son not typical

[sloaneroo]

My two year old son just started the GF diet this week after MUCH encouragement from our doctor. My son is off of the charts in both height and weight, he is VERY active and a sharp little kids. His only symptoms are loose stools and a persistent rash on his bottom. His BM does not bother him in the slightest, he never shows abdominal discomfort. He has thrown up twice in the past month, but I think that was related to different issues. Maybe I am in denial here, but I just don't think that this is celiac. I am following through on the GF diet for two months to see if anything changes. I am hopeful that it won't be celiac...just because it would be easier to know that this is just his constitution rather than a diagnosed problem! Am I in denial? BTW: Our doctor didn't want to do any testing due to his young age. He just suggested going GF. HELP!

[Sheralyn]

That is strange that the Doc didn't want testing.

A friend of mine has a little girl who is almost 2. Her Ttg test was positive, so she had a endoscopy a few weeks later that showed etreme damage to her small intestine.

She did really well with the endoscopy even though she is quite young. Her mom said she was up to her usual self a few hours later.

I think testing first is the way to go. Otherwise you will have to put him through a gluten challenge for 6 to 8 weeks, before testing can resume. Which will be hard for both of you if he has improved on the GF diet.

[aklap]

Hi Sloaneroo

Welcome to the board! Sorry you're in a tricky spot. I give your doc a lot of credit for thinking along these lines. Many docs don't Seeing that he is 2, your doc is correct - testing at that age is unreliable. It's believed that they are too young to produce that antibodies required for testing.

The problem with CD is that it can present with little or no outward symptoms. It can show up in other tests - if the doc knows what to look for and can connect the dots. This rash maybe the only clue - externally. It could be Dermatitis Herpetiformis. Is it blistery and itchy?

No, you don't want your son to have a life altering issue. But, it's better to catch it now, than 10-20-30 years down the road! At that point complications can be many [other autoimmune diseases]. Denying it does

Yeah - it puts you as parents in a tough spot - what do you do?

Sure you can keep him on the GF trial and see what happens. If you see improvements you can 1) Keep him GF forever 2) Do a gluten challenge. I suspect the doc will want to do a gluten challenge [eating gluten again for tests] on him at some point in time [once he's older]. While many do not subscribe to such barbaric testing methods - getting an official diagnosis will greatly benefit a child, specially thru the school years.

The other thing to keep in mind...All Celiac is gluten intolerance, but not all gluten intolerance is Celiac. This means gluten could be an issue for him, but he does not have CD by todays medical standards [damaged villi]. I won't get into that right now with you...but please...keep gluten in mind if he has "unexplained" issues.

I think I'd see if the doc would do a complete Celiac panel and see what happens...you never know what will happen unless you try.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[The Edifying Conscience]

[aklap]

http://www.celiachealth.org/default.aspx

You might spend some time looking thru this document. Make sure to look thru Medical Professionals section.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[cruelshoes]

Our daughter is one. We tested her for CD recently because of the family connection, and because she has CD-like symptoms. The pediatric GI doctor said he is seeing it in younger and younger kids all the time. He has diagnosed kids as young as 9 months via bloodwork and biopsy. The problem with the bloodwork in the really young ones is that it can show a false negative. But there is very little chance of a false positive - very little chance. If the bloodwork is positive, it is positive. I think Doctors are very quick to suggest a GF trial because they have NO idea what it really means to be 100% GF. Nothing against them, but they do not have to live it, so they do not understand the day to day reality.

While I don't think any parent relishes doing bloodwork on their young one, if I were in your shoes, I would do it. Pretend for a minute that he does have CD. The longer he is GF before testing, the less likely you are to get a diagnosis, because the body begins to heal. The door begins to close very rapidly once gluten is removed. What will happen if he does improve? Will you want to get a diagnosis? If you do, you will have to introduce gluten again, which may bring all his symptoms rushing back. Will your DR give you a diagnosis of CD based on a dietarty trial alone? Most will not.

Your son is young now, but he will most likely attend school in the future (unless you homeschool). If you want a 504 plan, you will have to get a diagnosis. Will the teacher be likely to change the brand of play-doh in the classroom to one that is GF without a diagnosis? It's anybody's guess.

I am a very black and white person. I hate gray! I would want to do everything in my power to avoid falling into the "grey area" category of not having a diagnosis. I know for many people that is a reality, but I think most people would want to have an undeniable answer if they could get it.

Can you tell I am passionate about this? In my personal opinion, I would not want to commit to the GF lifestyle (it really is more than a diet, after all) without at least pursuing some sort of testing first. I hope my passion has not knocked you over. I am not trying to tell you what to do, but I have struggled with the same choices in my life, and can only tell you what worked for our family. Good luck with whatever decision you make, and we will be here to answer any questions and help you along the way.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[aklap]

Being one of those that are stuck in the Grey Area...it's not always easy. You don't want to be stuck there. For kids, it's even harder. That's why we brought up the schooling. An official diagnosis is going to go a long way.

If the tests are inconclusive, you'll have to jump off that bridge should the need arise. At least you've covered your bases for now.

Let us know how things go!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aklap]

One other option is EnteroLab. They test stool samples - https://www.enterolab.com/StaticPages/Frame_Faq.htm

However, they are not widely accepted by main stream medicine yet. There several forward thinking docs that do find value in their work. Dr Fine has not published any of his findings.

It might give you some clue however.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[sloaneroo]

I really appreciate all of the feedback that I have received so far. I just emailed my son's doctor to push him on getting the bloodwork. I am hoping that we can go on Monday and then spend all weekend BACK on gluten in order to have the bloodwork look right. Is there anything else that I need to know about the bloodwork? Do we have to have an endoscopy in order to completely confirm diagnosis? Does that only come AFTER bloodwork? Can we just get the bloodwork from our family practice or do we have to go to gastroenterologist? Thanks!

[aklap]

Sorry this is so long. I'm sure you're not looking for the War and Peace version of this.

How long has DS [darling or dear son] been GF? A few months? I'm not sure a weekend of gluten would be enough. There really isn't 1 set standard when it comes to the amount of gluten and the time back on gluten for a gluten challenge. Usually it's 6-8 weeks and 1-2 slices of bread per day. The amount of gluten might be less for child. [edit to add: a saltine cracker would be enough for a child]

Here's the normal procedure:

1) Doc orders a complete celiac panel and sends it to a reputable lab [one that knows how to process and analyze tests].

2) If the results are positive you are referred to a Gastro and an EGD [a scope] is order to take samples. The number of samples are important. The more taken the better. Damage can be patchy. A doc in the know will take 15-18 samples. Again - I'm not too sure the number taken from children. Since the area is smaller, the numbers maybe less. It definitely should be more than 3, 4, 5, or 6!

If the biopies are positive, you are put on a GF diet. If improvement is seen - you have your official dx of Celiac Disease. Some docs will dx CD solely based on positive blood work and improvement on GF diet. It really depends how progressive your doc is.

3) If the results are inconclusive, the doc may still want an EGD just to check things out.

4) If the results are negative, more than likely the doc will not do an EGD.

This is where it gets tricky. Most docs will say if the tests are negative they will tell you gluten is not a problem. That very well might be true, but as I said before, don't be so quick to let gluten off the hook. It can still cause problems outside the realm of CD [Non Celiac Gluten Sensitivity] that many docs don't understand or realize. This is where patient education and knowledge come in. Not all docs are up to speed on CD. It sounds like your doc is aware of it since he is having you do a trial.

I wish you well in your Knowledge Quest!! Please, keep us updated.

Here's some more info for you:

Our Thread on Celiac Blood Work Tests - Lists the complete CD blood work panel and links to other testing info.
Our Thread on CD Symptom List - List many symptoms, common & uncommon assoc. with CD.
Our Thread on Info aimed at Medical Professionals - An index of articles from Medical Journals, Continuing Ed, etc. Things that you might pass on to your Doctor.
CD vs Gluten Sensitivity - What's the Difference
Our Thread on GIG PDF - Gluten Intolerance vs CD - Looks at the differences between Gluten Intolerance and CD. There is a difference.
Our Thread on Clan Thompson's Ask the Doctors - Testing - Lot of good Q&A's in here. Like how many samples need to be taken.
Our Thead on the 5 types of Celiac Disease - This explains the different types of CD and their manifestations.
Our Thread on Dr. Scot Lewey Articles - Very interesting info from a Gastro Doc that is gluten & dairy sensitive. Definitely worth reading!


Don't miss these articles from the Info Aimed at Med. Profs Thread [Some of these are not exactly new, but the info in them is still really good - and possibly more than the doctors know ]

CD - More common than you think (2002) - http://www.aafp.org/afp/20021215/2259.pdf There is a diagnostic flow chart in here that tells the path to diagnosis.

Detecting Celiac Disease in Your Patients - HAROLD T. PRUESSNER, M.D.,
University of Texas Medical School at Houston - http://www.aafp.org/afp/980301ap/pruessn.html
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[sloaneroo]

Thanks for all of the valuable information! My son has only been gluten free for a few days, so I don't think it will be a big deal to get back on the gluten. I hope that our doc wants to do a panel soon so that we can get some answers! Thank you for all of the great info!

Leslie

[aklap]

Hi Leslie,

You're welcome!

Ahhh only a few days...then that shouldn't be a big problem. I suspect he's not been 100% GF. Please, please, take no offense in this - it just takes time to find all the hidden gluten in things. It's literally everywhere! Generally 3-6 months is a good time frame to get a good handle on this GF thing.

So, have you seen any difference in the few days he's been GF?
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[sloaneroo]

We haven't seen any change so far, but he does seem to be eating less! Which is probably due to his being two and too busy to eat!

We have been really strict, but I agree...I am sure that he is not 100% gluten free just because of things like toasters, jelly and other contaminents. We are working on it!

Thanks for the encouragement. I hope we get a resolution soon!
Leslie