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Declining health, type 1 diabetes and food intolerances. How do I eat?

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Updated about 11 hours ago
Created February 12, 2014 at 5:24 PM

Hi paleohacks.

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)?

5acc87eb85a51c6e8b28e053aeedeb15
0 · April 20, 2014 at 5:55 PM

If you've got other questions don't hesitate to mail me at mate-corporation[at]live[dot]fr

5acc87eb85a51c6e8b28e053aeedeb15
0 · April 20, 2014 at 5:55 PM

My life has always been limited, so I guess I find it normal. The worst for me is going into relapse after hard earned progress. Hopefully it doesn't happen often, given I don't make any dumb mistake lol

5acc87eb85a51c6e8b28e053aeedeb15
0 · April 20, 2014 at 5:54 PM

The uncertaincy definitely sucks. Having to guess what's going on in there... Also the lack of control we have over the digestive system... so frustrating that it's just under the skin but there's so little that can be done, just wait for the food/medication to go trought it. I wish I could open a door and see it like a car engine lol.

well I thought low carb was working but no, it's clearly causing me fatigue. I was very skinny + my liver wasn't working properly to begin with so my experience is probably not a good example.

Medium avatar
0 · April 05, 2014 at 4:22 PM

Your diet sounds much healthier than the one I'm on right now, but unfortunately I can't have many of the foods that are your staples.

Does the cooking method matter a lot for you, except for temperature?

I get indigestion from tomato as well, but probably not because of the seeds since I can have passion fruit without any problems.

Medium avatar
0 · April 05, 2014 at 3:51 PM

Thanks a lot for your story. It's interesting to hear about your gastroparesis, since I have a "bit" gastroparesis as well (a bit slower emptying than normal). I'm not diagnosed with neuropathy, but I've had a lot of neuropathy symptoms since being on Flagyl for 24 hours in february this year. Dizziness, disturbed balance and tingling hands and feet are the worst ones.

Medium avatar
0 · April 05, 2014 at 3:32 PM

And, you know, when feeling bad enough, either you ARE enthusiastic about improving your health, or you give up. At least that's my reality. My life is very limited right now (very far from normal) even if I still consider it worth living, and if I can do anything to gain health and strength back, it would mean so much to me. I'm quite sure you understand what I mean.

Thank you. I wish you the best on your journey as well.

Medium avatar
0 · April 05, 2014 at 3:16 PM

I might buy some kefir grains, but I'm a bit of a coward when it comes to experimenting right now. I don't want to worsen things, and that might be the worst part with doing internet research and being your own doctor. It's so hard to be sure about anything. You can't do the blood work needed, and you only have your own body and mind to listen to.

How did you do initially on low carb, and how did you eat except for those tubers? I'm far away from going low carb again right now. The Perfect Health Diet's warnings combined with my own bad experiences has made me so uncertain about it.

5acc87eb85a51c6e8b28e053aeedeb15
0 · February 20, 2014 at 3:07 PM

It's cool that you're so enthusiatic about improving your health! I smiled when I read about your meeting with a nutritionist because it happened to me a month ago ^^. Hopefully we've got the internet! Still it's hard when you've got a lot of health issues, there's no easy way to get better, no simple cure. I feel my health problems are like a puzzle : After 4 months of reading tons of stuff and experimenting, the picture is getting clear, and I can see the end of it ! So there's hope for those of us who simply want to live a normal life :) I wish you the best on your healing journey!

5acc87eb85a51c6e8b28e053aeedeb15
0 · February 20, 2014 at 2:53 PM

It took me a while to switch to low carb, my meals where mainly carrots and beets. My liver wasn't working well so I couldn't digest fats. Now after 4 months I have 30% carbs, 30% fats & 30% proteins.

5acc87eb85a51c6e8b28e053aeedeb15
0 · February 20, 2014 at 2:41 PM

I had great improvement with bio-kult probiotic, which is the only one I took (except for the french one which were low quality). I know Ultimate flora's critical care is similar to bio kult and very popular in the US, so you may find it in NY.

Have you tried buying kefir seeds to make your own ? Here in France some people who make kefir regularly sell seeds for a cheap price, maybe you can find the same in Sweden ? The kefir you find in shops is usually pasteurized so I wouldn't be surprised if it had lost most of it nutritional virtues and bacterias.

Medium avatar
0 · February 20, 2014 at 5:31 AM

Hi! Yes, I have tried to eat probiotic cheeses in the past (very smart when having a casein intolerance), raw sauerkraut and some different probiotic supplements (which I suspect contained very dead bacteria since they failed fermenting milk). with no improvements. I am however going to New York for holiday pretty soon, so I might be able to buy good quality supplements and water Kefir then! Do you have any suggestions on brands and/or places to buy?

Did you eat Low Carb when on your elimination diet?

5acc87eb85a51c6e8b28e053aeedeb15
0 · February 20, 2014 at 2:22 AM

I have to add I also did an elimination diet similar to the one Eugenia describes in her answer. The Kefir definetely helped.

Medium avatar
0 · February 19, 2014 at 5:57 PM

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?

Medium avatar
0 · February 19, 2014 at 5:52 PM

Thanks a lot for your answer, Lily. You are right about dairy, and I will do my best to stay away from it. Lately I don't think I have been able to avoid it totally more than maybe two weeks at a time, and that might not be enough to notice all potential health improvements.

My experience with doctors where I live, is that they don't have much knowledge at all, and especially not diet and foods. I did meet a dietitian, but she didn't believe me when I told about all the foods I react to, and how I react: I wasn't "allergic" if their IgE-test didn't show it, end of discussion. Helpful!

Medium avatar
0 · February 19, 2014 at 5:27 PM

However, they don't sell wild salmon or sardines where i live, but we do have herring. Would that do? It's also hard to find water kefir, so I don't know what to do about that one.

I really can't have coconut oil and would do best to avoid all casein, so no ghee. This leaves me with olive oil as my one added fat. Is lard a better alternative?

There is no favorable climate to speak of where I live, which I find very destructive to my health. I feel so bad being cold all the time, and usually feel better in the summer. I will try to follow your advice, however. Once again: thank you.

Medium avatar
0 · February 19, 2014 at 5:11 PM

Except for the allergen contamination risk, why avoid processed foods (I usually only eat ham)?

Since I'm not able to digest collagen-rich meat cuts, skin, cartilage and most red meat, and have bad experiences with long cooked meat soups (but I haven't tried pork or fish yet), I'm not very hopeful about bone broth. It sounds amazing, but my stomach doesn't seem to agree. It might be an autoimmune reaction to the glucoproteins. I can't have onion (FODMAP) or celery (allergen) either.

I have a hard time digesting fatty fish, but it's not as bad as red meat. (See next comment)

Medium avatar
0 · February 19, 2014 at 4:57 PM

I have introduced corn syrup (pure glucose) recently to avoid excess fructose, and even if i know I have negative reactions to corn (only bowel) I haven't noticed any reactions to pure syrup yet. Could this be my main carb source on a FODMAP-free and Autoimmune Paleo-adapted diet?

How long did it take for your friends to get better, and what problems did they have to start with?

I can't have caffeine/tea/chocolate, rice, quinoa or even chamomille tea without getting very ill, so that won't be a problem. (See next comment)

Medium avatar
0 · February 19, 2014 at 4:45 PM

Thanks a lot for your answer, Eugenia!

I'm sure FODMAPS are a problem for me since I react badly to most fruits/vegetables (some of the worst are apples, onions and avocado) and notice symptoms of bacterial/candida overgrowth when I consume fructose rich foods. I also have negative reactions to goitrogenic foods, so it might seem wierd to still consume fruit and brassicas. But, I only do so to get SOME variation in my diet, and to stay out of ketosis, in combination with sugar. How can I avoid ketosis without these foods? (See next comment)

5b9a25a1a676397a25579dfad59e1d7b
2318 · February 13, 2014 at 2:13 AM

Agreed... Great answer

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15 · March 10, 2014 at 5:10 AM

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.

http://perfecthealthdiet.com/2010/11/danger-of-zero-carb-diets-iii-scurvy/

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:

http://paleohacks.com/questions/515808/low-carb-bad-on-long-term.html

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.

Af9e23fd927bacc1ad31e83db69f454e
0
0 · February 20, 2014 at 2:58 PM

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.

Medium avatar
0 · April 05, 2014 at 4:22 PM

Your diet sounds much healthier than the one I'm on right now, but unfortunately I can't have many of the foods that are your staples.

Does the cooking method matter a lot for you, except for temperature?

I get indigestion from tomato as well, but probably not because of the seeds since I can have passion fruit without any problems.

Medium avatar
0 · April 05, 2014 at 3:51 PM

Thanks a lot for your story. It's interesting to hear about your gastroparesis, since I have a "bit" gastroparesis as well (a bit slower emptying than normal). I'm not diagnosed with neuropathy, but I've had a lot of neuropathy symptoms since being on Flagyl for 24 hours in february this year. Dizziness, disturbed balance and tingling hands and feet are the worst ones.

5acc87eb85a51c6e8b28e053aeedeb15
0
0 · February 20, 2014 at 2:09 AM

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 !

Medium avatar
0 · February 20, 2014 at 5:31 AM

Hi! Yes, I have tried to eat probiotic cheeses in the past (very smart when having a casein intolerance), raw sauerkraut and some different probiotic supplements (which I suspect contained very dead bacteria since they failed fermenting milk). with no improvements. I am however going to New York for holiday pretty soon, so I might be able to buy good quality supplements and water Kefir then! Do you have any suggestions on brands and/or places to buy?

Did you eat Low Carb when on your elimination diet?

5acc87eb85a51c6e8b28e053aeedeb15
0 · February 20, 2014 at 2:22 AM

I have to add I also did an elimination diet similar to the one Eugenia describes in her answer. The Kefir definetely helped.

Medium avatar
0
0 · February 19, 2014 at 5:55 PM

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?

67871ef2326f29da48f1522827fc0f80
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704 · February 12, 2014 at 7:46 PM

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.

Medium avatar
0 · February 19, 2014 at 5:57 PM

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?

Medium avatar
0 · February 19, 2014 at 5:52 PM

Thanks a lot for your answer, Lily. You are right about dairy, and I will do my best to stay away from it. Lately I don't think I have been able to avoid it totally more than maybe two weeks at a time, and that might not be enough to notice all potential health improvements.

My experience with doctors where I live, is that they don't have much knowledge at all, and especially not diet and foods. I did meet a dietitian, but she didn't believe me when I told about all the foods I react to, and how I react: I wasn't "allergic" if their IgE-test didn't show it, end of discussion. Helpful!

3eca93d2e56dfcd768197dc5a50944f2
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11682 · February 12, 2014 at 6:54 PM

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...

5b9a25a1a676397a25579dfad59e1d7b
2318 · February 13, 2014 at 2:13 AM

Agreed... Great answer

Medium avatar
0 · February 19, 2014 at 5:11 PM

Except for the allergen contamination risk, why avoid processed foods (I usually only eat ham)?

Since I'm not able to digest collagen-rich meat cuts, skin, cartilage and most red meat, and have bad experiences with long cooked meat soups (but I haven't tried pork or fish yet), I'm not very hopeful about bone broth. It sounds amazing, but my stomach doesn't seem to agree. It might be an autoimmune reaction to the glucoproteins. I can't have onion (FODMAP) or celery (allergen) either.

I have a hard time digesting fatty fish, but it's not as bad as red meat. (See next comment)

Medium avatar
0 · February 19, 2014 at 5:27 PM

However, they don't sell wild salmon or sardines where i live, but we do have herring. Would that do? It's also hard to find water kefir, so I don't know what to do about that one.

I really can't have coconut oil and would do best to avoid all casein, so no ghee. This leaves me with olive oil as my one added fat. Is lard a better alternative?

There is no favorable climate to speak of where I live, which I find very destructive to my health. I feel so bad being cold all the time, and usually feel better in the summer. I will try to follow your advice, however. Once again: thank you.

Medium avatar
0 · February 19, 2014 at 4:45 PM

Thanks a lot for your answer, Eugenia!

I'm sure FODMAPS are a problem for me since I react badly to most fruits/vegetables (some of the worst are apples, onions and avocado) and notice symptoms of bacterial/candida overgrowth when I consume fructose rich foods. I also have negative reactions to goitrogenic foods, so it might seem wierd to still consume fruit and brassicas. But, I only do so to get SOME variation in my diet, and to stay out of ketosis, in combination with sugar. How can I avoid ketosis without these foods? (See next comment)

Medium avatar
0 · February 19, 2014 at 4:57 PM

I have introduced corn syrup (pure glucose) recently to avoid excess fructose, and even if i know I have negative reactions to corn (only bowel) I haven't noticed any reactions to pure syrup yet. Could this be my main carb source on a FODMAP-free and Autoimmune Paleo-adapted diet?

How long did it take for your friends to get better, and what problems did they have to start with?

I can't have caffeine/tea/chocolate, rice, quinoa or even chamomille tea without getting very ill, so that won't be a problem. (See next comment)

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