Need help finding practitioner - Barely surviving - All whole foods make me feel severely ill.

[JamieRmusic]

Hello! My name is Jamie, I'm 31 years old and live in Norway.

 

Since 2011, I left Vancouver after a year of study and have been in and out of hospitals in Norway, but nobody can give me the proper tests to find the problem with my body.

I can't work, I can barely eat and I am laying completely flat in periods.

 

The list of symptoms is extensive, but I will keep this message on the short side.

I’m underweight, but have been extremely underweight in periods (49kg / 180cm).

It doesn’t matter if I eat 2200 calories or not, the body isn’t absorbing nutrients properly, and it makes me feel awful and at times completely strange.
My stomach has 0 beneficial bacteria, probably have leaky gut, and got inflammation (from what it feels like).

 

Is there anyone I could talk to about my problems?

I am looking for competent doctors, researches or places where I can possible get checked up in a more fast paced manner, as each visit to a hospital here includes a 6 month waiting period.
Not sure how much more my body can handle as I’ve been ill for over 10 years and severely ill multiple times.

Ps. I will travel the world to the right facility to get some proper help, because I am not living anymore. 

 

Thank you so much in advance.

 

SIncerely,

Jamie

[Ennis-TX]

2 hours ago, JamieRmusic said:

Hello! My name is Jamie, I'm 31 years old and live in Norway.

 

Since 2011, I left Vancouver after a year of study and have been in and out of hospitals in Norway, but nobody can give me the proper tests to find the problem with my body.

I can't work, I can barely eat and I am laying completely flat in periods.

 

The list of symptoms is extensive, but I will keep this message on the short side.

I’m underweight, but have been extremely underweight in periods (49kg / 180cm).

It doesn’t matter if I eat 2200 calories or not, the body isn’t absorbing nutrients properly, and it makes me feel awful and at times completely strange.
My stomach has 0 beneficial bacteria, probably have leaky gut, and got inflammation (from what it feels like).

 

Is there anyone I could talk to about my problems?

I am looking for competent doctors, researches or places where I can possible get checked up in a more fast paced manner, as each visit to a hospital here includes a 6 month waiting period.
Not sure how much more my body can handle as I’ve been ill for over 10 years and severely ill multiple times.

Ps. I will travel the world to the right facility to get some proper help, because I am not living anymore. 

 

Thank you so much in advance.

 

SIncerely,

Jamie

Have you been tested for celiac? If celiac is something you considering that might be plaguing you, then you need to be tested. You have to be eating gluten for 12 weeks to be accurate but consist first of a blood test then a follow up endoscope and biopsies
Open Original Shared Link
Have you had your thyroid and nutrient levels checked?
What other symptoms do you have?
What does your diet consist of? Leaky gut you should be avoiding dairy, soy, and keeping a food diary, and doing a elimination diet to find what foods work for you and what ones are causing issues. There are many other AI issues you might have or it might be something as simple as candida overgrowth or parasites, need to know more before we can start pointing you at which doctors to consult about a offical diagnosis.
...PS 2200 is not really alot of calories in my opinion...I eat minimum of 3000 a day at 130lbs 5'11"

[cyclinglady]

Jamie,

You have been a member for a while now.  I assume you have been strictly gluten free which indicates that celiac disease or a gluten sensitivity might not be the root cause of your current problems.  Ennis did ask about whether or not you have been scoped, scanned and checked for cancers, autoimmune issues, parasites, etc.   Hard to imagine that you can not find a good GI in Norway. 

[Jmg]

Jamie here's the contact details for the Norwegian Celiac Foundation:

Open Original Shared Link

They have volunteers across different regions of Norway. Hopefully they can help you find an experienced Celiac practitioner.

Best of luck!

Matt

[Rebecca S]

Hi, Jamie.

Four years ago, I got stomach problems. Since my grandmother had celiac disease, I thought I'd stop gluten. The stomach issues went away.

One year ago, I started to react (inflammation) to many foods. I have lost a lot of weight and am searching for answers. Here are some things I am trying or plan to try:

*The L.E.A.P. program--has helped me the most so far. You send in your blood, they test it and then tell you which foods you are sensitive to and which are safest for you. Various nutritionists and others have been trained in this. There are other companies, too, that do this.

Open Original Shared Link

*Allergy Associates of Lacrosse, Wisconsin. They test you and then mix under-the-tongue drops unique to your needs for both food and environmental allergies. They have some brilliant doctors who have solved difficult problems for some of my friends. They also train others in this "Lacrosse protocol" so you might be able to find practitioners elsewhere. You can call them and ask for names of those closest to you.

Open Original Shared Link

*Your own daily journal. Write down everything you eat, the time of day, what you are doing at times, and what medications you are taking at what times. See if you can find any patterns in good days and bad days.

Best wishes for you.

 

 

[JamieRmusic]

@Ennis_TX @Jmg @Rebecca S @cyclinglady

Thank you all for the replies!

Diagnose
I was diagnosed at the age of 2, but due to peer pressure and lack of knowledge back then, I ingested gluten containing foods up until the age of 19-20 (the most at age 19-20). Mostly because of delayed reaction which came days if not weeks or months after ingestion. It didn't click for me that it was gluten at the time, so I ignored the problems because nobody likes a whiner... right? It wasn't until age 18-19 that it got severe and the body has not recovered since. So 12 years, even on strict diet.

Tests
I've had blood drawn regularly, done CDSA 3.0 stool test (0 beneficial bacteria, +2 in candida, but it's not in the red zone... could be overgrowth? but no medical doctor takes that seriously, only naturopaths... I have not had any good experience with those and my trust int hem is slim), endo / gastro-scopy, sugar xylulose tests for celiac disease, found sarcoidosis on the lungs (but it's apparently not active and seem to have burnt out), food sensitivity test in Denmark for 115 food types (it has since then changed), + more. Going for a pet-scan this friday, as my IGG levels are raised. Done some parasite tests, but not cancer, nor does any doctor want to test for other AI diseases, as my symptoms does not match, and no matter how much I push they just ignore my requests. Usually get psychosomatic staple pushed on me, because I am so thin, they assume I just don't eat because I have an eating disorder - this is not the case!! I Love food, but not when they make me sick all the time. Smoking cannabis does seem to make me able to recover, but I cannot get it legally, nor with CBD as main cannabinoid, making it less than ideal, so I stopped. 

Diary
I've kept a food diary for years, but it never seem to be any system to all of it, as the symptoms changes and my reactions keep piling on. The reason my food selection is so slim is because everything else is a problem. I.e nuts = strong reactions, so strong I got an epipen.

Food Plan
Here is my food plan for 3 day rotation. All my blood drawn values for nutrients and minerals are great, so I'm really confused!! They sometimes show as great, other times far below.
Open Original Shared Link

NCF Norway
They can't help me, but I am awaiting a reply from their doctor who directly replies to people on their website. Will get an answer from him tomorrow. Thanks for the thought tho.

Eating 2200+ calories with my current meal plan is incredibly difficult. Grains, potatoes, sweet potatoes, heavy carb all make me sick to the stomach. Nuts are out of the question, seeds don't get absorbed nor broken down properly. Beans are also difficult on my stomach. 

Thoughts
Metal toxicity? Celiacs have 4x the amount of arsenic, mercury etc compared to your average person. SCD says focus on the main systems in the body: hormonal, digestive system, waste cleaning system. So the question then is, is it enough to see if values are correct with blood tests, or do they need to go deeper. Because the values are fine for all hormones at the moment.

[Ennis-TX]

38 minutes ago, JamieRmusic said:

@Ennis_TX @Jmg @Rebecca S @cyclinglady

Thank you all for the replies!

Diagnose
I was diagnosed at the age of 2, but due to peer pressure and lack of knowledge back then, I ingested gluten containing foods up until the age of 19-20 (the most at age 19-20). Mostly because of delayed reaction which came days if not weeks or months after ingestion. It didn't click for me that it was gluten at the time, so I ignored the problems because nobody likes a whiner... right? It wasn't until age 18-19 that it got severe and the body has not recovered since. So 12 years, even on strict diet.

Tests
I've had blood drawn regularly, done CDSA 3.0 stool test (0 beneficial bacteria, +2 in candida, but it's not in the red zone... could be overgrowth? but no medical doctor takes that seriously, only naturopaths... I have not had any good experience with those and my trust int hem is slim), endo / gastro-scopy, sugar xylulose tests for celiac disease, found sarcoidosis on the lungs (but it's apparently not active and seem to have burnt out), food sensitivity test in Denmark for 115 food types (it has since then changed), + more. Going for a pet-scan this friday, as my IGG levels are raised. Done some parasite tests, but not cancer, nor does any doctor want to test for other AI diseases, as my symptoms does not match, and no matter how much I push they just ignore my requests. Usually get psychosomatic staple pushed on me, because I am so thin, they assume I just don't eat because I have an eating disorder - this is not the case!! I Love food, but not when they make me sick all the time. Smoking cannabis does seem to make me able to recover, but I cannot get it legally, nor with CBD as main cannabinoid, making it less than ideal, so I stopped. 

Diary
I've kept a food diary for years, but it never seem to be any system to all of it, as the symptoms changes and my reactions keep piling on. The reason my food selection is so slim is because everything else is a problem. I.e nuts = strong reactions, so strong I got an epipen.

Food Plan
Here is my food plan for 3 day rotation. All my blood drawn values for nutrients and minerals are great, so I'm really confused!! They sometimes show as great, other times far below.
Open Original Shared Link

NCF Norway
They can't help me, but I am awaiting a reply from their doctor who directly replies to people on their website. Will get an answer from him tomorrow. Thanks for the thought tho.

Eating 2200+ calories with my current meal plan is incredibly difficult. Grains, potatoes, sweet potatoes, heavy carb all make me sick to the stomach. Nuts are out of the question, seeds don't get absorbed nor broken down properly. Beans are also difficult on my stomach. 

Thoughts
Metal toxicity? Celiacs have 4x the amount of arsenic, mercury etc compared to your average person. SCD says focus on the main systems in the body: hormonal, digestive system, waste cleaning system. So the question then is, is it enough to see if values are correct with blood tests, or do they need to go deeper. Because the values are fine for all hormones at the moment.

Ok so no nuts, but I know seeds can be harsh, when my gut is being a pain, I get seed butters like sunbutter, and homemade pumpkin seed butter, and often blend them into warm water to make seed milks for smoothies, Cocoa butter a option or pure unsweetened full fat cocoa? Candida...oh god that guy, had it for awhile, I did candida FX for treatment but it contains walnuts so probably not OK for you. But removing sugars, starches, carbs, and starving it out while eating stuff that kills it off like garlic and good probiotics helps. Fat/protein keto diet. I would suggest many other foods but I live on a nut and seed diet and I myself can not consume meats.....without tons of pancreatic enzymes and even then I produce a bad BO that they say is a sign of intolerance. On the Pancreatic Enzyme note, have you considered enzyme defienices as to a cause for failure to digest foods? Other thoughts you mentioned inconsistencies, this can be caused by a form of Mast cell syndrome, like eating certain foods in combination or so much in a period of time causes of sort of system build up, where you have to space certain foods and amounts consumed and avoid combining certain foods. Also some foods react together making them tougher to digest like spinach and anything with calcium....I know I hate these myself and mess up often.
https://www.celiac.com/forums/topic/119919-digestive-enzymes/
Open Original Shared Link

 

[JamieRmusic]

On 06/03/2018 at 3:07 PM, Ennis_TX said:

Ok so no nuts, but I know seeds can be harsh, when my gut is being a pain, I get seed butters like sunbutter, and homemade pumpkin seed butter, and often blend them into warm water to make seed milks for smoothies, Cocoa butter a option or pure unsweetened full fat cocoa? Candida...oh god that guy, had it for awhile, I did candida FX for treatment but it contains walnuts so probably not OK for you. But removing sugars, starches, carbs, and starving it out while eating stuff that kills it off like garlic and good probiotics helps. Fat/protein keto diet. I would suggest many other foods but I live on a nut and seed diet and I myself can not consume meats.....without tons of pancreatic enzymes and even then I produce a bad BO that they say is a sign of intolerance. On the Pancreatic Enzyme note, have you considered enzyme defienices as to a cause for failure to digest foods? Other thoughts you mentioned inconsistencies, this can be caused by a form of Mast cell syndrome, like eating certain foods in combination or so much in a period of time causes of sort of system build up, where you have to space certain foods and amounts consumed and avoid combining certain foods. Also some foods react together making them tougher to digest like spinach and anything with calcium....I know I hate these myself and mess up often.
https://www.celiac.com/forums/topic/119919-digestive-enzymes/
Open Original Shared Link

Yeah, eating without digestive enzymes is next to impossible. Need at least 1-2 each meal to have a fighting chance, else it comes out fully undigested. I try not to overcook the food, to keep the enzymes intact in the food and not having to draw as much of my limited supply. As for candida, treatment just doesn't seem worth it until I get my immune system in check. Else it will just flourish again after x time, if the real problems are not treated. Apparently the Candida FX is not gluten free :/ made on same band as wheat.

Have taken contact with every celiac association, found a celiac center in NYC driven by Peter Green (Columbia University), but also working on getting help from the Norwegian system to pay for all the tests. Praying that there is someone out there who knows how to solve this... 

It could be refractory celiacs... but hopefully not.

Here is a current list of symptoms I can think of:
- Tendon & join pains
- Digestion issues
- Migrains
- Light and sound sensitivity
- Headaches
- Gas & bloating
- On off Diarrhea, constipation
- Sleep problems (barely get any deep sleep, need melatonin to fall asleep)
- Hair loss
- Excessive mucus in nose / throat / sinus, and blood in nose (dried up nose walls)
- Sneeze & allergic reactions to foods (keep getting worse and worse, leaky gut? Cannabis gives it a reset if used over 2-3 weeks. Have stopped using it for a long time)
- Flushing of face (red / white around nose)
- Feeling of chronic inflammation
- Low body temp (36.3)

Thank you for the articles.

[Jmg]

Sorry the NCF can't help!  Couple of things that struck me reading your account Jamie. Obviously finding a doctor who has the relevant expertise is key, but maybe there's some things you can do in the meantime. For instance: 

On 3/6/2018 at 1:20 PM, JamieRmusic said:

I've had blood drawn regularly, done CDSA 3.0 stool test (0 beneficial bacteria, +2 in candida, but it's not in the red zone... could be overgrowth? but no medical doctor takes that seriously, only naturopaths... I have not had any good experience with those and my trust int hem is sli

Maybe some of the difficulties in digestion could be explained by an imbalance in your biome? Have you looked into probiotics and perhaps even Fecal Transplant:

Second, you don't mention any supplements? I tested within range for vitamins but benefit immensely from a zinc, calcium, magnesium supplement. I also do better with B complex supplement. Point being that I'm now slightly suspicious of the standard tests for these. 

Have you had IGE levels tested? Mine were elevated, I now think it was due to Casein intolerance, but that wasn't picked up by the standard UK testing. I realise you're not having dairy, so wondering if its worth eliminating any other possible contender from your already limited diet to see if you're reacting to it via an elimination diet protocol? That would tie in to the face flushing, sneezing, mucus etc. 

Ennis's Mast Cell idea is a good one and could be worth investigating if you can find that doctor.

Wish I could offer more than sincere best wishes from here in the UK, but sending them anyway!

Matt

 

 

 

 

[squirmingitch]

Jamie, Have you tried bone broth? Home made bone broth that is. It is extremely easy on the gut, quite healing, unbelievably nourishing. Check out these two articles:

Open Original Shared Link

Open Original Shared Link

[John1375]

Hey fellow sufferer me too it's all from lectins..GMO lectins do same disruption to cattle and chicken too from their soy potato and corn legume based feed....I also get uti bad sensations hot urine and irritated bladder, lectins are bacteria from plants immune system Google lectins and Monsanto high lectin foods: soy wheat peanut corn tomato potato yep all of it I can't rely on gluten free foods has to be gluten-free and non GMO brain fog issues are neurotoxins from lectins etc too kind me 20yrs believing I had msg issues, wheat gluten etc...takes time but the GMO lectins disrupt our mucus layer in gut

Open Original Shared Link

[Hdub]

Hi Jamie,

I’m a pediatric clinical pharmacist at a major children’s hospital in California. I work with GI specialist doctors to treat patients that are admitted in the hospital, mostly Crohn’s and UC patients with severe disease/flares/C. Diff/surgical needs. I’m not a doctor so I can’t diagnose or treat you, and am only sharing some treatments I’ve seen in that demographic and I don’t see celiac patients hospitalized. Many of the GI doctors recommend what is called an “elemental diet” to bridge Crohn’s patients to remission because it helps treat SIBO. It’s basically where you eat no food and drink only these drink mixes that provide you all your calories and nutrition for 6-8 weeks. It’s rich in vitamins and trace elements that patients within IBD are deficient in. The companies say 4 weeks, but our GI doctors recommend at least 6. It is hard to not eat food for 6 weeks for many, but it sounds like you can’t eat as it is and really have nothing to lose by trying it. This diet treatment is actually more widely used in Europe, so you should be able to find a GI doctor to prescribe it. There are medical studies done that show it is as successful as steroids to bring patients into remission with Crohn’s and in treating SIBO, so this isnt considered a natural or homeopathic treatment. Here is some information from one of the companies that makes it: Open Original Shared Link Another treatment that is gaining ground is fecal transplants. We are using them in patients with C. Diff as that is the only indication allowed here in the US, but it is another option for you to think about if you believe you suffer from overgrowth. They administer a capsule containing the Healthy fecal matter into your GI tract (like endoscopy,  you are under sedation) to reach the upper intenstines, and they administer a liquid enema rectally (like a colonoscopy also under sedation) if it’s the lower GI tract.  

I empathize with your frustration getting treatment. Although I work in the medical field, I’ve been struggling to find a doctor that can diagnose the disease that explains all my autoimmune like symptoms that suddenly hit me, and everyone else in my family in our 30s. I dug for answers to explain my all of my family’s weird onset of allergies, severe rashes, and symptoms long before it hit me. I found information on celiac disease from Europe, that clicked with us. I’m mostly of Scandanavian decent, my mother being full because that side of my family had always lived in Scandanavian immigrant communities here in the US since my great grandparents came from Norway. I found information from Europe which lead to my mother’s 2 year severe dermatitis herpetiformis rash, being diagnosed celiac, but her blood tests and endoscopies always are negative. Understanding of celiac disease, and treatments is even worse in the US than Europe so I think it’s a matter of finding the right doctor for you.