluten intolerance is a permanent condition. If you look around in your family or your husband's, you might be able to identify other family members who need to be tested, since it is also genetically linked.

I understand your concerns about his weight - it's important to get to the bottom of it, but there are many reasons he could be dropping weight.

One, he might still be losing weight from Celiac damage - I kept losing weight for 2-3 months after I went gluten free. My son initially lost weight, too (we're both were diagnosed as Celiac the same week). The aches may stop right away, but the damaged gut heals gradually.

Two, you might inadvertently be feeding him a "low carb" or Adkins-style diet. Try finding non-gluten sources of carbs - like baked potatoes, Cascadian Farms french fries and tater tots (Spud Puppies), rice pasta (Tinkyada makes the best one), gluten-free pizza crusts (Kinnikinnick), gluten-free cookies, gluten-free toast, gluten-free cereal (General Mills Tigger & Pooh, Dora the Explorer, now even Rice Chex - but Rice Chex only changed last month, so make sure it's a new box that says gluten free on the box). If you're not shopping at a health food store like Whole Foods with a good selection of gluten-free foods in a dedicated aisle & freezer case, then you should give it a try.

Three, as another poster mentioned, there could be an additional food intolerance - for example, dairy should be omitted or cut back on until he heals. Some Celiacs have intolerances to another food like milk, soy or corn. If your son does not have troubling symptoms with other foods, I wouldn't worry TOO much - but it is something to pay attention to.

Four, if the weight loss continues, definitely talk to the GI. There could be another condition responsible - my son had both Celiac and Eosinophilic Gastroenteritis.

You are right to wonder whether being gluten free will affect the tests. It will, sometimes within weeks. The blood antibodies gradually go away, and the intestines heal, too. It's great in the sense that you can truly heal the damage - but a Celiac will get re-damaged if gluten is reintroduced.

You're in the position a lot of us have been in - do you put (or keep in your case) your child on a gluten-free diet right away,or do you keep them eating gluten for the couple of months it may take to get a biopsy.

I put my child on a gluten-free diet right away, and luckily his GI (when we eventually saw him) was not a jerk about it. He understood. He looked at my son's positive EMA test and said, I consider that one test more accurate than a biopsy, anyway (because they can occasionally miss damage if it's patchy). We did eventually do a scope a year later because he was still losing weight - and it turned out that he had a second condition, as I mentioned above.

You know, if you put your child back on gluten, you might get an instant answer in the form of a stomach ache. Then it would be very hard to keep him eating gluten until the GI appointment. Or .... you might not get instant symptoms, but symptoms could start showing up a few weeks later. Think through the scenarios of putting your child back on gluten, & see which ones you're comfortable with.

Best wishes!

April

[AliB]

What an ignorant doctor - sounds like he is the one who is confused!

Honestly, they get five minutes of vague training at some point in the past and think they know it all! There is so much information for them to keep up with I rather think Celiac gets left by the wayside, which is hugely ironic considering the fact that it and gluten intolerance is behind a huge amount of the ailments that all those people sitting in the surgeries and hospitals visit the doctor for!!!

You are in the best place here for help - there are many on this forum who have more knowledge in their little finger than these doctors will ever know. (Sorry, I'm sure you can pretty much figure I have little respect for much of the Medical Profession which needs a very large 'common sense' transfusion!)

Let's hope for your child's sake that the GI has a few ounces of sense and doesn't insist on a biopsy. It may show the damage, but then it might not, and it would be a horribly invasive and distressing thing to put your little one through, especially if the blood test has already come back positive and the diet has proved itself to be definitive. What more do they need?

Continued weight loss does not seem to be uncommon for a little while - as April mentioned, the damage does not heal overnight and it could take a while for the body to start to reabsorb. Also it is very common too for those with Celiac/GI to have intolerances to other foods. I immediately cut out not only gluten but also dairy and most of 'bad' carbs and sugar, and followed the Specific Carbohydrate Diet for a while adding in more protein to help my body repair itself. It has taken 3 months but gradually every day now I see an improvement.

[mommyof2boys]

Thank you all for responding and helping me understand a bit more about all this confusion! I feel comfortable with my choice on keeping him on the gluten free diet and not doing a biopsy. I mean like some of you said....the blood test should be good enough, and I dont want to put him through that. I will prob just keep the appt with the GI just to maybe learn a bit more about it?!?!

He is actually taking it all very well as we made him feel better because we told him that he shouldnt look at this as some horrible thing, in the end he is making himself and all of us in the house healthier. Not saying this has been easy at the grocery store lol but im working on learning everything I can and everyday seems better! Thank you all!

[strawberrygm]

my dd is 9 and has had 2 positive bloodtests.

we are waiting for an endoscopy and colonoscopy.

i havent changed her diet b/c of waiting for these tests, although i wish i could go ahead.

she also has a dad we dont live with, who, like yours, isnt very good at believing what i say. i want all the positive tests i can have to prove to him whats going on and to live by it.

i wish i could afford enterolab tests.

good luck to you and your son!!