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Endoscopy/Colonoscopy needed?

lolabelle

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lolabelle Newbie
lolabelle
Posted

Hi, I posted a few weeks ago that my daughter who is 4 was just tested for Celiac. Her results were positive but the doctor would like to have an endoscopy and colonoscopy because she has blood in her stool and her SED RATE and Fecal Calprotectin  were elevated. Thinking she may have Crohns or IBD. The scopes make me nervous and hate to put her through anything unnecessary. Has anyone who has been through a similar situation offer any advice? Thanks so much!

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StephanieL Enthusiast
StephanieL
Posted

Being young, it would be best to get a baseline and 100% confirmations on the Celiac diagnosis for many reasons.  I would do the endoscope/colonoscopy. The prep will be difficult and not fun but the procedure itself will be harder for you than her!  I promise you that. It sucks for parents.  My kid was 3.5 for his and he remembers none of it. I remember every minute and he doesn't at all!  He also had a brain MRI last year (he was 7) and it was ugly to get him under, again he remembers none of it thank goodness!  

Hugs.  None of us want to have anything done to our babies needlessly!  Not all parenting is rainbows but no one tells you that before you have these little people!  

Jenny Apprentice
Jenny
Posted

My daughter was five when she was diagnosed through a biopsy.  The week before the prep, I talked up the fact that on the prep day, she could only have lots of sugary things--soda,jello, popsicles.  She helped pick out all of her prep 'goodies' and we rented a couple movies for the big day.  On prep, the entire family fasted to support her (even her three-year-old little sister).  By the way, I couldn't believe how much more time I had when I didn't have to spend time cooking, eating, or cleaning dishes!  Prep and procedure was much easier than I anticipated.

Looking back, I am so thankful her celiac was biospy confirmed.  It is serious disease and requires extreme vigilance for gluten-free diet.  The positive biopsy took any fragment of doubt away.  Good luck!

southpaw13 Newbie
southpaw13
Posted

My daughter is 7, and got scoped earlier this year. She only did upper, so there wasn't the same prep. I was more nervous than she was, and she has no bad memories of the procedure. Her celiac bx was positive, and I am very glad that we went ahead and did the scope to give us 100% confidence. In hindsight, I definitely do not consider getting my daughter scoped unnecessary (which I may have wondered about a little bit beforehand).

  • 3 weeks later...
Indigosue Newbie
Indigosue
Posted

Hi! I, too, debated whether to scope by 6 year-old daughter when her blood work came back indicating Celiac Disease. I talked to the Dr. at length about it and decided to go forward with it for two main reasons: It is a life altering diagnosis and we wanted to be 100% sure that a gluten-free diet was what we had to commit to and we also did want to have a baseline since we were fairly confident she had Celiac. She only had an upper biopsy but it really was an easy procedure. She worried about it but afterwards got over it extremely quickly. Best of luck to you.

 

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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