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johnojohno

By johnojohno
in Coping with Celiac Disease

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johnojohno Apprentice
johnojohno
Posted

Hey guys. So this is my story

December had an endoscopy after bloods. Stressed/exhausted/memory Loss/concentration lacking. Turns out after only finding out my results in July I do have celiacs. this proven by the biopsy.

Though I was told at the hospital they didnt think I had it

Anywho. Ive begun the gluten free diet. Ive been at it a few weeks. Started going well. However the past 3 days ive woken up with really painful chest and stomach pains, I started to feel better but now it seems to have got worse.

My mood for a few days was higher then it has ever been. I am a generally psoitive guy, but the drops in mood are unreal and the unbeliveable fatique, memory loss, diziness etc. Is it usually an up and down process> Cutting out gluten I mean?

 

Also, the extreme tiredness after eating is knowing me out! ha ha

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Ennis-TX Grand Master
Ennis-TX
Posted

Probably in the withdrawal phase, like a drug addiction withdrawal but with gluten. Keep on going it gets better, there are some supplements to help make it better, and some you will find you might have to start taking. Magnesium, and B-vitamins are common issues among celiacs, and can cause all kinds of fatigue, fog, etc. These become much more noticeable as must gluten free food is non fortified with these nutrients.   It is suggested you eat a whole foods only diet to jump start your healing and to help avoid getting cross contamination. Lactose intolerance is also common, but in some goes away after healing, so we suggest avoiding dairy and oats for the first few months (the enzyme to break down lactose is produced by the tips of the villi in the intestines which are damaged or destoryed by celiac).  Also I take it you cleaned out everything and replaced the pots, pans, utensils, colander, toaster, and threw out the old Tupperware? I might suggest reading over the newbie 101, I will also provide a link of where to find and get gluten free alternatives for some staples.

I do suggest taking Liquid Health Stress & Energy and Nurological support for B-vitamins, it is in a sublingual form you just add to tea, juice, or water and drink it. I take 1 tbsp each 3 times a day to avoid that up and down feeling. Might check with Magnesium and see if your having any issues with it, if so Doctors Best or Natural Vitality Calm is suggested to help with these.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

TexasJen Collaborator
TexasJen
Posted

Usually, it takes more than a couple of weeks for the symptoms to really improve. Often times the GI symptoms will improve in a couple of weeks-months but the neuro symptoms like brain fog, mode issues can take 1-2 years. 

So, this may be a silly question, but you said you had the scope in December, but have only been doing the gluten-free lifestyle for a couple of weeks?  

Also, are you getting plenty of sleep and exercise? Are you eating an otherwise healthy diet (mostly whole foods)? Could you be getting small amounts of gluten hidden in your diet - hence not completely healing?  Lots of reasons to consider.....

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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.

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

      By trents · Posted

      Contact them.
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