Referral to Ped GI doc

[JenneinCA]

About a year ago ds11 got a blood test for celiac disease. It was a borderline positive and the doc did not want to either refer us to someone else or do anything else. I was supposed to do what I could to get ds to eat more and hope the problem went away. With lots of effort I got ds11 to gain a little weight and the doc was happy. Most people here were not impressed with the wait and see attitude.

 

Today we went back again for something unrelated and ds had LOST a pound since we were there last time. Today the doc was finally concerned. Today we got the referral to the Ped GI doc.

 

(The staff at the office is amazing. The appointment was at 1:30. We finished about 2:15. I had the referral authorization number by 2:45. And the appointment with the GI doc by 3:00. Talk about quick!)

 

Anyway, ds11 will see the Ped GI doc in about a week and a half on August 21. I am happy because we might finally get an answer about what is going on and sad/scared that we need to. I don't want to totally redo the food in the house, but I don't want him to be sick either. I think it is going to be a long week and a half.

 

I suspect that ds11 will end up with more blood work and possibly (probably?) other stuff that I don't want to think about. He is not stressed. I am not coping as well.

 

Positive thoughts appreciated.

[Dana]

:grouphug:

 

Good luck!

 

You'll hopefully get useful information...and if food changes need to be mad, you will find a new normal.

[Shelsi]

:grouphug:

 

I'm shocked your doc just waved it away last year. That's not very good doctoring. Celiac doesn't go away and it's actually rare for it to even show up in kids on blood work even when they do have it (there's usually not yet enough damage to their system for it to show up). IMO your family doctor screwed up. Big time.

 

The ped GI will see what the blood work shows and then more than likely will want to do a biopsy to confirm the results. The biopsy really is not that bad. My dd was finally diagnosed with celiacs when she was 2 yrs old (had issues since birth which is why I say finally). The scariest part will be being put under anesthesia but the rest is super easy, not painful, and is over and done with in 30 mins or so.

 

My dd had negative blood work, inconclusive biopsy, and came back as very high risk with genetic testing.

 

She weighed only 15 lbs, wearing 6-9 mos clothing, at 2 yrs old when the ped GI told us to go GF. This was not a child who was afraid of eating. She was still nursing 10+ times a day, she would eat 2 bowl fulls of oatmeal at breakfast, more steak at dinner than dh, etc.

 

Anyways 6 weeks after being GF she had gained 5 lbs. An entire third of her body weight! And she started to eat more normal sized portions of food for a toddler. And she started grow. After a few months she was finally on the growth chart. She outgrew all the food intolerances she had previously (all of the top 8 plus others). Her behavior changed for the better. Her severe reflux completely went away. It was like I finally got to meet and know my real child because there had been something wrong since the day she was born but we just didn't know what.

 

Now at 5 yrs old she's in the 50th percentile for height and weight. It's amazing.

 

Going GF is not a bad thing. It's a wondrous life saving thing for a person with celiac and the degree to which they will feel better sometimes cannot even be imagined. After dd was diagnosed we later found out dh had celiacs too. He went GF and the constant 24/7 headaches were gone, the joint pain, depression, obesity, brain fog, the constant lack of energy were all gone. He said he didn't even realize how bad he felt until he felt better.

 

Anyways I know I've blabbered on but seriously, don't look at this as a bad thing. Finally figuring out what was wrong with my dh & dd was one of the best things to happen to our family. And to have such an easy solution. They don't have to take drugs for life. They just need to not eat certain foods.

[jenbrdsly]

:(

 

I myself developed gluten intolerance in my 30s, but do not have Celiac disease.

 

It was really hard giving up gluten, but now I feel 100% better. I even look at things with gluten in them, and feel physically ill.

 

 

So there is a positive light at the end of the tunnel. :grouphug:

[JenneinCA]

Thanks for the hugs.

 

I know that it will be a good thing to know what is going on. It is only another week and a half until he sees the gi doc. I don't know for sure what will happen that day, likely a form to get more blood work but not much else. At least I think so.

 

The big thing is ds11 needs to gain some weight. He is almost 5 feet tall and weighs only 67.5 pounds. He is getting taller but not gaining anything and he looks so so thin. I want him to be healthy.

 

If the blood work showed issues last year, does that mean that if he does have celiac it will be obvious? I don't want to be in 'maybe' land anymore.

[Shelsi]

 

If the blood work showed issues last year, does that mean that if he does have celiac it will be obvious? I don't want to be in 'maybe' land anymore.

 

Yes because there's not really a "borderline" positive when it comes to celiac which is why I'm a bit flabbergasted at how your doctor handled it. It's either positive or negative. It'd kind of be like saying you were borderline pregnant.

 

The amount of testing you have done will be totally up to you but think about it carefully. The tests will only be accurate if he's consuming gluten at the time. If he's celiac, once you go GF he'll never be able to eat gluten again. Not long enough to get testing done. We chose not to have my dh tested. He's been GF for 3 yrs now and there is no way at all he could ever eat enough gluten to be tested. MIL accidently put a regular waffle in our GF toaster. She told us but dh didn't think it would be a big deal and went ahead and toasted one of his GF bagels. He was in the bathroom allllll night long in misery and had headaches for 2 weeks. Needless to say we went out and bought a new toaster the next day. So long story short to say that dh will never have an official diagnosis.

 

Dd is officially diagnosed.

 

Once your ds goes GF he'll probably start to notice positive changes in the way he feels in just 2-3 days. My dh said that after 4 days his headaches were less intense and after 2 weeks they were less frequent. After about 2 months they were completely gone.

[Shelsi]

I forgot to mention, one of the best books when you're first starting out is Gluten Free Living for Dummies. There are A LOT of internet myths out there regarding the GF diet and the book clears them all up. It gives you the basics on how to eat, what to eat, and how to go out to eat.

 

Also make sure the rest of the family is tested as well if they diagnose your ds with celiac. It's hereditary. We get my ds tested yearly; at least until we can afford genetic testing in which case if it comes back that he doesn't carry the gene then we will stop testing yearly.

Edited August 11, 2012 by Shelsi

[JumpyTheFrog]

There are several genes for celiac disease.

[JenneinCA]

Thanks for the information. I know to get everyone blood tested before we go off gluten or the tests may not be valid. My other kids are not going to like that very much. My husband, too.

 

We did go gluten free for the month of January. I was suspicious of the doctor's not doing anything even then. But ds11 didn't say he felt any better at the time. And I don't think he gained weight either. When February arrived we decided to try the gluten again to see if he would react. He didn't. So we went back to total gluten. I was trying to force the issue and do something to get the doctor to do something to get ds11 some help.

 

 

I really hope answers come soon.