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Not Celiac Or Even Gluten Intolerance

stanleymonkey

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stanleymonkey Explorer
stanleymonkey
Posted

we were referred by our gastro to gastro clinic at our local kid hospital (daughters history on earlier posts) he wanted new doc to scope to see what is going on inside

we were given a diagnosis by new doc of intermittent diarrhea , told to give Zantac for reflux, no follow up, no directions on meds, told to buy it over the counter, try giving a 2 yr old a tablet! He says she probably has nerve damage from a virus, this kid has been sick 3 times her whole life (flu, tummy bug, group all AFTER the tummy troubles started) and nothing else we done as all blood work is perfect

so frustrated and unsure of what to do, meanwhile the big d continues and she is being thrown out of preschool as she can't stay awake

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mommida Enthusiast
mommida
Posted

I haven't found your other posts as the background for this post.

"Possibly some nerve damage"? I think this doctor needs to explain that statment. You sound like that doesn't make sense to you either. Does this mean that there is evidence your little ones system isn't working?

Falling asleep at school? Was her iron level checked? Are there any other signs of low iron? Like PICA (the craving of non food items) This can also be a child chewing food but spitting it out instead of swallowing it.

Your options are going back to the same doctor. You will have to be more forcefull and ask specific questions. Ask the doctor to fully explain any findings and ask for specifics of what to do next.

Or find another doctor. Bring all of your child's records so no tests will have to be repeated. (You should always ask for a copy because doctors forget to mention way too much.*)

If you start a gluten free diet, you will not be able to test for Celiac. You can get the genetic test, but just because a person has the genes it does not mean they have Celiac. Many doctors will blow you off and say you don't have a diagnoses.

It is a horrible position to be in as a parent. You still have to find a doctor that can at least listen to you for your child's care and well being. The doctor will have to be supportive of the gluten free diet, especially when prescribing medications.

*Just double checked my daughter's most recent scope report. She was diagnosed with Eosinophilic Esophagitus again. The ped. gastro. made no mention of the stomach biopsy result "moderate chronic inactive gastritus". I guess her stomach still is having damage done to it that 7 years gluten free and 3 years of gluten, egg, fish, shellfish, and peas free diet hasn't kept her free of. Negative test result for H. Ployri. Facts I should have been told, but I guess the doc forgot to mention.

beebs Enthusiast
beebs
Posted

When they did the bloods did they check for deficiencies? I had lots of trouble getting anyone to take my little one seriously - had a Paed tell me there was nothing wrong when he was so iron deficient he couldn't breathe and developed a heart murmur. I then started researching and found the best Paed GI who knew heaps about Celiac. And lucky for me he was good, he even went as far- in the beginning- to say he thought there was nothing wrong, but that we would see what unfolds - a year later he told me I was right! So - if you are sure there is something wrong, keep a symptom diary for her and start looking for the best paed GI where you are. One that will listen to you and not just fob you off.

mushroom Proficient
mushroom
Posted

I can't believe that they just blew you off like that. There is obviously a problem and you need to keep seeking until you find someone who can discover what it is, or at least help you with managing her in the meantime.

Do get a copy of all her records, and maybe call your local celiac society for a recommendation of a pediatric GI who specializes in celiac.

beebs Enthusiast
beebs
Posted

Yeah- even if it isn't gluten related there is obviously something going on there. They always try and pass the buck with the ole "Toddler diarreha" call. So irritating!

GottaSki Mentor
GottaSki
Posted

The doctors you have been in contact with may be done...but you can find the solution. Time to network, here...Celiac Foundation....UOC -- University of Chicago has some excellent resources as do other teaching hospitals -- holistic, etc. Hang in there...the fight seems overwhelming and unfair...but well worth it if you can improve your child's health and quality of life. I didn't read the history but my kids and grands have all been misdx'd with one thing or another...including asthma, gerd (asparating acid during the night to cause endless smoker's cough), IBS, mental problems, worms, etc, etc, etc....that were ALL food based issues.

AVR1962 Collaborator
AVR1962
Posted

I have 4 grandkids, all on gluten-free diets. None have been doagnosed with celiac and none have gone thru all the testing like your little guy. You have to do what is best for his health and by the sounds of it he needs to try a gluten-free diet. THere may be some deficiencies going on if there was mention of nerve damage. If labs were done I would ask for a copy. If not, make sure he goods a good multi and his diet has enough vit D, calcium, magnesium, potassium, iron, B12, and c.

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stanleymonkey Explorer
stanleymonkey
Posted
  • Author

she has pica but all her test were okay

they checked all her enzymes thyroidd even re did her cystic fibrosis test

we have gone gluten free day 1 done, but the Proctor was insistent Most books tests and the fact her weight is finally back to where it was a year ago means nothing is wrong besides maybe some nerve damage I feel like giving him some never damage

stanleymonkey Explorer
stanleymonkey
Posted
  • Author

think my previous posts were in pre diagnosis ...... Oops

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

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • 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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