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Post Diagnosis Healing

gilligan

By gilligan
in Coping with Celiac Disease

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gilligan Enthusiast
gilligan
Posted

I've had it!!  I'll try not to make this too wordy.  In a nutshell, I was diagnosed in Aug. 2013, and immediately went gluten-free.  That was tough bc I was on vacation.  I don't consider my first 3 mos. gluten-free because I was traveling extensively, had surgery for a broken femur and spent a month in a rehab facility.  I did my very best honestly.  It's now six months after dx, and I know the past 3 months I have done everything right.  My entire house is absolutely gluten-free sterile!  The hubs wanted to do this for me.  I'm not getting better, and I'm tired of feeling bad.  I swear I felt better before dx minus a few digestive issues.   I can't gain weight no matter how much I eat, every label is read (only made a mistake once with vegee broth), eat very few processed gluten-free foods, make bone broth, take a probiotic and prescribed vitamins, checked cosmetics (even though I don't have the dermatitis issues).  Oh, and I'm very dairy intolerant so I stay far, far away from that.  It seems as though sugar, caffeine, and raw vegees bother me, so I've been avoiding that!

 

I just talked with my gp's nurse who told me that me B12, calcium, and D3 levels are ok.  I'm still anemic (10.7? - not sure what that number means), but the dr. doesn't want me to take anything yet, and I'll be tested again in a month.  The reason given for not taking anything for anemia is she wants to make sure there are no prolonged red blood cell production problems from the leg break.  This is wordy!  Sorry!  I'm so darned frustrated! 

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nvsmom Community Regular
nvsmom
Posted

:( I'm sorry you are having such a tough go of it. Your one of the unlucky ones who take longer to heal. Some of us can take years to get better... All you can do is hang in there and wait to turn that corner.

 

Best wishes.

moosemalibu Collaborator
moosemalibu
Posted

I was diagnosed in Oct 2013 with biopsy but Aug 2013 was the blood test. I was gluten free after the August test then had to do a gluten challenge. 

 

I had the same issues that you had in regards to not being able to eat dairy, consume caffeine, or eat raw veggies. I think I really saw a turning point this month which is month 6 for me. Hoping you start to see some improvement, too. 

NoGlutenCooties Contributor
NoGlutenCooties
Posted

So sorry you're having such a tough time!  Keep in mind that your body is still healing - both your gut and your leg.  It has a lot of work to do and has to prioritize, healing what it needs for survival first.  Try to eat foods that are easy to digest - raw veggies can be too rough on your insides at first.  Maybe try a Nutribullet?  I'm not a fan of regular juicers because you end up throwing away the fiber - but the Nutribullet helps break down food making it easier to digest and helping you get a wider variety of fruits and veggies - and might be easier on your system while you're healing.  You can throw nuts and other protein sources in there too.  Just an idea...

designerstubble Enthusiast
designerstubble
Posted

I juice my raw veggies, and have smoothies sometimes . Struggled with salads for ages after dx. I also am dairy, corn, caffeine intolerant! Had lots of other intolerances too that slowly disappeared. Sugar used to bother me but I eat dark choc now. And loads of bananas!... If you know you made a few mistakes in the first couple of months then just discount them from healing time! It took me 9-12 months to feel any real difference. And now I can't stop putting on weight it's a real problem.. Seriously! I needed to gain weight also!

Keep with it, continue to eat clean! You'll be ok, I promise! It seems like a long road, but you'll feel better soon! Try juicing, your body will LOVE you for it!

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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.

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      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. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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