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

Blood Sugar Issues


October3

Recommended Posts

October3 Explorer

We're starting almost from the begining with my son (6) who (sorry to be redundant but I don't post real often so I feel like I should give our story for thost who don't know) has moderately elevated tTG, negative biopsy (totally normal - no indication of anything despite many biopsies), and no significant change on an 8 week gluten-free diet. He has no GI symptoms but some indication of malabsorption which could be celiac disease or could be any number of other things (discolored teeth, recurrent mild anemia which is correctable with supplements). AND he seems to have a propensity toward blood sugar swings. If he hasn't eaten in awhile he has major meltdowns and he craves sweets.

I've been doing a lot of reading and am interested in this connection between diabetes and celiac disease, and in Open Original Shared Link article which discusses how "potential" celiacs show a similar metabolic profile to untreated celiacs including impaired glycolysis.

So I'm curious to learn more about this. I would really like to hear from people who have noticed a difference in the way their bodies digest sugar on gluten vs. off gluten. If there was a change how long did it take on a gluten-free diet before things improved and is there anyone else out there who had this as practically their only symptom?


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



Celiac.com Sponsor (A8-M):



RollingAlong Explorer

My spouse went to the doctor for erectile dysfunction and the checkup showed his blood sugar was a little off. He did not seem to have any risk factors for diabetes or ED. He's always been slim, could eat whatever and how much he liked (and did!) but ate a good diet, (brown rice, whole grains, etc) no soda, plenty of exercise. He started a low carb diet to control his blood sugar while he awaited test results for T1 (insulin dependent) diabetes. They decided to test him for this because his sister has ulcerative colitis, which is considered to be autoimmune.

We accidentally went gluten free and his blood sugar imemdiately went into the normal range (mid-80's). He also lost some weight, and then we noticed that he seemed to have some odd "love handles", on his back, up above his waist. The GI doc later said he thought that was inflammation and they seem to come back when he makes a gluten mistake.

The low carb diet was very, very strict and a huge change from how he had been eating. Whenever anyone asked him about the diet, he always said, "I feel better." But he hadn't complained of feeling bad before.

After a few weeks of the low carb diet, I finally found the brand of fiber cracker that was allowed on the low carb diet. He was still eating very low carb, but he stopped saying he felt better, that's for sure. His blood sugar levels started to rise, he had a nervous stomach, started sleeping poorly, etc. It took us awhile to figure out, but I'm sure it obvious to everyone here - we had added gluten back in. Because his stomach was nervous in the morning before he had even eater, I didn't figure it out for awhile until I read that canker sores were linked to gluten. He hadn't had one since before the diet change, despite some major stress.

Long story short, his diabetes tests were negative, and after a 3 month gluten challenge (which was miserable!) all blood tests for celiac were negative. His initial biopsy results were "suggestive" but the pathology was negative. Dietary response - excellent. His blood sugar is fine, the ED is gone, along with mood improvements, all sorts of things we didn't even realize were symptoms are gone. Joint pain, canker sores, better, more refreshing sleep, thicker beard; I have long list.

We also determined that he is very intolerant of casein, the protein in dairy. He was intolerant of eggs for about a year. He was intolerant of soy also; we have not tested to see if that has gone away. He is very sensitive to gluten; there are lots of products that he does not tolerate that people here seem to handle just fine.

I suggest getting off casein while you do further research. FWIW, my husband experienced severe "withdrawals" during the first week of no dairy.

Thanks for the link to the article, that was very interesting.

You may be able to find other people with similar experiences on the Bernstein Diabetes Forum. There are pre-diabetics and non-diabetics there as well and plenty of people with various food intolerances. I know there are people there who report BG issues that resolved when they eliminated casein and it took about a week. Open Original Shared Link

Another possibility to consider is the Failsafe diet. They also report blood sugar issues with food chemical intolerance. The main food chemicals are amines and salicylates, and some people need to avoid certain additives. Open Original Shared Link

Very best wishes to you and your family; please keep us posted.

October3 Explorer

Thanks for sharing your story. I always learn something when I hear what others have been through. Its interesting you mention having a nervous stomach early in the morning before he even ate. My son says he often wakes up with a stomach ache or feels like he's going to throw up first thing in the morning. He is often hypoglycemic acting first thing in the morning making us think he's hungry but he never eats much until later in the day. We never knew why until he recently mentioned how he feels in the mornings. But since I wasn't aware of that before we did the gluten-free trial I wasn't tracking its frequency on and off gluten.

Thanks for the links too. I have also wondered whether food additives are an issue. He does seem to crash hard on days where he has eaten a lot of junk.

RollingAlong Explorer

There's a good Failsafe group on Yahoo that focuses more on the diet in the US. Many of the internet resources are based in Australia.

October3 Explorer

Thanks. I'll check in to it.

Another question to throw out there for anyone who has had hypoglycemic symptoms. Have you checked your blood sugar and has it tested low, or have you been symptomatic but sugar levels test in a normal range? I'm considering getting a home monitor and checking my son when he has melt downs but don't want to do it and have it not give us any useful info.

cait Apprentice

I always thought I was hypoglycemic and would have major crashes where I got super shaky and miserable. I tried increasing protein in a bunch of different ways and still often would just bottom out at some point. That has definitely improved since switching to gluten-free. I've only been gluten-free for about 6 weeks, and keep getting CCed, so it's kind of soon to give any definitive answer from my experience, but I really do think that the two are related. If your body isn't processing things properly, of course your blood sugar will be out of whack, right? I never actually measured my blood sugar levels during crashes, but I'm pretty sure that's what was going on.

If he didn't improve much in 8 weeks, you may want to look at whether there are any sneaky sources of gluten that could be keeping him symptomatic. I felt a big difference when I finally weaned off of a med that had trace amounts of gluten in it. I was assured by a doctor that it couldn't be affecting me, but it was. My household is not totally gluten-free, though we're moving in that direction, so I keep having accidental gluten encounters. I can definitely feel a difference when I've been able to be totally clear of gluten for more than a few days at a time.

I hope you're able to find some answers.

Jenniferxgfx Contributor

I had problems in my teens with blood sugar swings. I did get a glucose monitor and found my sugar did indeed drop dangerlously low often. I adopted a high protein and fiber low fat vegetarian diet, and felt much better. I still had blood sugar swings but they were controlled by diet and my A1c was normal (I have diabetes in my family, both types) so I didn't think much of it... However, I'm in my 30s now, and feel awful in tons of other ways, and have happened upon this gluten intolerance discovery. I do think gluten is linked now. Gluten and its antibodies we make can reach any part of our bodies, so no reaction surprises me any more.


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



Celiac.com Sponsor (A8-M):



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
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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.