Well, we have been led a merry dance with these enzyme products, haven’t we? Suffice to say, I have abandoned recommending vegetable enzymes grown on aspergillus (itself fed with corn usually) as most of you cannot seem to tolerate them. That includes the Houston ones like Trienza, which contain the DPP-IV, sadly. If you are on these and Ok with them, that’s fine for now – finish up what you have – but I am swapping to safer versions if we can find them (see below).
So, what to do when most of us are rubbish at absorbing due to the gluten-induced gut damage? See here for absorption testing, by the way.
Gluten Illness, Malabsorption and Finding the Key
That was, in fact, one of my biggest problems and the overwhelming feeling that my body was just giving up was what ultimately brought me to look at gluten issues other than coeliac disease. I just knew I wasn’t absorbing anything. I couldn’t keep my iron, Vit D3 or magnesium levels up on repeated testing despite strong supplements (which I realised later were part of the problem in that they contain grain as the vast majority do).
I have since seen this issue repeated in numerous patients. I couldn’t be diagnosed with coeliac disease because I had been off gluten for years, having already worked out in my 20s that gluten caused all manner of ills. I think actually I should have been coeliac tested instead of IBS-diagnosed years even before that. And I had been off gluten (very strictly as it made me feel simply awful) but had these absorption problems coming on years later, which, this time, I recognised. If the only problem I had was coeliac disease, yet I had been following the CD treatment – ie. off wheat, barley, oats and rye – for years, what else was going on? I researched gluten illness as I had become aware that each grain was gradually disappearing from my diet as they gave me migraines, chronic fatigue, horrendous brain fog, restless legs, eczema, you name it, it was happening! Perhaps it was them?
That’s when I decided to do the gluten genetic test and make a judgement call on whether I had coeliac disease or non-coeliac gluten sensitivity and what therefore to do with my diet to stop myself falling into ME again, (which was a bit late since I couldn’t get out of bed or off the sofa most days already).
As it turned out, I had genes that would predispose me to both. Lots of people do, but you have to look at the symptom picture of the person and put two and two together to see if the illness has been triggered. I put two and two together and this is what I assume happened to me.
I think I had had gluten sensitivity all my life (by that I mean true gluten sensitivity as there are glutens in all grain – why do we think gliadin should be the only one?), triggered by being 2 months premature, malnourished as a small child and familial trauma, no doubt. Coeliac disease probably developed early from the autoimmunity caused by gluten to the villi (CD is just one of the autoimmune consequences caused by gluten sensitivity, not the ONLY one as is commonly thought) and, as it usually does it seems, the non-coeliac sensitivity worsened in my mid 30s, exacerbated by stress and daily ibuprofen for pain worsening the leaky gut damage much further and causing tons of food sensitivities and, I suspect, adrenal, thyroid, ovarian and pancreatic inflammation or auto-immunity (I daren’t test all of them!). All of those organs have now been supported with – at last – grain free supplements and are improving a year off the grains. I can’t know if this is the pattern, of course, but it seems right to me and fits in with my reading on the subject.
I am angry that much of my suffering could have been avoided had I been diagnosed coeliac when I should have been. Later, no-one I consulted even knew about non-coeliac gluten sensitivity either so part of the reason for setting up this site is to get that knowledge more out there in the hope it doesn’t take years for others to find their possible key.
Digestive Support – You’d Think It’d Be Easy…
So, absorption is absolutely key and was my starting point for the research. We have managed to sort the stomach acid out quite easily but the actual pancreatic enzyme support and bromelain supplementation has been a nightmare.
Carolyn and I have been looking into it as per my previous post and below is her report on what she has discovered so far (with my interjections added in, of course!). It is our opinion only, of course, and Carolyn stresses she is not in league with or recommending anything to anyone, nor can she be held responsible for the accuracy of information given to her by suppliers. As we know that is not often reliable, sadly, and we have to rely on our bodies to tell us whether something is OK or not. And, actually, that’s where those of us with hyper-sensitivity symptoms are at a distinct advantage, not that it feels like that when you have a 4 day migraine or are so starving with blood sugar drops you could eat your own ear wax! At least we know something is wrong. What really worries me is not being able to feel it and continuing to do damage inside. Unsurprisingly, it is very difficult to explain the need for such a strict protocol when someone can’t actually feel it. Then, I rely on the drawings and research from immunologist Vodjani et al. Read here for more on the process of gluten sensitivity.
Funnily enough, we had both come to almost the same conclusions at the same time. Namely, that crushed papaya fruit is likely to be a lot safer than a spray-dried powder as in Bromelain (as has turned out despite Viridian’s assurances to the contrary) and I considered that glandulars such as pancreatin are probably going to be tolerated by most since adrenal and thyroid glandulars are already going in fine in most cases. Carolyn had already started trialling one. See below.
Yes, I have been investigating really quite a number of possible digestive enzyme products in the hopes of finding one that works and doesn’t cause problems. It’s a rather expensive game of trial and error!
The outcome of this so far is that Caricol, distributed by Solgar, appears from all I can gather to be free of gluten, wheat, corn, rice, soya and dairy. Other cereal grains are not clearly quoted in their “free of” list, but it appears that it is only the flavouring element which may in any way be at risk as the other ingredients are given as simply papaya and lemon juice. I have not had any obvious ill effects from using Caricol. [I checked with Solgar and Nutri who both offer Caricol. I am satisfied so far that Solgar’s is TGF, although I can’t check it due to citrus intolerance, but Nutri’s contains corn-derived citric acid instead of the lemon juice which is found in Solgar’s.]
I have also been trialling Dipan-9 from Thorne Research, which is apparently pure, undiluted pancreatin with no fillers. This again does not appear to be causing a problem, although I found it quite strong to start with so have been tipping away half the capsule and gradually building up. This is marketed as being the only product available with pure, undiluted pancreatin, whereas most are apparently diluted with lactose. [This is the pancreatin glandular I mentioned above. Glandulars are made from pig organs usually so not for vegetarians but they do act like a spark plug in my experience and are great if you can tolerate them. Some people can’t because the glandulars come from grain-fed animals, but most, happily, can. There are others not diluted with lactose, I believe, so maybe a bit of marketing hype there. But, Thorne is a good company. I have requested a sample to try and will report back. If you need to split a capsule, you can keep the capsule contents of course rather than throw them away. I will have a go.]
I tried Digest Gold and Glutenease from Enzymedica for a while and their representatives have even sent me the testing results to show gluten is not present even at a level of <2.5ppm and they are also marketed as being corn free. I would say these products significantly helped my digestion, but I seemed to get a flickering eyelid and slight joint pains around the same time, which stopped on stopping taking them. It may well have a sensitivity to something else in the product of course. However, it appears from someone very helpful from another enzyme manufacturer that the testing of aspergillus niger derived products may in some way not be wholly accurate for gluten at this point. I don’t fully understand this, but am now a bit wary of aspergillus-derived enzymes as it seems there is a risk there may still be some traces of the substrate on which it is grown. However, each to their own, and other hyper sensitive coeliacs on the US forum all seem to do fine with Enzymedica products from what I’ve read. [I would agree that this is the issue with most enzymes – they are grown from aspergillus which is itself grown on grain, usually corn. Most TGFs I have come across so far cannot tolerate them at all, hence this post!]
Creon 10,000, an NHS-prescribed product is another one I have tried. Having spoken to the manufacturer, there do not appear to be any grain, dairy or soya based / derived products in these tablets. I have found them ok, although am a bit wary of the many different other chemicals in as fillers / part of the capsule, hence the trying out Dipan-9 instead. [Agreed. There are citrates and alcohols present in this which could quite easily have started life as a grain, but, if you can tolerate it, it may be an NHS product you can get from your GP, which may save some money.]
I have also tried Now Super Enzymes, but having spoken to them have now established that they do contain corn maltodextrin so am giving those a miss. [I have checked out NOW products and cannot recommend the range as TGF safe, but I do know a few of you are taking some NOW products OK so it is a question of checking each product meticulously as usual.]
I really hope that helps someone else, having spent some time researching all this and trying different products. [Carolyn has offered her email address if anyone needs her, or please simply comment below, thanks.]
What a star Carolyn has been to do that research and share it with us. We are all little experts in this in some way or another so it is great to start sharing it in our little TGF family, thank you.
Meantime, I shall try the DiPan-9, rejig the protocols as necessary and advise as I see you or you contact me. Let me know if you are on Bromelain and I will sort you out. I will be publishing the protocols in the not too distant future too so you can see how to get well even if you can’t see me; I can’t see everyone, there’s only one of me!
Phew. A LOT of work goes into this, you know! Nice to have some help. Sorry if my story bit was waffling on but I know it sometimes helps to see how someone else has got to their conclusions. I need to write it up properly in the About page sometime soon now I have more of a handle on what I think happened. Let us have some of your stories; I’m sure it will resonate with and encourage someone else out there.
Ok, end of waffling and back to enzyme drawing board… if anyone else has any useful info on digestive support, please do share so we can all learn, thanks.