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Gi Appt

Rachelmoon

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Rachelmoon Rookie
Rachelmoon
Posted

I just got done at the dr for my daughters one year well check. I am a self diagnosed celiac... but I know that I have it! I have all the signs... when I was younger my tooth grew in without the enamel, I had the rash, I have always had digestive problems but didnt realize it. Then when I got pregnant the symptoms came hard! I dont have insurance right now so I cant get tested myself, but the gluten free diet has been amazing and thats all I need for myself! The hard part is convincing others for my daughters sake. I am sure she has it too as everytime she has eaten gluten she is a total different baby and has all the typical symptoms. Back to the true reason I am posting... I am getting my daughter tested... Her doctor is awesome but I had to pretty much insist that she get tested, so he agreed to send her to a ped GI. I made an appt for Thursday and I dont know how insistent I should be. There is only one ped GI office in the state so I dont have the option of choosing who we see, but my dr assured me they know what they are doing. When talking to the dr and explaining that my daughter is on a gluten free diet and we want the genetic test because I dont want to put her back on gluten, he was questioning me about why I thought that she couldnt be on gluten free diet and still get accurate results. He asked where I got all my information and so on. I am not claiming to be an expert but I have read everything I can find about Celiacs, whether I understand it or not. Basically after all that my main question is should I bring info into the GI with me or does that make me a crazy pushy know it all mom? Any advice would be lovely. (I dont mind being that crazy pushy lady when it comes to my baby so if I have to I will!)

P.S. Thanks to everyone on here who gives advice and shares their stories... I feel so alone with this and everytime I come here I read everyones post and usually end up crying out of sadness and relief for everyone!

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Nicholasmommy Apprentice
Nicholasmommy
Posted

Demand that they look into it.... It really depends on how good of a GI doctor you get.... We got a horrible one who said that there was no way that my son has Celiac disease and just tried to give him an appetite stimulant. That was with FTT, positive blood work, and a strong genetic history. Well that doctor was an idiot and we went to another one and guess what???? My son has Celiac! Tell them that you have been diagnosed with Celiac by a doctor (a little fib but they may take you more serious)

The doctor you talked to does not sound like they know what they are talking about... If your doctor has been gluten-free for a long time then of course it won't come up.... Man, who gives these people medical license's?? Know your stuff and trust your gut. At the end of the day if you do not get a medical answer you can always just have her gluten-free. Trust your instincts!

Foxfire62 Newbie
Foxfire62
Posted

Push for it. Although doctors know a lot, they don't know everything, which is why celiac disease is such a hard thing to diagnose.

Don't take "no" for an answer! The earlier celiac disease is caught, the better and quicker/easier recovery.

Good luck!

txmama Newbie
txmama
Posted

We just had an appointment for my 3 yo dd like this last week. After a year and 1/2 of vomiting daily, despite the max dose of Prevacid and fundoplication surgery, I stumbled onto the diagnosis when we inadvertently went gluten-free for a week and she got better.

Like you, I was also worried that the dr wouldn't appreciate that I had figured it out myself. I typed up a 2 page long history of her symptoms--when they appeared, when they stopped, what I noticed, etc. I had stopped keeping food diaries, so I just sat down with a calendar and figured out the timeline. (I even went back to my 'sent' emails to get exact dates.) When I got to the dr, I handed him a copy and basically read it to him from another copy.

Hopefully making a written record will help the dr take your ideas seriously. As someone else said, however, it will probably depend on the doctor. Having had numerous crappy doctors, (one told us her vomiting was due to a traumatic brain injury that we just didn't know had occurred!), we no longer waste our time with local specialists. We drove the 7 hours to Texas Children's Hospital for our appt. It may be that you will have to make a trek to a better facility. Hopefully not.

Our dr thought that dd's dietary response "was compelling," and said we need to find out if it's a wheat allergy or Celiac. Since she had been off gluten for about a week, he said the Celiac panel might not show up, but that the genetic test could rule it out. (You have to have the genes to have Celiac.) He also did a wheat allergy rast. We're waiting for the results now.

Hope this helps! Good luck!

Maiko Newbie
Maiko
Posted

If I were you, I'd take a folder of information just in case he/she starts to question you. If the appointment goes well and you don't feel the need to whip it out- don't but you'll have it on hand if necessary.

Nobody we talk to has any clue what celiac disease is, they just aren't aware. I agree with a PP that said doctors know a lot but they just don't know everything. I hope the doc you see is open and willing to hear you out.

Good luck!

Rachelmoon Rookie
Rachelmoon
Posted
  • Author

Thanks everyone! I printed a bunch of info on Celiacs and the testing for it:) As well as the reaction my daughter has had to it. I am hoping since they are the only specialist in the state that they know what they are doing but if not I will be happy to tell them ;) This is a great site! Thanks to everyone

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    • trents
      High TTG-IgG and Normal TTG-IgA

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

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      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
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