Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,203
    • Most Online (within 30 mins)
      7,748

    Barbara 1981
    Newest Member
    Barbara 1981
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • trents
      Jason, I have a bone to pick with your terminology. There is "gluten intolerance" which I believe is synonymous with celiac disease and then there is "gluten sensitivity" which comes from Non Celiac Gluten Sensitivity or NCGS for short. It is true, however, that there is still a lot of inconsistency in the use of these terms.
    • Liquid lunch
      I can’t say this will work for everyone but for me the difference is incredible so might be worth trying. I’ve never been diagnosed celiac but via an elimination diet I realised I can’t eat any lectins, gluten soy and oats are particularly problematic. If I eat them I’m in bed for a week, then heavy bleeding and extreme pain for another, followed by a third week of bleeding on and off. My skin was a mess and it snowed when I brushed my hair. Since taking reishi and cordyceps mushroom tincture I can’t believe the difference, I’ve had a lot of help from this site so I want to return the favour. I took the tincture for my guts but the most apparent effect is that I feel like my brain works again, I can’t begin to describe how wonderful it is to be able to achieve basic things, I’ve barely been able to organise getting out of bed for so long, it feels like I haven’t been hit over the head with a mallet for the first time in years. Then I glutened myself, not necessarily gluten as so many things wipe me out but definitely ate something I shouldn’t have, I took a treble dose of the tincture and almost immediately felt much better so continued with the increased dose and three days (not weeks) later was back to feeling great, no bleeding involved. My skin is better than I can remember it ever being, I feel great 😊. I spend £1.50 a day on these but it’s worth every penny, I hope this helps someone else out there reading this. I wish I’d known about them 20 years ago. best wishes everyone 🍄 
    • Scott Adams
      Given your history of a high TTG (167) that decreased to 16 on a gluten-free diet, along with genetic confirmation of celiac disease, it’s likely the negative biopsy is a false negative due to not eating gluten before the endoscopy. Gluten is necessary to trigger the intestinal damage seen in celiac disease, and avoiding it can lead to healing and a normal biopsy despite ongoing immune activity (reflected in your still-elevated TTG). The inflammation observed during the endoscopy (“diffuse moderately erythematous mucosa”) could be residual damage, mild ongoing inflammation, or another condition like peptic duodenitis, but it’s consistent with celiac disease in context. Continued positive blood markers suggest ongoing gluten exposure, possibly from cross-contamination or hidden sources. Strict adherence to a gluten-free diet and follow-up testing are key to managing symptoms and reducing inflammation. Discuss these findings with your doctor to confirm the diagnosis and refine your dietary approach. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Yes, it sounds like great progress, but what was the time frame between the two endoscopies? 
×
×
  • Create New...