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My Daughter's Scope Was This Morning

Momto2girls

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Momto2girls Rookie
Momto2girls
Posted

Ha, ha! I hate waiting -- I am SO impatient!! So the GI who did the scope wasn't our GI -- he was a doctor from the same group. So he didn't say anything except everything looked OK ad now we just have to wait on biopsy results. I am wondering how many of your kids looked normal but then the biopsy turned up positive? Or how that happened? My DD is 4.

Also, how long did it take to get your results?

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natalie22 Newbie
natalie22
Posted

Hi. Our daughter had her scope six years ago. She was 6.5 years old at the time. We also got a report that everything looks ok at the end of the scope, but they told us immediately that it doesn't mean a lot and that we'll have to wait for the formal results. These came back after two or three weeks and were very positive for Celiac. Combined with the high blood tests there was no question about her diagnosis. She has been following a gluten free diet ever since and feeling great.

Lots of health to all your family. Don't forget to have everyone in the family tested if she comes out positive

Natalie

melaniesilvers Rookie
melaniesilvers
Posted

My son is almost 4 yrs. We had the scope done on Tuesday and got Celiac results that Friday. We are still waiting on Lactose and Sucrose tests and were told we would get those in one week from scope (tomorrow). Good luck waiting.

Mom2J112903 Newbie
Mom2J112903
Posted

We have *always* heard something as soon as the GI comes out of the OR. It takes sometimes 2wks for the results to come back from pathology.

mom2 Newbie
mom2
Posted

The GI who did my almost-4 y/o daughter's scope also said everything "looked normal" during the scope, but the biopsy confirmed she was positive for Celiac (she also had a pretty high positive blood result). We were told to call in 2 weeks for the biopsy results, which is how long we had to wait. I'm sure they had the results earlier, but I decided to wait the full 2 weeks to call as instructed. That was a long 2 weeks. We've been gluten-free since we found out at the beginning of May. It's been a little challenging so far, but I'm learning a lot. Try to keep busy until you get the results. I composed a list of about 10 questions I was planning to ask the GI if the biopsy came back negative. I just wanted to make sure I was prepared for that (sometimes it's hard to remember what you want to ask, so it's good to have things written down). Hope the wait isn't too long for you...

MitziG Enthusiast
MitziG
Posted

My daughters scope looked perfect doc said- biopsy showed definite celiac. Sons endoscopy looked normal- except for the fact that the food he had eaten 24 hrs before was still sitting there. Biopsy was celiac. My intestines were trashed to the naked eye, dr dx celiac on the spot, biopsy confirmed. Interestingly, my antibodies were only "weak positive"- both kids had very high antibodies. Go figure.

sa1937 Community Regular
sa1937
Posted

Once the biopsy is done, there's really no reason to wait to go gluten-free. Whatever the test results are, it will not affect any other type of testing your GI or PCP might want to do. You might notice improvements in your child long before you have the follow-up appointment and pathology report in your hands.

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Momto2girls Rookie
Momto2girls
Posted
  • Author

Thanks SO much everyone!! Her blood work was actually negative. But, they didn't do the full celiac panel -- they only tested for a few things -- and it was "barely" negative (if that's possible?) -- meaning it was just within the normal range. But, they are looking for everything -- EoE, Celiac, Crohn's, etc. And they said that we should trial milk-free first -- for two weeks, to see if that seems to help at all. And then we'll see about the rest? I really haven't the foggiest what the answer will be (if anything).

I am wondering though if the biopsy would show gluten intolerance and not just Celiac?

We are trying to stay busy but I just want to know already! Ugh. It has only been 24 hours! This is not good -- ha, ha! :)

1974girl Enthusiast
1974girl
Posted

My daughters scope looked normal, too but came back "simplification". That is the start of blunting. You don't go from having great villi to none overnight yet some doctors will not say celiacs until total villi destruction. Not my GI. He said to start gluten free immediately that she had celiac. But she also had positive genes, positive blood, etc. I have heard that a milk allergy can cause blunting, too. So much that they can't tell what caused it. So if your daughter has neg. blood, it might really be a milk allergy.

Momto2girls Rookie
Momto2girls
Posted
  • Author

It just makes me a little nutty -- like if it were just one thing they were testing for I could sort of sit still and wait but since it is a million things I am totally losing it and need to know!! But I just have to be patient. I am horrible at this. Have I mentioned that!?

We haven't had the test for the gene, nor have we even had the full blood panel, so it is hard to know for sure. I do feel like it is likely food related...she has other severe food allergies -- tree nuts and egg -- and is very intolerant of artificial dyes and I just think if it were anything it would be that?

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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