Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Heath Stuffs


VydorScope

Recommended Posts

VydorScope Proficient

I wanted to write this up in hopes of saving someone else the suffering I went through. When I first joined this forum it was for my son who we learned had celiac disease. But over time I was myself getting sicker and sicker. This is my story of the road to dx and finally beginning recovery:

My major symptoms were uncontrollable shakes, vomiting, nausea, light headedness, blacking out, ever decreasing energy and steady weight gain regardless of how hard I pushed my self during work outs. Over time not only did all the symptoms get worse, but the got worse faster and faster. Add to that a general feel of unwellness that continued to get worse, and you get a broad idea.

I have been poked, prodded, tested, had things stuck in places that should never have things stuck in them, gallons (it is seems) of blood drawn, nuclear studies, and so on. I have been tested for anything (including celiac disease) that might remotely fit those symptoms with no success.

One incident in specific did really give me a clue. Well it happened more then once, but it was the same every time. I would get the shakes, and while I did not black out it was like I was running on pure auto pilot. I would with out thinking (or remembering it later) rush to the pantry, grab the canister of Sunmaid Raisons and start eating. After I had gotten through about 1/3rd of a canister I would be back in control and the shakes would stop.

Eventually I bought a glucose meter and discovered something somewhat scary. My blood sugar was completely out of control. And for those that do not know, out of control blood sugar can kill you if its bad enough and mine was getting there.

Well the doctors called it hypoglycemia and sent me packing with a useless hand out that said basically


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



blueeyedmanda Community Regular

Wow, I am glad you were able to find this out. It really is an eye-opener. I hope it does help some people who are also suffering and really do not know what direction to go in.

bluejeangirl Contributor

Vincent, I'm so glad you found out how to eat. I was abit worried for you at one point when you said you where eating the high glycemic fruits like bananas and something else that I thought was alittle to high in sugar. I know I eat more fat and protein then most people but it's what makes me feel good. The trouble is I don't always feel hungry when I get hungry and then it's too late. So I just stick to scheduled meals usually every three to four hrs. and eat something before I go to bed. I hope you can stave off the diabeties diagnoses for a good long time.

Thanks for the post I'm sure it'll help people.

Gail

Nancym Enthusiast

Hey! Glad to hear you're figuring this out. I just bought a glucose meter too. I had some really low readings like 58. But they might have been mistakes, although I might have fasting hypoglycemia. You probably had reactive hypoglycemia, I'm guessing. Anyway, I don't think mine is too severe, I just get very, very sleepy without the shakes.

I find when I eat like you do, lots of fat/fiber, followed by protein, and finally followed by a few carbs, I feel pretty darned good!

VydorScope Proficient
Hey! Glad to hear you're figuring this out. I just bought a glucose meter too. I had some really low readings like 58. But they might have been mistakes, although I might have fasting hypoglycemia. You probably had reactive hypoglycemia, I'm guessing. Anyway, I don't think mine is too severe, I just get very, very sleepy without the shakes.

I find when I eat like you do, lots of fat/fiber, followed by protein, and finally followed by a few carbs, I feel pretty darned good!

Nancy, try this test....

First you need to fast for at least 8 hours. It easiest to do this while you sleep. :)

Next test your blood. A normal reading at this point is 70-110. (if you reading is OVER 115 or 120, stop the test and get an appointment with an endocritologist or how ever its spelled to get the Oral Glucose Tolerance test asap)

Next eat a meal that is sugary, but not something out of hand for a normal person. Bowel of cereal and glass of juice would work fine. Note the time you START the meal.

Once you have eaten , do not eat or drink again till your done with this test, else you will have to start over. Test your blood every hour for the next 4 or so hours

At 1 hour your reading should be the highest, do not worry about this number. Anything less then say 140 or 150 would be reasonable. The numbers you get in hours 2 and 3 will likely be above 100, but less then 140. If you ever get a REALLY high reading like 190 or 200, you need to stop the test and see a doc like I mentioned after your fasting score. DO THIS ASAP if not sooner.

At hour 4 if your score is ABOVE 80, retest in 30 mins. If it still is about 80 , try one more test in another 30 mins.

If you score EVER falls below 70 during this test STOP THE TEST AND EAT, you have hypoglycemia.

If you do, you like me need to be VERY VERY careful with your diet. You might not be as bad as me YET but this is a issue that gets worse with time, and will eventually lead to diabetes. You do not want that. There is plenty of indication in the medical journals that proper diet and exercise will help prevent that.

IF you are hypo, keep that meter handy you will use it for two things....

First once or twice a month check your fasting blood sugar. That is an indication of how well you are doing in your diet. If the number is stable (ie not changing much, some variation is normal) in the 70-110 range, it is one indication you are doing fine. If it is climbing, then you need to revisit your diet choices.

Also use it to track how you body reacts to various foods you eat until you get good at knowing what works. After a while you will not need to do this anymore because you will have your diet worked out, and you will get good at knowing what your blood sugar is doing based on how you feel.

If you are hypo you need a diet based on GOOD fats (ie from plants and animals, not from labs). This summary from a very long article is a good place to start with understanding good fat. (ie margin is bad fat, butter is good)

In summary, our choice of fats and oils is one of extreme importance. Most people, especially infants and growing children, benefit from more fat in the diet rather than less. But the fats we eat must be chosen with care. Avoid all processed foods containing newfangled hydrogenated fats and polyunsaturated oils. Instead, use traditional vegetable oils like extra virgin olive oil and small amounts of unrefined flax seed oil. Acquaint yourself with the merits of coconut oil for baking and with animal fats for occasional frying. Eat egg yolks and other animal fats with the proteins to which they are attached. And, finally, use as much good quality butter as you like, with the happy assurance that it is a wholesome

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      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
      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
      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
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.