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I keep getting sick

Annilee

By Annilee
in Super Sensitive People

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Annilee Newbie
Annilee
Posted

Hey so I’m somewhat newly diagnosed with celiacs. I am having a hard time navigating and managing everything right now and was looking for some advice. My sensitivity to gluten has increased by a lot since being diagnosed (I’m not sure if that’s common) but it feels like there are very few things that don’t make me sick. However, I am now suffering from malnutrition, as well as pancreatic insufficiency, anemia, and leaky gut syndrome as complications to having celiacs disease. I’m losing weight rapidly as well. I do share a household with people who keep gluten in their diets,  so I am really careful to separate everything. I have different kitchen ware and appliances, as well as separate cupboards for my food to avoid contamination. I never eat out, and prepare meal plans. But it feels like no matter how many precautions I take, I am still getting sick. I know that’s somewhat to be expected from having any autoimmune/chronic illness. But I’m just running out of options on what to eat without getting sick. I’ve spoken with my  GI specialist about this, and we’ve been trying to figure out if there are other underlying factors that might be making me so sick. But I thought maybe I’d try and get some input from people who actually struggle with this disease. Is this common? Is there advice or suggestions on what I could be doing better? 

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trents Grand Master
trents
Posted

Welcome to the forum, Annilee!

Are you still eating oats or dairy? These are common "cross reactors" whose proteins (oats-avenin, dairy-casein) have structures very similar to gluten and blunt SB villi like gluten does for some celiacs. Intolerance of eggs is also fairly common in the celaic community. Also, some meds cause villi blunting as well. What meds are you on?

You might also want to investigate something called histamine intolerance/mast cell activation syndrome (MCAS) and SIBO (small intestine bacterial overgrowth. These are all common secondary medical problems that often accompany celiac disease.

cristiana Veteran
cristiana
Posted

Hi Annilee

Welcome!  

I agree with the above advice from trents.

@trents - do you think Fasano's diet might help here?  I am not on the forum as much as I used to be so I may have missed it, but I haven't noticed it mentioned recently.  It used to be suggested a lot when I was first diagnosed?

 

trents Grand Master
trents
Posted
3 hours ago, cristiana said:

Hi Annilee

Welcome!  

I agree with the above advice from trents.

@trents - do you think Fasano's diet might help here?  I am not on the forum as much as I used to be so I may have missed it, but I haven't noticed it mentioned recently.  It used to be suggested a lot when I was first diagnosed?

 

I think it's certainly worth a try but I wouldn't rule out a temporary regimen of steroids to calm the immune system down in conjunction with the Fasano diet.

cristiana Veteran
cristiana
Posted

Thanks, @trents.

Annilee - do have a good look at the information about the Fasano diet, by following the link above.

It could help you, it has certainly helped a lot of people on this forum in the past.

Take care,

Cristiana

Scott Adams Grand Master
Scott Adams
Posted

Definitely follow up with your doctor about your symptom as well, as there could also be something else going on. Just to make sure you are 100% gluten-free this article may also be helpful:

 

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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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