Tests Are Back...and I Am Confused..

[cherie012]

Well, my 2 year olds biopsies and labs came back from his sigmoid and EGD..

Where to start..

His food allergy panel was negative, but the dr says this only measures systemic reactions like hives, not intestinal reactions.

He is anemic.

His "immunoglobins" are "normal"

His intestinal tract is "pretty much inflamed throughout"

He has 2 Celiac genes, dq2 and dq8 ( I think)

The MD wants to try him on steroids and medications used to treat ulcerative colitis/chron's and monitor him. If these don't work~ THEN he wants to eliminate wheat from his diet~ dairy and soy have been eliminated since he was 2 months old.

Now. is this a normal path? I mean, to treat as colitis/chrons then check for celiac last? I feel more lost now than I did before all of this. I hate the thought of giving him lots of meds unless we know that is the true issue. Anyone with thoughts or insite, I would be ever grateful.

thanks!

[Nantzie]

If it were me, I'd do just the opposite and try him on a gluten free diet before I'd even consider giving him such intense medication.

[Rachel--24]

If it were me, I'd do just the opposite and try him on a gluten free diet before I'd even consider giving him such intense medication.

I agree.

No way would I be treating with drugs before trying the diet. Did he have specific tests for Celiac done or just food allergy tests?

[cherie012]

I agree.

No way would I be treating with drugs before trying the diet. Did he have specific tests for Celiac done or just food allergy tests?

He said that he did the food panel and it was negative. He has 2 celiac genes, but the "markers" were negative. They did the scope with biopsies and the tissues were "inflamed" I do not have the results in my hands, I got the info on the phone with the DR today, and 2 kiddos at my feet.

[jerseyangel]

I have 2 sons myself. If I were faced with the same decision, I would try the gluten free approach first. If that solves it, he will never have to go on the serious medications. In a matter of a few weeks or less, you could have an answer, and your son will be healthier in the long run as well.

[Rachel--24]

He said that he did the food panel and it was negative. He has 2 celiac genes, but the "markers" were negative. They did the scope with biopsies and the tissues were "inflamed" I do not have the results in my hands, I got the info on the phone with the DR today, and 2 kiddos at my feet.

Any food panel testing doesnt have anything to do with diagnosing Celiac. He would have to have the Celiac panel done. Maybe the doc did run Celiac tests and thats what he's referring to as the "markers"??The blood tests can give false negatives in kids his age though so I wouldnt rely on them anyways. Definately put him on the diet and see if he improves. I dont know why the doctor would suggest such drastic measures before a dietary change. Especially given the fact that he carries the genes.

[Guest nini]

I would try the diet first... I am highly suspect that this Dr. is getting kickbacks from the drug companies which is why he's so quick to want to prescribe meds... (hopefully not...) but anyway, I don't understand why Dr.s wouldn't want to try a "no risk" dietary change first to see if it helps instead of prescribing heavy (full of risks and side effects) medications...

Especially with kids... even if he did do the correct testing, which it doesn't sound like he did, it is still highly unreliable in children under 5...

try the diet first. you don't need a Dr.s permission to try the diet. It may save your family a lot of time and anguish over testing. If he starts to improve, you have your answer and you can go to the Dr. with that evidence and insist that he give you a DX based on positive dietary response. If he won't, then find another Dr. who will.

[cherie012]

I would try the diet first... I am highly suspect that this Dr. is getting kickbacks from the drug companies which is why he's so quick to want to prescribe meds... (hopefully not...) but anyway, I don't understand why Dr.s wouldn't want to try a "no risk" dietary change first to see if it helps instead of prescribing heavy (full of risks and side effects) medications...

Especially with kids... even if he did do the correct testing, which it doesn't sound like he did, it is still highly unreliable in children under 5...

try the diet first. you don't need a Dr.s permission to try the diet. It may save your family a lot of time and anguish over testing. If he starts to improve, you have your answer and you can go to the Dr. with that evidence and insist that he give you a DX based on positive dietary response. If he won't, then find another Dr. who will.

You know, this dr has been seeing my son nearly all of his life~ we started with reflux that wasn't easily managed. He has been very guarded with the meds~ and hasn't been quick to write out a script and send us off~this is the first time he as suggested anything of this nature really. He has been very supportive of my total breastfeeding, and guided me through a elimination diet while doing so~ in fact, he told me to BF as long as possible and as much as possible, never pushing formula or supplements. I guess that is why I am baffled...

As I said before, I got these results over the phone with 2 small kiddos attached to me. I know going into the scope we were testing for EVERYTHING~ celiac, food allergies, parasites, bacteria, EOS, enzyme deficiencies etc... Maybe I was hoping for more conclusive things~ other than what I have got. I have a very strong feeling it is food related. I will discuss with my DH over the weekend, and will call the DR again on monday before we do anything rash.

[Becky6]

I would say go for the diet! Steroids are so nasty and have awful side effects. Especially say you go the steroid route and they don't work and you end up putting him on the diet anyways? Time would have been wasted. My daugthers doc suggested a endoscpy but I opted to try the diet because I don't think it was worth the risk for me to put her under. It is the least invasive way to see if it helps by putting him on the diet. Good luck and let us know what you decide!

[tarnalberry]

Some doctors mistakenly think that the gluten-free diet is horribly difficult and a nasty life-sentence to give their patients. Of course, this isn't true, but it's what they think. I would, given the rapore you've described with this doctor, consider scheduling a consultation with him to discuss the options at greater length, letting him know that you *don't* see the gluten-free diet as being impossibly difficult and are not sure you want to try drugs first. But it sounds like you have a good relationship with him, and he may have reasons for thinking it's less likely to be celiac. Talk with him, have him answer your questions and explain his thinking, and let him know where you are coming from. The two of you working together may be able to come up with the best plan - he know the medicine, but you know your child.

[Merika]

I have read from some people, ones on this board too I think, that in undiagnosed celiac in which steroids are prescribed, symptoms do in fact decrease. It makes sense, because steroids reduce inflammation. However, I would be concerned that if the steroids help, celiac or some other problem may just be masked. It seems better to hunt for the source of the inflammation.....the steroids may be a good idea, too, but I would always wonder....

And, testing little kids for celiac does lead to more false negatives than in adults....it doesn't seem like trying the diet for a few weeks or a month would hurt anybody and may help.

.02,

Merika

[cherie012]

I spoke with DH a little last night, he is always for the least invasive/medicinal path when possible. I will call the DR and nutritionist monday~ and let them know we will do the diet. You're, right, he did say he'd "hate" to restrict his diet so young, but, as long as he can have rice products he'll be happy.

I will do the diet with him. I think I could benefit from a trial as well.

thanks to all.

[Guest nini]

You know, this dr has been seeing my son nearly all of his life~ we started with reflux that wasn't easily managed. He has been very guarded with the meds~ and hasn't been quick to write out a script and send us off~this is the first time he as suggested anything of this nature really. He has been very supportive of my total breastfeeding, and guided me through a elimination diet while doing so~ in fact, he told me to BF as long as possible and as much as possible, never pushing formula or supplements. I guess that is why I am baffled...

As I said before, I got these results over the phone with 2 small kiddos attached to me. I know going into the scope we were testing for EVERYTHING~ celiac, food allergies, parasites, bacteria, EOS, enzyme deficiencies etc... Maybe I was hoping for more conclusive things~ other than what I have got. I have a very strong feeling it is food related. I will discuss with my DH over the weekend, and will call the DR again on monday before we do anything rash.

I wasn't trying to insult your Dr... it's hard to know the whole story just from a persons posts and unfortunately a lot of Dr.s are very quick to prescribe drugs... But, it's also hard to tell in writing that I was trying to be sarcastic... oh well.

Good luck trying the diet. I'm hoping you notice a drastic improvement in your son's health and can get his Dr. on board with you.

My daughter's pediatrician at the time was very supportive of me trying the diet after the GI she sent us to dx her only with IBS (in a 3 year old????!!!!) my daughter was anemic and hypoglycemic and hadn't had a single formed poop her entire first 3 years of life, her poor little bottom was usually raw and bleeding from all the diarrhea. She was also having behavioral issues with it as well and I'm telling you, within DAYS we saw a profound improvement in her. She's five now and extremely healthy and happy and LOVES the gluten free diet, especially since I go out of my way to find treats that she can have.

BTW Spangler brand Candy Canes are gluten free if you want to get some of those to keep in your purse for any outings where people are offering up candy canes to the kids. Most are probably safe but so you don't have to worry, just grab a box of Spanglers! When people offer him a candy cane, you can let him take it, then trade him out for a safe one. Give the ones you take from him to someone else....

[cherie012]

No offense was taken, really. I just wanted to clarify my standing with my son's drs~ I am a RN ( but clueless to this stuff, my text books have half a page on celiac!) and do have a good rapport with both of his Drs( dispite the fact I am a RN and we are notoriously "bad patients", LOL~ and both have been more than supportive of our moderately "crunchy" ways of raising our children~ they even let me wear my son in a traditional carrier throughout the hospital, and into the procedure room. he was put to sleep in my carrier, where he has lived his life. I guess that added to my confusion of treat with meds, then diet. But, as someone mentioned, he did say he would hate for him to be restricted food wise, and maybe that is the basis. We are not fond of a pill for every ill, and try more natural approaches whenever possible. And steroids. Ugh. last time my son had them we were up for 36 hours straight, and he was mean as a snake, totally unlike my generally kind and cuddly boy.

Your daughter's story is very, very familiar. Mason started off with reflux at birth, that was not easily controlled. He has NEVER had a formed stool, and will often have a bleeding rash on his bottom that creams don't help. He has always gone through bouts of this foul smelling, light colored diarrhea, but it has become constant over the past 9-10 weeks. Now we have undigested food, a grainy texture, and if it isn't the really nasty kind that soak into the dipe and blister his bottom, it it totally explosive and putrid

Furthering my thoughts on this, I am nearly certain this gluten thing is my troubles, too, after doing all of this research. I had graves, diagnosed with IBS as a child and terrible joint aching to the point of not wanting to move~ tested for lupus ( my dad has lupus) and they have been negative. I have had hives for many months now that do not respond to any antihistamines. It is markedly worse after binging on breads/baked goods as does the joint pain ( food journals are wonderful things!). After reading on my son, and finding out he carries those genes, I started to look at me, too. If I am wrong on all of this, I will eat my words. But I really, really have that gut feeling that this is the root of the problem, and I want to trial us both and see what happens. I guess I am looking for support, you know~ I am not a crazy mama who is going to do harm by not giving meds, and treating with dietary modifications.

thank you all!

[Guest nini]

ya know, we all want to do what is best for our children, so it's perfectly natural to struggle with feeling slightly crazy for not wanting to treat with meds first... my daughter was also dx with reflux as an infant and had severe projectile vomiting as well... when we were going through all the testing to figure out what was wrong with both of us (I was very very ill) my mom told me that I had all the same symptoms as my daughter as an infant... interesting. She said that she wasn't able to breastfeed me and I couldn't tolerate formula so they ended up just giving me regular milk with cereal... she always attributed my poor health to the fact that I wasn't breastfed and my younger sister was (she found La Leche League by the time my sister was born). She claimed that I didn't get the immunities I needed therefore I was just doomed to be sickly. Part of why she was so insistent that I breastfed my daughter. Problem with that was that I was still consuming gluten and it was affecting my child. Poor kid.

[cherie012]

I just called the pharmacy to get the full medlist he prescribed, so I could hopefully understand it more.. But, I don't LOL.

Prevacid. No biggie. He was on this from 11 days old on up til 15 months. He is still refluxing, so I can understand this~

Prednisone~ rationale is to decrease the inflamation throughout the gut. But, I hate the side effects it gives him. I will question the necessity of this tomorrow, and probably refuse it.

Folic acid, it has to be taken with the following drug, sulfasalazine. That drug is a sulfa class antibiotic used for chrons/ulcerative colitis and Rhumatoid arthritis. I am not keen on this one, either. Side effects can be nasty. Will question it's necessity tomorrow too.

On a side note~ peanut didn't have any gluten friday, saturday or today. So far today we haven't had ONE Stool. that is a record, as we usually have at least 3 by now. I will keep going and see if it is going to help. I sure hope so.

Again, thanks to you all. I feel so lost and overwhelmed right now. You all have helped out SO very much.