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S-EBarr Rookie
S-EBarr
Posted

I could use some advice. I was "partly diagnosed" with celiac disease. I say partly because my biopsy came back saying that I have the blunted vili but no other symptoms. I have been on the diet for almost a month and have seen no changes. I am in constant pain and can't leave the house for more than an hour at a time (nature calls).

The doctors are running a lot of tests and I do trust them to come up with a diagnosis, but i'm getting really frustrated and I'm sooooo sick and tired of being sick and tired.

Could use some advice or just someone to talk to! :unsure:

Beth

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gf4life Enthusiast
gf4life
Posted

Hi Beth, Welcome to the board.

You could just be taking a while to heal, or you could be getting a fair bit of gluten in accidently. If you post a sample of what you usually eat maybe we could try to pin down any culprits. You wouldn't believe all the things they put gluten in! If we don't find any foods (or medications) in your daily diet, then it could be an additional illness or just delays in the healing process and relief of symptoms. Some people do take months and even years before getting real relief.

You say you only had blunted villi, but no other symptoms. I would say your "nature calls" are a symptom. Did you have this problem before going gluten-free? Also there are over 250 known symptoms and related diseases to Celiac, so maybe you had some and didn't realise they were related. But I wouldn't say that you are "partly diagnosed". You had a positive biopsy. This is undisputable evidence that something is damaging your intestines. Do the doctors think it is gluten doing the damage or something else? If it isn't gluten what do they think it would be??

And another question, are you still consuming dairy products?? If your villi are blunted, then you will not be able to digest any dairy, since the tip of the villi is where the enzymes to digest lactose (milk sugar) are located. If you don't have the tips back yet, then the dairy will give you problems. You may need to give up dairy for at least a few weeks, possibly a few months.

Looking forward to seeing your food "diary".

God bless,

Mariann :)

S-EBarr Rookie
S-EBarr
Posted
  • Author

The thing is I have no problems ingesting dairy products. I have tried going without dairy products before and trust me that's not it, I was no different going without dairy than I was eating it. I have always had problems with my "nature calls" as well. For a while the doctors thought I had Crohn's Disease (which may still be an option) or Ulcerative Colitis.

I have been sticking to the diet very strictly I read every single ingredient that I ingest. I usually just stick to chicken, rice, fruit, and veggies ( I am a vegetarian that eats chicken and fish).

I have some more tests that the doctors want me to do one being a test for CF and we really hope that's not it! The only thing that is coming out positive right now is that biopsy, however the pathologists were very hesitant to say that is what I have. They sent the biopsies out to the Military Testing place (don't know the name) and we are now waiting for the results.

I am really frustrated and in a whole heck of a lot of pain. Thank you for writing me back and for just listening to me!

Beth

Laura Apprentice
Laura
Posted

I'm assuming that since you're being careful to read ingredients you've checked out the chicken you're eating -- I know some chicken has broth injected into it or something like that, and the broth could be a culprit.

Other than that, all I can say is I hope you figure it out and feel better soon!

S-EBarr Rookie
S-EBarr
Posted
  • Author

It's fresh chicken not the frozen stuff.

Beth

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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
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      By knitty kitty · Posted

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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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