How Do I Handle The Doctors?

[Kujda]

Hey! I am the mom of the 3 year old we are trying to adopt but all his medical issues need to be cleared up. Have seen a GI and they did blood tests and an x-ray of his stomach. Celiac panel came back neg (only been on gluten for 1 month) which I predicted to the Doc. The xray showed him FULL of stool. Got the call today that he was just constipated. All I needed to do was give him all this medicine to make him move his bowels. Of course right now he is having horrible poops and 4-5 a day. SO now they want me to give my child severe diarrhea which he gets all on his own thank you very much. I know something is wrong. This is not just constipation. I am very upset and again feel dismisssed by yet another doctor.

QUESTION!! They also mentioned that in his blood screen he was low for thyroid. Has this happened to anyone? Waiting for the Doctor to call and talk about it.

Also we are seeing a neurologist for possible seizures. I have heard that this may be related. Has this been anyones experience?

Also does anyone know of a doctor in Nashville TN that has expereince with celiac or gluten related problems? I may need to go looking for a second opinion.

Feeling very lost and alone.

Kristin

[kbtoyssni]

Seizures can be related to celiac. And I am so frustrated by a system that gives you drugs to fix a problem rather than figuring out the root cause.

I think I would either get a second opinion or just try the diet. You don't need a doctor's permission to not eat gluten so this is a great option if you can't find a good doc and/or you don't want to keep feeding him gluten. Good luck!

[Virgie]

Hi! Sorry to hear that you have to handle the doctor too. We had a doctor like that. It is not fun !! I would seek a 2nd opinion if you are able to.

I'm new to this board so forgive me if this question has been asked already - has your child been checked for Crohns or Ulcerative Colitis? Constipation & diarreha are both symptoms of those diseases. Also it seems like seizures can tie in with those diseases also. My son had a seizure disorder until he was 12 & then outgrew it. Then when he was 14 he started having stomach problems and was diagnosed with Ulcerative Colitis at 15. It was just a thought.

Hope you can get some good answers and proper treatment going soon. Best to you !!

Virgie

[gfpaperdoll]

wanted to say that dairy sometimes causes constipation for a lot of us.

If you take out dairy do not add in soy milk, no one really needs that stuff, & no one needs dairy especailly with seizures

I sent you a PM

[Nic]

I was in the same boat as you 2 years ago. I couldn't understand how any doctor would think it was "just constipation". My son, as I am sure yours as well, was in terrible pain trying to go. And he too was shown to be full of poop on x ray. I would try to explain to them that when he does poop it wasn't even hard, he was struggling to poop soft poop or diarrhea. Eventually we got a positive diagnosis on Celiac and going gluten free helped some but he wasn't fixed. We went the next 2 years with me going back and forth with the doctors trying to figure out why he can't go, I kept asking if it could be milk. I was told no. We switched doctors who did another colonoscopy and found that his colon was filled with white bumps which he said signafied another food allergy or intolerance. I took him off milk that day. Constipation went away within the first 3 days. He has now pooped successfully since the beginning of May.

Nicole

[gfmolly]

My 3 year old has had trouble with the milk as well. He would be so constipated he wouldn't go for 4-5 days and would cry because his stomach hurt. Taking him off of milk has improved this alot!

Best wishes.

Terri

[stef-the-kicking-cuty]

I was diagnosed with celiac a little bit over 3 years ago (with 27). The actual pain from celiac started 7 years before THAT (with 20) and I believe, I had underlying celiac problems all my live. I had thyroid (under) with 17, too. Doctors didn't see that connection at that time, cause I wasn't diagnosed with celiac yet. And when I was around 24, 25 years old, one of the doc's I ran to with my severe migraines said after a blood test, that I'm also at the edge of suffering from seizures and he was like 'be careful, you're not getting any seizures'. I was like 'What?' I never asked how he came to that conclusion (I never had seizures before in my life, maybe he confused me with someone), cause I was so pissed off (sorry for my french, but I was just plain mad at him) at him, that I left the office. Maybe the blood test showed something at the time. I have no idea. So at 17 I had that thyroid problem and with 24/25 apparently I had a seizure problem, that never broke out however. I also had constipation and diarrhea mixed up (sometimes they even came in one and the same sitting), but even more so I had the constipation. I'd say, it was constipation to 98% with diarrhea mixed in there from time to time. When I went glutenfree, I had instant relief, after a week the head aches had completely cleared up and after 6 months my stomache pain was gone. I never even had the biopsy, cause I'm a little sissy sometimes, but my blood test was positive (way high) and I did the glutenchallenge, which was positive also.

So, yes, IMO thyroid problems, seizures, and celiac can be connected... and there are a few things, you can do, if you want a good diagnosis without going to a doctor who doesn't have a plan.

You also can get tested over EnteroLab www.enterolab.com . It's not considered the gold standard, but I've heard, they are very reliable and I know some of the folks on here did that, too. And I'm planning on doing that with my baby, once he's here, 100%.

You can also do the glutenchallenge, that I did. Or even a food diary for that matter.

I definitely would get a second opinion and if you have any other questions, you can also come to us, cause most doctors nowadays don't have a plan about the "glutenfree thing" anyway.

I wish you the best of luck and will keep my fingers crossed for you.

[Juliet]

Our son was "full of poop", too. He would have constipation for 3-5 days, have one slightly hard poop, then two more times of out of control diarrhea. Then the cycle would start again. They found that his intestines were blocked - either from something or from inflammation - and the reason why if he did go it was predominantly diarrhea was because only liquid could really pass the blockage. He was in extreme pain, too. The veins on his distended belly would pop out every time something moved in his intestines and he'd just cover his eyes with his arms and try to sleep through it.

While he was being diagnosed, our pediatric g.i. said that regardless of the cause for why this was happening, we needed to do something to help the blockage. He did not want him to have a laxative since that can exacerbate any malabsorption problems. So we ended up giving him children's Fleet enemas (you can get them at any pharmacy in the U.S. like CVS or Rite Aid) everyday for one week, and 15 ml. of mineral oil twice a day for about a month. The mineral oil really helped, and within a few days, our son was sucking it up out of the dropper like it was candy. And, since I'm writing on this board, my son did turn out to have Celiac disease, so going gluten free helped out the most. The inflammation of his intestines (among other things) when exposed to gluten was the really bad and painful symptom of having the disease (along with the extreme malabsorption - he was basically starving to death).

I don't know where you can go to find a good doctor in Nashville (I'm in California), but I would agree - find a better doctor who will LISTEN!!!! No doctor knows everything, and many doctors know less than they realize, so dismissing you is wrong even if they are right. Your concerns should be addressed and they should follow through with any exams, testing, whatever until they find a reason for it. They work for YOU and not the other way around. It might not be Celiac disease, but there's no reason for your child to just be plugged up like that.

[KimC1]

Hi Kristin,

Sounds a lot like my Casey when she was dx'ed in 2004. We live in Arkansas and see Dr. Maryelle Vonlanthen at Arkansas Childrens Hospital. She is just incredible and while not in TN--she would be well worth your time to check her out. Good luck!

Kim

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