I don’t have any of the digestion issues which are apparently common with coeliac, however, if no antibodies are being found how would they ever find out? I was thinking about ringing up the gp in regards to allergy testing do you think gluten can be tested for? Thanks!
There’s something called silent coeliac which is coeliac without the abdominal symptoms. That’s more common in Type 1s, I think. If you’ve been tested for coeliac and it’s been ruled out and done properly, you don’t have coeliac disease.
There’s also non-coeliac gluten sensitivity - that is a sensitivity to gluten in someone without coeliac. There’s also a sensitivity to wheat (wheat itself not the gluten). I think that’s what Andbreathe was talking about. There are also many more food sensitivities.
Amity had a really good idea above - eat what you ate when you took the Humalog and had your reaction BUT eat a small portion WITHOUT any insulin. That would show if it was the food. Eat it, wait for an hour or whatever to see if you have your reaction, then take your insulin to get your blood sugar down.
To be honest, I wasn't being specific in terms the variant of food intolerance/sensitivity that might be in play here, although gluten is way more common that we often consider (until we talk to others about it).
I had no apparent gut issues before going GF. I went GF as a result of seeing an Endo about something else. When he did mine and my family's medical history he asked which of the autoimmune conditions I had reeled off I had. My answer was none.
Having scoffed at my response I left his consulting room with a list of about 40 (literally) blood tests to be done, covering all manner of nasties, but his bets were on coeliac and Hashimoto's Disease, with a potential for Rhuematoid Arthritis thrown in for (not so) good measure.
Nope. Not me!
It had been agreed I would not likely test Coeliac positive because I was already eating a low carb lifestyle, and he did not recommend I carbed up prior to the test. I declined a diagnostic colonoscopy as I felt there was nothing amiss in that region. (A colonoscopy is the secondary Coeliac diagnostic tool.)
The Endo did however suggest I adopt a gluten-free lifestyle as "people with AI conditions do well on it". I have no AI, but he seemed certain, so I gave it a whirl. I was warned that the trial should be 6 months of strict adherence.
Some months into that trial I inadvertently ate gluten and got the symptoms described. Clearly, my body had been fighting the intolerance for a while and had relaxed its defences when I was eating none. Just for completeness, I still don't think I have coeliac disease, but my body sure as heck can't handle gluten well at all.
Please don't reject the potential for food intolerances, bearing in mind your symptoms do relate to eating. I'm certainly not suggesting you stop trying to try other insulins, but asking that you keep a really open mind.
In your shoes, I'd continue requesting other insulins, and if/when challenged, ask the medic to explain why they are declining, then do your own reading to understand if it's a reasonable challenge, and if so, that allows you to move onto another insulin, or another tack.
Bearing in mind how long it takes us to rib our systems of gluten, I would go back to living gluten free, and pledge to give it 3 months absolute, absolute minimum. Unfortunately, unlike many intolerances, such as lactose, reducing, or cutting down isn't enough. It has to be strictly zero.
Whilst I am usually a strong advocate of making one change at a time, bearing in mind the length of the gluten-free trial, I would accept looking at both potentials together.
Finally, if you are not already, I would suggest you keep a very, very details food and drink diary. That would include what you eat at every meal - absolutely everything, how much insulin you used to deal with it, when you injected (pre-bolus, split bolus or whatever), what your blood glucose looked like before eating/injecting, and after eating. Additionally, how you felt afterwards. If you feel bad afterwards, note how long after eating and score how bad you feel on a 0-10. 0 being no issues or symptoms to 10 being being bedbound, seeking medical assistance.
Using that, you may see some trends emerging. It is a total pain to be working at that level of granularity, but you will build up a lot of data which may not at first inform you of anything, but could be the key to all of this.
Sometimes when we
know what's wrong it's hard to open our minds to other options, but sometimes we have to change course a bit, when we are travelling down repeated dead-end alleyways.
I do hope you get to the bottom of it all.
