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Blood Sugar Issues


October3

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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?


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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.


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      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
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    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
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