I'm a female twenty-one year old who is in desperate need of advice. (Excuse my bad english - I'm Swedish.)
The past two years, my health has declined in several ways. I've had diabetes t1 for 16 years, celiac disease for 5 years (and during that time I've had gluten by mistake about four times, that I know of) and IBS with reflux about 4 years. Yes, my bowel was in better shape before I went gluten free. My BMI is 18.
My main problem the last two years is that I've started to have both neurological and physical reactions to a lot of foods, including dairy, eggs, all starches, most fruit (oral allergy to some), all nuts and seeds, coconut (inlcuding oil), other vegetable oils, red meat (except pork and deer), chicken skin, vitamin-D-supplements, smoked foods, dired fruit, high-fiber veggies and, well, most foods.
I mainly eat fat pork cuts, shrimps, lean fish, boiled lettuce and brassicas, blueberries, some exotic fruits, pure sugar (to avoid ketosis) and oilve oil (which gives me heartburn). I don't do very well on this diet either, and I know it's lacking some nutrients, but it's the best I can do, I think.
I would like to eat a low carb-high fat diet, but when I skip my few carbs (the fruits and sugar), my gums start to bleed, my teeth start to ache, I loose weight (which probably isn't good since I'm already underweight) except for the "normal" low carb flu. This happens within a couple of days, and yes, I have tried supplementing vitamin C with no different outcome.
I have only had my period two times (much lighter than usual) the last year, and the last time I had it, I started to cough up blood and got a bad chest ache. An X-ray showed a small change in my left lung, but no doctor could tell me what was wrong. I believe it was endometriosis in the lung, since I've hade a lot of menstrual pain in the past, but never got diagnosed with endo.
I've been binge eating in periods for about six years, so I do not always follow the "I mainly eat" diet mentioned above. I usually eat dairy, almonds, fruits and a lot of sugar when I do.
Well, this was not all of my health problems but a few, and my questions are simply: What should I eat to gain some health back? Do you have any experiences with endo, type 1 diabetes and bleeding gums on LC (which goes away as soon as I have some carbs again)?
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I'm gonna give you a different advice. That bleeding gum is symptomatic of scurvy, which can occur on VLC diets. You need more carbs and a higher Vit C dose. It occurs because low insulin levels prevent Vitamin C from recycling. Since you have T1 diabetes, you would have near-zero insulin whether low-carbing or not. So the Vit C deficiency would magnify in a viciously cyclical way. Paul Jaminet of PHD had to supplement 4 grams of Vit C for 2 months to rid of all scurvy symptoms. Read his account thoroughly to understand your course of action.
You need short-term, high-dose Vit C (4-5g) administration and long-term, maintenance dose (2-3g) supplementation for your bleeding gums and to prevent other scurvy symptoms like cavities, slow wound healing, and dry eyes/mouth.
You have multiple issues: T1D, Celiac Disease, IBS, multiple food allergies, amenorrhea. I'm sure that's not all. T1D and CD usually progress and are accompanies by a thyroid disorder; the T1D-CD duality is usually followed by Hashimoto's in 70% of people. Then you become susceptible to connective tissue issues like RA and Lupus. These are all comorbidities. You should be under the care of an endocrinologist and hematologist / immunologist, who test your antibodies for these diseases regularly.
Here's the rub: your food allergies and amenorrhea may also be from undue carb restriction. You should restrict carbs, since you're diabetic. But if you fight what people tell you is a "low carb flu" and persist, those symptoms may give way to immune and hormonal dysregulation, especially as unexplained food allergies. The reason why this occurs is due to leptin, which is usually in excess when people start to very-low-carb. But once you're on that type of diet long-term, leptin becomes deficient and your body interprets carb restriction as starvation. At that point, not only does cortisol (in your case, male hormones as well) skyrocket, your immune system begins to falter and WBCs and immunoglobulins start to fall. If you already have an autoimmune condition, the chance of you developing hemolytic disorder increases. I've seen this often in those who low-carb long-term, who develop not only leukopenia but anemia, often of the autoimmune kind. See my comments in this thread:
Those food allergies could be a sign of Igg or ImgM deficiency, especially IgA, which is very common among Celiacs and manifest as multiple food allergies. It could've been low before your diet but it might have really plummeted when you went high-far/low-carb and started squeezing your thymus. Once you progress this far, you become susceptible to ear/eye infections, runny nose, bronchitis, pneumonia, etc. and life becomes really difficult at that point; you have to deal with both autoimmunity and immune deficiency.
The short answer is to stay gluten/dairy-free for your CD but any other food exclusion must be vetted thoroughly; you don't want to exclude legit food sources. Then add back sufficient carbs to stay well above ketosis. That should be no more than 60 grams daily for your BMI. But your carb sources should be starches (yams, sweet potatoes) or safe grains like white rice, i.e., digestible glucose, not fiber-rich green vegetables. That would be your best option for managing your T1D and CD; you're still low-carbing (but not precariously so) and you'll keep other malicious conditions from piling due to weakened immune and hormonal homeostasis.
I have type 2 diabetes and have some complicatoins from it, like gastroparesis and neuropathy. Neuropathy causes me pain that worsens significantly when I eat foods that are bad for my body. thus, it's very easy for me to tell when I ate something I shouldn't have (lots of pain). A LCHF (and moderate protein) diet has helped tremendously for me, but only if avoid most slightly hard foods. Even a tomato, which has lots of small, hard seeds, leads to long, uncomforatble indigestion for me. So, I've limited my diet only to very soft foods such as romaine lettuce, green beans, mushrooms, and avocados. Eating a fair amount of those foods (along with any meats, eggs, coconut oil and olive oil) every day is enough to get an adequate amount of nutrition. That's about the extent of my diet, but I don't mind because I feel so healthy eating it and there are a lot of mental benefits to it too for me. Also, I should note that cold food does not sit well with me. If meat has been in the fridge, I can't eat it cold, and must reheat it in the microwave before eating it. I hope these foods will help you to feel better, as they certainly have helped me greatly.
Have you tried probiotics? It's a simple way to improve your health a lot. I don't know if it will solve your problems though. For me it worked very fine, I'm in my 20s and had a declining health too (hair loss, joint pain,hypoglycemia,... the list was scarily getting longer year after year ) and it turns out I had a gut dysbiosis. You have to find a good quality probiotic though. I don't know about Sweden, but in France it's almost impossible to find, I had to import them from the UK and the US. Good luck getting your health back !
How do you eat, and in what way did it help you? How do you suggest to follow the AIP without being in ketosis, if I can't have starches and most fruits?
My short response is Celiac is genetic, so like me, you were diagnosed later (though you're almost 20 years earlier than mine!). I don't have type I but I have 2 other autoimmune diseases, including congenital lupus.
I *strongly* suggest AIP (autoimmune protocol). Many paleos rock dairy -- you should not. I'm not saying in several months you shouldn't try some grassfed dairy but with your conditions, right now? Get off that inflammatory stuff!
Like you, I have several foods that I cannot eat but it's not necessarily FODMAPS. This is a very individual thing, for everybody, but especially those of us with a laundry list of AI disorders.
I was lucky and had about 2 years of doctor supervised elimination testing. If this is possible for you, it would be very good to do. I wouldn't talk about 'paleo' per se, unless you know your doctor is well-versed in what it is. In my experience, they usually aren't. Again, obviously this isn't all doctors! My GP was the one to put me on AIP and conduct elimination testing upon HER suggestion, not mine. I stumbled across the paleo tag some months later.
You're young (relative to me) and this is a great step you're taking to get rid of inflammation from your poor body! Doctor supervision is best but in the least, search all you can about AIP.
Disclaimer: I'm not a doctor, and this is not a medical advice.
If you have so many allergies, and you have removed so many foods but you still have problems, I'd say the problem is possibly in the FODMAPs realm. If I were in your position I would follow for 1-2 months the Autoimmune version of Paleo (not plain Paleo) AND Fodmaps at the same time. This is an EXTREMELY restrictive diet, but I've had two cases recently among my friends where this is what it took to get better. After that time, you can add one Paleo food that you couldn't eat because of autoimmune paleo or fodmaps per week. For example, eat one egg, see how you go. After a week, try another one (obviously not from the type of foods that you know that you can get anaphylactic shocks). Keep notes.
So, I'd remove all 8 of the common allergens, I'd remove the rest of the stuff that Paleo removes, and also remove all what Fodmaps removes (e.g. brassicas, is a big one). Avoid coffee and caffeinated tea (have chamomile, or Greek Mountain Tea). No processed foods. No quinoa or rice. Few seeds only.
But at the same time, I'd ADD (which is as important as removing): *daily* home-made bone broths (slow-cook for 24 hours, add celery/carrot/onion in the last 2 hours, fridge up to a week, freeze in bags, microwave to drink as is, or cook with it), FATTY wild fish and have it very often (best are wild sardines and alaskan wild salmon), IF you can tolerate shellfish go for oysters, drink a lot of non-fluoride water (spring water), drink daily water kefir to replenish your gut flora (home-made, with organic sugar), liver/heart once a week, sea vegetables. Eat enough fat, and stay slightly out of ketosis (since it could prove fatal for Type-1 if they also drink alcohol). Good fats are also avocado oil in addition to extra virgin olive oil (it's also be good IF you can do coconut oil or ghee -- test them out after the first month)
Since this diet can be so restrictive, do have lentils, after you feel better, as long as you clean them (they contain barley some times), soak them for 24 hours and you get them well-cooked.
Other things you should do: go out in the sun daily, for at least 20 minutes. Walk on the soil during that time without shoes (as long as you're in a favorable climate, of course). Sleep for 8 hours by 10 PM. Avoid being too close on electronic devices for too long (e.g. cellphones, laptops, microwaves when they're ON, and turn off WiFi at night). Do a blood test to check for your B/folate/iron vitamins status, D3, and Magnesium. If your gut is leaky, chances are you're deficient in many vitamins (as I was, even if I was eating tons of Paleo food), so you'd need to supplement with these. Also consider a CoQ10 Ubiquinol (not ubiquinone) supplement, and K2-Mk4 with the "ok" of your doctor.
Eventually, hopefully most of your allergies go away as you heal your gut. To me, having so many problems, it says that you have an extremely leaky gut. You probably have the version of celiac that doesn't get better with just going gluten free, that needed to go off from all grains to get better. There are about 10% of celiacs that required a completely grain- and pseudograin-free diet before they get better. But if you leave it untreated for too long, your gut becomes so leaky, that all foods become a problem since they leak to the blood stream and the immune system starts going berserk. So it's important to fix your gut to stop this overreaction of your immune system. Broths, and more broths...