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Kujda

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Kujda Rookie
Kujda
Posted

We are in the final stages of adoption with our son Abraham. Of course because he was in states custody all his health issues have to be worked out and there are definitely some! Received call today that our GI appointment is Aug 3rd. They will neither confirm nor deny that he has celiac or gluten allergy until more tests. He also suffers from seizures and we are going for an EEG in july. SOmetimes I feel as if our lives revolve around doctors appointments. Now they want ot test him for cystic fibrosis and I can't say no because we are mandated by the state that we follow all recomendations or it could put the finalization of our adoption in jeopardy. I know in my heart it is a gluten allergy but of course they need to poke and prod my son for an official diagnosis. He has been gluten free for 3 months and virtually all symptoms stopped except for when he accidentally gets glutened---i am still learning.

Has anyone had any experience with this and can they give a diagnosis based on diet change and results from that? They are talking about putting him back on gluten and doing another set of blood testsand abiopsy. This is going to break my heart. I feel like people don't believe me or think I am making it up. Besides everyone here I have never met anyone who understands what my family is going through.

Thanks for all the info and support! This has been and continues to be a WILD RIDE!!!!

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Guhlia Rising Star
Guhlia
Posted

Celiac Disease can cause seizures. It can also cause CF type symptoms: persistent diarrhea, bulky, foul smelling and greasy stools, pale stools, poor growth, abdominal swelling, gassiness, vomiting, dehydration, frequent respiratory infections, abdominal pain and discomfort, poor appetite, and malnutrition. I'm sure there are other symptoms that I'm missing. It's actually probably a good thing they're taking CF into account. Better that it be ruled out now, rather than a big surprise later. I hope that doesn't sound like I'm not being supportive. I just think I'd rather know up front about those things. Plus, the sweat test is a relatively easy test. No where near as invasive as the biopsy for Celiac. :) We all know how fun that is.

Have his seizures stopped since going on the gluten free diet? If so, perhaps you can point that out to the doctors. You may also want to take in some literature on Celiac and seizures. Some doctors just never get it. Are you allowed to choose what doctor you take him to? If so, I would research doctors in your area and surrounding areas to try to find one that specializes in Celiac.

I hope things go quickly for you and Abraham. Good luck!

rinne Apprentice
rinne
Posted

Sorry I can't be of any help, I just wanted to wish you and your family well. :)

Kujda Rookie
Kujda
Posted
  • Author
Celiac Disease can cause seizures. It can also cause CF type symptoms: persistent diarrhea, bulky, foul smelling and greasy stools, pale stools, poor growth, abdominal swelling, gassiness, vomiting, dehydration, frequent respiratory infections, abdominal pain and discomfort, poor appetite, and malnutrition. I'm sure there are other symptoms that I'm missing. It's actually probably a good thing they're taking CF into account. Better that it be ruled out now, rather than a big surprise later. I hope that doesn't sound like I'm not being supportive. I just think I'd rather know up front about those things. Plus, the sweat test is a relatively easy test. No where near as invasive as the biopsy for Celiac. :) We all know how fun that is.

Have his seizures stopped since going on the gluten free diet? If so, perhaps you can point that out to the doctors. You may also want to take in some literature on Celiac and seizures. Some doctors just never get it. Are you allowed to choose what doctor you take him to? If so, I would research doctors in your area and surrounding areas to try to find one that specializes in Celiac.

I hope things go quickly for you and Abraham. Good luck!

Thanks! We do not get to pick our doctor. Our peds has to refer us. We are going to see a GI at Vanderbilt- Dr Martinez. Of course if you know of anyone that specializes in this disease I would love a name and see if we could get a referral to them. Thanks so much and I would be lost without everyone here!

Kristin

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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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