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What Will A Gi Doctor Do?

wille25

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wille25 Newbie
wille25
Posted

My son just had his one year well baby and has fallen off the growth charts and now has a trend for a downward spike for the last three appts. We went and had blood work done and his Gliadin AB IgG level is 17. No our ped wants us to go to a GI specialist. Does anyone know what the next step is and what the GI specialist will test for and how invasive the tests are? Anything would be helpful we are kind of at a confused stand still and I haven't been able to get a straight answer. Thank you so much.

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lovegrov Collaborator
lovegrov
Posted

Hard to say as I've always understood that celiac tests at this age are not nearly as accurate. Normally, the next step would be a small bowel biopsy by endoscopy. Not sure with a child who is just 1 though.

richard

cherylk Newbie
cherylk
Posted

willie25, I am new to the board but have done much research over the last month. My understanding is the biopsy is quite invasive and you might not get a clear answer anyway. I personally would listen to what the GI wants and do your research before you say yes. I got my answer from www.enterolab.com. I think I have become their biggest fan. My child has suffered four years now and blood tests were all negative for celiac disease and allergies. The FACT that my child COULD go to the bathroom without days of pain and laxatives when gluten products were removed from her diet, didn't matter to anyone. (nor did the just under 3000.00 in dental bills because her teeth melted away to cavities) Enterolab has a lot of information on tests and biopsys and just keep clicking on the website and go to IntestinalHealth (from enterolab) and read all you can there as well. The team has focused their lives to intestinal health and they are up on the latest. My GI had his head somewhere and would only except the celiac disease diagnosis with a blood test. The stool (which is so easy to do) and gene test were delivered to my door and picked up from my door and there was no hospitals or needles required. My four year old laughed at having to go pooh in a container on the potty. It is pretty scarry with a little one, just get yourself educated and stand up to the doctors if you believe from your research that their information is outdated.

angigz32 Newbie
angigz32
Posted

Well I haven't posted in a long time because my son is sick alot. But I feel every sitution is different and you will just have to see what happens. My son was diagnosed at 17 months. They started out with finding fat in his bowel movement, it was positive for celiac. Than they did the blood test and it was positive for having celiac. Now the small intestine came out negitive for celiac. My son fell off the charts also, he would not eat. Only maybe a couple of bits or a couple of sips. I breast fed him for 17 months. And than the doc put a feeding tube in his nose. Now he has a feeding tube in his stomach. The feeding tube saved his life, food hurt him so he wouldn't eat enough to keep him alive.

We are in the hospital every three months for tests, celiac also comes in two's.

You can check out my son on www.caringbridge.org/co/zack.com

God Bless and Take care

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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.

      By trents · Posted

      Contact them.
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