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

Get Endo Done Now?


jemms

Recommended Posts

jemms Apprentice

Just diagnosed with Gluten Intolerance and possible Celiacs. I was told by my doctor to wait until I feel better to get the endo done. She said the risk for infection is high because I have had so many G.I. symptoms... my concern is that the endo wont show celiac's if I start eating gluten free now...isnt it best to get it done now rather than go off gluten, feel better then start eating gluten again?? Any thoughts on this would be appreciated. Thank you so much!!


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



Celiac.com Sponsor (A8-M):



goodnews Apprentice

Just diagnosed with Gluten Intolerance and possible Celiacs. I was told by my doctor to wait until I feel better to get the endo done. She said the risk for infection is high because I have had so many G.I. symptoms... my concern is that the endo wont show celiac's if I start eating gluten free now...isnt it best to get it done now rather than go off gluten, feel better then start eating gluten again?? Any thoughts on this would be appreciated. Thank you so much!!

Interesting, I have never heard that before. I feel like crap and am getting one on Wednesday. Also my gallbladder is failing and have frequent gallbladder pain and they are going to probably schedule to have it taken it out after I do the Endoscopy. They actually wanted to do the endoscopy first. Yes, if you are going to get the endoscopy done and you are thinking celiac you definitely can't go gluten free yet! Doesn't the doctor get that you have GI symptoms and that is why you need the endoscopy? does the dr. feel it will resolve on it's own? Very strange.

Jaymie Jaymz Rookie

I agree. I would get it done now while you're still eating gluten. What's the point of going off of it and then back on?? Gluten challenges suck, and no one really knows for sure how long you should be on one in order to bring the damage back. Everyone's body is different, so all we can do is guess.

From reading here, I've seen people test positive after just one month, and then I saw someone who tested negative even after a six month challenge. Just seems like a crap shoot.

Anyway, hope you get some answers soon.

Cara in Boston Enthusiast

Do not go gluten free until you have the endoscopy done. Even a week can be enough to heal enough that your result could be a false negative. I would schedule it as soon as possible so you can go gluten free as soon as possible and start feeling better.

Cara

jemms Apprentice

thank you everyone!! I have decided to go ahead and get it done...May 18th is the day!

I think my doctor didnt understand why I needed that definitive answer that yes it is Celiac's...she kept saying well you are gluten intolerant so whether you have celiacs or not you still have to stay off the gluten. I need to know absolutely for sure if it is celiacs not only for me but for my children as well. I am adopted so the more medical info I can find out for myself will benefit my children in the end as well. I am going to start back on the gluten which in some sick way is exciting because I can have that croissant I have been craving :P . Thanks everyone for taking the time to respond.

goodnews Apprentice

thank you everyone!! I have decided to go ahead and get it done...May 18th is the day!

I think my doctor didnt understand why I needed that definitive answer that yes it is Celiac's...she kept saying well you are gluten intolerant so whether you have celiacs or not you still have to stay off the gluten. I need to know absolutely for sure if it is celiacs not only for me but for my children as well. I am adopted so the more medical info I can find out for myself will benefit my children in the end as well. I am going to start back on the gluten which in some sick way is exciting because I can have that croissant I have been craving :P . Thanks everyone for taking the time to respond.

Glad you got it scheduled...yes sometimes they just don't know. My dr. told me the other day that I could try the gluten free diet and see if I felt better. I explained to him that I wanted to wait til all the testing was done to make sure. I said to me there is a difference between going gluten free and not ever being able to cheat (having Celiac) and having to go gluten free for a while (or possibly permanently) because it just makes me feel better. So my endoscopy is in 2 days...tommorrow is the last day I can eat. So we ordered out white pizza with broccoli tonight. It was divine! I am definitely going to miss that. Of course I am certain I will be feeling pretty sick in a little bit, at least with the gallbladder. Keep us posted and enjoying the last hurrah eating gluten. : )

Archived

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

  • 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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.