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Would love some suggestions re food issues

Postby taniaaust1 on Sun Aug 18, 2013 5:28 am

I didnt have any food issues at all till 10 years into ME and then suddenly developed food intollerances (to coffee, peanuts, cashews, artifical sweeteners, a green artifical colouring and some dairy issues), IBS, severe hypoglyemia attacks (which showed up very abnormal low glucose on blood tests) and MCS too. Then 2 years ago I developed hyperinsulinemia and despite being put on very strict low carb diet, my test results continue to worsen to now are almost diabetic to (I dont know if I still get hypoglyemia anymore). Ive seen 2 nutritionists and see 2 different specialists for my food issues but things are just worsening thou Ive been following their diets.

I get SEVERE reactions to carbs (if i break my no carb diet and have too many carbs, my GERD comes back which I used to be on prescription drugs for.. very low carb diet=no GERD drugs needed, I get more sore throats, more tiredness and worst of all I become severely emotionally unstable so people can always tell when Ive breached my very low carb diet even if Im trying to hide that I did. (my diet needs to be far lower then a diabetes diet as I react badly to the amount of carbs in those. My insulin levels are 3 times higher then the normal range on tests and maybe go higher at times). Ive hit people and broken windows with the severe mood swings I get from the hyperinsulinemia with breaching my diet and it turns my PMS into PMDD. I suspect cause I also have the mutiple chemical sensitivity with the ME/CFS that that may be why my reactions to the high insulin is so severe.

With complete dairy avoidance for a couple of years, my dairy issue with it giving me a headache went away (it didnt give tummy issues nor bowel issues just headaches from milk). Ive been tested for lactose intollerance and I dont have that. Is it likey to be casein in dairy Im reacting too? (I was thou getting milk for a certain goat for a while and was fine with that thou I wasnt fine with the shop goats milk).

For the past month Ive started to milk again, this time its presenting with symptoms my sister gets too with it thou she also gets diarhear (she too doesnt have lactose intollerance thou). My issue to milk presents differently to before (no headache) but now if Ive had too much dairy during the day eg cheese on my mushrooms or a yougurt, Im getting some kind of autoimmune reaction to it and waking up during the night sick ie feeling very generally unwell, sick in my tummy and also with my neck aching, the milk reaction affects my joints.

As my ME is too severe to get back to my specialists and they dont do phone consults, Im needing some ideas of things to add to what is now a very limited diet Im hating but arent having any other choice but to stick to it due to the bad affects I get when I dont. What makes my food issues worst is that Im usually too sick to cook for myself (I can not stand at a stove and often need to use a wheelchair). I do avoid gluten as I have the genotype for celiac disease showing on my tests and have several family members too with celiac disease and I feel slugglish when I have bread etc, I may of also recently developed an issue with eggs which were one of my staples as I now feel often sick after eatting those (my daughter goes into vomiting when she eats eggs). I also may have an issue with soy (a soy based protien drink gave me diarhearr so bad that I was wearing nappies as it make me completely bowel intolerant).

Anyway, have you got a few suggestions for breakfast, lunch and dinner for someone with all the food issues I current have? (I dont know if Im fructose intollerant too but my specialists have told me due to my carb issue to have no more then one small piece of fruit per day and no concentrated fruit juices, i didnt tend to be much of a fruit eatter anyway). Due to my insulin problem Ive been told I have to eat protein every meal.
taniaaust1
 
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Re: Would love some suggestions re food issues

Postby Sue Luscombe on Mon Aug 19, 2013 3:54 pm

Hello taniaaust1

I’m sorry to read of the many different medical conditions you are coping with. It is clearly very stressful and distressing for you. As well as ME you mention you are being treated for other conditions which, while probably not related to your ME, are very important to you, for instance GERD, (or in the UK GORD, gastric oesophageal reflux disease ), and hyperinsulinaemia, which is a condition when too much insulin is produced by the pancreas. I do feel that, at the moment, the hyperinsulinaemia is your immediate diet priority.

Am I right that you are avoiding gluten because of your family history and your genetic risk identified by a blood test of coeliac disease, but you are not actually diagnosed as coeliac? I would comment that it is atypical for people with GERD, (gastric reflux), to have reactions to carbohydrates. The main treatment for GERD is medication. With diet what tends to help are weight loss, avoiding high fat foods, spicy food, (irritants), caffeine and alcohol, avoiding large meals and refraining from lying down after eating. Because your medical conditions are complex and unusual you really need a dietitian with specialism in these areas to give you an individual plan based on your medical tests and investigation results, and to pull all the different threads together.

A dietitian could also explore if the sickness you are experiencing at night is related to anything you are eating. Because we all eat it is understandable that we might attribute our symptoms to food every time, while sometimes the symptoms would happen whatever we ate.
Keeping a food and symptom diary can help to see any patterns. Food intolerances and allergies, other than immune (IgE) food allergy, are often hard to diagnose as there are no proven blood tests to do this. I note that, next Spring, Talkhealth are running an online clinic on Food Allergies alone. It is a huge, complex, and often bewildering area. You may find the British Dietetic Association Food facts on Food allergy and Intolerances and testing useful:
http://www.bda.uk.com/foodfacts/Allergy.pdf; http://www.bda.uk.com/foodfacts/AllergyTesting.pdf

Some of the diets which treat specific conditions will fit together well for you. Avoiding carbohydrate foods and drinks, that will lead to a rapid or large rises in blood sugar, (high G.I. Glycaemic index foods), can be helpful in ME as well. However, this is essential in hyperinsulinaemia when the diet works by trying to limit the body’s insulin response. High GI carbs to avoid include fizzy drinks, sweets, cakes etc. Instead eating a little and often of low GI carbs, such as porridge, oats, pasta, potato (new), rice (basmati), fresh fruit, yoghurt, milk and other grains will help keep blood glucose levels more steady, and in your case help stop blood levels going too low. It sounds that you have been given specific advice from your specialist as to how much the “little” is for you, and you should stick to this.

I would recommend that you seek individual advice from a specialist dietitian, not a nutritionist, to give you more detail, including meal ideas, of the most appropriate diet plan for you. Nutritionists are not qualified to give you diet advise with such complex medical conditions. However it is obviously a great difficulty for you to do this, but depending where you live, there may be dietitians who will do home visits or possibly freelance dietitians to help you.
Sue Luscombe
Specialist Dietitian and Nutrition Consultant - R.D.
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Re: Would love some suggestions re food issues

Postby taniaaust1 on Tue Aug 20, 2013 10:47 am

Thanks for taking your time to try to answer my post.

I was on a a prescription drug for the GERD (Nexium) but dont need it now due to being very low carb. If I breach my low carb diet, I get the GERD right back again. Its very clearly the cause of the GERD I had or have if I eat like a normal person does without avoiding carbs. I see 2 specialists (not counting two dietians) for the insulin issue, one who is one of the leaders in the field of hyperinsulinemia. He says GERD isnt uncommon with hyperinsulinemia at all. Its great that after being on Nexium for a couple of years all the time, I was able to completely fix a symptom just throu diet alone and also helped several other of my symptoms throu diet. (He's actually found that quite a few people who were previously diagnosed with CFS and sent to him with food issues that all their symptoms were actually being caused by high insulin. He's fixed many "CFS" cases which in fact where people reacting severely to high insulin issues including one person who had been so sick she was in wheelchair like myself). I think the medical profession isnt up yet to the fact that this kind of issue makes some very sick and can give some a lot of symptoms.

"Am I right that you are avoiding gluten because of your family history and your genetic risk identified by a blood test of coeliac disease, but you are not actually diagnosed as coeliac?"

I was actually avoiding gluten things eg breads etc even before I knew I had the genotype for it, due to how these products can affect me, they make me feel very sluggish (and like sap my energy more, make me want to lay around and sleep). I havent had a bowel biospy done for celiac disease (one of the two gastroenterologists Ive seen was going to do it but then said it wasnt worth doing as Im already avoiding gluten due to how it makes me feel) so Ive only had the normal blood test for it (when I wasnt eatting much gluten) and the gene test too .

Im in a healthy weight range so unfortunately it isnt a case of me just loosing weight and helping things.

"Because your medical conditions are complex and unusual you really need a dietitian with specialism in these areas to give you an individual plan based on your medical tests and investigation results,"

I think 2 of the ones I saw in the past, the one specialises in hypoglycemia and the other specialising in hyperinsulinemia were dietitians (while the 3rd was probably a nutritionist). One of those dietitians ruled basically nearly everything I eat out of my diet (I ended up in tears cause I was left wondering what I was going to eat) but then didnt offer many ideas in replacement foods except what I call "rabbit food" (lettuce, tomato, cucumber) the stuff which isnt appetising to me (and just leaves me feeling hungerer then I when I started out eatting unless I eat massive amounts of meat with it eg 3/4 a chicken or 3-5 lamb chops (crazily with me eatting excessive amounts of meat 3 times daily my Ferritin came back borderline anemiac.. something my CFS specialists says he often sees). Her diet is the only one so far which has caused me no issues but its nightmarish and I often skip meals with it as I dont like the food and cant tempt myself then to eat it.

On top of seeing those, my specialist (he's GP but specialises in CFS and the type of methylation issues I have with a gentic issue) has written a book on diet which he has published in hyperinsulinemia but the amount of carbs in his diet give me symptoms or if I eat the amount of food he suggests of the things I like, Im left feeling very hungry which then will cause me to diet breach and then get sick. I also struggle to cook the things in his book so that puts a lot of the options out, his icecream recommendation had artifical sweetener etc I cant have and other things too. (I cried in his clinic as he just told me to try harder to cook when I told him I wasnt managing and told him I just couldnt due to the ME).

"Instead eating a little and often of low GI carbs, such as porridge, oats, pasta, potato (new), rice (basmati), fresh fruit, yoghurt, milk and other grains will help keep blood glucose levels more steady, and in your case help stop blood levels going too low. It sounds that you have been given specific advice from your specialist as to how much the “little” is for you, and you should stick to this."

That's my big issue, that's why I said in my previous post that I cant eat the normal diabetic diets which sound like what you are suggesting here. The low GI diabetic diets which also give me a lot of symptoms and my body cant handle as my diet has to be far lower then that in the carbs with avoidance of the low GI carb foods too as those also make my insulin go to high and hence I then get symptoms.

The only diet Ive been put onto so far which did stop my insulin symptoms (the dietian which specialised in insulin issues put me on this one, she has the same problem with insulin and symptoms as I do) was one which I was barred from potato, rice, pasta, cereals, pumpkin, carrots, bananas etc (all due to the carb). I was told only to have one piece of bread per day due to carbs, one small piece of fruit per day (due to the fruit sugars), 12 nuts etc. Free eatting thou of meat and all the rabbit food I dont like. And now that Im getting intollerences again to dairy..Im at a loss to do (as I was being reliant on things like cheese to make things I dont like like brocolli and cauliflower taste a better).

I was relying on having a yogurt with a steak for a meal (due to me not liking raw veg and not being able to cook a lot of the time). So right now its basically either a case of eat something easy and I like and get sick from the food, eat to not cause symptoms and force myself to eat something I dont like (I also have Aspergers and find it near impossible at times to force myself to eat what I dont like, I'll gag on foods I dont really like so rather go without), eat and go to effort to make something I like which wont make me sick but due to the extra cooking effort.. it makes my ME crash so Ive got post excertional symptoms the next day (and then end up in bed).

"However it is obviously a great difficulty for you to do this, but depending where you live, there may be dietitians who will do home visits or possibly freelance dietitians to help you".

If I ring a doctors clinic would they maybe be able to advise over the phone dietians who do home visits? or would I need to probably start ringing dietitians to ask them? or how do I get in touch with a freelance dietitian? Is there a society of them or something?.
Thanks

"I note that, next Spring, Talkhealth are running an online clinic on Food Allergies alone."
Thanks for letting me know about that, I'll probably check it out.
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