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

Seeing New Gastro Tomorrow--need Advice


mom26boys

Recommended Posts

mom26boys Apprentice

Hi! I was wondering if anyone could give me some advise. I had a positive endomysial antibody (iga) screen. I had previously seen a gastro who basically told me I couldn't have celiac because I was too fat (I posted about it previously). I'm seeing a new one tomorrow and I'm assuming he will be "uneducated" when it comes to celiac as well. I would love to get others' advice as to how to handle the visit this time and what kinds of questions to ask. I'm also assuming this doctor will take one look at me and think the same thing the other one did, since it seems to be the norm in their thinking. I even have an uncle, who is a pediatrician, who doesn't believe I have celiac either and told me the endomysial antibody screen could be positive for other reasons. It seems they see the fat, and completely disregard the possiblity of celiac, even when I try to tell them the great results I had from going gluten-free for 3 weeks. Any advice anyone could give me would be so greatly apprecaited!!!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Try to think positively if you can. Not all doctors are clueless about celiac and the fact that not all of us are rail thin. You may luck out this time. Bring copies of your test results with you. If you had vitamin and mineral panels done and or tests for anemia bring those also. If you didn't have those done then ask if he will do them. Bring a list of your symptoms on gluten and list symptoms that have improved. If you are back on gluten, which I hope you are if you are persuing an endoscopy, let him know what the results were when you went back on it. Hopefully the doctor will be better than the last one you saw. If he isn't well....you don't need their permission to be gluten free.

Lisa Mentor

Here is some information you might take with you. The article is from 2006, but still a good reference

Good luck to you tomorrow.

https://www.celiac.com/articles/1077/1/39-o...bese/Page1.html

mom26boys Apprentice
Try to think positively if you can. Not all doctors are clueless about celiac and the fact that not all of us are rail thin. You may luck out this time. Bring copies of your test results with you. If you had vitamin and mineral panels done and or tests for anemia bring those also. If you didn't have those done then ask if he will do them. Bring a list of your symptoms on gluten and list symptoms that have improved. If you are back on gluten, which I hope you are if you are persuing an endoscopy, let him know what the results were when you went back on it. Hopefully the doctor will be better than the last one you saw. If he isn't well....you don't need their permission to be gluten free.

Thank you! Yes, I do need to remember to think positively. I've gotten so used to having to go before the firing squad, so to speak, about my obesity every time I go to the doctor for their help to figure out what is wrong with me and why I feel so lousy all the time, that I have grown to be very defensive with doctors. Thank you for suggesting the vitamin and mineral panel tests. I haven't had those done and hadn't even thought about it. I am back on gluten, reluctantly, and I find myself "cheating" by not having any for 2-3 days because I just feel so much better without it, but then I get back on the gluten and I feel horrible again. I will be so glad when this is all over and I can finally be gluten-free for life! Thanks again :)

mom26boys Apprentice
Here is some information you might take with you. The article is from 2006, but still a good reference

Good luck to you tomorrow.

https://www.celiac.com/articles/1077/1/39-o...bese/Page1.html

Thank you! Thats a great article! I've got it printed out and ready to go!!! :)

ravenwoodglass Mentor
Thank you! Yes, I do need to remember to think positively. I've gotten so used to having to go before the firing squad, so to speak, about my obesity every time I go to the doctor for their help to figure out what is wrong with me and why I feel so lousy all the time, that I have grown to be very defensive with doctors. Thank you for suggesting the vitamin and mineral panel tests. I haven't had those done and hadn't even thought about it. I am back on gluten, reluctantly, and I find myself "cheating" by not having any for 2-3 days because I just feel so much better without it, but then I get back on the gluten and I feel horrible again. I will be so glad when this is all over and I can finally be gluten-free for life! Thanks again :)

What you are doing is repeated gluten challenges and it seems each time the result is positive for your body not wanting gluten. No matter what the doctor says IMHO your body is giving you the answer.

mom26boys Apprentice
What you are doing is repeated gluten challenges and it seems each time the result is positive for your body not wanting gluten. No matter what the doctor says IMHO your body is giving you the answer.

Yes, you are right. Thank you again :)


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

How did your appointment go? I hope the new doctor was at least a bit more knowledgeable about celiac and that all went well.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,050
    • Most Online (within 30 mins)
      7,748

    Rima
    Newest Member
    Rima
    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

    • tiffanygosci
      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • knitty kitty
      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
      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
      @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
      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.
×
×
  • 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.