Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gi Appt

Rachelmoon

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,040
    • Most Online (within 30 mins)
      7,748
    marlee h
    Newest Member
    marlee h
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.