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

Scope


MaryJ

Recommended Posts

MaryJ Newbie

Hello all,

I am new to this so please bear with me. My son's blood test came back positive for Celiac. When I talked with the Doctor she said to watch what he eats, burger no bun, watch wheat and gluten, etc.... Then she called me back and said the wanted to schedule the scope. So I called the Pedicatric GI to schedule and was yelled at for watching his diet. He has been gluten and wheat free for a week, they want me to put him back on gluten and wheat so he can have the scope. I am having a hard time with that because he is actually starting to feel better and has a smile on his face. I am at my wits end. I cannot knowingly give him something that is going to make him feel bad again. I don't know what kind of response I am looking for, just really needed to vent. Thanks for listening.

MaryJ


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



Celiac.com Sponsor (A8-M):



cruelshoes Enthusiast

Unfortunately, in order to register results on the biopsy he has to be eating gluten. Otherwise you risk getting hin healed up enough to show healthy villi, when he actually does have celiac. I know it's hard, we had to do the same thing with my son. But if you want to go ahead with the scope/diagnosis (I highly recommend this, especially with children), you have to keep feeding him gluten.

MELINE Enthusiast

Hello...

You didn't tell us when he is going to have his scope...if it is scheduled for the next week for example, then I guess he will not have a problem. There is an article (unfortunately I am not at home and I can't send it to you) that says that the villy needs something like 3 months to look healed in the scope. Of course that depends on the damage that is already done and on the person's ability to heal. But I really don't think that with something like 10 days of gluten-free diet your son's villy will show no damage. It is too soon to be healed. Maybe you could talk to your doc about it. To tell you the truth I had a biopsy after 5-6 months of gluten-free diet and it showed nothing. I tried to get back on gluten before the biopsy but I only could do it for one day. It was just impossible. Most of us don't depend on the scope and think that the gold standard for celiac diagnosis is the response to the diet. My doc thinks so, too.

Any way I hope your doc will tell you what is best for your son. Good luck.

Ursa Major Collaborator

In reality, a positive blood test and positive diet response are diagnostic, and more and more doctors would give him an official celiac disease diagnosis right there.

You are right in not wanting him to eat the food that makes him ill again. If he was my kid, I'd skip the scope. But you will have to make that decision.

If your doctor will diagnose him without the scope, go for that and forget about the rude GI pediatrician.

MaryJ Newbie

Thank you all so much for your advice. He is 13 years old and he knows what he can and cannot eat so trying to get him to eat something that is going to hurt him is hard. He told me that I have no idea how bad he felt and he finally is feeling better. All I have been doing is crying and trying to figure out how to help him live his life so he can feel better. Could anyone tell me what I ingredients I need to look for in shampoo, toothpaste and other items so I don't give him something he shouldn't have. Is there a website that offers this information. Any help would be greatly appreciated. Thanks again to all :)

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. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

    3. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

    4. - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

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

    • Total Members
      133,102
    • Most Online (within 30 mins)
      7,748

    Dawn74
    Newest Member
    Dawn74
    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

    • Jmartes71
      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • 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.